Thursday, May 31, 2012

“Happiness makes up in height for what it lacks in length.”
Robert Frost
5/31/12  Our life has, for once, been pretty uneventful.  Our Tiny Princess had an increase in her heart medication, which has made such a huge impact on her personality.  I can tell she isn't getting tired as much, and loves to crawl as fast as her little body will take her.  She squeals and giggles as we chase her around the house.  She just seems to love life, and you can see it by the huge smile she has for everyone. 

We've been to Houston, but nothing has really changed.  The only thing we are looking at doing is a muscle biopsy. Honestly, it's a kind of scary procedure.  The doctors in Houston have decided that waiting until she was needing a heart transplant to do the biopsy was not a good idea.  She seems strong enough to be able to handle the biopsy now.  The question is, are we strong enough to allow this procedure to be done.  She will have to be put under with an overnight hospital stay.  There is a possibility she will not handle the biopsy well.  It also means that we will have to face the truth about a heart transplant.  Will she qualify?  If she has a mitochondrial disorder that will attack her new heart, she will not be allowed to receive one.

 Part of me understands that if she has that issue, giving her a new heart would not be fair for someone who could live longer.  Part of me doesn't care.  That part of me wants to be selfish and demand the heart.  I mean, why not? I've already had to say goodbye to one child, is it really fair to have to say goodbye to another one?  People think I have it together, but I really don't.  I think like most parents would, but know those thoughts are not going to change the outcome.  All I can do is pray.  Pray that God will do what is in his plan, but pray that she does make it.  I'm human, and I'm still a little selfish. 

Selfish, hurt, confused, scared, and hopeful are the feelings that drive us everyday. What drives us the most is the beautiful smile that greets us when we call her name,  Ella.