I am unprepared to divide my time between 2 kids. I am unprepared for Bo not to be the favorite anymore, and even more unprepared if he is? Oh, therapy. I see years of it ahead, which I am also unprepared for. I am unprepared for night nursing (I did pump around the clock for Bo, and I know I really like sleeping through the night, as a result of that). I am unprepared for, but anxious to have a "take home baby." I am unprepared for the cord blood registry expense, but reallyreally think it's something we need to do (any comments from our community of the medically fragile?). I was totally unprepared for gestational diabetes. I'm totally unprepared for another Gemini, but am resigned to the fact that this child will not make it to its original due date, and will be, like Bo, an air sign. God help me.
Somehow, with a double stroller in the garage, I feel calm and hopeful that we will have another natural birth, that maybe I can avoid insulin by swimming more, and that my pelvic pain (symphasis disorder) will abate. It's already feeling much better. And I am oh so grateful to the gods of fashion that flats are back "in."
Bo, by the way, has a drippy nose; hoping it's not allergies. He is into playing tea parties and shopping, learning about currency and horse-trading. He is naturally a better negotiator that I. "One more book before bedtime." Who could say no to that?
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.
Tuesday, April 20, 2010
Monday, April 12, 2010
Premonitions, Discretion and Doubt
I've had trouble writing anything lately. Shortly after my last post, we had a sudden death in the family, and the ominous foreshadowing of that missive contained all the emotions I would have included anyway. We went to the East side of the state to be there for the bereaved. Not that there is anything I can say to take the bewildering absence away. In fact, I'm sure I said a lot of things that were the opposite of helpful, but with the best intentions. I'm not so good at the "shut-up" part of consoling. Hopefully Bo's cheerful demeanor and charm were a source of solace, if not distraction.
We were able to make it out there with a wagon full of medical supplies and still forget a few essential things: power strip, enough saline flushes, paper tape, enough heparin, germex, detachol. We were able to supplement or replace what we had forgotten at the local pharmacies, and have an additional delivery from our infusion company. Additional, because we had our week's supplies sent there, before we called for the additional stuff we forgot to ask for. Oops. Luckily, this location was actually a good hour and a half closer to them than our house, so they were able to oblige promptly and with little complaint.
Whereas the odds of a crisis arising for Bo would certainly have been higher than this particular incident, I can't say that facing all this during Holy Thursday, Good Friday and Easter felt anything less than putting too fine a point on an essentially human condition. That this life is one destined for and designed to encompass death and dying, healing and rising, rebirth and hope in the face of cruelty and pain. Miracles despite, and really because of, the travails that we face on our paths full of stones and roots, predators and pain. The hope for sunshine, the succor of a light rain, the reinvention of life itself. And we keep walking. Partly out of hope, partly entitlement, partly out of lack of anything better to do.
And turning the prism of that drive to move forward in my hands I can see sunlight streaming through this notion of entitlement, changing it, reshaping it into its refined self: faith. Faith that there is a tomorrow. Faith that there will be something better for Bo. Faith that I am the recipient of unconditional love and adoration. Faith that I can be the source of unconditional love and adoration. Faith that this love will drive us to be better than our basest selves, and do better and live better and help better. Hope. Love.
Faith, hope and love. And the greatest of these is Love.
We were able to make it out there with a wagon full of medical supplies and still forget a few essential things: power strip, enough saline flushes, paper tape, enough heparin, germex, detachol. We were able to supplement or replace what we had forgotten at the local pharmacies, and have an additional delivery from our infusion company. Additional, because we had our week's supplies sent there, before we called for the additional stuff we forgot to ask for. Oops. Luckily, this location was actually a good hour and a half closer to them than our house, so they were able to oblige promptly and with little complaint.
Whereas the odds of a crisis arising for Bo would certainly have been higher than this particular incident, I can't say that facing all this during Holy Thursday, Good Friday and Easter felt anything less than putting too fine a point on an essentially human condition. That this life is one destined for and designed to encompass death and dying, healing and rising, rebirth and hope in the face of cruelty and pain. Miracles despite, and really because of, the travails that we face on our paths full of stones and roots, predators and pain. The hope for sunshine, the succor of a light rain, the reinvention of life itself. And we keep walking. Partly out of hope, partly entitlement, partly out of lack of anything better to do.
And turning the prism of that drive to move forward in my hands I can see sunlight streaming through this notion of entitlement, changing it, reshaping it into its refined self: faith. Faith that there is a tomorrow. Faith that there will be something better for Bo. Faith that I am the recipient of unconditional love and adoration. Faith that I can be the source of unconditional love and adoration. Faith that this love will drive us to be better than our basest selves, and do better and live better and help better. Hope. Love.
Faith, hope and love. And the greatest of these is Love.
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