Monday, November 24, 2014

It's been a crappy week

Alexa is fine! Great in fact!  She is perfectly happy and more importantly healthy.

This is not about her....

Our UCD community has had a rough couple of weeks.  And when one of us feels it, we all feel it. Probably because we have all been there.  In those same shoes.  All too often!  We know that it could have been us.  We know that it still could be us.  And it is scary and frightening and sad and infuriating all at the same time.

In these last couple of weeks, two babies have had to face a second transplant after complications arose from the first one just days prior.  Baby boy is in critical condition as his body adjusts to a new liver (again).  

This afternoon, I read those unfathomable words of condolences on Baby girl's facebook page.  

I did not expect that.  I was shocked.  I was devastated.  I was angry.  In fact, I still am.  All those emotions and more.

Today I was swiftly kicked back to reality.  The reality where no matter how easy Alexa made it seem, transplants are complicated and dangerous.  Where Urea Cycle Disorders do not come without its own set complications. Both are equally risky.  Neither is a choice any parent should have to pick between.  

And yet here we are....

After all is said and done; after all the questioning; after all the tears; all I can do is hold my daughter and count my blessings.

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