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, December 25, 2008
Miracles Like Bo
Bo, of course, is the person who pitched a tent in my heart, just like the miracle of Christmas has pitched its tent in our collective culture. This miracle is here, living among us, whether we believe it or not. He's here. And it's because of all the greater direct miracles which I've already chronicled, and the supporting, or more easily overlooked acts which together make the miracle of an environment that can continue to sustain the likes of him (Bo).
I am no wonderwoman. I would not be the mother, worker, wife or daughter you see on these pages without a little help from: Jose, Bo's incredible nurse who is family to us, my chosen family, my coworkers, my parents, my sisters, the support networks that sustain and nourish them, antidepressants that keep my sleep schedule more manageable, my therapist who is helping me through this new territory, the team of healers and professionals who have committed to sustaining and supporting Bo, and the many scientists, doctors and nurses who may never know us, but whose work make Bo's life possible.
Happy Christmas.
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