Summer Days

Yikes, sometimes I have so much to say I have to schedule posts and then a week or two goes by and nothing, nada, zip.

We just got back from vacation, which was lovely. We stayed on a farm, in an old log homestead. I was thankful again, that despite C’s CP, she has been very healthy. She got a fever on Day 6, and if she’d had a shunt, we’d have had to race to a hospital to make sure it wasn’t malfunctioning. Thank goodness, she seemed to just have a virus, and I just dealt with it the way we do with the others. But she was so sad and so much weaker. She couldn’t even tolerate holding her head up in her high chair. Thankfully she’s on the mend and she is back giving her patented Coco smiles.

I knit a lot, but didn’t count on no web service, so I couldn’t access my Ravelry patterns. That means, I just did about 20 more Pop Blanket Squares, but I won’t bore you with pictures. Instead I’ll bore you pictures of the kids.

I also read two books. The first was Four Walls of My Freedom, by the mother of a now-adult child with CP. It was a good read – first just because it’s interesting to read the perspective of someone looking back on the early years. With the benefit of hindsight, she questions whether all the more intense therapies or medical treatment was worth it in the long run. The balance between “fixing” and “accepting” is a constant moral dilemma I have. It’s sobering too, as she explains some of the trials they’ve gone through, such as when she thought the doctors were finally understanding the pain her child was in, and instead she was investigated for giving her child too much pain killers. It’s more than a memoir though, as she makes some interesting arguments about the way we value people with disabilities, offering a sort of a primer on some of the philosophical thinking in this area. She discusses controversial figures like Peter Singer, who has argued that infanticide may be warranted in the case of children born with severe disabilities. The prejudice and stigma faced by people with disabilities is very real – perhaps one of the last areas in which it is socially acceptable to make that kind of argument. She proposes a very different approach, based on the thinking of Amartya Sen, which values experiences and relationships as measures of well-being. She works with someone to develop an index of well-being that applies to her family.

I also started, and am mostly through, Andrew Salomon‘s Far From the Tree. At first I was puzzled by this book, which deals with a concept he calls horizontal identity – children who are different from their parents due to deafness, dwarfism, severe disability, or even things like being born of rape. I wasn’t sure what it all had in common, or whether I should be insulted by the idea that having a disabled child was similar to having a child who commits mass murder. Anyway, I put it aside and read it and accepted perhaps we shouldn’t place these experiences in a hierarchy. Each chapter stands alone and simply recounts the experiences of families dealing with these “differences.” He tends to the extreme – his examples on disability were all families of kids with multiple severe disability, and I found his chapter on autism particularly bleak. But he resists easy, pat summaries – discussing the controversial Ashley Treatment with sensitivity and compassion to both sides of the debate. His strength is that he lets the stories speak for themselves, and they in turn speak to the larger human experience. I felt profound empathy for what they were going through, even in stories where parents walked away and said “Sorry, I can’t do this.”