I love this picture. What is he thinking, with that doleful look on his face? He's covered in rice cereal, and we had to take a break because he was too darned cute not to photograph. I'll close all my windows in the middle of the day, just to look at my wallpaper, this picture, and I just fill up with so much love at the sight of him.I am of two minds when I think of Bo's medical condition. On the one hand, I am so baffled by the rarity of his disease. It is so rare, that its pathology is still completely a mystery to the medical community. On the other hand, the pediatric gastroenterology conditions that would have led us to Omegaven that are better defined can often be much more severe. At the end of the day, I remain grateful that his intestinal microvilli are the only things affected. He is not on a ventilator, he does not have seizures, his other organs work great. It is a funny thing to be grateful for, but in the community of parents of special needs kids, I am finding out that we are as lucky as we feel tonight, and every night.
Did I really harbor such shallow thoughts as material envy, or vanity? The only thing I find I am envious of anymore are the parents whose kids become TPN-independent. The perfect physique of my yoga teacher or personal trainer no longer give me pangs. That perfectly turned out contemporary of mine at the market no longer causes me to catch my reflection in the door of the milk aisle with remorse. The gorgeous engagement ring on the chemist's hand doesn't embarrass me with lust, anymore. The guy at work, less educated but better compensated, doesn't even get a second thought. But the blogs of babies who are decreasing their nights of TPN makes my eyes sting with tears of jealousy. I'm not phased by normally developing children or their parents. They're in another world, not pertinent to mine and Bo's. But these short gut kids whose intestines miraculously adapt... my eyes are brimming with jealous tears, right now, as I type... even as I cheer them on, these brave, stalwart babies, and their brave, stalwart parents. And my first day of the new year, I am exercising my unpracticed art of forgiveness, clumsily, awkwardly, with love, and the grace of God.
And still, like every other night for the past eight months, we gleefully toast each other to another great day with our best friend, Bo. And finally, I understand in my heart, the notion of "there, but for the grace of God, go we."
