Sunday, December 26, 2010

A Sigh is Just a Sigh...

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

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

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

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

Monday, December 6, 2010

A Fresh Perspective

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

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

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

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

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

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

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

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

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

Sunday, November 21, 2010

Acceptance with Joy

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

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

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

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

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

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

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

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

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

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

Thursday, November 18, 2010

Hosptial Bound

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

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

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

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

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

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

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

Sunday, November 14, 2010

What Do You Say?

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

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

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

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

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

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

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

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

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

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

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

Author: Robert Browning Hamilton

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

Monday, November 1, 2010

The Human Side of Things

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

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

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

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

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

Light and the End of the Elevator Shaft

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

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

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

Tuesday, October 5, 2010

Nick Who?

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

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

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

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

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

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

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

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

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

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

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

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

Splash in the Face

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

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

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

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

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

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

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

Friday, September 10, 2010

The Ball is Rolling

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

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

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

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

Prayers are answered, faith restored, joy is infectious! 

Friday, September 3, 2010


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

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

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

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

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

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

Wednesday, September 1, 2010

Great News

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

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

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

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

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

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

Sunday, August 8, 2010

All Or Nothing

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

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

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

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

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

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

Tuesday, August 3, 2010

The Smoking Gun

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

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

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

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

Thursday, July 29, 2010

Ask For Believing....

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

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

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

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

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

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

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

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

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

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

Friday, July 16, 2010

"The Peace that Passes Understanding"

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

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

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

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

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

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

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

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

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

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

Wednesday, July 14, 2010

Remember the Blessings

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

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

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

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

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

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

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

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

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

Tuesday, July 13, 2010

Grace for Today

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

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

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

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

Monday, July 12, 2010

My Brother

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

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

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

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

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

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

Sunday, July 11, 2010

Permanent Loss

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

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

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

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

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

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

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

The Answer is Coming into View

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

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

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

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

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

Sunday, July 4, 2010

Finding My Joy with an Ironing Board

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, June 25, 2010

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

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

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

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

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

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

Tuesday, June 22, 2010

First Date

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

That being said, here is the story:

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

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

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

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

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

Monday, June 14, 2010

By CJ Age 10

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


Friday, June 11, 2010

God Is... By CJ Schulze

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

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

In Jesus’ name, Amen.

Monday, June 7, 2010


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

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

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

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

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

The following is to a great devotional about change:

Friday, June 4, 2010

"If I Only Had a Brain..."

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

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

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

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

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

Thursday, May 27, 2010

What are the Frickin' Chances?!

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

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

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

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

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

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

Tuesday, May 25, 2010

Activity Pacing

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

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

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

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

Monday, May 24, 2010

Why My Daughter is My Hero

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

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

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

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

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

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

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

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

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

Sunday, May 23, 2010

How Can a Loving God Let This Happen?

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

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

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

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

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

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

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

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

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

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

Friday, May 21, 2010

Trip to the Mall

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

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

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

Thank God for the Ramp!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, May 14, 2010

Divine Providence

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

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

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

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

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

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

Monday, May 10, 2010

Mommy's Special Drink

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

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

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

Saturday, May 1, 2010

Wanna Race?

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

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

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

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

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

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

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

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

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

Thursday, April 29, 2010

EDS Exposure

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

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

Here is the link to the report:

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

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

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

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

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

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

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

Wednesday, April 21, 2010

Help Has Arrived

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

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

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

Praise the Lord!

Friday, April 16, 2010

ERs, Doctor Visits and Injections Oh, My!

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

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

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

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

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

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

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

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

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

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

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

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

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

God Bless.

Friday, April 9, 2010

God is Faithful

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

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

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

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

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

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

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

Sunday, April 4, 2010

Life Cut Short

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

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

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

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

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

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

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

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