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!