Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Thursday, February 3, 2011
Happy Year of the Golden Rabbit!
The New Year blew in with silent fury. A blizzard of icy angora rabbits littering the sides of the road in their ridiculously giant, stories high quiet. How can something so impermanent cause so much real damage? It will all be melted in a few short months. A surreal memory in our green and luscious summer days.
I think I saw Ahn's first teeth (tooth?). They are barely in, reflecting the light, but just. She is drooly and only as fussy as she ever gets, not much.
I saw the top of my foot and got a little weepy. Firstly, my foot is almost always covered in this weather. But more importantly, I saw again, the scar where my "lunar" had been. The one that matches one on Bo's foot. It was a reminder of how permanently he is tied to my heart, and how these bodies that are so precious are so fragile. And it may be considered a bit of vanity to prize them so highly, but it's the only existence I know. And my faith is imperfect. And I know that when we are parted in this world, my heart will ache with the combustion of a million suns.
I look up to pull Bo's hat and mittens off to, "Just BoBo do it!" Unless we're talking about putting his boots on, then it's, "Just Mommy do it!"
I go to the links on my sidebar a lot, maybe obsessively. I witness their suffering. It reminds me that my own troubles are both behind and before me. It is like licking a healing lip. Ouch. Yup. It still hurts. Don't forget. Don't forget what that feels like. Don't forget what it felt like to rock him to sleep, shifting from foot to foot, singing about spiders and suns and rain. Don't forget how funny she is slowly collapsing from sitting up- crying out with indignity. Don't forget how delighted she is with his too-pretty lashes, how she is in wonder at her sweet babbling. Don't forget his fervent bridge building- across generations, cultures, this life and the next.
As another part of my heart belonging to my dear friends is wrung with grief for their mother who passed last week, I am reminded that this brokenness I feel is the place where the weld will be stronger than the untested fibers of my being.
And the life that swept the breath out of me for months, continues to take my breath away. She eats with gusto, lunging at the spoon, incapable of waiting the nanosecond it would take to travel from between us to her mouth. She is the Spoonabomber. Joyful, jolly, gentle. Peace.
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