I don't know where to let my mind go with things. This feels similar to Jayen's infantile spasms diagnosis. The research had nothing but grim and devastating outcomes. So seems to be the case for this FOXG1 mutation.
I just want someone to sit me down and tell me what his life is going to be like. Will my baby ever be able to live independently? Will he be able to drive? Will he have kids of his own? What is his life expectancy now? This is all just too much to take right now. Life is spinning out of control. Daddy is leaving, we are selling our HOME, moving to an area we know nothing about, no house to move in to, new doctors we have to find, meet, and get up to speed, and so much more. Someone please put the rug back under my feet.
It sucks. It is not easy. Few understand. And yet knowing you the little I do, I know your strength is amazing and the love you have for all of your children will propel them forward. Jayen may not have the same life as you dreamed him to but he will have one that is full and rich... Right now he is 5 and he has the strongest mom & dad around. He has a childhood that is amazingly full of adventure, love and incredible joy. Each day you wake up just as tired as you were when you went to sleep and you fight they system, make the calls and ask the questions.... because he needs you to. It is not the life you thought for yourself either. You are an inspiration and no matter how far you move, I can listen and never judge when you cry. Be in this moment.... the future is yet to unfold. (coming from the mom who has not figured out how to do that!)
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