This stuff must really be in the air. First: Jack and his sugars. Ever since his blood sugars have decreased by not eating carbohydrates, his mood has gone up. An inverse relationship between blood sugars and mood? A short-term situation? I’m watching and learning. Second: Lulu and all her growing up. Soon I’ll be reduced to teenage support group only. It’ll beat the worrying though.
Third: for almost twelve years, I’ve fought against the idea that Delphine is different from anyone else. This is my confession.
There are two stories. In our house, Delphine speaks openly about being disabled. For example, a while back we were talking and she came up with, ‘I’ve crossed the Atlantic AND I’m disabled.’ It was like an instant motivational speech. We’d never intended to cross the Atlantic for this reason, but she said it – eight-years old, cerebral palsy, crossed the Atlantic on a sailboat. Boom.
The second story is the outside world. I’ve always been circumspect with how to deal with Delph’s journey. Mostly, it’s been painful and conflicted. Sorry, Delph. Just saying painful is painful, like I’m doing her a disservice. But it’s the truth. I had no idea to deal with the wider concept of her disability.
When she was first diagnosed as a one-year old, I retreated from the world. People were super proud of their babies and toddlers. I spent a disproportionate amount of time trying not to cry. At the same time, I loved her to death. It was a huge mix of emotions – from being worried about the future, how independent she’d be able to be and how the world would receive her. All the while being fiercely in love.
When she first started school, we tried to fit her into something of a normal box. It was one of those ‘when in Rome’ moments. Mainstream school and it helped that Delph did walk and talk, if a little differently from most of the kids. I remember a birthday party when all the other kids were playing and she just came and sat on my lap. She did that classic, Delphine-trying-not-to-cry-face. The same one she did it at Candoco last week. Delphine’s don’t-feel-sorry-for-me-or-you’ll-be-sorry look.
It’s changing again for Delphine now. She’s almost twelve and her childhood, let’s-play-no-matter-what era is wearing off. It’s social media now for most girls Delph’s age; how you look, what you say, and how you say it.
I kept her away from school after we came home. It’s true – I had a problem with my own self-titled ‘crayoning room’ for disabled people. I also wanted to protect her from disabled prejudice by able-bodied kids. Why? Both scenarios meant admitting her disability.
Delph’s dance intensive last week was an eye-opening experience. It might not have been perfect with her injury but it worked out okay. There was an unexpected gift too. Well, three gifts actually. Kindness, like-mindedness and fun. She was in an environment with no social pressure.
Suddenly, I don’t care if Delphine gets put into the ‘crayoning room’. I don’t care if she doesn’t hang out with ‘ordinary’, able-bodied people anymore. I’m glad she’s not the same as ordinary people.