The Sin of Pride

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!

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

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

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

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

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

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

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

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

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

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

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!

Not Unexpected News

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

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.

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

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?

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

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?

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

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

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

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

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

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

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?

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

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...

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

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?

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

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.