Hugh not having a diagnosis is part of that normal. I once yearned to know what was 'wrong' with him, what the future might hold; but as time went on it didn't matter so much. He's just Hugh and what will be, will be. Yet not having a diagnosis does present with the difficulty of not knowing how his condition may progress; he might improve- gradually developing and gaining skills, or he might regress and deteriorate. Not knowing what is wrong, not knowing a cause means that anything is possible. It s a fear that many SWAN (Syndrome Without A Name) parents face. Conversely it is also a source of hope because, well *anything* is possible, and although unlikely, maybe one day Hugh will sit or stand or walk or talk... Who knows?
A little SWAN friend of Hugh's has been struggling recently, her seizures have taken a terrible toll on her and she has been moved from the hospital to the hospice to prepare for her end of life. She has just turned one. No parent, no family should ever have the discussion that they have had; are having. No one should ever have to face the reality of such a bleak prognosis. It is a stark reminder of the conversations we had when Hugh was at his worst, of the book I was given on how to plan his funeral, of the story shared with Sean about special rooms in heaven. No family should have to suffer that way.
I hope and I pray that this special little girl will make a miraculous recovery. I pray that her family find the strength to cope. And selfishly I pray that I will never again face that reality, though I know one day I might.
Most days our lives are just the same as yours.