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.
Friday, February 26, 2010
Preparing the Way
I remember when Bo was still very unstable and it was still questionable whether we would have to say goodbye to him before he would even be old enough to remember us, before he was old enough for us to actually make memories with him, long long long before we would even know what it meant to be ready to say goodbye. It was very hard for me to be around others' pregnancies. It gave me the irrational longing to be pregnant, the condition that kept Bo the safest. In my grief-striken reveries I would imagine having child after child, like each was a layer to buffer the pain. Insurance. Talismen. A continuous hormone high.
And now that we are more than halfway through this second pregnancy, it is a struggle to keep a lid on the hysteria. And I just can't stand being the exhuberant, joyful expectant mother- so much the thumb in the eye of who I was just so recently. And certainly, to any of those other mothers waiting to be mothers.
Maybe that's why I still follow and have so much empathy for the families I follow on the links included on this blog. They all walk paths that are the alternate universe we may have so easily been on, that we might find ourselves on again any day, that we feel we are on some days more than others, still. Saying goodbye, struggling with hospitalizations, searching for therapies, for answers, for support.
Life is uncertain. Anyone might be faced with these realities, but having been so close to them so long, breathing the same air, sharing the same bed with anguish, night after night. It can be paralyzing. And then this child, always on the move, gives a kick, tumbles, morning, noon and night. And we keep moving too. Grateful for the chance.
Maybe that's what they mean when they say someone "found religion." That you've found your stronger self emerging from the broken bones and ashes. I've seen the bright white of extra calcification where a broken bone has mended, stronger than before.
Friday, February 19, 2010
Week 22
The Baby Present is more than half-baked!
Housekeeping: I'm moderating comments now as someone's spambot found blogger, and I unlocked those videos in the last post. I'm not the most technology-loving person and I wasn't sure how to do it. But it's done. Also, I don't think there's a solution to the blogger layout cutting off the right side of the video, so if you want to see the full frame, you'll have to click the link in the vid after it's done to go to vimeo and see the whole thing.
Enjoy!
Housekeeping: I'm moderating comments now as someone's spambot found blogger, and I unlocked those videos in the last post. I'm not the most technology-loving person and I wasn't sure how to do it. But it's done. Also, I don't think there's a solution to the blogger layout cutting off the right side of the video, so if you want to see the full frame, you'll have to click the link in the vid after it's done to go to vimeo and see the whole thing.
Enjoy!
Friday, February 5, 2010
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