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So beautifully written, as always, and heart-wrenchingly honest. You may not realize how much your son has changed the lives of people who have never met him, or you, as well. I remember your fear and pain before his birth and I thank God for every one of Ethan's miraculous days. Every single time I see a photo of his adorable face, I am reminded of His greatness and His generosity and His plan that we won't ever understand. I don't know if I've ever seen anything that shows those things as purely as the gift of Ethan does.
#1 Cyndi on 2016-01-01 00:34
I do underestand Ali. My son carries a medical condition that comes with it the threat of 'any time' -- and maybe it will never never happen. Maybe we'll carry that emergency injection for decades and never need it. Maybe he'll continue to fall ill with this shattering regularity yet never fall down that dark hole of medical crisis and sudden death and yet .... We carry the maybe/anytime with us everywhere and it is a strange sort of tension ... I don't write about this aspect very often myself because it is so hard to articulate ....

So, I just wanted to say, I hear you, and I understand. Life has so many unexpected blessings and miracles and you just never know what the next bend in the road will reveal to us .... The important thing to is to love one another and praise God always. Always. And trust that He has it well in hand ... This story is agreat unknown for us, but He knows, and that is a great comfort to me. {{hugs}}
#2 Ellie (Homepage) on 2016-01-05 18:02
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