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, January 19, 2012
Loving the Gemini
They are both Gemini's. They both love life. Everyone they meet is a friend. They find the person looking back at themselves in the mirror delightful. They are Gemini's, I realized with a startle, because they each have a duality. The living, breathing child that is warm to the touch, and a delight to see. And then there is their other. The child who almost was not. And so, when I see them, hold them, feed them, scold them, pick up and put down for bed/time outs/car seat adjustments/high chairs, I remember this.
I often wonder if I'm simply morbid, or a grief monger. But preparing them (me?) for the future, the unknown, the likely disappointments, grief, loss and pain to come requires arming them with joy, compassion and love today. That means giving them structure, assuring they have enough sleep, trying to acclimate their palates to good/whole foods. Because one day, when their twin looms, or mine, or that of someone they love, I want them to be prepared. I want to be prepared.
On the one hand, US culture and society wants us/me to pretend and strive for eternal youth.
But my child is young, and has a much higher probability of death than most of us. On the other hand, Bo is fairly stable, and I certainly don't want to point out the shadow of his twin, looming over my head. And that is my reality. It is real. Death. His. Very real. More real than mine. And then, there's Life. Very much alive. Tantrum-ing. Reading. Hamming it up for the baby's giggles.
While every day may be one day closer to the twin. I also know that every day is a victory. Every day is a gift.
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2 comments:
i love you. i am so thankful to be sharing this gift of life with you.
xoxoxox
My name is Jenna and i came across your site, Ur kids are beautiful, handsome, cute and adoreble. They are precious and special gifts. Bo is a courageous, strong and determined fighter, he is a brave warrior, smilen champ and an inspiration. He is a super hero, super trooper and a tough cookie. I love little kids. I was born with a rare life threatening disease, developmental delays and other diagnosis. I love it when people sign my guestbook. http://www.miraclechamp.webs.com Hi
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