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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