I don’t want her to be cut.

My daughter has already endured four operations in her seven years. This morning she told me about a dream she’d had where she was in the hospital, her head wrapped with bandages. I remember how when she was smaller, she used to cry in her sleep, and I always wondered if she was dreaming about the hospital, about being stuck with needles and surrounded by strangers. I shudder at the thought of putting her in the hospital again, and yet, I gave Yoshi permission to e-mail the famous Dr. Matsuo who has developed a surgical procedure that has enabled individuals with cerebral palsy to walk.

When I brought Lilia to school this morning, several other kids were jumping rope together. Lilia watched them while I was unfolding her stroller thingy and getting her bookbag ready. I wondered what she was thinking. Did she feel sad because she couldn’t jump rope with them? Does she want to be able to walk? I think the answer to that is “yes.”

Yoshi is most influenced by TV, which is where he learned about the great Dr. Matsuo. I am most influenced by what I read. In Life as We Know It, Michael Berube wrote about refusing an operation to have a gastronomy tube inserted into his newborn son’s stomach. He and his wife managed to feed their son through a nasal tube until he was ready to take all of his nourishment orally. In Aurelie Sheehan’s novel History Lessons for Girls, a doctor advises a particularly gruesome operation to correct a girl’s scoliosis. Her parents decide to investigate alternative treatments – massages, yoga, faith healing – and in the end, she turns out okay. Harriet McBryde Johnson, author of Accidents of Nature, also refused surgery to modify the curvature of her spine. One of the characters in her novel defends the right of the disabled to give up on walking and use a wheelchair.

The doctor replied to Yoshi’s email by saying that if Lilia wasn’t walking by the age of four, we can safely assume that therapy alone isn’t enough.


5 thoughts on “Scalpels

  1. When my son was born with a gaping hole in his face, a cleft lip, I wondered how I could possibly wait three months until he was old enough to have his first repair. But by the time he was three months old, I wondered why the world couldn’t accept someone with a hole in his face. I hate all the surgeries, but especially the ones that are necessary to make his appearance acceptable, closer to normal.

    I think he has the sweetest face, but recently he told me, “I know I’m ugly.” I was shocked. I didn’t know he thought that. He said his mouth and nose are “all messed up.” He didn’t seem upset, just very matter-of-fact, and I didn’t know what to say.

  2. It’s got to be so difficult being faced with these decisions.

    M. also had several surgeries as a kid, and it was a later surgery that M. had that he says was responsible for his present difficulty in walking. I don’t know how much age and weight have to do with it, but he remembers walking with comparatively little difficulty when he was a kid, and now, while he does walk, he does so with the help of a cane and never for very far. But in his dreams, he flies…

  3. I feel for you, Gaijinmama. My closest example involving my kids is insignificant compared to yours (or Sandra’s or Lori’s husband) that I am too ashamed to mention it, but I really understand the complex feelings that arise with kids and medical intervention. I gather from your blog that your daughter has a cochlear implant so no doubt you had to grapple with this issue at that time as well. Good luck with it all.

  4. It’s a tough call. My daughter can’t walk at all, and I have to admit that the other four surgeries she had improved her life dramatically. But there’s always a risk and a possibility of failure.

  5. What a tough decision this must be for you. I know however you will research this to the max and make the right one. Sending many positive thoughts your family’s way.

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