Restrained optimism and the 2007 tax rebate/stimulus package have conspired against my natural state of frugality. I went online and bought a bunch of side-snap/kimono-style onesies for Bo.
I spend a lot of my time these days lurking on the blogs of other short gut kids. It gives me a sense of community and takes the edge off the isolation I feel in my real life. I follow their ups and downs; their line infections and high jinx. Sometimes they are blessed with miracles of their own: Omegaven, naturally decreasing bilirubin, no longer necessary TPN. With each tragedy, my heart breaks a little more, and with each miracle I learn to embrace the unknown within.
I spent my entire pregnancy reading the saddest books I could find. Every night, Jose would rub my swollen legs and I would cry until my eyes were swollen. Then Jose would read another segment from "Journey to the West" to Bo, and we would fall asleep, so happy, to the kicks and somersaults of Bo-in-utero.
After we were given his diagnosis, I would cry, wishing he was still in there, safe and warm, free from his disease. Just another baby. And all those months before Omegaven, just waiting and watching and wondering how many days or months we had left together, I would wonder if maybe it was intuition that had drawn me to books like, "The Year of Magical Thinking," where I had to ask myself what it would take to endure such grief. I thought a lot about entropy.
The second law of thermodynamics is: entropy is ever increasing. And the myth around its author's clarity is that his mother and wife died in the year before he wrote it. And I would think about the dark place you would have to be to conclude that this was more than a theory, but in fact something that could be proven mathematically, and eternally. That forever and ever, things fall apart, more and more. Amen.
So now I read about some child's miracle tempered with another's demise, and I am humbled. And I am awed. And I receive both the blessings of hope and compassion, wondering if Bo's Omegaven is the only miracle we get, or if we can hope for more. Knowing that my greedy optimism is something that is both shaming in its greed, but relentless in its need. Knowing that entropy is ever increasing, but that its march forward is also marked by the unmappable lulls and edies of each moment of this life.
Bo's first 2 teeth came through, Monday!
