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Tuesday, May 30, 2006

The weeks after

It seems like a lifetime ago when I would write--almost daily. My day wasn't complete until I sat down and shared some introspection with the world. It was so important to me, to my identity as an invisible at-home parent. It mattered. When I wrote I wasn't invisible anymore. I would sit bleary-eyed at the computer until late at night when the only sound was the tapping of my fingers against the keyboard and the ticking of the Einstein clock above my head.

Then my kid needed surgery--yet again. I could barely write. I could barely sleep. I could barely eat. Those are all bad things for a parent. Those are all really bad things for a pregnant parent.

Now we're on the other side of that harrowing experience, and I'm trying to remember who I am, who I was before we went into that storm. And it seems that I've come out a different person. I'm not just a woman or a mother or caretaker or a friend or a wife. I'm someone who watched my son nearly die. I'm someone who cried for hours every day. I'm someone who felt pain so deeply that it hurt to eat, to drink, to wait, to breathe. I watched my son crawl back from the edge. I watched the staff draw blood from his neck, rip tubes from his chest, be so weak that he didn't have the strength to hold up his head or lift his arms. He wouldn't look at us, talk to us, ask us for help or tell us when he was hurt. He wouldn't smile or laugh. He barely cried. He was stoic. He was sad. And there was so little we could do besides be there with him and try to comfort him. During those five-and-a-half weeks his body was transformed. After surgery, he was swollen, so bloated. Then he started to disintegrate, losing nearly 20 percent of his body weight. And now he's so small, so skinny, so boney, so different. He has been cut and poked on every part of his body. He has scars on his arms and legs and wrists and chest and stomach and neck.

I was scared to feel optimistic. I was afraid to love him completely, as if my body was trying to shield itself from more hurt, from what seemed inevitable. So many times my brain was trying to capture the essence of what we were going through. Even when it seemed that things were getting better, they often got worse again. My mind kept focusing on life after death. I'd always thought about those words as if it was for the person who had died. The journey they would take after they died. But those words seemed to take on a new life during those weeks. My mind was thinking about my life, my husband's life, my unborn child's life after the death of my son.

We are so grateful that we have him home now, even if he is smaller than before. He's alive and we have been given the gift of getting to know him more as he grows. Writing no longer sustains me. Those weeks in the hospital were so raw, so physical, so present. My writing is so abstract, so sedentary, so transparent, so insignificant.

Saturday, May 20, 2006

TIC doing better; MIC not so much...

We finally celebrated TIC's third birthday today--just seven weeks late. From a cardiac perspective, he's doing great. Unfortunately, his lymphatic system isn't healed and he's back on a non-fat diet for another month. As for me, I'm 34 weeks pregnant and I fell down the stairs last night and broke my left foot. As if my life wasn't exciting enough. Now I'm on crutches and practically useless as a caretaker. Ugh. Actually, at this point, we're not sure if my foot is broken or just sprained...we didn't get an x-ray. But I'll either be on crutches for two weeks or five weeks. At least I didn't fall on my belly and go into labor.