Sunday, August 10, 2014

When Our Best Isn't Good Enough

The CCHS community has suffered yet another loss.  A little girl named Sloane lost her battle with CCHS.  Her parents did all the right things, took great care of her but yet it still wasn't enough. 

We take such careful care of Noah.  We go to all of his checkups, get all of his vaccinations, do all of the yearly tests, read as much as we can on his disorder and do everything we can to make his life as normal as possible.  But there is always that fear.   The fear that our best isn't good enough.  Noah has a mild mutation of 20/25, which means he doesn't have as many problems as some of the higher mutations.  But that doesn't matter to me.  The risk is still there. 

My greatest fear is that Noah will have a heart pause.  We have lost several CCHS kids to heart issues.  Noah has yearly holtor monitors to test for this.  However, as his doctor has told us, CCHS is a brain issue, not a heart issue.  He could have a holtor monitor for 3 months and the next day after he has had it removed, he could have a pause.  Because its a brain issue, it can happen any time.  There is no rhyme or reason. 

My other concern is the development of neuroblastomas (cancer).  One sweet CCHS boy was tested every 6 months but he still developed neuroblastoma and lost his battle also.  Noah gets tested once a year for this.  Is this enough?  I don't know. 

The CCHS community is small.  However, we are close.  When one family cries, we all cry.  Our children have so much in common and even though they are fierce warriors, they are still fragile.   Sometimes we forget that.  We try to go about our daily lives as normal as possible, not dwelling on the possibilities of this crazy disorder.  We live our lives doing the best that we can, doing all of the right things, but still sometimes that is not good enough and we have to live with that. 

In memory of our brave CCHS warriors

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