August 28, 2009 by Rieshy
The prognosis for everyone is death, or death and taxes as my father loved to say.  Most of us just like to pretend  that we know what tomorrow will bring.

We have what we consider a "fair expectation" of what will happen.  I certainly had no expectations of children with metabolic disorders.  Nothing in our family tree lead us to expect or fear that.  

Jack's first crisis: we didn't know what was happening or what would happen.  I gave my gray, unresponsive son to God in the ambulance.  God gave him back to me, along with a miraculous measure of peace to carry me through the first hospital stay.  In hind sight that was the easy part of our journey.  

More than a year later we still don't have an actual name for his disorder which means we don't have a prognosis.  I'm reluctantly finding that I don't need to know what will happen with Jack's health.  Don't get me wrong, I want a prognosis,  I still desperately want a name for his disorder.  But I don't need one in order to cope.  

Jack's life is more than probabilities and God is bigger than any medical prognosis.  I'm going to do the best I can with the gift of every new day for each of my children.  Some days that will be easy, some days I'll need more miraculous help.
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