I Could Not Make This Stuff Up

The Storm Rages On...

2012-01-14T14:29:00.000-05:00

Just when I thought the storm was over, we were hit by lighting!!

It all started a few weeks ago when Erica started to complain that when she looked up, her "eyes would go black". She also said that she was very dizzy after these episodes. I took her to her regular doctor and he thought it was a virus. When it continued I sent out an email to her doctors explaining her symptoms. A few days later we had a regularly scheduled appointment with the geneticist. He said that he thought that her skull was starting to slip from the base of her spine. This is causing the bones to either impinge the arteries going into the brain or hitting against her brain stem.

I cannot believe we are in this position AGAIN!! I thought when the doctors fused C1-2 in her neck, that she was safe. Apparently this is extremely rare. But to be honest, no one knows what to expect because she was one of the first to be fused at C1-2 and one of the youngest.

The best scenario would be that it was just hitting against the arteries. Best scenario, she could have a stroke. Really?!! Come on, REALLY??!! A stroke? the worst case scenario obviously is death because she is hitting her brain stem and the brain stem is what controls things like breathing and heart beat. What the doctors are saying to us is there is a possibility that if she moves her head in the wrong direction, she could die immediately. Wow!!

How do you go on from there? How to you just sit and joke with her? She is wearing her neck brace and hating every minute of it. Do I tell her how dangerous it is to go without it and what could happen as she is trying to negotiate with me? Where is this in the book "What to Expect When you have a Child"?

Right now we have several doctors doing what they can to think of the best way to keep her safe. One doctor is calling other doctors from around the country to find someone that has experience in dealing with cases like this. She will be seen locally here in Cincinnati, but also up at the Cleveland Clinic. But this has been going on for weeks and only her regular doctor, the geneticist and a doctor outside of the Children's Hospital. If she simply had a broken arm, she would have been seen and on the way to healing. When it comes to her brain and we have to wait around!! God is calling me to wait upon Him, so I cannot argue with that.

Erica went for a CT scan the other day. It took over 45 min to convince her to get onto the table for the test. CT scans are very quick, but she had it in her mind that she did not want to do it. Through the screaming and crying we all discovered that she is scared to death to find out the results. To be honest, I feel the same way. I cannot imagine going through something like this as an adult, let alone an 8 year old going through this for a second time. She does not trust anyone at this point. She does not understand why the adults around her don't know what to do. When her eyes go black, she gets very frighten. When Erica self-limits her activities and decided to use a cane on her own because she is afraid of falling you know this is a miracle in and of itself!

All things aside, I know that I know that I know that she will end up okay in the end. People say I have a lot of faith. I am not sure what that means other than I have experience to show that God will never leave us. He has kept every promise and fulfilled every need just as we need it and sometimes even more than we could have ever expected. I would be a fool to stop believing Him now.

The hard part is getting to that "okay" status. The school called and asked that we agree to put her on home instruction. I understand their point and to be honest, if I were in their shoes, I would do the same thing.

We are so blessed to have so many of you that have prayed and supported us over the years. I believe that God has listened to your prayers and His blessings have rained down upon us. All I have to do is to sit in my kitchen!! Please continue to pray, please for CJ and Elizabeth and especially Chuck. This is very difficult for all of us.

"Mommy, I am WAY under dressed for this funeral!"

2011-10-02T20:04:00.000-04:00

Do you every get to a place and think to yourself, "How in the world did I get here?" I found myself asking that question as I was standing at my grandmother's funeral service rocking my mom jeans and trying to answer Erica's question as she was taking off the ER bracelet off of her wrist.

We had another one of those days a couple of weeks ago. My son had hurt his hand on the first day of fall baseball practice. Ball against finger- ball won. He broke it right on the growth plate, of course, and had to go in for a cast. This was scheduled for the morning of my grandmother's funeral. She had died the weekend before, peacefully. It was very hard on the kids as she lived close and they saw her quite a bit. This was their first funeral that they lost someone so close.

Anyway, I was driving CJ back to school and heading home when I got a call from Chuck that Erica's school called and said that her arm was hurting, had electric shocks down to her fingers and she could not put her shoulder back in on her own. I told him that I was close to the school and I would drop by to "pop her back in place." (Why do I think it will be just and easy fix?) I got to the school and realized that I could slide her shoulder back in place easily, however, it would not stay in place. So I called the orthopedic surgeon and said, "I can get her shoulder to slide back in place, but it will not stay there." (Remember these words, you will see them again. It is called foreshadowing, I think, in literary terms). I was told to bring her down to the ER to the main campus right away.

Okay, so we are off to the worst place we can think of in a 300 mile radius, the emergency room. Not that this particular ER is bad, it is just all ERs are stressful for everyone, but especially hard for kids with a rare orthopedic syndrome. We call it the "Horse and Pony Show" because the residents, med students and such want to come in and see the cool party tricks she can do because of the EDS.

Erica endures the poking, prodding, questioning and x-ray pretty well. The chief of the ER comes in who happens to be a friend of our regular pediatrician. He takes one look at her and we were shown the forms for permission for sedation so they can put her shoulder back in place. The next minute this very young ortho resident comes in and says that she needs another x-ray.

The x-ray he orders is one that required her to put her shoulder in a position that she thought would hurt her. The x-ray techs did not help by pushing her and yelling in her ear. I stopped the whole thing saying that her pain was not addressed and until she got something for her pain, we would not proceed. The medical student was trying to hurry her along so she would not miss her great-grandmother's funeral so he runs out of the room to tell the head of the ER about the resident. I guess they have a big fight over what to do, but the ortho resident is now calling the shots. I just love it when a resident pokes his nose in where a 40 yr vet of the ER has it under control!

The doctors give Erica her medicine and the ortho resident comes back in to explain that the x-ray is not that big of a deal. He promised that he would go in and talk to the x-ray techs on how to do it. Well, he lied, of course, and she and the techs screamed at each other until the pictures were taken.

After 6 HOURS this is what the orthopedic resident said to me, "I can get her shoulder to slide back in place, but it will not stay there." REALLY? "What are you going to do about it?" "Nothing, I can't do anything in the ER." You mean to tell me that after 6 hours, potentially missing my grandmother's funeral, painful x-rays, screaming and all the other fun we have had and this is all you can offer her? I told you this hours ago!!! I thought the top of my head was going to come off!!!

"Can't you even tape the shoulder in place so she can get out of pain at least temporarily?" He said he didn't know how to do that. Don't they have guys without med school educations that do that next to the football field every Sunday? "Yeah, but I don't know how."

Fabulous!!! Out the door with a girl that wants to rip off her arm it hurts so badly to try to make it to at least a little of the funeral. I was supposed to read one of the scripture verses during the service for her and I am in jeans, no make-up and I was pretty sure I remembered to brush my hair this morning...not so sure about my teeth. I can't remember the last time I took a shower because of course I would have time before the funeral.

We get there at least 15 minutes into the service. "Mommy, I am WAY under dressed for this funeral!" says Erica as we take our seats. "I know Sweetie, so am I, but Nana doesn't care anymore."

"Hope is a Dangerous Thing"

2011-07-31T22:28:00.000-04:00

Elizabeth made it through the surgery and is recovering well. She is less than 2 weeks out and already running! Her pain level is much lower than before the surgery. We saw pictures of what her hip looked like inside and it was a mess. The area that was filled with nerve endings was inflamed and frayed. The surgeon cauterized and shaved the tendon thus destroying the painful area.

All of this occurred up at the Cleveland Clinic. This place is huge! There are 3 hotels on the at least 29 block campus. In one area it looked like a mall with shops and restaurants. The day before surgery I think we walked the entire place trying to get all the tests completed so she could be cleared for surgery.

Elizabeth did stay over night after the surgery and I am very happy she did so. She spent most of the day after the surgery sick to her stomach. The surgeon said that he could not remember the last time he had an arthroscopic patient stay over the night, but it would have been a nightmare with 3 kids in the car and a 6 hour drive and having to stop while she got sick on the way.

The best thing about the surgery is that it has given Elizabeth hope. She now understands that pain is not a permanent part of her life. Sure, there will probably be times that she has pain, but it is not a constant. "Hope is a very dangerous thing!" (I can't remember the movie, but I like the quote)

Elizabeth is Human

2011-07-14T16:59:00.000-04:00

We are now a week away from Elizabeth's hip surgery. She is very afraid and is having difficulty expressing it. I think she thinks that she needs to be strong all of the time. We compliment her on how strong she is and even said that she was, "freakishly sane" for a 13 year old. She apparently is so upset by her surgery that she developed a "conversion disorder". This disorder is apparently common amongst people that have chronic illness. When the heart cannot express what it is feeling, those feelings are converted into a physical symptom, such as numbness, inability to talk or hear that otherwise has no physical reason for the symptom. The people with conversion disorders are unaware that the symptoms are not real.

Elizabeth is so strong and does not show her emotions freely to anyone. I think she is afraid to let herself go because she worries about everyone. She told us that she was afraid to express her sadness or fear because it would "make everyone feel badly."

I feel so badly for her right now that we have such an atmosphere in our family. I feel mostly to blame as it was my inherited disease and I am the one that I think she wants to protect the most. I also proclaim my faith and I think she needs to do the same. But her faith is different than mine and it needs to be developed over time. We reminded her that she is human and it is okay to cry and be scared. I think I cried every day when I was 13 and I didn't have nearly the stuff going on that she does!

It is really hard to know what to do in this situation so we are turning to a psychologist for this one. Of course the really good doctors do not accept insurance. Not that money should deter us from helping her, but it is a big pill to swallow.

I do hope that she is able to find some peace through this process and maybe everyone could be helped.

Also, this is a very sensitive subject, so please do not mention it in front of the kids. Thanks!

Erica is Doing Better

2011-07-14T16:37:00.000-04:00

Erica is doing a little better. I don't think she realizes it, but she is not complaining as much and she is not so dramatic at bed time. She is also doing more for a long time. I think this is directly linked to prayer. I thank everyone who prayed for her. I just have to convince her that she is doing better and to remember this time. Do I believe this is a complete healing? No. I had to come into her bedroom last night because she was in pain. She does not even remember me rubbing her back. I hope this is the start of a good period for her.

My Yoke is Easy...

2011-07-03T13:38:00.001-04:00

When is this all going to end?! We have lived in crisis mode for so long, almost 3 years, and I cannot take it! Right now my grandma is in the hospital with staff and MRSA. She had to have emergency surgery a couple of days ago to get the infection out of her knee. Being 91 with diabetes, I do wonder what God's will is for her.

My mom has not felt well enough to leave the house lately because of a major headache and sinus infection. She does not feel well enough to even go to the grocery store.

Elizabeth is unable to walk because her hip is "out" again. The doctors think that the tendon in her hip that is torn gets caught between the bones. It usually takes a couple of days for this to resolve for her. To top it off, she broke her ankle on that side. She is going to have surgery at the Cleveland Clinic at the end of July for her hip. Hopefully this will be the beginning of the end of her hip problems.

Erica continues to have back pain. At night her pain has been so bad that she begs to go to the hospital or heaven. We are still waiting to hear about her back. She has had testing done and a visit with the neurosurgeon and still no news on if she needs to have surgery for a tethered cord. If she does have this condition, then she will undergo a minor surgery that could get her out of pain.

I have been in so much pain that I cry every morning getting out of bed. My lower back is so bad that I cannot bend over for about 2 hours. The medicine I take kicks in and I can finally get around. The stress I am sure does not help. I really need to get over it.

While I was praying for Erica I got so upset about the outcome that I felt convicted by God. "I have plans to prosper you not to harm you, plans to give you hope and a future." (Jeremiah 29:11) God will be with us no matter what the outcome will be, surgery or no surgery.

I praise God that he continues to bless us as we are in this storm. Just as I feel like my strength is giving out, I am reminded that it is not my strength, but God's that gets us through. In today's Gospel, "My yoke is easy and my burden is light." Please help me lay down my burdens and take up the yoke of Jesus.

Give me Strength

2011-06-27T22:24:00.000-04:00

My anxiety has been so high, sometimes I feel like it is hard to breath. We are waiting to hear when Elizabeth's surgery will take place up at the Cleveland Clinic. All while Erica has been going through testing to see if she has a tethered cord. My mom has not been feeling well and my grandmother is hurt and not doing well either. I have been in so much pain when I wake up my back hurts so bad that I have to take medicine before I can move.

Please don't take this as I am unappreciative of all the blessings that have rained down upon us. I know that it is not right to be anxious right now as God has shown that He is right here with us, but I cannot grab a hold of that hope right now. I am not sure why while I know things on such a high spiritual level, yet these struggles still bring me to my knees doubting everything I believe.

I guess I would love to see my kids out of pain, but I am not sure that this is God's will. How do I deal with this reality? Am I able to praise Him while my kids are in agony? I do praise Him because I know that in the end all things will turn out for the best. All things will turn out to glorify God. Please give me the peace and strength to handle what he gives us. Please strengthen my children and family as well.

My Fun in the PACU

2011-06-01T09:49:00.000-04:00

I had my surgery to correct my loose screw in my spinal cord a few weeks ago. At the last minute is was rescheduled a week before the previous date because I think God knew I could not wait. Thank God my husband was flexible with his schedule so I could get in for some relief.

The surgery was pretty straight forward. I have had the top two vertebrae fused (C1-2) to put my head on my body, then I had C4-6 fused just 6 months later. The second surgery made me feel much better and I had relatively little trouble until recently. My arms were aching so much that it was difficult to do anything with my arms. My fine motor control was also declining because my fingers were numb and tingling. It is really strange to stare at a book or a dish and think, "I just need to take it over there.." knowing that this simple task would be not only painful, but probably impossible. It seemed to me that everything in my day involved my arms. Even a hug or talking on the phone. I knew it was time to go under the knife again.

I was more nervous about this surgery than with previous surgeries but I am not sure why. While I was getting prepped, the anesthesiologist came in to talk to me. She read my file very carefully and reveled many things that I did not even know about my own body. First, she said that I have a vessel in my brain that could rupture. She said that everything should be okay, but they have a helicopter outside in case it does during surgery. That made me feel much more relaxed! Then she told me that I should not have stopped taking one of my medicines because it put me at risk for a pulmonary embolism. I was getting calmer by the minute!

I warned her, the nurses and all of the other doctors that I dislocate very easily while under anesthesia, however, I guess the message did not get to everyone because I woke up with a dislocated shoulder. Before I could talk I was trying to communicate that my shoulder had to be put back in, but the nurses did not understand me. Finally, I regained my speech, and they told me that they were not allowed to reduce it! "Well, get someone in here that can!" They had to call in my surgeon, who is an orthopedic surgeon but specializes in spines to put it back in. Everyone in the PACU heard it pop! He probably had not reduced a joint since his residency. I really do not blame anyone for the dislocation. Before the surgery I was dislocating my shoulder multiple times a night. I would wake up and put it back in. But during the surgery, that lasted at least 4 hours and my time in the PACU, it was out too long. This caused extra pain because my muscles and nerves were really ticked off.

It is bad when you are still in the PACU and you realize that you need another surgery!

This was confirmed when I went to a shoulder specialist. He looked at the MRI I had done months before and said that I needed surgery on my shoulder. My shoulder is much worse now. He also told me that I needed to have the radial nerve release as soon as possible because I will lose the ability to control my hand if I leave them compressed for too long. So if you are counting, I will need a least 2 more surgeries soon. Great! Are we having fun yet?!

Surgery on the House and Body

2011-05-02T22:34:00.000-04:00

The house and the body are undergoing a radical transformation. In the last couple of weeks, our old kitchen was taken out and the process of reassembling it has begun. A wall was removed to expand the kitchen into our old dining room. This is the same dining room that housed Elizabeth for 1 1/2 years. We are all happy that this room is no more and will be much more functional in the future. Right now the ceiling of the new kitchen is gone and the skeleton of the cabinets are beginning to be installed.

Because the kitchen is in this state, we all are surviving on paper plates and the kindness of others. Our church has stepped up to bring us meals because of the difficulty of cooking any sort of meal during this time. Meals are further complicated because of the state of my health. A screw is pushing into my spinal cord at C-6 (toward the middle of the neck) and causing a lot of problems. There is pain in the neck area as well as weakness and a numb feeling in my arms and fingers. Most of the time I think it would be much better if my arms would just disappear right now because the pain is so intense.

Daily tasks such as typing, writing, making a sandwich, even turning a faucet are very difficult at this point. Still unable to take any powerful pain medication, little can be done to elevate the pain. This is why I am looking forward to my surgery. Last week I came close to going to the ER and asking them to just knock me out until the surgery. I am nauseous because of the pain. It is difficult to do anything! Just think, almost everything you do involves your hands. I am so tired too. My shoulders dislocate while I am sleeping. This causes me to wake up because of the pain in my shoulders as well as the numbness in my arms and fingers. Sometimes I have a lot of trouble putting my shoulders back in and I look ridiculous rolling around my bed trying to get my arms back in place! If it did not hurt so much it would be funny! I try to get things done in the house and it only causes more pain. I can't do my hair either. The pain is so bad if I try that I end up sweating like I have run a marathon just by brushing my hair. It is insane! I thank God that I will eventually regain the use of my arms. I don't think I will under appreciate them again.

Much to my surprise, God heard my cries and the doctor's office called and moved up my surgery date to Wednesday! My husband is so wonderful to change around his schedule to accommodate this curve in our lives.

So on Wednesday, a doctor will draw from my spine that which is pinching it and causing so much pain. Hopefully the relief will be immediate and permanent, but I know that given my mom's spine that is totally fused from top to bottom, my chances are slim in avoiding further surgeries. This is the nature of Ehlers-Danlos Syndrome.

Within weeks our kitchen will be fresh and new and easier for all of us to maneuver about and my neck should be fresh and new and easier to maneuver about!

We are so incredibly blessed by all that people have done for us it is difficult to express my true appreciation. Just know that God is a God of sufficiency not of insufficiency! I will praise His name forever!

Miracles on Top of Miracles

2011-04-21T21:48:00.002-04:00

So many miracles are happening in our family’s home right now. After a year of hard work on behalf of the members of Hearth Professionals and COTF the home is almost complete. The elevator is installed and came in the nick of time as Erica broke her ankle for the 5th time just days after installation.

Friends of ours helped take down cabinets in our home over the weekend so our new kitchen could be installed. In order to save many hundreds of dollars we had to order a new dishwasher that we knew we would not use from IKEA. It just so happened that these same friends were in need of a new dishwasher. They also needed a working microwave. We could not use the microwave that we just bought a couple of years ago so we were blessed to give them both. It is amazing how God can just see the whole of the situation and bless so many people with such small “coincidences”.

Each part of this project seems to be blessed beyond measure. For instance, one of the architects that is a part of Hearth went to discuss flooring options with an owner of a flooring company. The owner asked what the project was about during their conversation. The architect, Brian Schwiederman, explained our situation and the owner told him that he had gone through a stressful time with his son because of a brain tumor. His son is fine now, but he remembered how difficult it was to have a sick child so he offered to upgrade the flooring that they were considering at cost, minus 10% and install it for free! Brian was amazed as he did not even ask for any of it.

Another example comes from near the beginning of the project. Hearth Professionals were presenting our situation to a group of vendors and other professionals. Again, without asking, a man came forward that owns a company that does automation of switches for homes and businesses. He offered to wire the entire house so that lights would turn on automatically when someone entered the room. That doors would open and also there would be personal remotes for everyone in the house to operate most of the electronics.

When the subject of dishwashers came up, Marnie Renda, the occupational therapist that originally presented our situation to Hearth and COTF, suggested that we get a new type of dishwasher that is a single drawer. She thought two of these drawers would help then theorically we would not need to empty a dishwasher. One would be for dirty dishes and the other for clean. When the time came to order the dishwashers, Deb Witcomb, president of COTF, talked to the sales person. The salesman said that the price went up since they first discussed these dishwashers. Deb explained that the price increase put these dishwashers out of reach because of the budget. She also explained the project that she and the others were doing for our family. The salesman said that there is no negotiating room on the price as the distributer sets the price. Deb went home disappointed. Before she got home she received a call from the same salesman that said that he had called the distributer and explained our situation. The distributor not only honored the original price, but doubled the size of the dishwashers to a total of 4 drawer!

“Such light, such joy flows out from this house. It affects all who come here. You told Me it was My Home. I shall use it.” (God Calling April 18th)

The company that Hearth selected to install the tile in the bathroom also blessed us. Apparently that owner of the company had a few boxes of beautiful tile in his garage that he picked up at a low cost over 3 years ago. Hoping to use it one day, no customers wanted it. He brought it out to us and I loved it. It fit right into the color scheme of the bathroom. This is high quality tile that you would see in a 5 star hotel. This tile was installed in the house for free.

The $60,000 that needed to be raised for the project fell from the sky. Plans were made in the early stages to have a fundraiser, but they fell through. Instead, the girls were placed in a Level 1 waiver from the county that allocated funds that could be used for home accessibility. The problem was no one had ever used the funds that way. Sandy Donathan, our Support Coordinator, petitioned the state to use the money in this way. She won her case and the money was used to purchase and install the elevator and part of the kitchen. The other moneys have continued to flow in steadily over the last year.

18 months ago our family felt like it was being ripped apart. I remember vividly embracing my whole family in a circle screaming, “Satan, you will not triumph in this house! This house and the members of this house belong to the Lord! Now get!” Well, Satan continues to try. It seems with each incredible blessing some calamity comes our way like an ER visit or a broken bone, a sprained ankle or surgery. However, I still claim that we are victorious because Christ overcame the world. Now we see His victory over our circumstances in the form of this amazing transformation in our house. People who were strangers to us just 2 years ago have poured their hearts and souls into our “Extreme Home Makeover.”

I told Elizabeth and Erica that a man at church was extremely upset because, “his prayers had not worked. I wanted instant healing for your girls.” Elizabeth piped up and said, “We do have instant healing, it is just in our souls, not our bodies.” Others have suggested that maybe we are not healed from EDS because we do not want to be healed or that there is something within us that blocks our healing. What I say to that is I know that God is with us. He could not be more present to us is He were to sit in the room! I would take a lifetime of pain if it meant that God is so close to us.

Help Me Lord, For Your Mercy is Great!

2011-03-13T12:03:00.000-04:00

I spent the last week feeling sorry for myself and for my kids. Monday I went in for another epidural shot in my neck to relieve the pain. I am due for yet another neck surgery in May. The last part of the fusion is pushing against my spinal chord at the base of my neck. I saw the MRI and it looked horrible. It scares me actually. The pain is really bad in my neck, shoulders arms and fingers. Sometimes my fingers don't work the way I want. I am losing feeling in them. It is difficult to type. My arms do not have strength all of the time. Because it is inconsistent, I drop things and cooking is very painful and difficult. I feel like I am worse than I was before the other surgeries. Not only is my neck bad, but my shoulders are an absolute mess. The tendons are frayed and I wake up every night with my shoulder out of socket. It is really bad when both shoulders are out because then I cannot get out of bed! To extend my arm out for any length of time is almost impossible. Cleaning is hard and laundry makes me cry. I AM A MESS!

Currently I am applying for disability. I am doing this so that if Chuck needs to change jobs, hopefully I will have health insurance in the gap. I do not know if I will ever be insured by another health company again. To think about it makes me panic, so I am not going to dwell on it, but just complete the paperwork. I am only in my 40s and I am not sure that I will ever be physically able to return to work again. What is going on?
This is not the way it was supposed to be. When Chuck and I got married the plan was that I would stay home with the kids until the last one was in 1st grade, then I would return to teaching. I received my Master's degree right before having Wizzy. Our finances would improve and I would have the same days off as the kids. Because of not only my physical problems, but my kid's limitations, that dream has gone away. I have to grieve this dream because I had it so long. It is hard to think that I am no longer a viable worker. My nephew, that claims he is an atheist, said that basically I am a drain on society and should not share in the resources of the economy. He is young and and idiot, but it cuts to the heart of what people think. Why should your tax dollars support me? Why should you work hard and I don't?

I have to redefine what it means to be viable. I have to restructure my dream. I have just been surviving for so long that I have forgotten to dream. What is my dream of the future? Why had God put me and my family through all of this? I know there is a purpose, but what is it? Am I ready to understand or are there more trails and heartaches? Where do I go from here? How long will Chuck be able to take the burden of taking care of all of us and work? How many surgeries will I have to endure? How will I be able to take care of the kids? When do I accept help and when am I accepting too much help? There is not a rule book for this or a "How to Accept Being Useless in 5 Easy Steps."

I don't process pain normally. It takes over my thoughts and my spirit. I had a blissful 3 hours when the medicine used to relax me for the shot took away pain that I did not realize I even had. Not that I want to take drugs like that all of the time, but man it was amazing! I did not hurt anywhere for the first time since I could remember. This feeling made it all the more difficult to deal with the next few days. As soon as the medicine wore off I went into a spinal headache. The pain knocked me back. I could not concentrate or even walk straight. It took at least 3 days for me to begin to recover. A spinal headache happens when too much cerebral spinal fluid is in the system and it pushes against the brain. It is horrible!

On Thursday, I was beginning to recover. Erica had hurt her ankle the day before just getting out of bed. The ankle was swollen and for a second day in a row, she wanted to go to school in her "stinking wheelchair." She HATES her chair, but she could not put any pressure on her ankle. She has broken her ankle at least 4 times before and she would walk on it for days. She even would jump off of the x-ray table. This time was different. She was in a lot of pain. So I called her orthopedic surgeon about it. This was the second day and it was not getting better. They could not see her, but sent her to the fracture clinic. The fracture clinic is a group of orthopedic surgeons that sees a bunch of kids that might have breaks in the bones. These doctors do not understand EDS and it can be a long nightmare of an experience.

I was preparing to leave to get Erica to the doctor when Elizabeth told me about how she was feeling. Elizabeth feel at the conference she attended in Pittsburgh because she did not take all of her heart meds. She received a concussion. We took her into the doctor earlier in the week because of a constant headache and they told us to call back if she felt worse in the head, dizzy or nausea. When she got home from school she felt all of those things. I was going to leave CJ and Elizabeth alone just for a little until Chuck could get home. I called the school and talked to the nurse. She did not know about the concussion. She told me to talk to her doctor. I finally talked to the doctor and they told me to bring her into the ER for a CT scan of her head. Well I was already in the car trying to get Erica to the fracture clinic.

I called Chuck and told him that he had to take Elizabeth to the ER in Liberty. He stopped and got dinner for them. Elizabeth refused to eat. By the time she got to the ER she had a fever.

The doctors in the fracture clinic said that Erica at the very least had a broken ankle on her growth plate and probably damage to her tendons. This is her 5th ankle fracture. So she got fitted for another cast. She was crying because she knows that the cast means that she will need to use her wheelchair. She went to the spinal surgeon last week and her back continues to get worse and this was before she broke her ankle. Any change in the gait makes the pain even worse. He has warned us in the past that her mid back is so loose that she could eventually not walk because of it. He had already suggested an increase in her pain meds because of the back pain.

Anyway, she was really upset. I was driving back from downtown and talking with Chuck. He had just gotten to Liberty Children's. So I met him there and switched kids. Because of my upcoming neck surgery and constant shoulder dislocations, it makes it very painful to load and unload her wheelchair.

The ER had just evaluated her quickly her so I got her registered. It was pretty busy but eventually she was brought back. She looked terrible. It was obvious now that she had a fever, which did not follow the concussion symptoms.

We got back and talked to the doctor. I had to explain the recent diagnosis of the subluxation of her C1-2 to 70-80% but because she does not have other symptoms the decision was made not to do the fusion surgery. We also had to explain her condition that is actually worse than POTS and the hit to the head along with the EDS and other fun stuff related to it.

Anyway, she started to make calls, but we agreed that the fever did not fit the concussion. She decided to do a strep test while she was waiting to hear back from some of the other doctors about the CT. Because she had just had the rotational CTA with dye to see if her vertebral arteries were occluded when she turned her neck which was the reason she is not having the surgery, they did not want to expose her to more radiation.

When the doctor came in and said that she had strep we all let out a scream! I have never been so happy to hear that my kids was positive for anything! After 7 straight hours in the hospital, we were finally on our way home. Mind you, I am still in extreme pain and can barely move.

Soooo yesterday I took Erica into the doctor for a strep test and she was positive. Now I am feeling like I have strep as well. I will go in on Monday before I have to take Erica in for an heart echo.

Okay, enough complaining. Tomorrow I will hopefully feel better. I know that God is right here and His sufficiency is boundless. I ask for faith to understand that His timing is perfect and He will make me whole and healed in the way He sees fit. It might not be the way I planned or expected, but He is so much more than me and knows what I need before I even ask for it. Help me Lord, for your mercy is great!

Glory Be to God!!!!

2011-03-06T09:50:00.000-05:00

Elizabeth will not need to go through the C1-C2 fusion surgery, right now. I say right now, and this will sound ridiculous, the only thing wrong with her is that her head comes off her body at least 70%. The problem is the doctors do not know what is considered normal. We cannot risk surgery based only on that test. The risk would be worth it if she was turning her neck and the arteries to her brain were being pinched. She went through a series of tests to determine if this indeed was happening. According to the tests, she is okay. She is not having numbness and tingling or severe headaches or neck pain. She is also not having any changes in her brain or spinal tissue. Given all of these factors as well as the fact that she is still falling and this could be deadly while recovering from the fusion surgery, we all decided that she is okay for right now.

That CTA that was created for her turned out to be a huge blessing. We did not need to guess or try to figure out on the operating table if the arteries were being compromised. Praise God!

While preparing for the CTA, the decision was made to take her off of some of the medications that she takes to control her blood pressure and heart rhythm. She crashed pretty hard. She had difficulty walking, paying attention and was very dizzy. This gave us additional information that the neck is not the culprit in the blacking out episodes.

Right now she will not need to wear her neck brace which is such a blessing for Elizabeth. This is the part that I cannot explain to the doctors. Before we went into the appointment, Chuck, Elizabeth and I all decided to place the final decision in God's hands. We asked God to speak through Dr. Durrani. God is the one to be praised here. It was our willingness to let go of control of the situation and allow God to direct our path.

This is not to say that she will never need the surgery. She will be followed by Dr. Durrani and if and when she does develop any of the symptoms mention above, we will know the source and know what to do for her at that time. Until then, we will trust that God knows what He is doing. It is a leap of faith to know that your daughter's head is not attached very well and be okay with that. We cannot live in fear.

Currently she is attending a conference on leadership. She fell last night. I am staying the same hotel and the directors of the conference called me right away. I took her to her room and discovered that she had missed a total of 4 of her scheduled medications. I think we found our smoking gun! I was able to give her her medication, some salty snacks and lots of water. She felt so bad when she realized that her fall was due to the lack of medicine.

After about 2 hours, she was able to return to the conference and even participate in a variety show that she had organized! Her classmates cheered when she sang a song in Japanese.

God is so good!

Where Is the Parenting Book?

2011-02-22T02:59:00.000-05:00

Seriously, when you think about being a parent or doing the act that could create a child, do you stop and think, "Will I have to decide to surgically attach my baby's head to his/her body?" Where is that in the "What to Expect" book? There are subjects not touched by that book. Maybe there was a parenting book that was supposed to come home with us when we, blissfully unaware, took our baby home for the first time. If there was one, I must have lost it. I still believe there is one out there that explains the rules for talking about why kids pick on kids at school or how to explain that Mommy's time in the bathroom should be "alone" time or the number of sick days a parent should get.

Even in the best book, I am sure there is not a chapter on how to explain to your 13 year old that she will have to have her head surgically attached to her body because when she does turn her head it comes off at least 70% of the way. Even if it had that chapter, I am pretty sure it does not explain the ins and outs of checking to see if she is hitting her vertebral artery in the process thus explaining some of the instant passing out she has done for the last year. As far as parenting goes, I think Chuck and I are the first to have two children undergo this procedure because of EDS.

I have a choice, I can ask why my kids? But this will do no good. (I've already tried it and it really does not do any good.) I could get really mad at the doctors for taking so long to diagnosis this, but to be honest, they are creating a brand new test just for Elizabeth to check to see if she is hitting her vertebral artery. I could get really scared and place her in a bubble until she has the surgery and worry every minute that if she turns her head she could have an instant stroke and die. (This is a real possibility by the way)

OR I could trust that God has taken care of her up until now. I can realize that we are ABUNDANTLY blessed! We live in the city with the best doctor for the job. If you read the previous post you will see that the modifications for the house are continuing and I am still unsure how we got all the funding we did to get this far. She will still alive and will be after this surgery over. I know that I know that I know it. I have REAL peace about everything and I believe this is a result of the many, many prayer said for us over the last 3 years. I know that it is peace from God because I am not strong enough to muster that much peace over the parking place I choose on my own, let alone a surgery that has the potential to be deadly.

There is a good amount of freaking out in my house right now and there will be more to come, but we are doing this together with God. He created the Heavens and the Earth and that little gnat that bugs us. He can handle attaching her head.

It Has Been 3 Years and I Want Off This Ride!

2011-02-22T02:37:00.000-05:00

I know I have talked about changing the name of this blog, but today it is so true. I could not make this stuff up. I am going to start with the good, but it is very good. It is "blessed beyond belief" good. First, our elevator is installed and works! We have an elevator in our house. Do you have any idea how cool that is? This allows my husband and I to sleep in the same bed for the first time in 1 1/2 years! The elevator also means my daughter can move back to her room with a DOOR. This is incredible. God's grace is sufficient!

Work will continue to be done on the handicapped accessible bathroom tomorrow. The bathroom is drywalled and painted. Tomorrow the floor will be tiled. This bathroom will allow all of us to take a shower safer. It will also have a raised toilet seat which will put less pressure on my daughters hips, therefore, reducing her pain.

Plans for the accessible kitchen are in the works. The architects from Hearth Professionals made up some amazing changes that will hopefully allow all of us to cook in the kitchen with less pain and injuries. This is a miracle if you think about it. Just one year ago we were just talking about all of this stuff and now it is happening!

Just as crazy good it has been, there is another side. I do not want to take away from the appreciation that I have or the glory to God I give in sharing all of the following, but it is what it is.

Last Wednesday I got a call from my mom that my grandmother was in the hospital. She asked that I go in the next day as my mom was in a lot of pain and that day would be the 3 year anniversary of my dad's death in the same hospital. My grandma had to go into the hospital because she fell and hit her head. She was apparently bleeding from the rectum. When I went in that morning I found out that she had 2 transfusions. She was preparing to have a colonoscopy that day and the nurse asked if I would stay so that the doctor could talk to me. I ended up staying for 10 hours changing my poor grandmothers diapers every 30 minutes. The nurses were not able to come in quick enough and my grandmother could not make it to the bathroom. It turned out that she had a bleeding ulcer as a complication from her last surgery when my mom was in ICU a couple of years ago. The doctor put a clamp and medicine and she will be fine. She is a tough old bird!

I spent part of Friday with my grandma, but I had to go home so that I could take Elizabeth to get more imaging done of her neck. The neurologist said that she might be hitting an artery going to her brain that is causing her to pass out suddenly. This complication could mean that she could turn her head and have a stroke or die instantly. We had to go back twice because the techs messed up the imaging.

Saturday I spent in the ER with my mom. She was having such bad spasms in her back that we were unsure if she broke her back again. It turned out that it was just spasms and no breaks. Praise God, but she is still in a lot of pain.

All of this during the week that my dad died 3 years ago. My grandma was in the same hospital on the same day as the anniversary of his death. It has been 3 years, I am really tired!

Ignorance is Bliss?

2011-01-06T16:41:00.000-05:00

Today, Erica had her yearly appointment with the neurosurgeon. Everything looked good. Her "hardware was in tact." (What an awful thing to say about some one's child).

I told the nurse about my neurologist's theory about the bleeding in my brain out of earshot of Erica. She, in turn, told the neurosurgeon. Basically, if there are genetic factors to the bleeding in my brain, there is nothing he can do for Erica or Elizabeth for that matter. The blood vessels in the brain are so tiny and numerous. He said that we could do an MRA (fancy MRI) to check for bleeding, but then what? We can do nothing to stop it, prevent it so why know?

Okay, this is my baby's brain we are talking about. I can barely accept there is nothing they can do for my brain, but for her? SHE IS 7 YEARS OLD! He told me like there was a mole on her back or and ear infection.

So, again, I have a choice. I can live in fear of her bleeding in the brain or go on and not fear. How much more of this will we have to take. It is like a horror movie that does not end an gets worse with each scene.

Theoretically it is a miracle that any of us are here, alive, functioning, moving and surviving, given the scientific odds. God's grace gives us the chance to be on Earth so we can yearn for our real home-heaven.

She is Right in More Ways Than One!

2011-01-02T19:40:00.001-05:00

My daughter is 7 years old. When she was 5 she had a C1-C2 fusion. She told this story: " I met a girl yesterday. I told her that I had to have my head attached to my body. The girl said 'Wow'. My daughter continued. It's okay I am screwed now!" You have to laugh every once in a while!

A Sigh is Just a Sigh...

2010-12-26T21:58:00.000-05:00

Our family had a good Christmas. We ate too much; stayed up too long; made a mess; went to church; made cookies; saw family and friends and generally had a normal Christmas. It was glorious! I rode home in the back seat of our car with my son yesterday and he put his head on my shoulder and whispered, "Merry Christmas" with a sigh. It was the best gift ever to hear- that contented sigh.

I cherish contented sighs. I long to hear them. I want to create them, though I know I cannot. I do everything I can so that my kids will have a contented sigh. We all do if we think of it. A contented sigh means that all their needs are meet, physically and emotionally. The sigh means that they are met so abundantly, that satisfaction is putting them in a relaxed happy place. This is a place free of pain or worries. A thought that all is right with the world right now.

I just wish I could hit the pause button on that moment and others like them. I don't think I am the only one that does not hear contented sighs from those around me or makes them myself. Why is that? Why do I not sigh contentedly more often? I have many things in which to be grateful, but do I sit back and contemplate them and recognize when I am contented, satisfied, or happy?

No, I don't. Usually I am thinking about the next thing I need to think about or worry about. Worrying never produced one contented sigh.

A Fresh Perspective

2010-12-06T09:40:00.000-05:00

Elizabeth is home from the hospital. She is stronger than she has been in a while. The work she did while on the physical rehab floor was amazing. Her endurance increased as well as her strength and her pain levels decreased. I think the hospitalization was a success.

However, one of the reasons we wanted her in the hospital is so that we could get all of her doctors to discuss the falling issue. Not all of the doctors were in the meeting, specifically her regular doctor, who called the meeting together; her neurosurgeon and her spine surgeon.

All of the other doctors said that she looked great, to which we agreed. They also said that they did not think her falling was due to the POTS (the heart issue). We also agreed that her POTS is being controlled with medicine. No falls occurred while she was in the hospital so they had no idea why she was falling.

The absence of the key doctors not withstanding, they had no theories, but even more important, no ideas on how to keep her safe. In fact, they suggested that she walks more places and more often. Is it just me, or does this sound crazy. The only places we have really let her walk are the YMCA, where she has fallen at least once and had to leave in a life squad; our house, where she has suffered concussions, torn hips and other damage; church where she has left in a life squad and they bought a backboard just for her and some friends houses where she has left in a life squad. Do you see a pattern? Oh, by the way, the reason she was restricted is based on their advice.

I asked, so if she falls in a store, what am I supposed to do? Just let her lie there a couple of hours so she can put all of her joints back into place? Honestly, I don't think these doctors understand real life. In theory, letting her walk more places sounds good, but in reality, it is crazy.

So... as a family we had to decide what to do on a daily basis. Our decision was to not live in fear. We cannot live our life fearful of the next time she falls. Fear is the opposite of faith. Fear puts us in prison and that is kind of what Elizabeth's life has been like for almost a year. We are going to let her walk more and go more places. We are going to do it safely and with supervision, but ultimately we have no choice.

We are not, however, going to give up trying to find out why she is falling. I think some of the recent falls can be attributed to her POTS and we will do everything in our power to keep her medication and water levels correct so she does not fall, but we need to know more about the instability.

She will go to a neurologist soon to check her brain stem. I do not think they will find any abnormalities, but it was suggested that this be done. We will also check in with her spinal surgeon in February. Hopefully this will give us enough time to rule all other possibilities out and make an informed decision. Despite what the doctors think, I do not want her to have the C1-C2 fusion. To me, the surgery would be of last resort.

All of these thoughts were going through our family as we brought her home last week. We were sad, frustrated and a little angry about the meeting. We were all discussing it when Erica said, "Elizabeth is home! Our whole family is in the same house. I cannot stop praising God!" When things look bleak, a fresh perspective is sometimes all you need!

Acceptance with Joy

2010-11-21T09:48:00.000-05:00

Elizabeth leaves tomorrow for the hospital. We have to have an ambulance come and get her to take her down because she is still unable to sit up. She has been approved for a week stay. This means that she will be in for Thanksgiving. This is hard, but I think it is best to get her moving as quickly as possible.

The danger, in my mind, is that we will be able to get her up and moving, but the falling will continue. This was also on the mind of her doctor as we discussed the whole issue of Elizabeth's problems right now. We had taken a short break from this doctor when we were told by one of the orthopedic surgeons that she also had C1-C2 instability. He was not around when all of the fights took place about if she does or if she does not.

Where we left it is that we would wait. This doctor brought the subject up himself and said that he thinks that she has the instability. He wanted me to take her to her doctor to see if she did. I told me that she was found to have it. He said that the POTS alone could not be causing all of this falling. He also said that it is difficult to believe that her sister, mother and grandmother all have this issue and she does not.

His theory is that she is turning her head in a certain way causing her to pass out.

How am I going to make another decision to put another child through brain/spine surgery? The doctors are divided. If this surgery would occur, it would have to be in adult hospital.

She does not know about the neck issue right now. If you come from her perspective, she will probably not be able to walk and she will need this awful neck surgery to attach her head!

I have been praying very hard about all of this. The answer that I got the other day is three words, "Acceptance with Joy."

Really???! How am I supposed to have acceptance with joy? Do I just fake it? I can count my blessing and think it could be worse. I can thank God that there is a surgeon willing to do the surgery, but acceptance with joy...?

I am going to need His help with this one. I am going to need everyone's help with this one! I know what that surgery feels like. I do not know what it is like to know that walking is not going to be easy or even possible all of the time. She would also know that many more surgeries are likely.

I am not at the acceptance with joy right now. I am mad, frustrated and confused. Lord help me to see your Goodness in this.

Hosptial Bound

2010-11-18T07:51:00.000-05:00

Because Elizabeth has not been able to sit up now for over a week, things are deteriorating quickly. Muscles are getting week, bowels are not moving, other parts of her body are in pain and I don't know what to do. I can't even get her in the car! Even if I could get her up on her feet, she is passing out so much that I am afraid she will fall again.

So, given all of that, she is going into the hospital soon. I say soon, because we are still waiting to hear about insurance. All of her doctors agree that going into the hospital will help her at least get to the seated position, however, they can do nothing to repair the damage in her hips. Really they are just going to force her to move. If that does not work, they will give her an epidural.

This plan is obviously very disappointing as we had hoped that something could be done to correct the damage in her hips. Both hips are torn meaning there is very little keeping the hips in place. This also means that the tendons get caught between the bones causing extreme pain.

The surgeon does not want to try to surgically repair the tears because he said it would be like sewing into tissue paper. The way to get to the tear is only through the actual hip sock which would entail breaking the socket and putting it back together. This could lead to more dislocations and eventually hip replacements.

If you follow this logic out, the prospect is bleak at best. She falls if she stands up hurting herself severely, and if she stays seated, she tears her hips!

Add all of this to a doctor's appointment for my other daughter. She was diagnosed with AD/HD yesterday. This was not a surprise, however, the medication for it will interact with the current medication she is taking causing potentially deadly interactions! Nothing can be easy!!!!!!

It would be easy to despair right now if it were not for the "angels" in our house right now working on the elevator and bathroom. In fact, on Tuesday, I was very upset because I was waiting to hear from the doctors about Elizabeth. I was so tired, it just plopped down next to her in bed. I closed my eyes and I could hear not only the construction crew, but also 4 cleaning ladies that friends of ours sent to our house to help us. It was such a blessing to know that God's hands were ministering to us at that moment. All of the anxiety that I had melted away. If God can make all of this happen, He will take care of Elizabeth and Erica too.

What Do You Say?

2010-11-14T00:41:00.003-05:00

What do you say to your daughter when she has torn both of her hips and the doctors cannot do anything for her? What do you say when you realize, and so does she, that she will probably always need a wheelchair; there will always be pain; things will never be "normal" for her?

One way to deal with it is to not talk about it. Avoid the subject. Just think of the positive.

She does not ask me about the future, I catch her saying things like, "I don't want to have kids." or "I wouldn't want to do that anyway." when she is talking to others. I can hear the pain in her voice.

We have talked around the subject of the future by saying that no one knows the future, which is true. I can't explain why God has chosen her to go through such hard times.

Her tale, will not be an ordinary tale. The story of her life will be, most probably, filled with pain, sorrow, loss, and frustration.

Because she is forced to reckon with such large obstacles early in life and the fact that she has hurdled most of them with the ease of an Olympic athlete, she will, most probably, also have a life of resolve, joy, perseverance, strength, and faith.

When you look at the reason we are here, to love God with all of your heart, mind and spirit and to love your neighbor as yourself, how do you think she will do?

In the middle of all of these storms, God has been very tangible to our family. We have been held in prayer by so many people. Supported with efforts that are well beyond human ability. Our needs satisfied by the Creator of the universe, do you think God is going to waste this person?

She received a letter in the mail the other day from the members of Congress stating that she has been nominated to represent this area at a leadership development program. Obviously this speaks volumes about what kind of student she is that has missed so much of school, yet can still earn such high regard with her teachers. But I think that there is a higher purpose, one that she could not "earn".

I also do not want to paint an inaccurate picture. She is in a lot of pain. She gets very angry at times. I get desperate to find answers and solutions to her pain. We still struggle a great deal of the time. I was quite upset last week that I could not despair because there is a great big hole in my house where an elevator with be installed soon along with a handicapped assessable bathroom. To be honest, it kind of ticked me off that I could not despair even for a couple of minutes.

I walked a mile with Pleasure, She chattered all the way; But left me none the wiser, For all she had to say. I walked a mile with Sorrow And ne'er a word said she; But, oh, the things I learned from her When Sorrow walked with me!

Author: Robert Browning Hamilton

Source: Along the Road

God's promise to us is that all things work out for our good. Don't let the questions of our hearts overthrow our faith.

The Human Side of Things

2010-11-01T16:01:00.000-04:00

It seems the more I try to figure out about my body, the worse it sounds. For a couple of months I had a problem with my heart jumping in my chest. It was getting so bad I actually went to the ER a couple of times. I also went to my regular doctor and each time they said that I had a slightly abnormal EKG. What that means, I have no idea. Anyway, I went to yet another doctor, a cardiologist, to investigate this problem because it was painful and scary. It also woke me up several times during the night. It felt like a fish was out of water and jumping around in my chest.

I went on some medication to help with "electrical problems" of the heart. Surgery was briefly discussed. To my knowledge this is not related to my EDS, just another fun fact of being me and my genes. Other family members of mine have similar problems.

Today I went back to my regular doctor for a check up and found out that I damaged the joint of cartilage in my throat. How I hurt that, I have no idea. It hurts like crazy! If this does not get better in a week or so, I will have have to go back to an ENT!

Then he found a lump in my chest next to my clavicle. He said that it might be arthritis. That sounds good, I'll go with that.

I guess I feel like my body is breaking down and the human side of me cannot withstand the stress of our situation as well as before. When the doctors ask if there is any stress in my life, I just laugh. There will always be stress, but I can't just walk away from it or wave my magic wand to make it disappear. I will have to just find better ways to deal with it.

Light and the End of the Elevator Shaft

2010-11-01T15:23:00.000-04:00

In just a few short days, framers were able to begin work on the shaft for the elevator as well as rough in the bathroom for the main floor. Things are moving very quickly right now and not a moment too soon!
The second day the workers were here Erica was unable to get out of bed all day due to a back injury. The cast on her ankle throws her whole body off and can create problems everywhere. Her back muscles are in spasm and she is in a lot of pain. That same day, Elizabeth had to go home early because she injured her hip at school. She was unable to get out of bed either. So I spent the day going up and down the stairs taking care of the girls. Knowing the elevator will be in soon helped me get through that day.
There really is light at the end of the elevator shaft!

Next the plumbers and electricians will be in to work on the elevator and bathroom. I just can't believe how much is completed already. Last year at this time we were all so desperate and now there is so much more hope!

Much thanks to all of you that helped with the donations for the changes in our house. It is only because of all of your support that we are able to move ahead with the work. More is needed, I will admit, but it is a start. Thanks be to God!

I Could Not Make This Stuff Up: To Remeber After My Surgery

2010-10-28T11:38:00.000-04:00

I Could Not Make This Stuff Up: To Remeber After My Surgery

Nick Who?

2010-10-05T11:20:00.000-04:00

I am a geek. Just so you know. This was confirmed last week. It is official.

I was selected by Children's Hospital to be a "Champion". This means that you are willing to share your personal story in efforts to raise money for the hospital which is a real honor. I was asked to speak at a golf outing this Friday. This outing is to benefit the Care Fund. The Care Fund was a grant that we received a couple of years ago to help us pay for some of our medical bills. We were nominated by the people in the Family Financial Advocacy department. I have written about them before. We consider them all angels as they help us with our medical bills as well as dealing the with the insurance company.

Anyway, I thought this would be a small event; maybe 50 golfers. I received a call from one of our angels and she said that 15,000 golf balls will be dropped from a rescue helicopter at the "event." I started to think that it might be a little bit bigger than I once thought. Then a got an email from the organizer. She said that there would be a lunch before my speech and I would have a chance to meet Nick and Drew Lachey.

Thinking Nick was some vice president of the hospital I asked Chuck, "Who is Nick (La-chee) Lachey?" He of coursed laughed and corrected me. I am still not too familiar with him or his brother, but it is cool that they are supporting this cause as well.

In thinking what I will say I have come up with some key points I would like to make. The fund is for people that have insurance, but the out of pocket expenses are more than the family can handle. They give the money to people that have children with chronic illnesses or find themselves in a desperate situation because of the bills. What most people do not realize is that there are many different "stressors" when a child is diagnosed or sick. The first stressor is obviously taking care of the physical needs of the child. This can be overwhelming in and of itself. The second is taking care of the other family members needs. Then there are the doctor's appointments, the therapy appointments, managing the medicine and so on.

Eventually you must deal with the insurance company and the medical bills. This can be extremely difficult on its own, despite all of the other issues that need to be addressed. In our case, the ladies in the Advocacy department also had to work around my own physical needs. In the middle of the battle, I had brain surgery!

The insurance company was not paying on certain bills such as physical therapy. I would call them almost every day. In fact, I logged over 100 calls in a year period just about PT. When Kristen and Carrie started to help, they took that responsibility for me. This was a huge relief! We were still looking at tens of thousands of dollars in bills, but any help was appreciated.

They did not stop there, they helped us apply for BCMH which is a state funded program that also helped with medical bills. We applied for financial aid and anything else they could find. They even adopted us for Christmas last year!

One day, out of the blue, they said we were nominated us for a new grant called the Care Fund. This fund would pay some of our back medical bills. I cried on the phone for a long time because what this grant did was not only pay for some of our bills, but it gave us hope. When people inject hope where there was none, it changes everything. This grant did not pay for all of our outstanding bills, but did help a great deal not only with our bills but our hearts.

People often ask us "How do you do it." The answer is we don't, God does. God knew from the beginning of time that we would be here and in this situation. The character of God is trustworthy and endless supply. We don't do it, He gives us what we need. We have to have our eyes open as to His Supply. He has given us just the right friends to understand and support us. He has given us Hearth and COTF to help with changes in the house. He has helped us pay our bills. He has given us friends to help us raise money. All of this supply is what gets us through the day. Without God's support, we would have buckled long ago. We are not that strong.

I am so happy that have been given a chance to give back. I know what these grants do for families. Many miracles happen down at Children's Hospital. Lives are saved, operations done, treatments given, but not all of the miracles have to do with medicine.

If you would like to help with this fund, click on the link to buy a chance to hit me in the head with a golf ball and earn $1,000,

https://giving.cincinnatichildrens.org/NetCommunity/SSLPage.aspx?pid=1036

Splash in the Face

2010-10-05T11:17:00.000-04:00

At the beginning of this week we are all looking forward to the beginning of construction on the elevator. Hearth Professionals found a carpenter to do the work for free! We are also looking into having the material donated by Home Depot. The installation of the elevator will change many things in our house for the better. A year ago we could not even imagine that we would be so blessed as to have these changes in our house!

Erica continues to do well. She did have a little trip to the ER while on the bus due to a spinal chord "stinger". This is similar to what happens to some football players. The spinal chord gets a ding and the arms and legs go numb, an electric shock goes through the body and the muscles cramp. Despite my efforts to tell the fire department that this happens frequently and she would be fine, they had to transport her. She was in and out very quickly. It did take a couple of days for her to walk again, however.

CJ has undergone more tests for his asthma. It is still unclear what is causing his breathing problems. Some medications were adjusted and new ones given, so we will see how it goes.

Elizabeth has been in some pretty bad pain lately. She went to see the physical rehab doctor. I told him that we are hoping she could go one month without needing her crutches and then we could start to send her to school all day. He told me that it was unlikely to happen that way. It has been a year since her injury. (He tore her hip tendon while sitting in science class) She has done all of her exercises, we are in the process of adapting her environment and surgery is out of the question. There is nothing left to do.

It was like getting cold water thrown in your face. I know it hit Elizabeth hard. The doctor looked upset as well. What do you say to a comment like that? My heart just broke. Have I been pushing her too hard? Am I expecting too much of her? This caused me to really sit back and evaluate our approach.

In the mean time, Elizabeth seemed to just give up. She did not want to go to school, she was in pain all of the time. She did not want to do anything. I think this is understandable, but we cannot stay here. She cannot give up. Okay, there is nothing more the doctors can do, but that does not mean we sit in the corner and cry. Well, maybe a couple of days.

We pushed her to return to school on Friday. She said that she cried through school. She had an appointment to go to swim therapy and we forced her to go to that. By the end of the day she was walking again. She is still in pain, but she was much better than before. She needed a couple of days to lick her wounds, which is okay. This cannot be a permanent state of mind, however.

The Ball is Rolling

2010-09-10T20:52:00.000-04:00

Last night we had a meeting with representatives of our groups of friends and Hearth and COTF. It was a wonderful meeting but overwhelming as well. It is overwhelming to see the support and love from so many people. We got together to plan an event that will bring more attention to the fundraising event.

We learned that $6,500 as already been donated. We are already a 10% toward our goal with nothing more than a newspaper article! God is moving so powerfully!

In a matter of just a few hours so much has been accomplished! Not for a moment do I think that any of my efforts or efforts of individuals is bringing all of this together. It is the supply of The Almighty and His provision!

The coolest part of this is, not only is God blessing us, but He is also allowing us to see other's eyes opened to the miracles that are happening.

Prayers are answered, faith restored, joy is infectious!

Surgeries

2010-09-03T19:17:00.000-04:00

In the last month, I have had two surgeries. The first was my nose. You would not think this would be high on the list of priorities, however, I could not breath through my nose, so I could not use my CPAP. Most people with EDS have obstructive apnea. Because our soft tissue is really soft, the back of the throat collapses while we sleep causing the apnea in even tiny 100 lb women. (I am not nor will I ever be 100 lbs.) I am exhausted all the time since I have had to stop using my machine.

Anyway, my nose was "out of joint" so I had a septoplasty to fix the deviated septum. Unfortunately, lead to a 13 hour nosebleed. Not to go into too many details, but if you do have to have this surgery be very cautions of the words "nasal tampons". After a night in the hospital, I was sent home.

Two weeks later I had surgery on my left arm. I was unable to use my fingers reliably. I would lose function dramatically through the day. It got to the point that I had to reserve using my left hand for important tasks.

I was sent to a orthopedic hand specialist. He determined that I needed carpel tunnel surgery as well as having the radial nerve released in both arms. The pain was worse on my right but it is still functional so I decided to have the left helped first. The surgeon is very good, but he was doubtful it would restore function.

I am happy to say that I think the surgery not only reduced the pain, but it also help me regain use. I am only a little over 3 weeks out, but I am already very pleased with the results.

My mom dropped by yesterday. She had a pre-op appointment with her spine surgeon. He plans on operating on her lower back to give back some of the function of her legs, but he thinks that she has broken her back again, in the middle. This is devastating and we are unsure what she will do.

Great News

2010-09-01T10:35:00.000-04:00

The kids got back to school last week. Along with the normal anxiety, there was some added drama. CJ is in the fourth grade this year. This means he's the big man on campus. This also means much more homework an added responsibility. I'm happy to report that he is a very nice teacher and I think he will have a great school year.

Erica is going to school on a regular bus without her wheelchair! Though this is a miracle as last year she was in her chair when she was able to go to school. She's in a regular second grade classroom with another great teacher. For the most part he would not be able to pick her out as being different at school which is amazing. I think we can attribute the successes to her hard work both in the pool and out of the pool with her support staff. She was able to strengthen her core which keeps spinal cord steady.

The only complication she has right now is stomach pain. She is on an adult dose of Nexium and is still having problems with acid reflux. She went in for a scope yesterday and it appears she does not have any damage. The doctor will probably double her dose.

Elizabeth is also going to school. Because of her hip injury as well as the POTS being out of control, she must stay in her wheelchair. This means she also can only attend half of the school day. She was able to create a unique schedule meeting most of her needs. She takes advanced math class, social studies and choir. She also eats lunch at school. She will start aquatic therapy in October. The goal is for her to return full time to school by December. But, as we all know if we want to make God laugh, make plans for the future. We will take this one day at a time.

Going to school has lifted her spirits. In the last two years she has massed close to 10 months of school. The fact that she had peace as she wheeled into the middle school for the first time that shows God's grace.

I agree with the old back-to-school commercial, "It's the most wonderful time of the year!"

All Or Nothing

2010-08-08T14:42:00.000-04:00

I finally finished reading Mere Christianity by CS Lewis yesterday. I had read other books that quoted from this book that I decided that I should read it. The ending of the book hit me like a 2x4. He said that you can believe in God and not trust Him. You can conceptually say there is a God, but until you give your self wholly to Him, you are actually pushing Him away. With God it is all or nothing. "God is easy to please but hard to satisfy."

To illustrate the point, I heard a sermon from a former police chief. He talked about this same concept. (coincidence?) He said that while at the police academy, he saw bullet proof vest tested. The vest was propped up against a sandbag wall. A gun was fired at the vest and the cadets were allowed to examine it. "Hey, it didn't go through." But, to trust in the bullet proof vest, one would need to put on the vest and voluntarily take a bullet. Big difference in believing in something and trusting it.

I was convicted on another point as I read the book. He Lewis wrote that when we trust God to help us heal in an area, we frequently get more than we ask. For instance, he said that when he was a child, he would wait to tell his mother if he had a tooth ache. Why? Because he knew she would give him medicine for the pain to help him through the night, but in the morning, she would take him to the dentist. He did not want to go to the dentist because he would fix the tooth causing pain, but would not stop there. He would examine the other teeth and fix others as well.

I think that I deceive myself in thinking that God has done enough "fixing" in my soul. I claim that He could have stopped 5 stages ago. But with God it is all or nothing. He will not be satisfied until we are "perfect." No, I am far from perfect; I have a long way to go. But that is the quest isn't it? We will not be complete until we are untied with Him in eternal glory and rid of or world contamination.

The best thing I can do is to accept that I will need refinement and give up.

I am due to have another surgery this Friday so I can use my left hand. I am not happy, but as I was reminded today, "Give thanks to God for everything."

The Smoking Gun

2010-08-03T12:16:00.000-04:00

It is still really hard for me to type, so I will get straight to the point. We finally have an answer as to why Elizabeth is falling so much. She has a cardiac issue called POTS (Postural Orthostatic Tachycardia Syndrome).

This is not life threatening, nor will it damage her heart. When people stand up the blood vessels in the lower extremities constrict to force more blood and oxygen to the brain. Because people with EDS don't constrict anything well, this automatic function is not as effective as in other people. The result is the loss of consciousness or getting dizzy and light headed. I looked it up and it seems that this is a common symptom for people with EDS. She went to see the cardiologist and he diagnosed her within minutes. Her blood pressure was checked while laying down. Then she stood up for 5 minutes and it was checked again. Her pressure was extremely low while standing, so they think POTS is the smoking gun.

She began some new medicines and she has to drink 8 oz. of water for every hour she is awake. This is very painful, but it is already helping. She also needs to strengthen her lower body to give the blood vessels something hard to push against when constricting.

Because she still has the injury to her hip, all of this is a little more complicated, but it is a relief to finally understand the problem. Elizabeth would like to get up and go like she used to, but she needs to take it slow. She thinks that the new medicine will clear everything quickly, but this is when the real patience needs to be strengthened. A fall at this point could really set her back. Even though she is doing better, her light headiness is not completely gone. Please pray for her to take it slow!

Ask For Believing....

2010-07-29T09:12:00.000-04:00

So much has happened since my last post. Unfortunately, it is getting increasingly difficult to type because my fingers do not do what I want them to do!

The elevator is coming soon. The architects and the vendor came to the house last week. We should know soon when the work day will be scheduled.

Because of a grant given to us from the Board of Developmental Disabilities, we can purchase a washer/dryer combo machine. It is very good timing as our dryer quit working a couple of weeks ago. We have literally let our underwear flap in the breeze for the last couple of weeks!

This combo machine allows us to put in clothes once and take them out of the machine after they are dry. This feature will really help as the arm pain and loss of function continues to worsen for me.

I also received a call from the ladies at Cincinnati Children's Hospital Family Financial Advocacy department. These are the ladies that have taken up the torch, so to speak, on dealing with the insurance company. Beginning in the spring of 2008, I was spending hours on the phone with my insurance company because many of our claims were being denied. The majority of the claims were centered around physical therapy. I had logged close to 100 calls and was at the end of my patients and desperate for help.

Not only did these ladies take over dealing with the insurance company, but they also helped me apply for BCMH, which is a state program for children with medical handicaps.

Last week they called and said that all of the PT claims were approved. At one time, this total was close to $10,000 and now we have a $0 balance! We all cried on the phone. It was such a long battle for me but also for them. I think the insurance company thought we would just give up, but that was not the case. Praise God!

They also told me that someone at Children's looked at Erica's wheelchair claim. This claim was denied by our insurance company. The company claimed that not enough information was submitted by Children's, therefore, it was denied. I could not do anything on my end, so we resolved to try to pay it off. Mind you, we still had several thousand dollars in bills that had nothing to do with PT or the wheelchair. A hold was put on the account so that we could pay this total off first.

When it came time to start paying on the wheelchair again, the ladies told someone higher up the chain about the insurance denial on the wheelchair. They told me last week that the balance was gone. Where did it go? They said they didn't know. I asked would it come back, and they said it would not! So in one short conversation, $15,000 of our medical bills went up is smoke! Hallelujah!

When I told my family about the great news, I reminded CJ that God did answer our prayers. He has prayed for a couple of years that our medical bills would just go away, and they did! I told him that the prayers of children are sometimes more powerful than the prayers of adults. When he asked why, I said that adults pray for things that they think are possible, kids, on the other hand, do not have those limits in their prayers. They go ahead and ask for the "impossible" and believe God can do it. What you ask for, believing will be given to you."

"The Peace that Passes Understanding"

2010-07-16T15:59:00.000-04:00

Almost immediately after I wrote the last post, I received a message from Marnie with the Hearth Professionals saying that a vendor has been found to install the elevator! God is so good! I am so happy that God gave me peace before we got the good news.

Because the vendor has been found, the transformation of our house can go into the next phase. The money for the elevator has been secured, but much of the other expenses need funding. The architects and the elevator company will come over to look at the house on Wednesday. The plans will be available for the permit and we can set a date for the beginning of the shaft construction.

This is where we need a lot of help. Not only do we need donations for the building materials, but we will also need volunteers for the construction.

We need to figure out a fundraiser for these expenses. If you have any ideas to help, we would love to hear them.

All of this is even more urgent as we continue to try to understand what is happening to Elizabeth. She went back to the doctor today and the good news is that she does not need hip surgery! The down side is we still do not know why she is falling. Some of it can be written off as clumsiness, but not all. One of the theories discussed is a condition known as POTS (Postural Tachycardia Syndrome). Based on what I read, up to 78% of people with EDS Hypermobility have this condition.

As I understand it, when she is standing up, the blood vessels in her body are supposed to constrict so the brain will get most of the blood or oxygen. Because people with EDS have weak tissues, this automatic system does not work well which can cause momentary "blacking out."

While listening to us, Elizabeth said, "So when I wake up in the morning and stand up to stretch and my eyes go black, that is what is going on?" Well, yes, that is exactly what is going on.

The problem is that there is not an easy fix with this condition. Because she is falling at such an alarming rate and she is getting injured, we will have to limit her standing. She will need to use the wheelchair even more. A cane, crutches or walker are not recommended with EDS and certainly not with POTS.

I do not mean to put the cart before the horse, but it would explain a lot of strange things that are happening. The ortho doctor said that she is injuring her hip when she falls, probably causing her torn tendon to be pinched between her leg bone and her hip. We will not need to continue to take her to the ER for this. He showed us how to help her get that back at home.

Again, we thank all of you for your prayers and support!

Remember the Blessings

2010-07-14T11:13:00.001-04:00

I am writing a response to myself in regards to what I can do in light of the new symptoms and hardships our family is going through right now. The worst think I can do is to despair and get depressed. All the worry in the world will not change the facts of our situation. What can change and should change is my reaction to it. I will be a further burden if I get grumpy and angry in light of these circumstances.

Reading A Lifetime of Wisdom by Joni Ereckson Tada has shown me that God says no to healing to many of us and that is okay. Not only is okay, but I thank Him because it is through suffering we can really experience joy. It is the opposite of suffering that makes our joy all the sweeter.

I love what she says in "But Why Would He Say No to My Healing?" (A Lifetime of Wisdom pg 192-193)
     It's not because He lacks ability.
     It's not because He lacks concern.
     It's not because He is deficient in love.
     It's not because He is somehow preoccupied and has forgotten about us.
     Know God better through suffering?
     Closer to God through trials?
     Discover God's hand in heartbreak?

God told us in scripture that he listens to the groans of our hearts and he collects all of our tears. God really listens when we are in trouble and we call on Him in desperation. God is listening to me very closely right now. He is cupping His Hand to His Ear to hear my cries. He is allowing this to happen so that so many other blessings will come if I remain faithful.

"There is more to come: We continue to shout our praise even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we're never left felling short changed. Quite the contrary-we can't round up enough containers to hold everything God generously pours into our lives through the Holy Spirit!" (Rom 5:3-5 The Message Bible)

I want to write this on my hand, my forehead and on every mirror in my house. When I get low, like I have been recently, it is easy for me to forget the amazing things that God has done for me and others. When I forget, it distorts the truth and creates despair. But when I remember the miracles, I know that God is very near and "His grace is sufficient."

God gave me an incredible husband. Not just a nice guy, but one that is patient, loving, smart, kind, a great father and so on. He gave me three amazing kids. Kids that are already busy with Kingdom work in their short lives. He has given me an amazing family and blessed me with a better relationship with my mom, for which all of these trials are worth it. He has given me incredible friends in my neighborhood, church and around me. People that pray for us every day. People that help in more ways that I could express.

He blessed us with a wheelchair the minute we needed it. He blessed us with a wheelchair ramp the minute we needed it. He blessed us with two charities that are working on our behalf. He gave us friends that helped clean our home when we needed it. He gave us money before we knew we needed it (and boy did we ever need it right at that moment!) He even gave us toilet paper and paper towels! He gave us free pizza to feed the workers that built the ramp. He saved Erica's life with surgery at the exact moment she needed it.

There are so many blessings that I cannot share all of them here. Is every desire of our hearts granted? No. It is hard and heartbreaking to see your child in pain. But I know His ways are higher than my ways.

Grace for Today

2010-07-13T22:10:00.000-04:00

Last night I was reading a very good book by Joni Earkson Tada. Joni has suffered from quadriplegia for over 40 years. She writes with such honesty but deeply rooted in biblical truths that it has been very inspiring to read.

She explained that God gives us grace for today, not yesterday or tomorrow. Joni also painted a picture of God's grace as a mighty river and we are a tiny bird that balances on the edge of the river for a tiny sip, then we are satisfied and fly away. How many blessings have I missed because I did not drink deeply in God's grace?

I don't want to waste my days waiting for things to get better, they may not. I want to grab a hold of the joy that is in this day and in this moment.

One thing that I have realized is that I would prefer to live a life of strife and worry than to live without God. I think that all of the things that have happened to our family has strengthened our faith and without those stressers, we would not lean on God as much as we do. I praise God for all of the little blessings He sends us every day as well as the big ones such as our family and friends.

My Brother

2010-07-12T15:33:00.000-04:00

Fourteen years ago my parents and I were planning a funeral instead of celebrating a birthday. My brother died the day before he turned 27. Today is his birthday.

Eric, James Eric, was a very smart, funny guy. We were just building a bond as adults when his life was cut short. I don't think there is a day that passes without a wish that my brother was here. I miss the way he would send verbal jabs waiting for me to jab back. It was playful banter that we both enjoyed and would claim victory over the other (though he was very quick).

He went to Texas Tech University and received a degree in history. He was the first employee of the Underground Railroad Freedom Center. If you go to the museum, his name is on one of the flames (they have his name as Eric James Bachmann which is wrong, it is James Eric Bachmann). He is also listed as a member of the board in abstentia.

Upon his death, then Senator Rob Portman read his obituary into the minutes of Congress, a scholarship was created in his name and he received the Freedom Conductor Award. Later, Rosa Parks and Desmond Tutu also received this award.

When my son, CJ, was assigned to do a report on his hero, he chose Eric. CJ became an expert on his life. He would correct me if I quoted his graduation date wrong or all of the places we lived. It was ironic because CJ reminds me of my brother in so many ways.

"So here is to us and those like us, damn few left!"

Permanent Loss

2010-07-11T11:26:00.000-04:00

I went to see an orthopedic hand specialists on Friday. I'd see my regular orthopedic surgeon regarding my arms a few months ago. He gave me are in braces and sent me to physical therapy. Neither of which helped in any way. I also noticed that not only was the pain getting worse I was also having trouble controlling my hand movements. Things would just fall out of my hands I wouldn't be able to grasp small things like a piece of paper with my left hand.

I've spoken to my geneticist regarding this problem and he said that many people with EDS have a trapped radial nerve and it can be solved with a simple surgery. So I had high hopes when I went to meet with the surgeon. I was shocked when he said that not only do I have radial nerve problems and carpal tunnel but the loss of function in my left hand had more to do with my neck then my arms.

He suggested that I go back to my spine surgeon to see if this is something that could be reversed or if it's permanent. In his opinion, he thinks it is permanent. That means it will not longer be able to use my left arm.

Now my head is swirling with how I'm going to be able to take care of my children, myself and my husband with one hand. Please don't take this wrong my husband does more than his share. But I want to be a partner not a liability. With the increasing demands for me physically to take care of especially Elizabeth, I do not know how it will be able to do it.

How am I going to be able to cook, drive a car, go grocery shopping, fold laundry, do the dishes, make a bed,or push my children's wheelchairs? I know there are many people that live near normal lives with only one arm now live a normal life.

These are the questions I want to shout to God. I just want to learn whatever lessons I need to learn in order for the chaos to stop. I want in some way for me to be able to do something but I do not think it works that way. His ways are not my ways. Every time we think are getting close to the finish line, we were hit upside the head with something else. I do know that this life is temporary, and I hope cannot be here in this world, I have no idea how our family is going to be able to function.

A friend of mine said that when things look impossible, it must be God. I just wish they would give me a glimpse or a hint of the solution. I have much joy when I thin about my eternal life. This earthly existence is just weighing me down.

The Answer is Coming into View

2010-07-11T11:06:00.001-04:00

So I have been praying for an answer regarding Elizabeth and her hip issues. I think the answer is very clear, I just don't like it. After her hospitalization and other difficulties, one of her doctors said that she had "little to lose" referring to the risk of surgery.

Elizabeth had been doing pretty well the last few days. She was walking just a little, just on the first floor. That all ended last night when she "popped out" again. She is not able to get around at all. She cannot even sit up in a regular wheelchair. It is difficult to tell her to lie down and not move when she's feeling okay, but when we do allow her to move and she gets injured again. It is like watching a slow train wreck. I also feel that no matter what we do her situation will not improve dramatically.

I just never thought we would be at this point with Elizabeth. She learned to walk, crawl, swim the same as any other child. But now when she supposed to be the strongest wheelchair seems to be her lot. It is kind of like the elephant in the room that we don't want to admit that is sitting and staring at us.

The structure of her family home will be forever altered. It seems that wheelchair ramps and asistive devices will have to be permanent. I know that might sound strange and that I'm stating the obvious, but somewhere back in my brain I still was clinging to the hope that this was somehow temporary to leave as fast as it came.

So now we have to say to ourselves "so be it" and make the necessary changes. It's just heartbreaking to have to explain that to your 12-year-old daughter.

Finding My Joy with an Ironing Board

2010-07-04T13:35:00.002-04:00

The news from the Schulze family is not great. I will have surgery at the end of this month, my mom will undergo another back surgery in September and Elizabeth's ability to walk has come to an end, at least for right now. Her doctors are discussing surgery because as one said, "She does not have much to lose." The surgery could work and she would be able to walk some, or it could fail, which could lead to a total hip replacement and permanent placement in the chair.

Before Elizabeth's latest hospitalization, I heard three sermons about joy. Joy is different than happiness. Happiness has to do with your "happenstance", meaning it has to do with what happens or does not happen to you. Happiness is temporal. On the other hand, if you have intense happiness we call that joy. Joy has a source, so what is your source? Could your source of joy be taken from you? If it can, will you lose your joy forever? I know many people that have lost their joy.

After my brother died, almost 10 years ago, my dad's joy died. To be truthful we saw him die that day too. One of his main sources of joy died. I think you also know many people that say they find joy in their children, and I am among them, but it is not my only source.

Anyone that has experienced significant loss, which is most of us, knows the emptiness that creeps into our hearts when we lose some thing or some one . It is a terrible valley that we must walk through, but I do not think it has to be permanent.

Joy, in the sense of eternal joy is a feeling that cannot be "robbed" from you if you make your source of joy on God's love. God tells us that nothing here on Earth, or anywhere else for that matter, can separate us from God's love after we accept it.

This type of joy, rooted in His love, can come bubbling up when you are in a desert of unhappiness. In fact, this is where joy can really shine. When the circumstances of life are desperate, horrible, sad, depressing, joy can be a light that allows you to have that "peace that passes understanding." It is the peace that only God can deliver.

I do not claim this joy or peace all of the time, but when I allow myself to let go of the immediate circumstances, it is an amazing feeling.

Case in point, Elizabeth popped out her hip yet again Tuesday night by simply walking up the stairs. She was able to crawl to her room where we attempted to put her hip back in for the rest of the night. In the morning we called her orthopedic surgeon and they said to get her to the hospital right away. Because her hip was potentially dislocated for over 6 hours (it was 19 hours) the potential for her hip bones to die was very high.

Trying to keep the drama down, we used an idea that our priest came up with to help her out one day when this happened at church. The men from church loaded her up on an ironing board and slid her in the minivan. Chuck went and got the ironing board and he and a neighbor and the support staff loaded her up on the board and slid her in the van again.

When we arrived at the hospital, the nurses kept her on the board and brought her back to the trauma bay. The doctors gave her medicine, and when they did her hip was able to relax enough to get the x-ray that caused her hip to slide back in to place. The ironing boar was removed from under her body.

Because it was out for so long, her pain was unbearable. She was admitted to a room. She could not sit up at all so I could not transport her home. So, they wheeled her up to her room, and I had to take the ironing board.

It was quite a scene. Elizabeth in a hospital and me carrying an ironing board. The ER doctors and nurses knew why she was on the ironing board, but the people in the hall I think thought I had OCD of some sort. I intentionally walked straight faced to the room. I thought there would be at least one chuckle from the many witnesses in the hall and elevator but no one cracked a smile. Granted, there is a kid going into the hospital and that is not fun, but someone carrying an ironing board through the hospital, that is funny!

Another sermon I heard talked about how she sees funny things everywhere. She travels the country giving talks about joy and is kind of like a Christian stand-up comic. She said invariably there will be one person in the front row that will not smile through her whole bit. She keeps trying to get this person to laugh, but there is not expression of joy on her face. Thinking that she is failing miserably, she panics and keeps trying to get this person to laugh. She admits that after the show is over, usually the first person to come up will be the sour expression person saying it was the funniest show they had seen in many years. Her reply is great, "Then tell it to your face!" Le the joy in your heart tell your face to smile!

I kept thinking that many people need to tell their face to smile. Joy is the miracle cure for any problem. I do not want to trivialize loss and pain, but if you cannot laugh through your storm, it is going to be a long storm. Protect your joy, do let others steal it. Don't let circumstances dictate your joy. God made us in His image and I know he has a sense of humor, just look around and tell your face!

"Life Isn't About How to Survive the Storm But How You Dance in the Rain"

2010-06-25T09:12:00.000-04:00

I stole that quote from a forwarded email I received today. It reminded me that the physical is temporary and God made us water proof and 100% washable.

I have been putting off dealing with the elephant in the room. Elizabeth continues to hurt her hip and falls frequently in public. Right now we are scrambling trying to find a way to get a vehicle that can accommodate all of us and the motorized wheelchairs for the kids. Because our medical bills have been so high during the last few years coupled with my need to quit working my three jobs, our finances are a mess. The type of van we will need is very expensive and most banks do not want to loan money to people that need this type of van because the cost outweighs their assessment of the worth of these vehicles. Our credit does not help matters. Neither does the fact that we not only need a minivan that has a ramp, but a full sized van with a raised roof, a lift and room for at least two wheelchairs.

Because we will keep this van for a very long time, the man helping us find an appropriate van keeps mentioning that I need to plan for potential physical needs that I might have now and in the future. Right now I am scheduled to see another orthopedic surgeon because I have problems with nerves in my forearms. From what I understand, this is not carpel tunnel. It is a condition that is prevalent in people with EDS. My arms have been swollen for at least 7 months with some pretty intense pain and frequent numbness. I went to PT which did not help much. I also use splints that do help a little, but are not practical for everyday use. I also have to take into consideration my hips which have been a problem since my birth.

It is difficult enough knowing and accepting that your children need extra assistance with wheelchairs and the like. It is a different story when you have to accept that you own future might be very different as well. Both of these issues were banging around in my head when I read the quote in the title of this blog.

I have a choice. I can despair and feel defeated about the reality of needing all of these things for my family and not knowing how we will be able to acquire them, or I can dance knowing that God's grace is sufficient. It is like standing on a razor blade at times. I do not dance all the time, but if I can remember God's promises to us and to me, it is possible to dance and wonder how all of this will be accomplished. Faith to me is preparing for the impossible blessing before it comes. So right now I am going to thank God for His blessings that he has rained down on our family and the future blessings to come. If these things that we think we need never come, then we will never need them. Please help me pray that we can stay in that frame of mind.

First Date

2010-06-22T19:54:00.001-04:00

I am going to start this off by saying this is terrible. I should not joke about this subject, but I just can't help it.

That being said, here is the story:

As most of you know, my mom became a widow just over 2 years ago. My dad passed away after suffering a long illness. She was an Air Force wife for over 30 years and took care of him during his retirement. Mom was previously married to my real father, but there was little dating in between marriages.

So when she decided to start looking for someone to go to dinner with her I was very proud of her. She had not had a real date in 45 years! She joined E-Harmony and started chatting with some potential "friends." She found someone on line that was in the Air Force and could relate to her experiences. They decided to start talking on the phone and eventually met for a date.

The date was wonderful until... he said that he was going to hear in a few days if he had a malignant brain tumor. Mom called him a couple of days later and left a message to see how he was doing. He called back and said that he did have brain cancer and he could not see her anymore. He said that a "friend" had come back into his life since he found out that he had brain cancer. He said that since they were "friends" again it would not be fair to her to continue to be "friends" with Mom.

Let's think about this, the first time she does go out on a date in 45 years and he has cancer and dumps her?! This could only happen in our family. Please do not get me wrong, brain cancer is in no way funny, but again, what are the chances?

A week later she found out that she needs to have another back surgery. Apparently she has some screws that are loose. Again, I could not make this up!

By CJ Age 10

2010-06-14T14:42:00.000-04:00

Lord, please let me do my best and help me worship you and give you ALL of the glory. Help me when times are rough, help me to control myself and be joyful. Lord, help me pray EVERY day and to read the Bible. Help me take care of myself such as exercising, eating good foods and having fun. In Jesus' Name...

AMEN

God Is... By CJ Schulze

2010-06-11T17:24:00.001-04:00

God is the alpha the omega and judge of all. He loves you so much that he brings you up in heaven to have life again. But he gives you better life. All in heaven is good, and you have NO pain. God is one of three and a part of one. God does care or else he would let you rot and die. But he does care. When you repent your sins goes to the foot of the cross. Pray, pray and pray. Do not stop. Listen to the Ten Commandments, and read a Bible. Spread the word of God. God is the creator, the number 1! Have faith and love God with all your heart. Step forth to the good. Never give up hope, give it everything you’ve got.

Prayer *God help me spread your word all around me.

In Jesus’ name, Amen.

Changed

2010-06-07T20:42:00.000-04:00

We just got back from the ER. Elizabeth fell at church again. Apparently she was going to get a drink from the fountain when her leg gave out and she fell. Some of the men at church used an ironing board to get her to the van. I took her down and visually her hip looked out of joint and all the trauma doctors agreed.

Six hours later, sedation and more x-rays and they sent her home in pain, but able to sit up. The pain she went through with the doctors trying to get her hip "reduced" was a horrible sight. I can't really explain the feeling other than standing by while your daughter is screaming in pain, but you have to keep the terror out of your own eyes. You have to keep calm so she will be more calm. All the while knowing that this was not the first time, not the last time...

Part of me wants to just make her stay in the chair so that she will not get hurt, but that is a horrible resolution. But, so is the resolution that she can fall at any time or any place and what will she hurt the next time? This is a gut wrenching and a change that I must grieve and help her grieve if that is what is to be the answer.

God knew before the beginning of time that this would come to our family. I do not think this is a punishment or some kind of random evil act. I think that God is ready to give us everything that we need to get through whatever we need. It is not our life we live but the life He gave us. If I think of it that way, it reminds me that He will be faithful because He knows what I need before I need it. Sometimes we have to be willing to swallow a bitter pill to reach the full measure of our blessings. Resolving Elizabeth's hip issue is one of those "pills."

We thought she would have a different future. A future of swim team meets, normal bus rides, heart aches as she grew older and all the "normal" raising kid stuff. Her future is very bright, do not get me wrong, but it is different. I did not hold her in my arms and think about ordering a wheelchair for her. I did not see her first smile and think I would see her face in such anguish that it would cut me in two. I did not watch her first steps and think that when she would be 12 and still worry about her falling. I am glad that I did not know back then. I am not regretful nor am I despairing her future. It is just different, changed.

The following is to a great devotional about change:

http://www.d365.org/todaysdevotion/

"If I Only Had a Brain..."

2010-06-04T23:11:00.000-04:00

Contrary to popular belief, I do have one. About a year and a half ago I was having some trouble with things like breathing and staying conscious, so I had an MRI. The doctors told me, at the time, that I had an "incidental finding." Translation was offered by one incredibly pompous neurosurgeon resident, that if he took several people, at random, they would find this same finding. I did need to follow up, however. He did not think that these findings had anything to do with the problems. I had my C1-C2 fusion with plates to keep my brain in my head and things got better.
Fast forward to a few months ago and a couple of doctors later, I find out that I have two spots of capillary bursting in my brain deep in the brain stem. To have two areas is not "incidental." I am not sure I understand all of the ramifications of this. One is over the breathing center in my brain.

Interestingly enough, when I went to this particular neurologist, I was actually trying to play down the fact that I had EDS. I believed that this was no big deal. When the doctor came in he read through my paperwork and was surprised to see that I had EDS.

"You will never guess where I was yesterday." was one of the first things he said to me. He went on to explain that he had just given a talk about genetic reasons for strokes and one of those reasons was EDS. He was really excited, I was nauseous.

There is a really sickening look that doctors get when they find something "interesting." I realize that a good doctor is a good scientist and a good scientist gets a charge out of an anomaly, but I could go for a plain, boring day.
He went on to explain why my case was so interesting. I really did not understand what he was saying. He asked if I had any questions and if I was okay with this news. He said that he wanted my blood pressure down to prevent further bleeding in the brain. I just looked at him and asked if I had to worry about it in the next 5 minutes. When he said no, I was finished.

Please pray that I can keep my brain from exploding from the inside out and that my girls do not suffer with the same symptoms.

What are the Frickin' Chances?!

2010-05-27T23:00:00.001-04:00

As I mentioned before, Elizabeth is back at school in her new wheelchair. Only her second day and she is outside at recess. She decides to drive by a group of kids playing tether ball when the rope snaps the hook goes flying and hits her in the head.

The odd of this have to be astronomical as this smooth hook with no sharp edges hits her hard enough to leave her with a significant gash in her forehead.

In disbelief, the nurse calls and said that Elizabeth was hurt, but it was not due to her EDS. Remember, she was taken home from school just last week because she sprained her foot in her chair, now she has a gash in her head that requires stitches!

Chuck could not believe it. "Next they are going to call and say that a rabid squirrel got loose in the school and only attacked one kid, yours."

She told us that a friend of hers said that all of the tether balls were off limits because of the incident. If the school is going to base what is safe and not safe upon our kids, everyone will be wrapped in bubble wrap and placed in padded rooms.

All I know is that the name of this blog might be a self-fulfilling prophesy; both good and bad.

Activity Pacing

2010-05-25T07:22:00.000-04:00

"Activity pacing" is what people with chronic pain are supposed to do. You are supposed to do a little bit, rest, then a little bit more. By doing this, activities are less painful and theoretically more can be accomplished. I have not learned this lesson.

My model has always been work until completely exhausted and in pain. If I feel good one day, I try to do as much as I can because I don't know how good I will feel the next day. This puts me in a cycle in which I over do activities, need to rest a lot because I cannot move for a couple of days, then I start it again.

As I have gotten older, it is more and more difficult to push through the pain. Take, for instance, my arms right now. Both arms are swollen because I have tendinitis in both. I wear wrist braces to keep me from overworking these tendons and muscles. However, I still need to care for the house and the kids. This means that I cannot rest the arms as much as I should. So after a day of picking up in the house, laundry and light shopping, my arms ache.

I have started to go back to PT just for the arm issue. Some of the pain has decreased, but I am still impatient. You would think that I would learn that pacing myself really does pay off, but I am not that smart. I pray today that I will learn my lesson, because I am in pain today. I know I will really need to pray for tomorrow or the day after that to really get the hang of this.

Why My Daughter is My Hero

2010-05-24T22:32:00.000-04:00

Elizabeth returned to school full time last week. This might not seem like a big deal in the world, but I think it huge. It was not just amazing for Elizabeth in her conquering her pain and fear with unbelievable faith and joy. But it was big for everyone around her.

When she entered that classroom for the first time she was showing her classmates, teachers, family and friends that it is never okay to give up. She showed that nothing is so big that cannot be overcome with God's help.

Think of all she had to deal with in coming back. You all might have to overcome obstacles at some point, but I challenge you to do them all at once like Elizabeth.

First, she had unbelievable pain. She still suffers from hip pain and her leg gives out because it is so unstable. Her neck is still sore from her fall. The rest of her joints (shoulders, elbows knee, ankle, etc) continue to dislocate and cause pain.

Next, she had to overcome the unknown about her own body. Still doctors cannot decide if her head is safely attached her spine. She went through puberty at this time. Her body has changed quite a bit in the last 6 months. She went from looking like a little girl to looking like a young woman. She grew almost 3 inches since September.

To go along with the physical changes during puberty, she also had the emotional side to deal with, but alone. She has two great friends that supported her during her stay at home, but little other contact. She had to go into class dealing with many people with many questions and sit next to BOYS! She was not even used to being with big groups of people

When she returned, she went into a different class. She knew only a few people. Being 12 and going to school every day with the people you know is hard enough. But coming back with your body different, in a wheelchair and with an adult (a very nice one) is just crazy.

The wheelchair issue alone would have thrown me into a tailspin, let alone everything else. She does not seem to care much about it. She is very practical and sees it as something that helps her do what she wants.

Now, she did all of this with a smile and loved going back. She said that her reception from her friends at school was wonderful. We are so blessed to have a daughter like her!

How Can a Loving God Let This Happen?

2010-05-23T21:51:00.000-04:00

Have you asked this question? I know I have many times. If there is supposed to be a "loving God" why do babies die? Why do children commit suicide? Why is there war, sickness and evil?

The answer is both simple and complex. First, let me tell you some of the books that I have gone to to help with this answer. The Bible, of course, gives much of the answer. Two other books I have read recently by Ravi Zacherius and C.L. Lewis. I think Lewis was easier to understand in Mere Christianity. Again, I am greatly paraphrasing here.

Lewis and Zacherius both point to the fact that there is good in the world. We know that there is good in the world because it lies in stark contrast to the evil. How would we know that good was good if there was not something in which to compare? If there is good, where does it come from? The source is God and He places a little of Himself in all of us.

The books go into detail about the ideas of what is good and how we define good. I will let you read for yourself. The idea that we know that good is good because it is not evil like we know that light is light because it is not dark.

This is the easy answer. But then again, it is very complicated as well.

The other answer has to do with if God is good and is love, then we have to understand love. Love is only true if there is a choice. If we were to love God, then we have to decide to love Him. The flip side of that is that we can decide not to love Him.

He loves us so much that He does not want there to be any barriers to our relationship. For this reason, He sent His Son to pay the penalty for our straying from Him.

The biggest thing that I have to remember is that He never promised us an easy life down here. If fact, He promised the opposite. He said that we would be hated, the road long and the education tough. He also promised that the end of the race would be all worth it. We are promised an eternity of joy, peace and love with every tear wiped away.

When I see the girls in pain or when I see that CJ is struggling it is difficult to put this in perspective. I want all pain gone. I want all the tears to stop.

I am writing this more for me than for all of you. This blog has always been self-serving. I do not have all of the answers. I do know that God does. This is my eternal hope.

Trip to the Mall

2010-05-21T14:54:00.002-04:00

Yesterday after Erica's eye doctor appointment I promised to take her to the Lego store in the mall. As we were walking through the mall, Erica put grew more and more excited about everything she was seeing hearing and smelling. Each store had a "more beautifulier" smell than the next. She would comment on the outputs as we walked by saying, "This outfit is very fashionable." Walking by Victoria" Secret, she exclaimed, "OH! She has big boobs!" And as she passed Ambecrome and Fitch she saw a half naked man and stated, "That's just disturbing."

It took me a while to figure out why she was so excited. Then I realized, I had not taken her to the mall since she had an out of her stroller. Fashion expert of our family, has never really gone shopping. The physical strain on both her and me proves to be so great that we target only certain activities as to decrease the amount of pain we have later.

At the end of the trip Erica said that the mall was not for me. She said, "You're too slow and old for the mall." Of course someone overheard it and I had to agree with her.

Thank God for the Ramp!

2010-05-21T12:51:00.000-04:00

The strength that my children have because of all they have been through is amazing. I think it impossible to ignore the special training they are receiving at such a young age.

Wednesday, Elizabeth was at school and hurt her ankle while she shifted her weight in her wheelchair. She felt a pop in her foot swelled immediately. We had already discussed plans for her to stay at school all day the following day.

Here lies yet another bump in the road. After four hours spent at Children's, it was determined that she sprained her foot while in her chair. There was some question as to whether or not her tendon had actually said snapped off part of her bone. But the doctors agreed it was best for her to keep moving it and keep walking on it.

The next day she did return to school all day braces and all. She was in a lot of pain but the welcome she received from her classmates really lifted her spirits She said that everyone was very welcoming and warm to her.

Last night I told her how proud I was of her. I told her that she was a symbol of persistence and strength. She has an amazing ability to keep on keeping on. This is a strength that people can see in her and one that God is developing in her so that God can use it to further His Kingdom.

We hope this sprain is nearly a small nuisance and that she would be able to be walking with little pain soon.

I spoke to one of Elizabeth's teachers yesterday explaining our hopes and Elizabeth will not require a wheelchair at school next year. After I said this was a long pause in our conversation. I realize that it sounded ridiculous that I would hope that she would be able to walk at school without much trouble as she had just injure her ankle while sitting in a wheelchair. Maybe this is part of the grieving process or maybe I'm just fooling myself. I cannot bring myself to believe that Elizabeth will have to stay in a chair for the rest of her life or even in the short term.

Elizabeth's power chair should be delivered on Tuesday We still do not have a vehicle to transport any of the power chairs, however, we are in the process of trying to solve that problem.

Erica, on the other hand, is struggling with much pain and many dislocations. We are noticing that she's not playing with her friends as much preferring to lie down or to sleep for many hours at a time. I think this is because she is in so much pain and her body is just not quite sure how to handle it. She's relying on her wheelchair more and more.

Thank God the ramp is in because it has been extremely useful for the last few weeks.

Erica is supposed to be in the water working on her aquatic therapy exercises. However both of my arms are in braces due to tendinitis and swelling in my wrists and arms. It will be another four weeks before I am able to help the girls with any of the work they are exercises This is frustrating as they cannot go for weeks without doing their exercises. Help will be arriving soon and way of the caregiver that will come in twice a week but I fear it will take too long to get everything started.

I took Erica back to the ophthalmologist yesterday. They are still finding it difficult to test Erica and her vision because she becomes very upset during the testing. The doctor did say that there is some correlation between her vision problems EDS. She's not able to focus adequately with her near vision. We will experiment with set of reading glasses for her at the beginning of the next school year.

It is more of an experiment that it then it is a definite diagnosis of eye problems. We hope that the glasses will help her with her reading and her school performance. It's just a bummer that she has one more barrier one more thing to overcome.

If there's some funky spelling will or words in this entry please excuse me. We purchased a voice recognition software program so that I'm able to type without pain. I think it works pretty well but I will let yet You be the judge.

Divine Providence

2010-05-14T21:08:00.001-04:00

A minor victory for the Schulze family as the decision was made to have Elizabeth return to school for a full day. She began attending school for 1/2 days a couple of weeks ago. Her pain levels have come down and she has more endurance and has stopped falling. It will be a great way to end the school year that has been very difficult for her. Elizabeth had to be taught at home at the end of September because she tore her hip tendon sitting in science class. She worked hard and was even hospitalized for a week to get her up and moving again.

She was scheduled to return after Christmas break but she fell down the stairs on January 1. This re injured her hip and hurt her neck. She was in the neck collar until late April. There was questions about the severity of the injury and the pain and if it had to do with possible instability of the C1-C2 tendon like Erica and me. One CT scan showed a very scary picture of her neck. It showed that has she turned her neck, her head was coming off her spine. This image was very disturbing and so was the message that she would need surgery. If you have read any of my entries about the C1-C2 fusion, you will know that this was the worst news.

Other doctors were not convinced that this instability was leading to any real problems. Then she began to fall and not use her arms to stop her. She sustained a spinal chord concussion and a head concussion. No one, even the doctor that suspected the instability could explain the falling.

We struggled to get answers and figure out what to do. What do you do when doctors do not agree? Who do you ask? Where do you go to get a second opinion if you are already seeing the best doctors? How could we get the images and suggestion that a simple fall could permanently damage her spinal chord?

Most did not want to give us advice that could lead to any question of malpractice. Their advice was simply no advice. Some doctors would vacillate opinions from one appointment to another, some during one appointment and others during a single sentence!

Ultimately the decision was left up to us. Gradually the fear of what if has to pass it to what will be. We pray that we make the right choice. We pray for guidance. What we get is what we are willing to put in trust of divine providence.

Mommy's Special Drink

2010-05-10T10:34:00.001-04:00

I should have known that leaving Erica with the news man from Channel 9 would be a bad idea. Never knowing what Erica will say,when we realized that Erica was alone when the cameraman Chuck rushed in to hear Erica say to the reporter, "The last time I broke my ankle mommy could not take me to the hospital because she had a special drink." Chuck and the cameraman had fun making believe that it was recorded. It was not until I saw it on television that Chuck told me the camera was off when she made the comment.

You have to understand that I rarely drink and when she broke her ankle it was my birthday. Usually I take the children to the emergency room when they get hurt and I wanted to spend some more time with my mother so we said that so I could stay home.

I don't think I will ever live this one down. Every time I am tempted to have a glass of wine or enjoy an adult beverage I am reminded of this events and politely decline.

Wanna Race?

2010-05-01T11:20:00.000-04:00

So we were so incredibly blessed with the construction of the ramp. How do we celebrate that? A race, of course!

While the TV guy was at the house, Erica twisted her ankle. It swelled almost immediately. This is the place on the ankle that she has broken twice within the last year. Not wanting to go the ER, I asked our doctor to postpone a visit until Monday so she could see her regular ortho. Any time we take the girls to the ER down at Children's it is more like a side show because all of the med students, residents and even a few regular doctors will find a reason to come in the room and see the girls because EDS is rare. I understand that it is a learning experience, but it can be very exhausting and stressful for all of us. The doctor agreed to the delay only if she stayed off her ankle completely.

Anyway, after the ramp was completed on Saturday, Chuck took CJ to his baseball game and I stayed at home with the girls to rest. I had Erica inside with me for the majority of the time, but she wanted to go outside to play. I asked her to stay in the wheelchair, to which she agreed. Are you already guessing the end of the story?

After only 10 minutes, Elizabeth came running in to say that Erica fell. When I got outside, some of the neighbors had already come out to help. Erica had challenged the little boy next door to a race down the driveway, not the ramp. He was on a bike, she was in her manual chair.

The little boy won. Erica had a fantastic finish with a face plant at the end of the driveway. She flipped the chair and landed on her head. Thank God she had her headrest on the chair!

Now bloody, and potentially dangerously hurt, I called the doctor again. He sent us to the ER. Upon arriving, the ER doctor recognized Erica. She commented that even though she has a syndrome, she is still 7 years old.

The x-rays showed no broken bones, including her ankle. We could not put band aides on the wounds because of the reaction she has to the adhesive. She blackened one eye and almost knocked out 3 teeth, but she survived.

At first, I think she was more worried that she would be in trouble than about her injuries. I considered this a natural consequence and asked her if she would do this again. "No way!" So I told her that she already paid the price for her little stunt.

The next day we went to church. We think that many people thought that Erica went down the ramp and was injured. We told them that it was the driveway, not the ramp. I know that the changes to our house will make a big difference in our lives, but Erica needs to be convinced that she is not a stunt driver first.

EDS Exposure

2010-04-29T11:04:00.005-04:00

As I said in the last post, the construction of the ramp began last Friday. People from our church, Trinity Episcopal, Hearth Professionals and COTF made everything possible. The door installation, and ramp construction took less than 2 days to complete.

While the construction was going on, a reporter from our local ABC news came out to do a story. His name is Anthony Mirones. He only had 90 seconds of air time to tell the story, but he did a great job in such a short time period. He talked to us for almost 2 hours. While he was here, Erica hurt her ankle and Elizabeth popped out her shoulder. Mr. Mirones did capture us putting her shoulder back. I was worried about this being sensationalized, but he did a great job.

Here is the link to the report:
http://www.wcpo.com/news/local/story/Hamilton-Family-With-Rare-Syndrome-Needs-Help/lSVNreKnuUeL9U5auStDUw.cspx

The reason that the news crew was called out was to raise money for our project which is now called "Hometown Home Makeover", but I think it also brought some awareness to a relatively unknown problem. There was a comment on the news web site that said that she did appreciate the coverage as doctors typically only spend about 15 minutes on EDS in medical school.

The ramp is beautiful! It is fully contained in the garage, thus eliminating the problem of rain or snow. Even the door is specially designed to close automatically and opens very easily.

Erica already has her motorized wheelchair and Elizabeth will have her's soon. The ramp allows them to bring in the chairs on their own.

During all of the construction, I meet with our case worker from the Butler County Board of Developmental Delays. We interviewed companies that provide health care workers to come out to the house to help with the girls. It was total chaos, but productive. We were able to select a company and they will start working with us in a couple of weeks.

Because the girls qualified for this assistance, the Board provides some of the funds for the home modifications. We still need a lot of help with the changes, but things are progressing very quickly.

Hearth and COTF are also looking for volunteers with future phases of the modifications. If you would like to volunteer, please email me at caschulze@cinci.rr.com. Even if you do not have construction experience, we are still in need of people that can help carry and lift and do odd jobs.

Again, thank you for all of your support and prayers. These blessings are amazing! I can't wait to be in a house that is safe for all of us.

Help Has Arrived

2010-04-21T15:01:00.002-04:00

We received the wood for the construction of the ramp today! The construction should begin on Friday and continue Saturday. We are deeply appreciative of the help and the support of our church family at Trinity Episcopal Church as well as Hearth and the Cincinnati Occupational Therapy Foundation. I will try to figure out how to upload pictures so you can follow along with us during this transformation.

This was also a good day in that Elizabeth was seen by another doctor and he cleared her from the neck collar. He wants her to be careful and not do anything to outrageous. (You can tell he does not know her). He thinks that her concussions have resolved and her neck does not need a fusion at this time. He will continue to follow her.

The best thing about this is that he was willing to put this in writing and send it to the other doctors. This allows her to be cleared for OT and PT. She will hopefully resume going to school the first week in May!

Praise the Lord!

ERs, Doctor Visits and Injections Oh, My!

2010-04-16T00:34:00.003-04:00

This was another crazy week. It started with me going to the ER again. I had such a horrible coughing fit, that I could not stop. Chuck took me in and the fit was over when they gave me some medicine. I think that I might be over my pneumonia, finally.

On Tuesday, CJ had an asthma attach that landed him in the ER as well. He is also doing better, but the pollen is so strong this year that I am afraid that this is going to be a bad year for his asthma.

I received a call Tuesday saying that my mammogram was showing an abnormal spot. This was totally out of the blue. I was blessed in that they were able to do a diagnostic test the next day. Everything turned out fine, thanks be to God.

On Wednesday, I took Elizabeth to the pain doctor. He did some trigger point injections that were suppose to take some of the neck pain away. She has better range of motion, but the pain level is still high.

This brings us to today. I had to take my mom to the neurologist that has some experience with EDS. He did not think that my mom's problems with not breathing and central apnea were related to her EDS, again, thanks be to God. We still do not have a good answer about the girls. We will have to wait and see.

This afternoon I had to take Erica to the ophthalmologist for an eye exam. She struggles with letter reversals and reading at times. The doctor is the same one that I have gone to for over 15 years. She has done some research on EDS since I told her that I was diagnosed. She thinks that there might be some problems with her connective tissue in her eyes, but needs to re-test her in a month. She said that the lens in her eye might be dislocating from time to time causing reading problems periodically. Again, I was not ready for that one.

Erica has been in so much pain that she could not stay awake during the appointment. She basically fell asleep at 4 PM and did not even eat dinner. She went straight to bed when she got home. This usually means that she is in significant pain. Her neck has been very sore.

She also has tried to use a new set of braces that cover her feet all the way up to the mid part of her calf. Because of her skin being so fragile, she has already developed blisters. I hope that she will be able to use them eventually. We were hopeful that she could use them and get out of her wheelchair at school. We have had to suspend that idea for now. At least she has her power chair.

Tomorrow I have to take Elizabeth to see the geneticist and a flexion/extension MRI of her neck. It will be another long day.

Our mail lady is a wonderful person. She stopped to talk yesterday and I told her some of the many blessings that have come our way. She said that she could not believe that we can continue to smile, despite all of our troubles. But I think that we can appreciate the people around us more because of our difficulties. We know how to live in the moment better now after gaining perspective on what is truly and problem and what is not.

We have experienced too many blessings to get down too long, but it does get to me on days like these. I am happy that I do not have breast cancer, that my daughter is not completely blind and that we have friends and neighbors that are indispensable.

We just don't want to get through life, we want to find the good and enjoy it also long as possible, because we know that if we do not, we might not find those good time any time soon.

I hope you are able to count your blessings. I know I count many of you as our blessings and I thank you.

God Bless.

God is Faithful

2010-04-09T08:53:00.003-04:00

Please pray for us as we continue this process of trying to make our life safer and less painful.

As I have written before, we have been greatly blessed by so many people that are moved to assist us. There has been a fundraiser at school which produced a very large check. We are very grateful for all of the efforts of so many to undertake such a task.

We have also been blessed by the two charities that have come together to raise money and donate time to fix problems in the house and make it more accessible. One is called Hearth and the other COTF (Cincinnati Occupational Therapy Foundation). We are truly overwhelmed that so many people feel compelled to help us. COTF is currently taking donations for materials for the adaptions for the house. (see http://www.cintiotinstitute.com/cotf/)

Also, we have been approved for a Level 1 waiver from the state that will assist with this modifications. This is truly a miracle and are grateful for this as well.

Our current problem is trying to find a vehicle that will accommodate 2 power chairs if not 3. We are working with a company that is trying to find a van that everyone in the family will be able to fit inside. A mini van will only provide room for 4 people. We would need to find a full sized van which raises the price considerably. Again, we have been blessed by a grant from the Allison Kline Foundation to help with the modifications that will be at least $22,000. This is on top of the actual vehicle (in the range of 25,000-35,000). Because of years of out of pocket expenses and the loss of my income, we have little in our budget. Right now, things look impossible.

I know I should not despair because God has provided at every turn on this journey. We are trying to step out in faith that all will work out some how. God has been so faithful, that I feel badly for even questioning. Just the hint of a large monthly payment makes us cringe. We just do not know where it will come from.

Please pray that we are able to keep our eyes on our Heavenly Father and trust, like a child, that He will find a way.

Life Cut Short

2010-04-04T22:33:00.002-04:00

Please pray for Chuck and his family. His younger cousin died Friday in Florida. He is the high school football player ESPN keeps talking about. He fell off a balcony and died. The bad part is the news is flooded with information about how he was possibly drunk and arguing with others when he died. In this situation, which one of us as not done something stupid or silly? His family is devastated. I understand the point some are making as to make sure others do not do that same thing, but really this is more of a media show than a life lesson.

Put yourself in the shoes of his parents. They will never be the same. Please show mercy and pray for them.

"Do not pass go. Do not collect $200"

2010-04-04T22:03:00.003-04:00

Well, I guess I know why I was so tired. I went to the doctor on Tuesday and got a "Do not pass go. Do not collect $200" pass to the hospital. I was not ready for this one, but I don't know why it surprises me to go to the hospital after all of the trips in the last couple of years!

Anyway, there was so weird stuff with my heart, that resolved, but they said I had pneumonia. I was hooked up to an IV to get antibiotics because I am allergic to almost all known medications. I was thinking I would be a very boring patient but then my head swelled up like a balloon! I was allergic to the antibiotic again! I was then switched to two different antibiotics and sent home on a third. Of course, as I am writing this I am breaking out in hives from the antibiotic again! Really? I can't just take a medicine and get better?

I was introduced to a cardiologist, in the hospital that actually knew about EDS. She also knows my new neurologist. I had to go to a new neurologist about the abnormalities in my brain (no kidding). I was told by my geneticist to play down the fact that I had EDS so the doctor does not turn and run. So I was expecting a very quick visit. Well, it was not quick. He came in the room and said, "You'll never guess what I did yesterday." As strange as many of the doctor visits have been lately, I was ready for anything, except what he told me. He said that he had just given a talk at the children's hospital on the genetic reasons for strokes and part of his talk was about EDS. He got that same "sick" look on his face as many other doctors. He as very interested in my case as my images were not so ordinary after all. He got really "excited" when he heard about my mom. He wanted to see her right away. He was hopeful that he could save us a trip to the Mayo Clinic, which was rescheduled for May. He said that this was an interesting case and he only had one other patient with EDS and they did not have the same issues. I just told him I was tired of being interesting. The truly scary thing about this is the ramifications for the girls. When I went to leave, he said if I was okay with this news or have any questions. I asked him if I needed to worry this very minute. He said, "No." I said, "That's good enough for me!"

Back to the cardiologist, she said that I had to keep my blood pressure very low, so I did not have any more blood vessels breaking in the brain because of the EDS. So, add another doctor to the list.

I did get to check out the hospital in West Chester as this is the one that the spine surgeon would like Elizabeth to have the C1-C2 fusion. We have been very leery about considering a surgery outside of a children's hospital but many of those fears were put to rest after the visit. The nurses were very nice and truly care for their patients. We still have a long way to go on the decision, but it did help. I think I would have been just fine researching the hospital with a tour, not an admission.

"A Lantern to Our Feet"

2010-03-27T12:51:00.003-04:00

Today is one of those days where everything is difficult. I have been totally exhausted for weeks. I went to the doctor a couple of weeks ago and found out that I have bronchitis. I took the antibiotic for 6 days, but I had to come off of it because of yet another allergic reaction. I was then put on steroids, which my body did not like either, but I was able to finish the course. So on week six, I am still not better. I am having trouble catching my breath and I have no energy. I know I am whining, but this lack of energy means that I have to rely on Chuck more and more. He is always busy with work and taking care of us, I really don't like it when I am unable to do more in the house and with the kids.

Besides the normal doctor appointments, I have been working on paper work for out taxes as well as BCMH. It is truly amazing the amount of money we spend on health related items. We do have insurance and some help from the state program called BCMH, but even with that, we still average over a $1,000 of out of pocket expenses excluding our premiums. Many people are in the same shoes and we all struggle, but when I see it all on a page, it is overwhelming. The debt that we have due to our medical expenses is stressful as well.

As an update on CJ, his MRI was normal, thank God. He will see his pediatrician soon to discuss managing his migraines. We have also discussed having him go back to see the psychologist that helped him over the summer.

I think we are closer on making a decision on Elizabeth. She continues to fall without control of her hands. She has suffered a spine concussion as well as a head concussion that caused visual disturbances for a week. We don't know when she is going to fall but there have been some frightening consistencies: an electric shock feeling, loss of control of her body which we think is causing the falling, and traumatic injury when she does fall. The other symptoms are disturbing as well which include numbness in her chest and neck, difficulty swallowing, intermittent buzzing in her hands, dropping of objects from her hands and the constant pain. It looks like the only doctor that we can do anything about it is not at Children's. It is a big decision and the added uncertainty of a child having a surgery at an adult hospital makes it more difficult. I also understand that the doctors at Children's cannot and will not condone such a surgery.

With this I have asked God to be "a lantern to our feet." I know He will show us the way I just have to be open to hear it and accept it in faith. It is proving very difficult to discern. Please pray for us

"For what we see is tempoary..."

2010-03-09T21:47:00.005-05:00

Scripture reading for me has been such a blessing. If you think about it, these are 26 letters arranged in a sequence of letters. But after reading these passages year after year, they open up mind-blowing truth that I had no idea about the year before. Take, for example 2 Corinthians 4:17-18

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

In the course of the last 10 years or so, I have read this same passage over and over. But today, it was like I had found a jewel. This has given me so much peace. I read something by Max Luca do today. In this particular passage it talks about the disciple John. John was very close to Jesus. He was a witness to his miracles, healing, sermons, triumph into Jerusalem and only a few days witnessed his death upon the cross. Did John understand why all of this had to happen? Could John grasp that Jesus had to go through all of these really horrible things only to claim victory for all of our sins for eternity? No, he saw a friend go through some really bad stuff and die. (I am greatly paraphrasing Mr. Lucado)

God sets all things for good, even when we cannot see it. Where faith comes in is trusting this. In Forward Day By Day the commentator said that the greatest quote of the bible was "Be not afraid, only believe." (Mark 5:36) What treasures we will be able to claim if we lived out our lives this way. God knows all and is good all of the time.

I want to be very honest with you, I cannot say that I am able to stand on these truths and praise God through every moment of every day. There are many days that I feel like I just can't go on. I cannot face another doctor appointment. I cannot see another tear come from my children's eyes because of pain that I cannot relieve. I can't get my body to move one more step because the pain I am feeling. I cannot face another ambulance ride. But in these moments, God shows up with such power and such peace, I know that I am not alone. He does not leave me in the pit any longer than I want to be there. Some days I choose to be in the pit. I despair and will not be comforted. I have to allow myself to be that way for a time. But I also know that when I want out of the pit, all I need to do is pray and the Shepherd hears my cry and he places me on his shoulders.

Today it was another 3 appointment day. Elizabeth was finally seen by a orthopedic spine surgeon. I believe that God was able to get her seen by this doctor, because only God could have done it. He came into the room saying that her neck was fine, wean off of the neck brace and start PT. All of this before he even looked at her. God showed up in the room and by the end, he was beginning to see that there was more to this story. Please all of you remember that I do not want surgery for her. I know the pain associated with this surgery. That being said, she has been out of school since September. She is sleeping in the dining room. She is unable to play outside or walk on her own for any length without the risk of severe injury. I really don't care what the solution is, we just need one!

This evening, I had to take CJ to get an MRI of his head. He has been suffering from migraine headaches for the last few months. I think the results will be normal, but there is always that unknown. The poor kid certainly has a reason to have headaches! But even if it is due to stress, we need to get them under control.

I reminded all of my kids today that they are all gifts from God and not burdens. I think that they needed to hear that today. CJ could not understand that he is a gift to me. I told him that if I treated him like he was a burden, I was insulting God, but cause he blessed me when he chose me to be his mom.

I might have another outlook tomorrow, but I wanted to claim my praise for a God that loves us enough to let us choose to love him. He is patient to wait for us to decide to call upon Him. In no way am I claiming to be righteous and anyone that has known me for any length of time would not use that adjective to describe me but I love this verse:

"The righteous cry out and the Lord hears them. He delivers them form all their troubles. The Lord is close to the brokenhearted and save those who are crushed in spirit. A righteous man may have many troubles, but the Lord delivers him from them all." (Psalm 34:17-19)

May all of you that say prayers on our behalf be blessed as well. Someone told me on Saturday that his prayers for healing for Erica did not happen and I disagree. There is healing and then there is different healing. I do not believe that God ignores our cries for healing. He frequently answers our prayers differently or not at the time that we think it should occur, but he does answer them.

Extremes

2010-03-05T21:27:00.005-05:00

It seems that every day we are amazed at the extremes in our lives. Elizabeth has has been in incredible pain lately. The last two days she has not wanted to move. If you ever met her, you would know that this is not like her. Attempts to reduce her pain are not helping. I contacted some of her doctors and they suggested an EMG. I am really hoping that the pain will resolve itself before they push too hard for this test.

An EMG is a test that checks to see if the nerves are firing correctly. It involves sticking needles under the skin and running an electric charge down the nerve. Erica had one done last year and it was awful. She took medicine to calm her and keep her from remembering the test, but it did neither.

I think that the muscles in her neck are so tight that they are pushing on the nerves which is causing the pain. I think this is a similar pain to what I experienced before my last surgery. I wanted to gnaw my arms off! There is really no way to reduce the pain.

I took my family members to at least 8 doctor visits this week. One of those visits was for my son. He has been complaining about headaches. At first we thought the headaches were due to a change in his prescription for glasses. The headaches have increased to almost daily and now he is sensitive to light and sound. He also is seeing flashes of light and a ringing in his ears. I truly thought these headaches were due to stress. I was shocked that the doctor wanted and MRI.

I am not quite sure why it shocked me after all we have been through, but it did. He classified them as migraines and he seemed very concerned. Again, I thought he would send him back to counseling and very reassuring that it was probably nothing. The doctor did neither of these things. He came in smiling and left concerned and writing prescriptions and sending him for testing.

I still think that it will come down to stress. This kid deals with more stress than any one should have to endure. He called himself a "human elevator" when I asked him what it was like to be in our family. This shook me to the core. My husband and I intentionally do not ask a lot of him. He knows that he is one of two able bodied members of our family. He does many things without being told. He said that he feels very worried when my husband leaves out of town on business. It makes my heart ache when I think of the pressure on this kid.

Elizabeth watched a movie today called "Beyond Narnia." It was a about C.S.Lewis and the character played Lewis narrating the story of his life. It was a very well done production. It was the very end of the story where Lewis describes the agony of losing his wife to cancer. He doubts his belief in God. Desperately he looks to God and asks for an answer to why. He said that God said nothing. He only looked at him with a compassionate face. He said that it was like Aslan. In the story his mane was cut off brutally then he was murdered. But he came back to life and he was stronger than before. His mane was even more impressive. But if one was to look carefully, you could still see the scars.

I think my kids will be incredibly strong after all of this. They will be able to withstand anything that life throws their way. This will come at a price. Their roots will run deep and their foundation strong, but their is much they must endure.

As a mother, this horrifies me. I have some days that in consumes me. But "Perfect love casts out fear." And there are times that I can allow that love to consume me as well.

On the other extreme, we are seeing the hand of God at work in our lives. He has done some many things on our behalf that it amazes us every day.

The organizations that have agreed to help us with our home modifications are called Hearth and the Cincinnati Occupational Therapy Foundation (COTF). They have agreed to help us with the whole project. The total cost, if we were to attempt this on our own would be close to $100,000. But because there have been so many people willing to help us, the cost will be lower because of donated labor. This is so amazing, I cannot quite describe how humbling I feel. Just knowing that there are others willing to work with us and help us in any way they can is hope enough to keep going. But help that will be so needed and expensive and impossible for us to do on our own goes beyond what words can say.

Here is a link to the COTF http://www.cintiotinstitute.com/cotf/. They are the ones that will accept donations on our behalf. It is tax deductible. We are going to need as much help as we can gather to get this done, but I have confidence that God will not abandon us now. We have comes so far and have seen Him move mountains!

What is That? A Light at the End of the Tunnel?

2010-02-23T18:55:00.004-05:00

Unbelievable blessings continue to rain from the sky. We are seeing things that God set in motion years ago to help us that this particular moment. I am amazed at how beautifully His plans unfold. We know God is with us right now. His presence is wonderful.

The elementary school where two of my children attend had a fundraiser for our family. The principal and my daughter's teacher with the PTC did all of the work. There were hundreds of people at this event. My oldest daughter was not able to attend so my husband went. He said that every time he turned around, some one else was offering help or giving encouragement. He said he spent the night in tears. He was so overwhelmed by the compassion and love shown to our family.

Another example of blessing came from the lady we hired a company to come out and evaluate our home. I mentioned that she talked to some architects pro bono. Well, she did much more than that. She has presented our story to charitable organizations here locally. She said that before she could even come to the part about asking for help, they already offered it! She has spearheaded a giant renovation plan with accommodations for all of us. This is life changing stuff she is doing! The groups are Hearth and Cincinnati Occupational Therapy Foundation. They are like angels and I believe that they are doing God's work. We are so humbled by their efforts, money time and care for our family. If we can make our home safer my children and I will see a huge benefit in the level of pain.

The next day we were visited by a support coordinator from the Board of Developmental Disabilities. I had applied thinking that maybe they could help, but I did not think we would qualify. Not only did we qualify, but we approved on emergency status! This means that there is a possibility that some of the materials that need to be purchased for the plan from Hearth could be funded through this program! I spent a long time in the special education field and I rarely had a family that received this support. I have never seen it happen so fast and in such a complete way! God had it all arranged. Even the support coordinator admitted it was the "hand of God" doing all of this for us!

If we can keep us from traumatic injury and strengthen our bodies we have a chance to lead a more normal life. We have a chance of avoiding big surgeries in the near future. We have a chance of living without so much pain.

We praise God for all of this because all of my effort lead to years of frustration and anger. When I finally realized that I could not do this and God could, He has shown me that His way is much better!

God is So Good

2010-02-22T00:16:00.002-05:00

Here is what we know right now. First, Elizabeth is still falling. So far she has fallen and received a concussion to her spine and to her head. The spine left her numb in the chest and neck area. The head concussion left her eye sight distorted for a week. A pattern is forming that is disturbing... she is not putting her arms out to catch herself. When anyone falls, there is an automatic reaction to put out your arms to protect yourself. Elizabeth keeps falling and she is getting injured so severely because she is not putting her arms out.

This was confirmed, at of all places church! We went to service on Ash Wednesday and I promised CJ that if he was asked to acolyte, I would serve with him. We brought Elizabeth in her wheelchair. I glanced up and saw that she came up the stairs for communion. I saw that Chuck was right behind her. I did not think anything of it until Fr. Daggett told me to leave the alter and go to the sacristy. From there a friend of mine directed me to Elizabeth on the floor.

I cannot relate the picture I saw. She was lying with her hair encircling her head like a hallow. She looked beautiful, but she was hurt badly. Her left leg was twisted horribly and her neck did not look right.

I found out that Chuck did follow her up and back from the communion rail but she went into the front pew from the other side. She was only a couple of steps ahead of him and she just collapsed. She said that her hip and her shoulder were out.

I thought that since her shoulder was dislocated that she put her hands out, but that was not the case. The people in the pews said that her hands did not break her fall, she just fell backward. She dislocated her shoulder from the impact from the fall.

I say that God is good in this situation because He is. Elizabeth stayed very calm through the whole ordeal. We tried to put her shoulder back in, but she made us wait until the service was over. She thought the church would empty, but people just stayed and offered to help and prayed.

The only time Elizabeth cried is when we tried to put her shoulder back in. The rest of the time, she was so calm. When I was close to her, I could smell God's presence. I am not quite sure how to explain it other than it was beautiful. God wanted us to know that He was there and He was in control.

The Hamilton fire department was wonderful and saw the obvious dislocations and loaded her up into the ambulance carefully. But, as with most of our adventures, by the time she made it to the x-ray table, she was already back into alignment.

Why go? Well, we could not risk moving her wrong which could have torn her hip tendon more, or injured her shoulder as well. The biggest problem would have been her neck. She hurt it again with the fall.

We left the ER with her parts snapped back in place, but we know that it was not an accident. For some reason, God had a plan. I am claiming this publicly so that I can look back on this some day and hopefully understand it more, but I might have to wait until I am with Him. Either way, "Those that put their trust in God will not be shamed."

God is Getting our Attention

2010-01-24T22:16:00.003-05:00

It seems that God wanted the attention of the doctors once more. As I said in my previous post, Elizabeth fell backward down a full flight of stairs. Well, we just found out how good God is when she went back to the spinal surgeon. She has fallen two more times. Once was out of bed and she broke her neck brace (no, I am not kidding) and the other more serious in the bathtub. The last fall made her hands numb and gave her a spinal concussion. When the spine orthopedic surgeon heard about the last fall, he ordered a regular MRI and a rotational CT scan.

She went to visit this same doctor that operated on Erica, my mom and me. Just last week he told my mom that she has cranial/cervical instability. Basically her head is not attached to her body. This was devastating enough, but when he told Elizabeth that she has it too, we were blown away. When the doctor saw the image of her instability, he was very pale. He said, "There is no physical reason for her to be living right now. God took care of her." We both knew we were looking at a miracle, there was just no denying it. I asked if the fall could have done this damage and he said no, it was not damage that we saw, it was the way she was born. He said, "The fall was God's way of getting our attention."

To be honest, I knew that this doctor had another way to detect the cervical spine instability, but I thought I could wait to find out for Elizabeth. She had been going through so much with her hip, I could not bear to know about this too. But, that was not God's plan.

She was supposed to go back to school this Tuesday. Needless to say, she is not returning until the issue of the stability is solved. Some of the doctors wonder if the instability created some of the clumsiness that she has experienced. I don't know if that is true, but I do know that God has taken care of all of us.

She is very down and frustrated right now. I cannot blame her. At best, she is looking at brain/neck surgery very soon. Some of the doctors would like to wait until her spinal concussion is healed.

All I know is that just a few months ago I was reassuring her that she would not need a wheelchair or the major surgeries that we have all had to undergo. I never envisioned Elizabeth being in such a state as this.

It breaks my heart to see her so isolated and lonely. Her bouncy personality has taken a hit this week. I think we have all had a major hit on our enthusiasm recently.

What is really frustrating is that our house is the source of so many injuries. The stairs and the bathroom and so dangerous. We are trying to find help with these issues, but it is very time consuming and humbling.

This Friday, the elementary school is holding a benefit for our family. We are overwhelmed at the idea that people would go out of their way to help us. We continue to be blessed abundantly each and every day.

As much as I am excited to see miracles and receive such incredible blessings, as a mom I just ache for all of my children. CJ is really struggling this week. Please pray for all of us.

What Would You Do?

2010-01-02T17:23:00.005-05:00

Please let me thank all of you that have continued to pray and support our family. We consider ourselves blessed every day because of the unbelievable miracles that occur daily.

Elizabeth took a tumble down a flight of stairs yesterday. We had another ambulance ride to Cincinnati Children's, but nothing broken. She is wearing the 'always in style' cervical collar because she hurt her neck. Her hip was banged up, but she is better than Humpty Dumpty. Considering what could have happened, we are very blessed.

I know that God is watching and protecting all of us and calling many to pray around the world. The other day a wonderful brother in Christ visited us from Pakistan. He is a bishop and runs a church and Sunday School for a small community of Christians. He told us that he has a bounty on his head of 100,000 rupees. The Taliban are anxious to silence this dynamic man of God. When asked if he was going back to Pakistan, he said yes. Then with an intensity that I can still feel he told us that he would go back because more people needed to hear The Good News. He has been in prison, tortured, hunted and threatened, but he will not be silent.

Recently, the Taliban burned the church along with over 200 homes of Christians of his congregation. He resolves to return and continue working with the people and especially children so they will know the unfailing love of God.

He said that he came to the US to remind people here of the Good News. We can go to church any time without the worry of death or torture. The persecution comes in the form of shame or being "politically incorrect". We sleep in on Sunday because we work too hard, have a hangover, too sick or have too much work to do. Would we go to church if that meant that we might not live if we openly worship Jesus Christ? Would we go if that meant that our children would be hurt?

This bishop that came to our country as a missionary (think about that for a minute) told us that as good as we have it in the US, this is not Heaven. Heaven is much better than anything that we have now. Our problem is that we are over fed, content and sleeping. We have everything so we think we don't need God. We think because we work hard, it is our work that supplies our things. I say "we" because I am not immune from such thinking.

I really have to think about if I would continue to be a follower of Christ if it came with the consequences like our Brother in Pakistan faces daily. I would like to think that I would not cast down my faith and deny Christ, but I am not 100% sure.

What would you do?

The Sin of Pride

2009-12-12T22:01:00.002-05:00

The last two years have been hard on everyone in our family, but some of the changes that are occurring are not bad. For instance, I have had to rethink who I am. A couple of years ago I would have described myself as a wife, mother, director of christian ed, follower of Christ, gardener, organizer, independent, strong, and a person that likes to help other people. Not that any of those descriptions are bad, but there was a major flaw in how I viewed myself and I believe that in the light of the incidents of the last couple of years, I can no longer view myself the same.

I am not simply what I do. I know I have spoken on this topic before, but I think I am beginning to understand more. The way I was raised, self identity was in what the world could observe... a kind gesture, and thoughtful act, a giving spirit. But in reality, what I was doing, unconsciously, was dividing the world into two categories. The first is the givers and the second the receivers. The first group had the time, money or talent to give to the receivers. The givers feel good about themselves because they are giving and the receivers get what they need, problem solved.

The problem with this type of thinking is one has power and the other does not. The receiver is at the mercy of the acts of the givers. The power is implicit in that the giver has the control. If a receiver balks at this notion, they are labeled ungrateful and the giving ends.

But what happens when a giver must become a receiver? This is the situation that our family has found itself. For so long, we have enjoyed giving to others. We did it for a variety of reasons and I am not saying that giving is a bad thing. But in a way, my thinking was wrong. Not only wrong, but sinful.

My sin is and was pride. It is pride that kept me from accepting help from others for so long. "I am a giver, not a receiver" I would tell myself. I had great difficulty in accepting help from others because I could not possibly need help, we are not in that group. I could not put myself in that vulnerable situation.

I would pray to God to help me and when He did send the help, I would not accept it. My pride was too much for me. My pride was hurting our family.

Once I started inching my way down the path of acceptance some pretty remarkable things have happened to our family. The help is amazing.

So far, Children's Hospital has forgiven a couple of our big bills. We still have a long way to go, but they have been forgiven.

The elementary school where CJ and Erica go is holding a fundraiser for our family.

Hundreds of people pray for us daily.

We received a gift certificate for Kroger when we only had $9 in our account for the next 9 days.

An anonymous donation of paper towels and toilet paper showed up on our doorstep.

A lady that we hired to give suggestions about making our house safer for the children and me talked to 2 architects and other specialist pro bono.

Our church has offered to pay for a ramp and construct it so we can get the chairs in and out of our house.

A several people have sent checks to us to help with the cost of our medical bills.

A friend of mine gave me a ticket to see a musical in Cincinnati and another friend took me down with her.

People have taken care of our children, helped clean our house, given rides to doctor appointments and surgeries.

The list goes on and on. There are many more acts of giving that we have received. More than I can list. I believe their giving is the hands of God touching us.

When I talked with my real father this morning, we were discussing these issues of pride, power and the discipline of being a christian. "When you help the lest of these, you help Me." I have a new perspective on that phrase now because we are all just one moment away from being "the lest of these." I had erroneously thought that because our family was blessed, we had to help the less fortunate, but it is really all of us just taking care of each other. There is no distinction in God's Kingdom between His followers. In fact, He said that anyone that comes to Him like a little child will be received in His Kingdom.

Judgement from other humans, no matter how noble it sounds is not what I think God meant when he called them the lest of these. He said blessed are those who are poor, who morn, who are poor in spirit, who hunger.

There is another christian song that says that we are all just one phone call from our knees. We are all the least of these. We are all in the same boat and have our trouble. I still think that one person's troubles are not greater than the other. We all have things that we have to deal with that are difficult. The prayer that I ask all of you to pray for me is that I will be release from the sin of pride and that I will be forgiven.

God is good and we praise him for the many miracles that have happened and will happen in the future. Truly, it will take a miracle for our family to be safe, out of pain and stable again. I know that when I am in the position to give again, it will be with a different heart. I will be giving because I have received.

She Will Straighten Them Out!

2009-11-26T02:12:00.003-05:00

You never know what might come out of Erica's mouth!

The talk in the house has been all about Elizabeth's arrival to womanhood. My mom and I tried to make it a celebration and took her to dinner. Everyone in the house knew what had happened, or so I thought.

Erica told a friend that Elizabeth now knows how to straighten out men. I was really confused about why she had said that. When I asked her see said she had heard us talk about "menstruation" and she was convinced that Elizabeth had learned a great secret of life!

Of course, the boys in the house all agreed that Erica's assessment of the situation was more right then wrong!

A New Record

2009-11-26T01:27:00.003-05:00

Seriously, I need to think about changing the name of this blog. I don't want to have more material to write about! I would like to have a nice, boring night.

My mom invited our family over to celebrate my birthday. We went by and picked up my grandma and drove to Mom's house. Mom lives in a cute little house in Hamilton that is all one level. You would think this would be a great place to be for my girls because of this fact. Well, the last time we were there Elizabeth tripped on a vacuum chord and injured her hip. This was a couple of days before the ambulance ride from school back in September.

Anyway, Elizabeth and my mom made a great dinner and we were just about to eat when I see Erica's legs give out as she was coming around the corner. Her ankle then gave way and her full body weight landed on the ankle she broke over the summer. I knew it was bad before she could even cry. It reminded me of the slow motion footage they have during football games where everyone winces.

Chuck took her to a bed and we applied ice. She said it was broken and from the look of the swelling, I guessed she was right. I called the girls pediatrician and he told us to bring her into the ER.

Chuck said that he would take her to the ER, but Erica was not happy about this. I think she cried more about me not going then she did about the injury. I stuck to my guns because I thought we could salvage a little normalcy from the evening.

The rest of us ate dinner and started to clean up the kitchen. My mom said that she was doing better, but I could tell she was tired. I was anxious to get home myself. CJ and Elizabeth were helping me clean up. I sent Elizabeth to find my purse. She walked into the family room and apparently twisted as she walked.

She felt a pop in her hip and just froze. She was around the corner so no one saw her. She wanted to keep this quite as it was already a crazy night, so she called CJ to her. CJ then came to me and whispered that Elizabeth hurt her hip.

When I looked at her I could tell she was in a lot of pain too. I tried to help her to the floor, but it was difficult. Try to sit on the floor without flexing your hip some time, it is almost impossible.

We finally got her down and I tried to reduce the joint. I just did not have enough strength. I tried to have CJ hold the top part of her body while I pulled, but it was not going back in. The only person able bodied enough was Chuck and he was already in the ER.

I decided to take my grandma home and stop by our house to pick up a TENS unit, pain meds and a heating pad. As I was in the car, I got a call from my mom saying that Elizabeth has to use the bathroom. No one could help her go.

I tried to call Chuck but the cell phones get no reception in Children's ER. I went back to my mom's with the stuff and see if she could put it back in herself. By this time, she had been down for quite a while. I decided that I would head to the ER and swap out duties with Chuck. I was hopeful that he would be able to help her at least go to the bathroom.

I called the front desk of the ER and explained that I had to get a hold of my husband. I did finally talk to him and he said that Erica did indeed break her ankle. Then I told him about Elizabeth and the whole bathroom deal. I told him I would switch out with him. The ER staff had to think we were mental!

Chuck raced back to my mom's house only to find out he was too late on the bathroom trip. Mom was very resourceful and laid down plastic and a bunch of towels. By then Elizabeth had had the TENS unit on, pain meds in her system and heat applied to help make the realignment easier. He tried repeatedly and it was not working.

Chuck called me and I called our pediatrician back. I told him what we tried and for how long. I asked him if there was anything else we could try so we could avoid going back into the ER. He told us what we knew was coming... go to the ER.

The question was, could Chuck get her into the car by himself. Being the stud he is, he was able to get it done with a little help from CJ. We were all relieved that we did not need another ambulance ride. Then the decision had to be made about which ER. The smaller, closer ER did not have an orthopedist. If it was dislocated, they would have to transport her to the base hospital in downtown Cincinnati. I told him that by the time Elizabeth gets into the car and into the ER, chances are her hip will already be back in place so we would take our chances and go to the closer ER.

So Chuck is back for another episode of ER. We have had multiple trips in a week, but this was a new record; two trips on the same night!

Elizabeth's stay was longer because of a trauma case came in during her visit. The ER doctor was successful eventually in popping it back. It did not show up on the x-ray, but everyone could tell when it popped back. She was relieved immediately.

A couple of days later we talked to another doctor and he thought it was a tendon that was in the wrong place. It still hurts like crazy, but it would not show up on the x-ray.

Everyone was finally home at 2:00AM. Again, when can we have a nice boring evening. I feel like I am on the world's craziest roller coaster and I want off!

Heaven is a Face

2009-11-18T19:38:00.005-05:00

I don't know if you listen to Christian pop, but there is a guy named Steve Curtis Chapman that has a song called "Heaven is a Face." For those that don't know about the song, it is about his daughter that died last year. She was adopted by he and his wife and she was the subject of the song "Cinderella" another beautiful song. Anyway, the little girl died last year in a car accident and the subject of "Heaven is a Face" is describing all of the little things that he misses about his little girl and that heaven will be like it was before she died. He goes on to say that he knows that heaven will be all of this and more. It was also a reminder that Mr. Chapman would consider what we are going through with our girls as "heaven" as well. It really helps put things in perspective.

The reading in Revelation 21 was just what my soul needed today. The description of the new heaven where every tear is dried and there is no pain. The promise that all that is in the world of troubles we live in is not our eternal hope. Nothing that the deceiver can throw at us can keep us from fulfillment of that promise!

I started this email earlier this evening. Since then Elizabeth dislocated her hip again.

Heaven for me will be where my kids don't cry themselves asleep because of pain.
Heaven is a place that my son does not worry about his mom.
Heaven is a place that my husband does not look so helpless in the operating waiting room.
Heaven is the place that my baby girl wants to go because she does not want to hurt anymore.
Heaven is where my mom is free from pain and despair.
Heaven is where there is no enemy.
Heaven is where there is not the sound of an IV.
Heaven is where there are no doctor's offices.
Heaven is where I will be able to run with my kids.
Heaven is where I don't have to explain EDS to first graders.
Heaven is where I will be with God.
Heaven is where I will be complete.

Already Convicited

2009-11-18T19:23:00.003-05:00

The first night that Elizabeth was in the hospital it was rough. We had to miss Erica's debut in the school play and she had a leading part as a first grader. Elizabeth finally got to sleep at around 4 in the morning and so did I.

At 5, there was a knock at the door and I was met by a police officer telling me that I had to go with him. Frantically, I am trying to remember if I assaulted any of the doctors yet, and the answer was no. I asked him why, feeling very uneasy about leaving Elizabeth because I promised that I would not leave her alone in the hospital. We are less than a day in and I was already breaking my promise.

He explained that someone had broken into my car. I explained that a break in was not the worst part of my day, I again was reluctant to go. Finally he told me that a report had to made and I had to go to the parking garage with him. On the way down he told me that this had not happened in years and only 3 cars were targeted.

Of course, now I am laughing because why should I expect anything less! Seriously! I go down and realize that nothing of value was taken. The car is still there, the garage door opener still hung on the visor. The glass on the passenger side was smashed and glass was strewn all over the front seat. The glove box was torn apart and our CD collection was rifled through, but none were taken. Then I noticed that on top, the audio book of Billy Graham's life story was left untouched.

Of course the police officer and the other victims thought I was nuts because I thought this was really funny. The potential thief not only did not take anything from us, but if he had any sense at all he left convicted by a higher court before he left the car!

The Game Changer

2009-11-17T21:27:00.006-05:00

The day began with my husband and I explaining to Elizabeth that the doctors cannot find a way to surgically repair her hip right now. Chuck and I had known this was probably the outcome of the inquiry of other surgeons, but we had a little hope. Apparently Elizabeth had a lot of hope and was devastated when we told her. Chuck quickly tried to cheer her up, which just send me into a fit. She just learned that no one can help her hip feel better and she will only get worse. This did not seem to me to be the time to expect her to look on the bright side. My anger did not help the situation. I did tell her that this non-fix answer is not acceptable and we would continue to ask and push for a good solution.

I checked my email this afternoon and there was an article from EDNF (Ehlers-Danlos National Foundation). The article was about a young woman that was a star basketball player. She hurt her hip and had a couple of unsuccessful surgeries until the doctors realized that she had EDS. It is amazing how God can use so many ways to comfort us when we are low. I printed out the letter for Elizabeth to read. She wrote a letter back immediately. This is what she said:

Hello, my name is Elizabeth Schulze. I am 11 years old and have the same condition. I have a tear in my hip and found out today that they can't fix it. Your story helped me get through the bad news by knowing that someone else understands what I feel. Thank you for letting me know that I am not alone and neither are you.

I had been emailing all of her doctors and Erica's most of yesterday, so I intentionally did not do much today. It was 7 hours of almost no stop communication with doctors, therapists, insurance companies and bill collectors. By the end of the day I was physically ill with worry. Of course, I had received the news about the hip yesterday. I was also waiting on an answer about my mom.

Here is the deal, back before my C1-C2 fusion, I had a really bad spell where I was passing out, disoriented and so on. I was hospitalized a couple of times and the doctors found a lesion (bleeding) in my brain stem. There were many theories about why and no one really wanted to tell me much other than it was there. I know I did not have this problem 16 years ago because I had a MRI done after I was in a bad car accident and no bleeding was shown on that brain MRI.

My mom had surgery last summer and was in ICU for 18 days because she did not have the drive to breathe. The doctors insisted that it was not neurological. Well, she had another surgery this summer and she did not breathe again after surgery so finally they decided to get some answers. Mom got an answer today. She also has a bleed in her brain stem.

A few weeks ago Dr. Tinkle talked to me about the possiblity of Mom having a leision as well. I asked if this then could be connected to EDS to which he replied, "It would be a game changer."

Mom told me the news on the cell phone as I was in a restaurant with my family celebrating the 16 anniversary of our first date and my birthday tomorrow. I looked across the table at my kids. They are so beautiful and fun. We were all laughing and talking. The thought that at any moment I would not have the privilege of seeing their smiling faces, made that moment all the more sweet.

To be honest, I am more relieved than upset. My dad lived to die. He got a deadly diagnosis and died long before his earthly body did. I will hope to never do this. I want to enjoy and love and live every moment. Through all of our trials and tribulation there have been extraordinary times of joy, peace and love.

Do I think that I am going to die anytime soon? No. But I do want to enjoy all the time that I can. I want to make the most of the time that I am not in pain or in a doctor's office. I want to remember that this life is not the end. This is not our home. Our home is a place where tears are not shed and pain is not felt and debt is not remembered.

I am not sure what the outcome will be from this news. I do not know the implications that this will have on my daughters. I don't think the doctors even know. I do know that this illness is not who I am and not who my mom is or who my girls are. We are not broken. We are what we are supposed to be and not mistakes of a gene. We are loving, caring, strong, intelligent females.

You Are My Protection by CJ Schulze

2009-11-02T23:29:00.002-05:00

This is a psalm that my 9 year old son wrote on his own this summer. I read it often as it gives me hope. Again, my children minister to me. I cannot take any credit for this. This was between God and my son.

You Are My Protection

You are like a big, big tent.
No evil spirit can get through you O Lord.
When he tries to attack, you protect me.
because you are my protection!
You warn not to go to far,
but some people disobey.
Some fall off of the dark bridges,
but you grab them and they are safe.
But some walk into the dark tunnels.
You see both doing bad.
The Lord saves them both
but they both have consequences.
Lord you are my protection.
You loved the world
You gave your only begotten son.
We all sin.
We ask for forgiveness.
You send that sin to the foot of the cross.
You forgive us.
He doesn't forget about you.
He still loves you.
We practice and practice.
We get better but not perfect.
The only man who was [perfect is Jesus.
He is always with you.
Lord, you answer all of the prayers.
We might not think that,
but He does.
And Lord you're my protection.
When we walk in the dark house,
You shine your flashlight on us and we are okay,
but we still have consequences.
No evil can defeat you.
Lord, your my protection all of my life.
I am glad you don't let me down.
Your tent is like love, faith, joy and hope.
You keep me safe.
You watch me from heaven.
We are made in God's hands.
Not me or you look alike.
And don't you forget that God made you special and he does not forget about any of you.
Lord you are my protection.

Despair Shrinks Your Brain

2009-11-02T22:12:00.002-05:00

Much has happened since my last post. Last Monday we attended a "care conference" with a few of her doctors to discuss her hip injury. The problem is no one has attempted to repair a torn hip tendon on a child with HEDS. Next, the attempts that have been made to surgically repair torn hip tendons on adults all have failed. Again, we are faced with uncharted choices. This left us with the problem of what to do since letting the tendon heal on its own is also not possible. We left the meeting with the task of not only telling our child that we cannot fix her hip, but also we cannot control her pain and she would be out of school indefinitely.

When we left the four hour meeting to pick her up, we find that she began vomiting while we were in the meeting. My husband went out of town on Tuesday morning and she went to the ER Tuesday night and stayed over until Wednesday. My mom, who was also ill had to take care of my other two kids who were also sick. While she was staying with my children in my house, she accidentally left the stove on in her house. The result was only some burnt plastic, thank God!

By Wednesday, I was a basket case. I had not slept in weeks and I was very down. I did not know how to console my daughter or anyone else in our family including me. Again, in desperation I prayed to God to lift us up knowing that I did not have the strength to do it myself.

It is wondrous how God answers desperate prayers. It is never in the way I expect. Usually it is in the small things that people say or do that confirms my faith in the Lord. The next day 3 people called out of the blue to tell me that they were praying of our family. Most of the prayers were centered around one theme: accept My help.

I am not quite sure why this is so difficult to me. God has had to yank out every last bit of pride and self reliance in order for me to see what my mind knows to be true. I know that I need the help of others, but it is so much easier for me to do it myself. What I keep missing are the arms that are out ready to catch and help. In my stubbornness, we have suffered much. God needed to completely crush my pride in every aspect of my life.

The last one was the faith of my child. I realized that one of my children believed that God was scary. She thinks that if God allowed all of this pain then He is scary. She had lost trust in Him and she did not know which way to turn. She knew that admitting this to me would hurt me and it did. I mistakenly thought that the one thing that I have done right is pointing my children to the Lord and His goodness. But it seemed that I failed at that too and I needed to rely on others to help my daughter to realize that God is Love not pain.

We decided to give this also to God and we wrote in her blessings book that we would expect someone to call, write or visit her the next day and tell her about God's great love for her. All through the day she was more and more anxious. By bed time she was very upset. She had only minutes before she needed to go to bed when the doorbell rang. It was one of our dear friends. She said that the Holy Spirit had sent her to our house to pray with us.

My daughter and I just cried as she prayed. Not only did her visit restore some of the trust in God for my daughter, but for me as well. This life her on earth is temporary. Our heaven is not here but waiting for us. To believe that this life is all we have is to despair and as my daughter says, despair shrinks your brain.

Home, But not Over

2009-10-24T12:44:00.002-04:00

My oldest daughter got home on Friday! She worked very hard on the physical rehab floor and is now able to walk and go on the stairs with minimum help.

Unfortunately, this is not the end of this chapter. She continues to dislocate the hip, even in bed. All of the doctors and therapists agree that she will have to have the hip surgically repaired at some point. We will attend a big care conference with all of her major doctors to discuss surgery options as well as the physical needs in the house.

The house is unsafe for three of us. There is no real option to move as our finacial situation has worsen in the last few years. Social workers are helping us sort out what type of help we might qualify for, but we are slipping through many cracks in the system.

I do know that God will deliever us. One way or another things will change and there will be some solutions. We all just need to stay postive and hopeful.

Meanwhile, my youngest contiues to have spinal cord impingment. She will be walking and suddenly her legs will give out. This leads to falls and then dislocatoins in the knee, shoulder, and so on. The surgeon told us there is no way to solve this problem, but I do not accept that. We just need to find the right balance of movement and rest.

I thank all of you for your conituned support and prayers.

Hosptial Bound

2009-10-15T22:07:00.002-04:00

My daughter will be admitted to the hospital tomorrow. We do not know how long she will stay in or what will come if it.

Please pray...

Funny Sayings

2009-10-13T19:15:00.003-04:00

We are waiting upon the Lord to work our troubles out. As we wait, we are reminded to count our blessings. We can best do that in remembering the funny things our kids say.

When I wake up, I am going to go to take a nap.

You better stop shaking your head or it will pop off and roll out the door.

Customer: How big is your pizza?
Waitress: 8 slices
Customer: Please only cut it into 2 pieces, I am not that hungry.

You made me laugh so hard that the pill almost came out my nose!

Don't make me snap my fingers in a z formation
exclamation
elbow, elbow,
wrist, wrist,
Oh, you just got this!

I so so poud!

I wonder what will happen if I push this big green button. Push!

Mommy why does Daddy have to go to work?
To make money so we can eat.
Mommy, you're silly, we don't eat money!

Looking at the Hope Diamond: "It's just a stinking necklace!"

As my older daughter and I watched as my son threw a tantrum she asked, "Mommy, did I ever act that way?"
"Yes, except your fits were bigger."
"I'm so sorry, Mommy."

You never know!

As I was pushing my bald 2 yr old in the grocery, she kept asking if we were finished shopping. This went on for close to an hour. Finally she caught the eye of an elderly shopper and shouted out, "Help me!"

Aflak on fire!

I just bought a new black and white spotted blouse. I was feeling good until my son came up to me and said, "I know, your a cow!" thinking I was in costume.

"I want a doctor! I want a doctor!" my 5 yr old daughter shouted in ICU after her spinal fusion surgery. The room was filled with doctors, so I asked her why she needed one. "So I can punch them!" For the next couple of days all of the nurses told the doctors to go into that little girls room and tell her that you are a doctor.

"Why do we have to wait so long to see the Constitution and the Declaration of Independence."
"Because a very important person is in there."
"Don't those pieces of paper say that 'All men are created equal?'"
Yes, you just defined irony."

"At the Last Supper did Jesus drink the wine and eat the bread?"

One day my husband asked my youngest daughter, "Hey, will this cup cover my bald spot?"
She shook her head no.
"The napkin?"
No.
"The saucer?"
No.
Then she pulled out the large dinner plate and handed it to him.

Why do we drive on a parkway and park on a driveway?

Blessings from Heaven

2009-10-10T14:47:00.002-04:00

Yesterday was a dark day. We had word from our social worker and basically the conclusion is I am unable to take care of my children and our house is not safe for us. This is a big pill to swallow, but is needed to get the help we need. The emotional ramifications are stunning. I cannot even count on needed help that might come as result of this revelation.

We also talked to the orthopedic surgeon about our oldest. Because she has not showed marked improvement in the area of pain, we are unsure what to do. He explained that a torn labial tendon will not heal on its own. He thinks that the tendon is getting caught like a carpet in a door. This causes the visual deformation of the hip at times.

He went on to explain the two options for surgery. One is arthroscopic and the other is a surgical dislocation. With the arthroscopic option the tendon can be trimmed or repaired depending on what is seen once they are inside. He told us that the MRI with contrast does not give the whole scope of damage, only that there is damage. They could also attach an artificial tendon into the bone with screws.

The surgical dislocation involves completely dislocating the hip so they can see everything. After he talked about cutting off part of her bone, I could listen no more.

He also said that even with the surgery, most people still have pain. His goal is to try to control the pain as much as possible to give us an accurate picture of the pain and where it is coming from.

Most people that have this injury are professional athletes that tear the tendon, but can still function without pain if they tone down the level of activities. For her, she did this sitting in a chair and it has lead to complete bed rest and no use of the leg.

She will have lasting pain no matter what we do.

It was all of this on my mind last night when I felt as low as I can remember for a long time. There was no one left to fight with to get them to help my daughter. There was nothing I could do to help her. I had become a hindrance in the whole process of getting my children help.

I felt completely alone and unable to do anything about it. It was a desperate, lonely, dark feeling. I had nothing left to do other than giving it to God. All of my fears, loneliness, anger, doubt, pain, concern and so on.

So what does God do with it? He sends people to call and visit that in my wildest dreams I could not have picked better people to talk to. One was a woman that has gone through health issues with her child. She also worked in the health field and was the exact person to understand more of what I am going through.

I got a letter from a old college friend. My father called to see how I was doing.

I realized in a phone conversation with my mom that I have fully retreated from all of my friendships. This self alienation made me even more upset and frustrated. It was not people retreating from me, it was me retreating from people.

Another friend called to see how I was doing. And as I was on the phone with her, a friend comes over to spend time with my oldest daughter. Visits are the best pain medicine!

Just as she arrived and I was talking out side with her mom, a truck pulls up and my friends from Navajoland pull up with two of there daughters! I just sobbed.

I gave my loneliness to God and he did so many amazing things to answer this prayer. Just when I thought it was time for me to give up, He comes in and wakens my faith with blessings from Heaven!

2009-10-10T00:32:00.005-04:00

Not Unexpected News

2009-10-06T17:33:00.002-04:00

We just got a call from the hospital and there is a tear in my daughter's tendon that keeps her hip in place. The chance of surgery is very high as people with EDS do not heal well. She also popped it out again last night at about 1:00AM.

It is a relief knowing what kind of monster we are facing, but then again it is scary. I feel so badly for my daughter and for 2 1/2 weeks on bed rest and more on the way.

We have exhasted all our ideas for things to do while in bed lying down. She really cannot sit up. Any ideas out there?

Answered Prayers

2009-10-02T17:53:00.003-04:00

In the last 2 weeks, things in our house have changed. My oldest has been in bed and in the dining room because she is still on bed rest. She now has to use a potty chair because it hurts too much to use the regular bathroom. She has missed 14 of the first 28 days of school.

My oldest had an arthrogram today and it lasted a lot longer than we had anticipated. When she was over an hour past what we thought, but my husband and I were sick to our stomachs. We left the hospital with no answers, but she did well in recovery. She did have a lot of pain when she finally came to.

My husband was away this week so I was care taking sometimes 20 hours a day. We have had multiple doctor visits and communications despite our desire to cut some of these appointments. The new wheelchair is so heavy that I am completely unable to load and unload it. I did have to pick it up when it first arrived as it fell out of the car onto my leg!

My youngest daughter continues to be sent home due to scary spinal issues as well as pain. It is putting a real strain on the school, the teachers, the nurse and me. It did not help matters when her spine surgeon wrote a script allowing her to sit on the floor because she cried in the office visit. She got injured multiple times a day because of this and I finally had to put a stop to it.

We had an appointment with a new group of doctors at Children's that specialize in taking care of chonically ill children and thier families. It is a medical home model and I really hope it works. I talked to them for 3 hours about the girls and our family. It sounds like they can help us with some pieces of our situation. I am hopeful, but far from saying our ordeal is over.

Before the appointment, I fasted as result of a suggestion from a sister in Christ. I told her that I did not even know what questions to ask at this point. By the end of the day, (actually at about 2:00AM) I had a list of questions.

God right to work in answsering many of my prayers the next day. My husband came home early, a issue with our insurnace company was in the works to be solved and we had assuance from this newe group of doctors that they would assist us in creating a safe environment at home.

We still do not know what the future will looke like but we finally might be at the point that we can start to plan on some of the "what ifs". Part of this is the realization that we will no longer be considered a "normal family." Our future will include surgeries, wheelchairs, pain and other things that we never dreamed we would have to go through.

We will never be normal but I know that we are blessed.

2009-09-27T13:39:00.002-04:00

This was a really hard week for our family. We keep saying that we cannot take any more. We said it almost 2 years ago, and year ago and now. Each time we think things would start to improve, we are hit with another smack up side the head.

My youngest daughter had been sent home almost every day for the last two weeks because of spine issues. She was having "electric shock" feelings, inability to walk as well as problems with her bladder and bowels. I can understand why the people at her school are anxious about these episodes. She came home one day in such pain that she was soaking wet from sweating. She was in a cool room, but her body was under such stress that she could not deal with the pain. We gave her some pain meds and she slept for 3 hours.

We took her to see the spine doctor. Before we could tell him what was going on with our daughter, he told us about how he had presented a paper about her surgery. He said that her x-ray was two stories high and her story surgery stopped the international convention because so many doctors had so many questions. Then he said that the moderator interrupted the questions saying, "99% of you do not have the skill to do this surgery on someone so young and the other 1% that do, do not have the b%##@ to do it."

So, with that said, we explained what was going on with our daughter. He said that nothing could be done. She will continue to deteriorate because developmentally she is in a stage of little physical growth. With the onset of puberty, things will get worse. She would continue to have episodes where she cannot walk and be incontinent. He told us to use the wheelchair and the back brace.

As you can imagine, this was a blow. We always knew that things would not be smooth in the future, but this hit us hard. We began to re-evaluate our outlook on how we spend our time. We go to all of these doctor appointment thinking that we would find relief of pain for the girls. What we are hearing now is that a pain free future is not possible. The doctors can help with the symptoms but because EDS is body wide, we need a multitude of experts to handle emergencies and other problems.

We do not dwell in despair with this realization because at the core is a hope that cannot be crushed. We have three wonderful children. We cannot thank God for giving us these precious gifts ant then curse Him because they were not our idea of “perfect.” While we do try to keep a healthy perspective on daily events, it is very difficult when there are so many big issues we are dealing with through our family. There are some days that appear hopeless and some are more positive. We laugh when we can and allow ourselves to cry and question from time to time.

On Friday we saw a new orthopedic doctor. He saw both girls and we all felt more comfortable with this doctor than the other. He spent a long time talking about how we came to realize that the girls had this condition and what went into the decision for the C1-C2 fusion. He agreed with all of the doctors that my youngest has a lot of scary symptoms and she is in pain daily, there is little to be done about it at this time.

Then he left the room for quite a while. I think he needed to get his head out of the youngest daughter's problems so that he could accurately evaluate the oldest. He focused all of the time on her recent injury. She had not been able to return to school since she left in an ambulance. It took us 6 days to get a wheelchair and he wants us to get a different one because it was not fitting her needs. He also wants her to stay in bed, in a vertical position all the time. He ordered a potty chair to eliminate movement. She has already sprained the other ankle from hopping on it.

He scheduled a test that would give a better picture of her hip. The x-ray showed that the hip was not broken, however, it does not show damage to tendons. He suspects that she has a tear in the the part of the hip that keeps the joint together. She will have dye injected into the hip, then have an MRI to show things better. She will have to undergo general anesthesia as this is a painful procedure.

All of this means, in practical terms, that she will be out of school for an extended amount of time. We had to move her bedroom downstairs. Because my husband will be in and out of town for the next 3 weeks, I will have to take care of her the best I can. I do have family coming in to help with appointments, but it will be hard. I cannot lift her, push her in her chair, transport he by car or pick her up if she falls. I also will have to leave her alone if I have to go up and take care of my other daughter.

I know that I know that things will work out in the end. Right now I just need a little glimpse of the unfailing love of our Creator.

Impossible Dorctor's Orders

2009-09-19T16:03:00.002-04:00

Both girls went back to school on Friday. My oldest daughter was walking around, but has some pain and my youngest went in her wheelchair because she still had back pain and could not feel her feet.

Anticipating come kind of call, I made sure that I had my cell phone close at hand. I took my grandma to the dentist, and while I was there, I made some calls to various doctors. The spine surgeon really wanted to see my youngest daughter, but knowing that we would get down there and there would probably be nothing to see on the x-ray, I told the doctor we would keep her resting as much as possible.

I figured that my oldest would visit the nurse at some point during the day. A call came before I went to physical therapy for myself. She was asking for Tylenol for the pain. I did not get the call, until it showed that I had missed the call because my cell phone did not ring. I called the nurse back and said that it was fine for her to take the medicine. She was only a couple of hours from coming home.

I went to my appointment and kept an eye on the cell phone to make sure that I would get any messages. Well, it did not ring again and it was the school nurse for my oldest daughter. She left me a message saying that my daughter's hip was dislocated and she was up in her classroom. I called back the same number and it was the assistant principal's phone. I told him to tell the nurse to call an ambulance if it was obviously out of place. My husband called a few minutes later and said the squad was on its way because they could see the dislocation even through her clothes.

I got there as quickly as I could and attempted to get to the room. The ambulance had beat me to the school. She was on the third floor and they were trying to figure out how to get her out. She would not fit in the elevator because of the stretcher.

Eventually they got her down using a collapsible stretcher. By this time, all of the kids were in the hallway because school had just ended. I felt so bad for her, but she handled it very well. She remained calm, even when adults around her were freaking out.

To make a long story short, her hip had gotten back into place on it own. The x-ray did not show a break. This time the doctor suggested bed rest and use of a wheelchair. The problem is of course that her bedroom is upstairs and she does not have a wheelchair. She is still in a lot of pain, no way to get around. The doctor's orders again, sound good, but we have no way to follow them. Right now we don't know how she is even going to bathe. We also have not idea how long she needs to be on bed rest.

I just keep looking around the house and wonder how we are going to make all of this happen. My husband is suppose to leave town on Monday and I have two kids that are having trouble moving around. I can't help any of them because I have not had a chance to heal myself.

So How Was Your Day?

2009-09-17T00:19:00.002-04:00

This latest adventure started last night. My mom was watching my two older children because the youngest had a doctor appointment. The plan was I was to pick up dinner then we would all meet at her house to help her clean a little. She has not been out of the hospital a month from her broken back surgery and she needed a little help. All of the kids were not happy about having to do work, but they finally quit griping and started to clean. Just as we were finishing I hear a faint cry of "Mom...Mom...Mom"

I quickly search for the source thinking that someone had broken item in the house. I find my oldest daughter on the floor crying and the vacuum still running. I learned that when cleaning the last room, she had tripped on the vacuum power cord and landed "funny" on her left leg. She said that she heard a pop and had extreme pain.

I quickly began to look at her hip. It did not look obviously out of place and she was getting blood to her toes, but I knew she was in agony. She was pointing to one particular spot in the hip joint. After talking it over, we decided to move her ourselves and take her home to see if things resolve naturally. None of us liked the idea of going to the emergency room at 8:00PM. She could not go up the stairs, so I stayed downstairs with her and we slept in the reclining chairs.

She cried most of the night so we knew that we had to have her seen by an orthopedic doctor as soon as possible. Well, we just got rid of the last ortho that said that he only wanted to see her if she needed surgery. We are due to see the new ortho next week and we will also see a doctor in sports medicine. (Yeah, with the addition of these doctors and two sleep doctors we are up to 23 doctors and therapist we see just for the girls.)

We got a hold of the geneticist and he called ahead to the ER and she was in a room very quickly. She had x-rays that showed no obvious break or dislocation. This time we got a ortho resident that was pretty good. He actually took the time to talk with my daughter and explain what he thought was causing pain. He said that she had either bruised the hip bones, or strained the groin muscle. This did not mean that it does not hurt. He said that this type of injury is common in football players and baseball players and they roll around on the ground in pain. Recovery will mean moderate rest, but she would have to move it.

Like her other hip injury, she did not want to move it. The ortho did not want to stay around to help us so he past us onto the attending doctor. The attending did not want to do it either and was upset to hear that I could not do it because of my recent neck fusion.

I asked the doctor to send it someone from Child Life that might be able to distract her in order to reduce her anxiety and therefore reduce her pain. Just a note, if you are ever in a children's hospital, ask for a Child Life worker. They specialize in explaining procedures to kids to reduce the anxiety and they are masters of distraction during painful episodes.

Anyway, Child Life did help a great deal. My daughter blew bubbles as I raised the head of her bed, thus getting her to the upright position. She was still in a lot of pain, but I could get her in the car. Praise God!

When I got home, I had to take a quick shower so I could go and see one of my doctors. Just as a finished getting dressed, we got a call from the elementary school because my youngest daughter had an electric shock through her body and her hands and feet were numb.

My husband and I quickly grabbed the back brace and headed to the school. We found out that this one was very scary for our daughter as well as her teacher. Put yourself in the teacher's shoes for a moment...she had a kid in her class that can dislocate just sitting in a chair or have a spinal injury.

We got her in the back brace and took her home. We had to drop her off in a hurry because we still had to go to my appointment. The scene at my house was my oldest in pain from the injury the night before. My youngest daughter in a back brace on high power pain killers, my son who had to try to concentrate on his homework in this zoo atmosphere and my mom, with the broken back taking care of them!

We did get out of the house to get to the neurologist. I had to go because I am having severe problems with my memory along with uncontrolled muscle movement, confusion, severe head aches and uncontrollable closing of one of my eyes.

The bottom line is that he thinks I might be stressed and in pain. Do you think? Really it took a brain surgeon to tell me this. When I tried to explain that those two symptoms are just a normal day, he said to come back when my pain was under control. I guess I will not be going back to soon as I cannot take pain medicine and I am in too much pain to sleep.

He did say that the problems that I had last winter were due to the bleeding into the brain they found before my C1-C2 fusion. I was surprised because I was led to believe that it was due to some of the medications that I was on at the time. But again, it takes a brain surgeon to tell me that I should not worry.

On the way out of the office, I told him that I would see him again next week, because my mom was coming in to try to figure out why she does not breathe after surgery. The doctors are concern because they think that her problems are due to problems in her brain stem. Meanwhile, the geneticist said that if she has a brain bleed too, this changes the ballgame for everyone involved, including the kids.

Stress? Who me?

I know that in the end, all will be well. I have no idea how it will happen, but I do trust and place my faith on the Lord. Things could have been truly awful. The hip could have been broken and the back could require surgery. Also, I could have been told that my lesion was the cause of these problems. I do praise God that he spared us from many potentially horrible consequences. All I would like is a week with no injuries and no doctor visits.

The World's Toughest Audience

2009-09-14T17:14:00.002-04:00

We are now a couple of weeks into school and my youngest daughter asked me to talk to her 1st grade class about Ehlers-Danlos Syndrome (EDS). She had already been ridiculed for needing special seating and some of the braces she has to wear to school from time to time.

Of course, I agreed to come and and I set up a time to come into the classroom with the teacher. I have been a teacher for years and thought nothing of talking to a group of 1st graders. The last teaching assignment I had was teaching children in kindergarten through fourth grade.

I began the talk with asking if the kids had ever heard of EDS. Most of the kids said that they had heard it from my daughter but they did not know what it was. I then realized I had no idea how to explain such a complicated medical condition to 6 year olds! Most doctors do not know about EDS! How to you explain the effects of the lack of collagen to first graders?

I admit, I panicked. My daughter saw that I was struggling and quickly came up next to me in the front of the room. She basically took over the talk. She showed the kids how she could hyperextend her joints at which point all of the kids tried to twist themselves into a knot. I was going down in flames!

I took a couple of the braces out of my bag and explained that sometimes my daughter needed to wear these contraptions to help her stay out of pain. One of the kids was in her kindergarten class and said that he knew about the neck brace because she wore it last year. He also explained that she was in a bad mood all day when she wore it. Out of the mouth of babes...

I knew I was in real trouble when one kid asked if her head would fall off and could she die from it. Before I could answer, my daughter explained that her head was finally attached to her body and the doctors saved her life putting in mental plates and screws to keep it on. This is true of course, but it sounded much worst than it really was! She went on to explain that my head was not attached to my body and she wanted me to show my scar. I said no. My C1-C2 scar is not for the faint of heart. She said that I had just had another surgery on my neck and she pulled down the collar of my blouse and showed off the scar like Vanna White!

At this point, most of the kids were still trying to contort themselves when a little boy explained, "Its okay, my daddy has a plate in his head too!"

I wanted to finish on a good note so I said that there were a couple things that they needed to know about EDS. First, they could not catch it like a cold. Everyone ignored this one because they were still trying to to what my daughter did. Second, they needed to be extra careful not to grab, pull or twist my daughter in any way. My daughter quickly pointed out the girl that had twisted her thumb and dislocated it on the first day of school. She kept pointing at her, saying. "I told you not to do that! See my mom agrees with me!" And third, if they see her fall, tell a teacher.

I quickly gathered my things and left ASAP. By this time, I had a pounding headache and was sure that I had made things worse instead of better. The next day my older daughter asked if I would talk to her class too! I just hope 6th graders are nicer!

Is There Anyone There?

2009-09-04T15:20:00.002-04:00

I emailed a friend of mine and said that I was thinking about shutting down the blog. Though getting my thoughts down into words has helped me deal with the craziness of the last few months, I seem to be communicating only with myself. I know that there are people that read this from time to time, but I guess I miss the connection that goes on when I do tell my story.

As of late, most people do not ask me how I am doing, I think because they don't want to upset me or listen to me as I tell stories that usually are of some tramatic event. I do not think that people do this because they are uncaring, or malicious. I know that many people pray for our family on a daily basis and we do appreciate it.

It is kind of like dealing with a death of somone close to you. Some people do not like to bring up the subject because they do not want to upset the person greiving.

I am still unsure that I will continue. I know that my blogs are long and boring and I do not expect people to praise me for the blog. I am just looking for more interaction.

First Week of School

2009-08-30T15:08:00.005-04:00

The first week of school was just last week and I am glad it is over. Because both of my girls have such rare medical needs, there is a lot of communication that needs to happen in order for them to be safe at school. My oldest daughter was returning to the same building as last year, but there are only a couple of people on her new team that knew anything about her. All of the administration had changed. We were blessed that she had the same physical therapist, however.

My younger daughter has spinal abnormalities along with the hypermobility that would make any school personel nervous. She dislocates very easily, but she also has a fagile spine that requires the whole staff to know about her condition in case something would happen. For instance, at times her lower back subluxes causing her legs to be numb and she loses bowel and bladder control. Any time of fall usually results in a dislocation. In fact, before school started, we went to an open house. She was so excited to see the gym teacher that she shook his had so vigirously that her shoulder popped out. The gym teacher noticed it and she flug it back in place without skipping a beat.

Our family is so blessed to be surrounded by such wonderful people. It seems that every need is met, even before we recongnize the need. The staff at the elementary school has been wonderful. I had a long meeting with the school nurse. She, in turn, briefed the rest of the staff about my daughter's needs. She is just entering first grade.

There is only one physcial therapist (PT) in the whole district. I am not sure how she does it, but she is wonderful. Our genetisit wrote a book on Ehlers-Danlos and the PT not only read it, but also made a quick summary for the teachers to read. This has been extremely helpful during our meetings.

We have to inform everyone from the lunch ladies to the bus drivers about our girls so that everyone has an idea of what to do in case of an emergency, but this has lead to high anxiety for everyone involved. We try to reassure everyone that we are simply trying to give information in the off chance something will happen. But as the title of this blog explains, we all know it will.

The first day of school I got a call from the nurse at my youngest daughter's school. Apparently, she had upset another little girl in the class and this little girl grabbed her thumb and twisted it. It popped out and she was sent to the nurse only after it was discovered some time later. She did not want to tell the teachers because she wanted to ride the bus home. I rushed up and looked at her thumb and sent her on the bus.

When I rounded the corner, I saw the principal. She looked like she was ready to faint. I think she thought I would be really upset. I was not. If you have learned anything about our family in reading these blogs, it is that this kind of stuff happens all the time. If any kid that day was going to have thier thumb twisted, it would be my child!

That night, by husband had to leave on a business trip. Being tired becuase of my surgery, it made it difficult to think about him leaving, but it nessisary and I knew it. As soon as he left, my kids were getting some ice cream. My son went to get the ice cream with the scooper, when it slipped and came up and hit his lip and teeth. It chipped a tooth and broke open his lip and brused it badly.

The next day my mom was released from the hosptial. I thought I could pick her up around the time that my youngest daughter had an appointment not far from the hospital. Of course, things could not work out that easily.

I got a call on Tuesday about midday that my oldest daughter had popped out her wrist holding on the rail. She was in a lot of pain. I quickly tried to call her orthapedic doctor as well as the genetisit, because I was unsure what to do. It is difficult to make desisions when in a lot of pain, let alone when different doctors tell us different things. I could not get anyone on the phone.

When I picked my oldest daughter up, she was in a lot of pain. I decided to take her to have an x-ray, just to be safe. My thoughts were that she was not that much pain, but she was stressed with school and used this to get out of it. I also did now have much time as I needed to get my other daughter from school soon to make it to the appointment downtown. I had to ask our priest's wife to pick up my mom. The day was slowly unraveling.

I got my daughter to the ER for some quick pictures. I tried to see if the anxiety of being at school was the reason for the trip, or that she was truly in pain.

The doctor came back and said she was fine. The ortho looked at the wrist pictures and he did not see a dislocation, just some swelling. It was problably out at one time and went back in.

My daughter was upset and kept saying that there was something wrong. She said that her fingers were cold and she had a weird sensation in her thumb. I had just about enough and quickly took her back home. I told her to be tough about it as I could not take one more thing. A friend had already planned on coming to our house in the afternoon to look after the kids while I took my youngest to the appointment.

She arrived as I was dropping my oler daughter off. She would not make it back to class as it was too late. I quickly went and picked up my younger daughter from school and headed down for the appointment.

Thank God we arrived on time and the appointment went well. I came home and dropped off my other daughter and rushed to my mom's house to check on her. She was alone and I was very worried about her. I got her settled and rushed back home.

My friend that was watching the kids ordered dinner for us. This was a true blessing as I was completely exhaused by this time. I came home and was told that my son had fallen on his scooter and his thumb hurt and so did his arm.

The next day, I was making phone calls and writing emails as a follow up to the school meetings when I got a call from the genetisit. Rattled off many questions to him about my mom and the possiblity that she has central apnea, questions about school for the girls and other questions. Finally, he interrupted me and said that he did have a reason for calling. He said that he did not agree with the ER doctors opinion about my older daughters wrist. He said that it was out of place and he described her symptoms of numbness and coldness before I could tell him. I just laughed and said that I am wrong again. I would have to eat my words about being tough to one of my daughters once again!

He also was very concerned about my mom. If she did have central apnea and it was caused by a bleed in the brain, this is a game changer for all of us. Because I have a leision in my brainstem, discovering one in my mom would mean that there might be a vasucular complication to our form of EDS. He was very concerned and told me repeatedly that my mom needs to have an image of her brain ASAP.

Maybe I am in denial, but I don't think this is what is going on with my mom. I went to pick up another C pap machine for my mom because she turned hers in a couple of months ago. (Don't even go there!) The nurse that gave me the machine for my mom came up with a probable cause for the apnea. She said that with severe apnea the body gets used to lower oxygen levels and higher carbon dioxide levels. When someone goes under anethesia, the patient is "hyper oxygenated" and the brain is not used to it so it does not tell the body to breath, because it is trying to get to the level where it was before the surgery.

I think that the doctors will do many test and scans an so forth and find that this experienced nurse is right. Agian, I might be kidding myself, but I cannot bring myself to worry too much about the possible brain involvement at this time. Even if I did worry, what would it gain me? Sleepless nights? My mom could not even think about undergoing an MRI at this time because of her surgery.

The rest of the week was a blur until my husband came home on Thursday afternoon. By Friday night I was of no use. I go to the schools every day for medication and to my mom's house twice a day. So much for free time as my kids go back to school. All I can say is that I hope next week is a little less chaotic. But, as you can tell, one never knows. All I know that is God is already there.

The Wright to Choose

2009-08-30T14:21:00.003-04:00

So, less than a week after my C spine fusion, my mom had another fusion of her back because she found out her back was broken. Again, I could not make this stuff up!

I went with my mom to the hospital. Since I was still unable to drive, my husband took us that morning and dropped us off. He went back to work and look after the kids.

My mom called the anesthesia department ahead of time to explain the ordeal she went through last year. (She spent 18 days in ICU due to the loss of the drive to breathe) This very grouchy Dr. Wright, an anesthesiologist came in to interview her before the surgery. Right away we could tell that he had not read any of the notes written up about her.

As soon as he heard about the loss of the drive to breathe, he yelled, "You are not going to have surgery today!" Of course, this upset both of us. He was very rude and said that she was not "fit" for surgery and needs to find out why she had trouble last year before she has a surgery. With her back broken, she really did not have a choice. It is not like a broken back is an elective surgery. Finally he stormed out to "talk" to her spine surgeon. He said he did not want to work on someone that had some weird condition that no one ever heard of. I pointed out that many people at this very hospital knows about EDS as this is the fifth surgery on my mom and myself in the past year at this very hospital! The problem with Dr. Wright is that he did not do his homework before he entered the room.

In mean time, I asked for a supervisor to come in to talk with us. I explained how rude and unprofessional Dr. Wright had been. As we were talking Dr. Wright came back in. His attitude had changed and started to take her history again. I interrupted him and said that we were not comfortable with the way he left the room and what he had said. He held up his hand and told me to stop talking! I almost exploded!

He asked my mom if she wanted someone else to take her case and she said yes. With that, the supervisor left. Dr. Wright then asked me why I had a problem with him. I said if he really wanted to know I would tell him. He said yes. My response to him was that he was very unprofessional in the way he handled his frustration about not knowing about my mom's case. She had done everything she could to prepare the department ahead of time. She was in that same hospital the last year. The records were available. I also said that his frustration was misplaced. He did not need to act with hostility toward my mother, especially given the amount of anxiety she had about having surgery in the first place.

I did not say these words in an angry way, just matter of fact. I was angry, but knowing he would have nothing more to do with the care of my mother, I was relieved. Soon after, the doctor that my mom talked to on the phone came in and completed the paperwork and took her case.

The surgeon came back and checked on my mom. He said, "You choose your surgeon, you should choose your anesthesiologist too!" I think that he was just as happy as we were not to deal with him again. Thank God!

Soon afterward, our priest came in and sat and waited with us. I think that had he been in the room at the time, Dr. Wright would not have been so rude. It is said to think that there are still men that cannot deal with women as thinking individuals.

Our priest sat with me as I nervously talked for three hours. I work with him at the church and I have gone out west with him on mission trips in the past. I joked that I noticed that he no longer traveled in the same car with me because I talk too much. He said, "When I get in the car it will be quiet." I laughed, knowing that he was so kind to listen to me, but he would be glad when it was over.

The surgery went well and the surgeon called us back to explain how well it went. I sent the priest home and waited by myself for her to come out of the recovery room. In this hospital there is a screen that lets you know the stage your loved one during the surgery process. I kept waiting for them to call me back to see her. I saw that the most anyone else had to wait was 45 minutes. At the 1 1/2 point, I went to the desk to see what was going on. When a lesion was called out to talk to me, I knew it was bad.

She led me to her. I was anxious to see if they had re-intebated her. I figured that she was having the same trouble as last time. I was relieved to see that they had not. She was not breathing unless reminded. The nurse also explained that an intensivist would be back to see her. I told her I wanted to speak with him. I asked the name of the intesivist, which was the same doctor that took care of my mom last year. I fought with him every day about my mom.

When I did come back to speak to this doctor, he took one look at me and hung his head. Just when he thought the nightmare was over, I was back!

The first thing I said was, "You are not re-intebating her are you?" He quickly agreed. I think that they re-intebated her last time, causing pnemonia and other troubles. He thought that there was something in the brain that was causing her central nervous system to malfunction. Her brain was not tell the body to breathe for some reason.

He had a new idea to help "wake up" her system. Basically, he pumped her with a bunch of caffine. When this did not work completely, he gave her a medicine that would wake her up.

All in all, she spent a day and a half in ICU. She was then sent to a regular room, then to a rehab room in the hospital. She is recovering at home and getting stronger every day.

The moral of this story is that sometimes Dr. Wright is just wrong! You have the right to choose how works on you and you must be your own advocate!

Thank You

2009-08-11T14:47:00.002-04:00

I am overwhelmed at the number and thoughtfulness of people that have help my family in the last year and a half. Countless people have prayed, made food, watched our children, listened, counseled, and loved us through this time. It is to a loving God, that I send my thanks because I believe that is the source of all goodness. I think that some people are unaware even of their divine prompting at helping our family. I do not wish to discount their generosity, but to collect it into a feeling of love that has sustained us for so long.

Today I read in God Calling "I have not promised Peace but not leisure, harvest and comfort, but not pleasure. I have said, 'In the world ye shall have tribulation'; so do not feel when adverse things happen that you have failed or are not being guided, but I have said, 'In the world ye shall have tribulation:but be of good cheer; I have overcome the world.'"

With prayer, there is always healing, but not always a cure. I feel that my healing is very deep inside me. A type of hope that nothing can destroy. I feel the need to live in the present, so that I can focus on healing instead of despair.

Eye Off the Prize

2009-08-10T11:40:00.002-04:00

I thank all of you for praying for me for the last few days. The pain is not as bad and continues to improve. I am going to have to keep myself in a low gear to tollerate the pain through the day. If you know me at all, this is the most difficult part. What I had to do is to go back and look at the promises that God made me (and all of us). The promise was that He will never forsake me. With all of the pain and self-pity, I lost sight of that. I believed the lie that the doctors had let me down. The problem with this thinking is putting too much emphasis on the healing capablilities of the doctors and not on God's healing.

I had to let the bitterness and anger go so that I could accept help from the Holy Spirit. The two do not go together. It was like I took my eyes off of the prize and got a sledgehammer to the head. Now that I am more relaxed and properly focused, the pain decreased substantially.

Some of you might think this sounds crazy, but I think this was God's plan all along. To say that I could get through the post op time with only Tylenol would be too unbelieveable. The fact that I am shows that the Holy Spirit is taking the pain. I am not going to lie and say that I feel no pain, because I do. But it is not the despairing type of pain. There is a real difference. I know that each day I will feel a little better. I know that I have to go very slowly right now. I know that I will have more pain if I try to do too much. But there is light at the end of the tunnel.

Please pray for my mom as she is going to have back surgery to repair a broken back on Friday. I am not sure how everything will work, but I know it will.

Walk in the Scary Jungle

2009-08-08T10:50:00.002-04:00

I spoke too soon about the walk in the park. The only pain relief that the surgeon is giving me is Tylenol! I can't even take Motrin.

The pain was pretty bad last night. Today is not much better. I tried to talk to the surgeon about the pain control before the surgery, but I was assured it would be okay.

So I have a 5 inch incision and metal screws and plates in my neck and no pain relief. I feel like the surgeon treated me like a piece of meat and totally dropped me as soon as I left the operating room.

Please pray for me as I am at a very low point right now.

Post Op

2009-08-07T11:27:00.002-04:00

I got home from the hospital yesterday afternoon. I felt instant relief from the painful swallowing and my arms are feeling better. The only problem is I have developed another allergic reaction to the pain meds. Last night was difficult because I had hives all over my body.

The surgeon called in a steriod and another pain med, but I think I might be allergic to this one too.

Thank God I didn't have this reaction after my C1-C2 or I would not know what to do. Compaired to my previous surgery, this was a walk in the park.

My mom went to see this same surgeon yesterday and he wants her in for surgery as soon as possible. I hope it is too because she is in a lot of pain.

Thanks to all of you for your prayers. God is good!

Seriously, Should I Expect Anything Less?

2009-08-04T17:33:00.002-04:00

My plan was that I would write my next blog entry after my surgery, but as usual, things did not go as I expected.

First, my son came down with some kind of illness with a rash over the weekend. We took him for a strep test and it came up negative. By Monday, he was feeling better, but my oldest daughter was now sick. He had an appointment to talk to the doctor on Monday, so the whole family went with him.

When we arrived, our regular doctor had 2 med students with him. Of course they were curious about the girls. The nice thing was, the doctor asked permission from the girls for them to examine them. My youngest was uncharacteristically cooperative. They both felt empowered to make a decision instead of having to deal with the doctors.

Anyway, both kids probably have 5ths disease. This would be okay, but we had a friend over Saturday and she is in her 3rd trimester. Of course! This also puts me in jeopardy as well as all the plans that my husband has made for the children. We are getting better about punting, it really does not upset us as much now.

Only one doctor appointment for us today and it went well. However, my mom went to see the spine surgeon. She has continued to have pain since her back surgery last year. She has had trouble sleeping, uncontrolled sweating and bladder infections recently.

She had gone to her regular doctor, the geneticist, the sleep doctor and others. They thought she was having a thyroid problem. It turns out that she has A BROKEN BACK!

She fell a few weeks after coming home from her month stay at the hospital following her other surgery. She had called the surgeon's office and was assured that nothing could have happened. Well, we now know why my daughters are so tough!

In a way, this is a good thing, if a broken back could ever be good. The surgeon thinks this is the cause of the majority of her problems. So, she could have surgery very soon and I am hopeful that she will get some relief.

For years, we did not have answers and we just kept going. Now we have answers and we don't like them, but they are answers. I wonder which is better. Sometimes I would like to take my family and hide and not go to the doctor appointments, but I also remember how badly I felt all my life and how I just kept going, despite the pain. I also had in the back of my head that something was wrong with me in the head. (Of course, I did find out later that my head was not on right, but only I can make that joke!)

I was very upset last week and down on myself about when to go to the doctor and when to stay home. I have decided that I was putting way too much pressure on myself. If the doctors cannot agree and are not sure what to do, what makes me think that I can do what they cannot. I don't have a medical degree and I am on pain meds and in extreme pain most of the time. What makes me think that I should be right about these decisions?

Anyway, I gave myself permission to not have the answers. It is very freeing and took a weight off my shoulders. I am not going to be right and that is okay. For so long, doctors did not believe me or listen. Now with EDS and a brain lesion, hypertension, chronic pain, lordosis of the C spine and so on, they are finally offering relief and I am glad.

I look forward to finally having something done about my pain. I do not have any illusions that it will fix everything, but it is something.

Please pray for me and my family.

Three Doctors Appointments

2009-07-31T20:58:00.004-04:00

It was a difficult day today. A nurse called me for my medical history and the list of what is wrong with me coupled with the number of medication I am allergic to depressed me. I am not quite sure why other than I had never heard it all in one sentence.

We had a total of 3 separate doctor appointments as well. We met with the geneticist for our oldest daughter. We have been concerned about her sleeping and her hips. There was no good answer for her hips. Even if she does have hip damage, there is little the doctors can do. Hip replacements do not go well with hyper mobile joints. The hips become damaged because the sockets are formed from pressure on the head of the leg bone and the hip socket. With use, the hip socket becomes deeper and smooth. Because our ligaments do not supply adequate pressure, the socket is shallow and can become "uneven." He did not agree with the chorodolysis diagnosis either.

Her sleep problems are something that we can continue to address. She has had problems sleeping for over a year. We have tried addressing it through bio-feedback, sleep hygiene, melatonin, Benadryl, progressive muscle relaxation and so forth, but falling asleep and staying asleep are still giving her problems. The geneticist will refer her to a sleep clinic where they will hopefully send her to a sleep behaviorist.

The difficult part of this appointment is the lack of solutions. Really, there is little we can do to keep traumatic events such as dislocations and broken bones from happening. Each time we go to a doctor appointment it is a reminder that what we had expected of our life, is no longer possible. This is not entirely bad, just different. We are still grieving our expectations. Today, along with getting ready for surgery and our other daughters broken ankle, it felt like a slap in the face.

Our youngest daughter had to go back to the orthopedist because her heel was giving her pain. She woke us up in the middle of the night, complaining of pain. They took the waterproof, walking cast and put on a cotton cast with the heel cut out. This means that she must stay off her foot. She has to use her chair or be carried.

More and more we are confronted with the fact that a 2 story house is not meeting our needs. I am not sure what we are going to do about it now, but we did discuss the possibility of moving her bedroom to the dining room area. We would still need to carry her to the bathroom to take a shower, however.

I know what will happen if we modify the house or move. The traumatic event will stop and we will wonder why we made such a big move. We shall see...

2009-07-29T01:34:00.002-04:00

I visited my surgeon today for my preop appointment. It was re-scheduled from Friday, so I had to go alone. Things were not too bad, but I started a migraine headache in the office and I am still in the throws of it now. I think it was because I could not take any pain medications all day. I couldn't read the list of questions or even dial the phone so I could have my husband in on the conversation.

There was good news from the visit, however. My surgeon explained that he would only fuse 3 vertebrae to correct the position of the neck so it is not pushing against my throat. This will hopefully elevate the unending pain in my arms. Swallowing will probably be worse for a while due to movement of throat during the surgery. He is also hopeful that some of the migraines will be reduced. The nerve pain will need a long time to recover, but he is hopeful that this will also improve.

The surgery is scheduled for only 2 hours and he said that I will only need to spend one night in the hospital. The recovery should be quick as well. He said that recovery from my C1-C2 fusion would take a year (I am only 6 months out from that surgery) but this one is only one month.

He is going to do the whole surgery from the front and will not cut any muscle. I should not need to wear a hard collar either.

This is great news on all fronts. I had heard from my pain doctor that this surgery would be more invasive than my C1-C2. I could not imagine anything being more painful than the recovery from that procedure, so naturally I was very nervous. I do hope and pray that all the surgeon said today will be correct. I knew that the C1-C2 fusion would not get me out of pain. It was a procedure to help save my life. This surgery is different in that it is not life-threatening, but pain relief.

There is other good news. I finally made contact with a social worker. She is in a new position at Children's. She covers families with chronic illnesses. Within a couple of days of our first phone call, she had tracked down a clinic at Children's that specializes in treating children with special needs. This clinic's website description was a list of everything that I had been praying for during the last year and a half. This center looks at the whole child and the whole family. I had been saying all along that the 13 different doctors and therapists that we see only address one aspect of our children. Too many times the advice we would get would be contrary to what a different department would say. This led to confusion and frustration on our part. With the help of this clinic and it's resources, appointments could be coordinated so that we don't need to go to Children's multiple times a week. They could set up a "care conference" between all of the doctors so that there is consistency in their care. This clinic also has social workers that help the families with organizations that can help the family as well as dealing with insurance companies.

The social worker did warn me that there is usually a 2-3 year waiting list. She gave me the name of one of the nurses at the clinic. She would decide if we would even be eligible for the clinic services. When I spoke to her, she had already heard about our family from our new social worker. I explained more of our situation and she said that she would get back to me at the end of September or beginning of October. I thought she meant she would give me an answer as to if we would be accepted. She explained that we were already accepted and this would be the first opportunity to schedule an appointment. I asked her of which year and she replied, "This one, we can see you in a couple of months."

When I heard that, I began to cry. I felt such a weight had been lifted from my shoulders! In the last year and a half I have done nothing but work on coordinating care for our family and my mom and now I have a resource to go to for help!

It is almost like a dam breaking and we are finally going to get some rest and peace. I know that God's timing is perfect. Just when I thought I should yank the whole family out of the endless stream of medical issues and go it alone, God sends down an answer to a prayer.

Unnatural Mourning

2009-07-27T16:52:00.006-04:00

Today was a reminder that even though we suffer with pain, there is always somone that suffers more.

I got a call from a friend of mine that knows a family that used to attend our outreach ministry on Wednesday night at church. We all loved this family and became close to the children, as well as the single mom of at least 4 children.

She and her family moved about 1 1/2 ago, but evidently moved back to the area last month. My friend called to say that this single mom had to take one of her children off of life support today.

We don't know which child or what happened, but it does not really matter? What really matters is there is a mom that has to do the unthinkable. She has to bury one of her children. This is not the natural way. This is against all that we believe to be good about this world.

The lie is that this world is good. It is not. This world is filled with sin and evil. This world is not good. We are not to be too comforatable in this world, because our real home is with God.

I had a friend of mine say, "Sometimes I think we all put too much emphasis on our comfort here on earth." These words, sadly, probably will not comfort this mom right now. I dare say that there are no words or actions that will comfort her right now.

The problem too often is that people think that they need to say the right thing, or do the right thing when people are in trouble like this. The fact is, nothing people do or say will help her right now. "I will just pray," is more than the last resort, it is the answer. I read one time that the power or the Reserection is most powerful in the graveyard.

What people need to do is surround this mom with prayer and love. To excuse her when she screams and cries. To listen to her when she wants to tell stories of her child. To look at pictures with her and to remember that child forever.

After my brother died, many people pulled away from me and our family. They said they didn't know what to say, so they said nothing. This is the worst type of offense for the grieving family. The biggest fear is that thier loved one will not be remembered.

Time will not heal this broken heart. There will be a permanent scar on this mom and her family while they dwell here on earth. Only the Savior has the healing touch that will help her.

I am asking anyone that reads this to pray for Tawana and her family. You will probably never meet her, but your prayers and love do make a difference. Pray for peace for her and all families that they never have to know this unnatural mourning.

Are You Still There?

2009-07-25T19:31:00.002-04:00

For the last 5 years, I went out to the Navajo Reservation to lead a vacation bible school for the children of St. Mary's of the Moonlight. The church is near Monument Valley, Utah. St. Mary's and the land it sits upon is owned by the Episcopal Dioces, a rarity on the Reservation. This honor was given to the church due to the dedication and love of an Episcopal priest that built the church. This preist was one of the first belegana (white) pastors to lead the Navajo people to Christ in thier language.

It is a half-hour drive on an unmarked dirt road and sits at the base of a large mesa. On the church grounds, there is St. Mary's a house for people who visit during the summer and other times of the year and a trailor for the sexton. Most importantly there is a hogan.

The hogan is the symbol of life for the Navajo. There are two types of hogans, one female, one male. The female hogan is the traditional home, while the male hogan is used as a temporary shelter for the men while hunting.

The female hogan is round and made of a type of mud. Inside there are 9 cedar posts that support the structure symbolizing the 9 months of gestation. The door faces east to greet the rising sun. When walking into a hogan, you always walk in a clockwise direction as the sun shines. In the middle of the top of the hogan there is a hole and a fire is kept in the middle of the floor. The hogan is suprising cool, even when the temperature is well above 100.

The first year I was to go out on this mission trip, I cancelled at the last minute because my husband's sister had just given birth. Her son was in the PICU at Children's and the outlook at that time was grim. (It turned out that he survived and is doing quite well.)

The second year I was to go out, I had three children at home. My youngest was only 6 months old. My parents were very upset with me that I would go and leave my family for a week. When I tried to call my parents while out there because I heard that my mom had pnemonia, my dad would not return my calls. Phone reception is viturally impossible. We have to drive quite a distance in order for our cell phones to work. Obviously, I was crushed. Deep down I did not want to go either and the prospect of going into a desert with bugs and no air conditioning did not sound great to me.

The reason I went is because I believe in my heart that God gave me a direct order. Just a couple of months before this, I realized that to follow Jesus, I needed to let Him be the pilot. This is a very difficult thing to do when you are a control freak like me. (Yes, for all of you that have known me a long time, I admit it.) I also realize that when I give myself completely to the Will of God, I am not responsible for the outcome, good or bad. I prayed that dangerous prayer, "Let Your Will be done." I say it is dangerous, but in actuallity it is the safest place to be. To let go of the wheel and alow God to take you to places that He wants you to go means that He is driving and He promises to never put us to shame. He does warn us, however, that other people will not understand and some will be angry. This is a small price to pay for the immesurable blessings that flow when you do ultimately let go and let God.

Anyway, I was still a little miffed at God for "forcing" me to come to the desert. I was telling this to the resident priest, Fr. Ian, an Anglican priest from Great Britan. He asked me why I had decided to come out and I told him that it was all God's idea and I did not want to be out in the desert away from my family. He just smiled and said, "Oh, you are there are you?"

It was later in the trip that God began to rain down the blessings. I was still very upset about my family, but VBS had to go on. During VBS, we broke the children up into 3 activities: story, arts and crafts and games. I was the story teller and I used Godly Play stories.

Godly Play is a Montessori based christian education curriculum in which plain wooden figures are used to tell the story. The real difference in this method of teaching is that the story teller is not the teacher. Before the story begins, the story teller asks the Holy Spirit to take over. I pray something like this, "Let Your Will be done and let Your Words fill my mouth."

This day, the Holy Spirit did come and fill the hogan with His presence. I began telling the story after all the children were seated around the side of the hogan. I was seated on the ground facing the door. I began telling the story and using the figures. During this type of story telling, the story teller "memorizes" the story and is careful not to look at the children in the eye. Normal comprehension questions are avoided and in its place "wondering" questions are asked.

As I was saying, I began telling the story when I peeked up. When I did, I could not see the children. The sun coming in through the hole at the top of the hogan was so bright, that I could not see beyond the figures. It was a different bright. It did not hurt my eyes, but it did serve as a reminder not to look at the children.

When I finished the story and began the "wondering" questions, I was able to see. I began to also realize that the Holy Spirit was powerfully present in the hogan. I got goosebump as I looked at the children and they were fixated on the figures. They were also amazingly quite and attentive when they were not just minutes before in the church. I was overwhelmed at the thought that God was with us that morning. I went out to the desert and He showed me the way.

Upon returning home from home, I felt compeled again by God to do something. He pushed me into writing down my experience in the desert, long hand. Again, for those who know me, I am learning disabled and try to always type out anything I write so I can use spell check. He told me to write it and leave it on our church secretary's desk.

I did so and did not say anything about it because I was embarrased about my spelling. I was not home long when our home phone rang. It was the secretary and she had just read what I had written down. She said it was amazing. Just that Sunday before, one of the teens that had traveled out to the desert with me from her church stood before the congregation and said that she was in the presece of God in the hogan too. She knew she was because she said that I had disappeared during the story and reappeared during the wondering questions.

Eventually, the story was printed in Episcopal Today, a national buletin for the Episocpal Church in the USA.

God took my one, pitiful offering to lay down my will and turned it into a blessing that I will always treasure. The words of Fr. Ian still ring in my ears today. "Oh, are you still there?"

The next few years I could not wait to go out and see my friends in the desert. It is an amazing place that recharges the batteries and brings me closer on my walk with Him. This year, my husband went and I stayed home for many reasons. I was so thankful that he got a chance to go and experience St. Mary's and the wonderful people of Monument Valley. He too got to sleep outside on the deck of the house and look upon the Milky Way. He got to go into the hogan and also commented that it is an amazing feeling inside that cedar hut.

It is stil difficult for me to lay down my will, but when I get the courage to do so, it is always a a wonderful adventure. Fr. Ian, I think I am not still there, but it is a long walk.

To Remeber After My Surgery

2009-07-25T00:08:00.003-04:00

I am writing this blog entry to remind me why I am going to have my surgery. I know that I will probably be in unbelievable pain after my cervical spine surgery and question why I did it. This is to remind me why. For those who are reading this, this also might explain why I am going through this surgery when there are no guarantees that it will work.

A typical day starts with a migraine head ache also extreme lethargy and arm pain. If I am able to take pain meds in the morning, the day is much better. However, most of the time I have to wait until the evening to take the medicine because I have to drive the kids to their doctor appointments and activities. My husband tries to help, but he is extremely busy with work and does travel frequently.

For days like this one, I was not able to treat my pain until 5 PM. By then, I was ready to chew off my arms because they ached so badly. I also had such a headache that I could not see clearly. The muscles around my throat were so tight, it made it difficult to swallow and I frequently choked on my own saliva.

Today the pain was not only in my neck, arms and head, but also in my lower back and hips. I am not sure why I am in so much pain today. It was probably because I had to lift Erica yesterday when I took her to get a cast on her ankle.

I am also feeling pretty useless at this point. I cannot remember simple things or big things that are important. The other day I could not figure out which arrow to hit to rewind a movie. I am forgetting names of people and have been forgetting whole conversations that I have with people. I repeat myself or I forget to tell others what is going on.

At night when I do try to go to sleep, I am awaken because I am choking. There are times when I sleep and when I am awake that I cannot swallow. Sometimes it is due to the bones in my neck that are pushing forward making it impossible to swallow. Then there are times that my brain just cannot remember how to swallow. It is a very strange feeling. I use a C pap machine, but it does not help all of the time.

I was hospitalized for this a couple of months ago because the doctors were concerned that the lesion in my brain stem might have something to do with the swallowing issue, but the lesion is the same size as it was before my C1-C2 fusion in January.

I cannot hold my arms out for any length of time without experiencing severe pain. I also cannot lift anything heavier than a half gallon of milk to pour a glass. It is difficult to load and unload the laundry. Folding is nearly impossible as are doing the dishes.

I feel like I am pretty useless right now and I wanted to remind myself about this feeling so I can remember why I had the surgery.

I spoke to the anaesthesiologist department at The Christ Hospital and explained my condition and surgery. I wanted them to know ahead of time so there was not a repeat of what my mom went through last year. The doctor at the other end of the phone was very understanding and appreciated the advanced warning. He told me that he was going to recommend that I go to ICU at least for the first night to help me recover.

Right now I am getting a little scared and starting to second guess this surgery. I know that this is needed and it will hopefully help me with much of my pain. I also know that this puts me at greater risk of more spinal surgeries.

I don't see how I have much of a choice. I cannot sleep, eat or do daily activities as it is right now. The surgery at least offers a little hope to the situation. I believe that this is the path that God has set me to travel on and I try not to question, but I am human.

I am also motivated by the fact that the doctors said that this surgery is "inedible" for Erica down the road. If she has the surgery before the age of 13, it will be another history making surgery. It is awful to realize that your baby knows the type of extreme pain you are going through and knowing that no one wants to do anything about it because is had not been done before.

When my daughter looks me in the eye and says that I can't do anything about her pain and that she can't wait to go to Heaven because then her pain will be over is almost more than I can bear.

I know that God's timing is perfect and His ways are not our ways. I also know He arrives right on time. So I have to trust that he will not leave my baby in pain any longer than she has to be.

As her earthly mother, it is difficult to watch your children suffer pain and have no way to get them out of it. I know their Heavenly Father sees their pain, but allows it for a purpose that is hidden from us right now. I also believe that this purpose will be reviled to us when we reach our final destination.

This is all scary as I am not sure why God allows all of this to happen to our family, but I do know that we have been richly blessed in so many ways. We have a great family and wonderful circle of friends as well as the peace in our hearts that God knew what he was doing when he gave this suffering to endure. if this brings us closer to Him and His ways, I cannot count it for bad.

I also know that He will eventually pull us out of this storm so we will be able to sing of His glory and redeeming grace for ever.

Last Year at This Time

2009-07-24T17:33:00.003-04:00

I was with my mom this morning making cookies for the Farmer's Market in Hamilton. It is difficult to believe that Mom is able to do all she does given how bad she was last year. She was in ICU at Christ Hospital struggling on a ventilator. In the 18 days that she was in ICU they sucked out two large containers of black gunk out of her lungs. She fought so hard and each time the doctors took her off the vent, she would beg them and me not to be put back on. This happened 4 times. It was gut-wrenching to hear your mother struggling that much and pleading. Her hands were tied down so she would not try to pull out the tubes.

I tried to tell the intensivist that she has EDS and probably sleep apnea, but they would not listen. They would pull her off the vent and expect her to breath on her own, lying flat on her back. It took a call from our geneticist to convince them that she might need additional help.

Many people with EDS also have sleep apnea because the soft tissue in the back of the throat is softer than usual. Therefore, the airway collapses when we lay on our back.

God's timing is perfect, and she did get off the vent and out of the hospital. She still cannot recall many things that went on during her month long stay. I think it is her body's way of defending itself.

The worst thing I had to do was to remind her that both her son and husband were dead. I had to do this over and over because her memory was struggling. To see the look of anguish each time I told her was enough for a life time.

She always apologies for what happened last year. I don't consider it a burden as she emerged from this time a much healthier person, both physically and spiritually. Our relationship has grown enormously in this last year and I would do it over again and again if it meant we could build our relationship like we have.

A few weeks ago she stood before the bishop and re-committed herself to the Church. She did not want to stand before the bishop because she, "did not want to take away from the newly confirmed." I explained to her that many people in the church had prayed for her for many years and this public display was affirmation of their faith and prayers. It was one of the most wonderful days of my life to see her up there.

Now we can talk openly about our faith. She is drawing closer and closer to God and I am able to see the source of the wonderful qualities my mom has always had. She never doubted or turned away from God. She is just discovering how close she can come to Him now she has accepted Him as her personal savior.

Many of you that are reading this, prayed very hard for me and my mother during this time. A thank you would not suffice in expressing my gratitude for your petitions. In my mom, God made a new creation and a great source of strength for me and my family. I cannot imagine what this year would have been like had I lost her.