Not Everything is in a Word

Learning for us is a stop-start affair. And beautiful Delphine takes this to the extreme. One day this kid reads like a newsreader and the next day she struggles reading three-letter words. My life revolves around learning. I don’t know if this makes me cool or crazy but at the moment, it feels like a never-ending journey. We never do enough of it. I’m not formally trained to understand it. We muddle through. Sometimes we even enjoy it. Every once in a while, well I wouldn’t miss it for the world.. for Delph however, I couldn’t comment. Maybe when she’s older.. you know with reflection behind her? Hold on.. who am I kidding? I’d like to say that she’s stopped hiding when the school ‘bell’ rings, but this kid does a surprisingly solid ghost impression.

I’ll give you some background. The first year we went away on Quest, I taught both girls together. We were sailing a lot of the time (Milford Haven in West Wales to the Caribbean) and I had no plan. I just equated school to time. You do enough of it, I thought, it’ll just sink in.. right? Haha! Jack would ring his hands at this point and utter, ‘Efficiency… what about efficiency?’ Efficiency features strongly in the shaping of his working identity. Me? Not an efficient bone, not even a tendon.

Perhaps it wasn’t surprising then that this first year was hard. At the time, Lulu was chewing at the bit to learn.. a normal thing for a curious ten-year old. We could have explored the universe together me and my Lu. Our boat school was supposed to be a freeing experience. We were going to learn stuff we were interested in, not following an impersonal school curriculum. The only thing was, we weren’t standing on an even platform. I realised then that although Delphine was eight-years old and had been attending an excellent primary school, she was still right at the beginning. She didn’t quite understand the concept of adding and subtracting. Reading for her was even harder. It wasn’t reading really, for us it was read-wrestling. Each word a slippery move; chokeslam. Facebuster! Piledriver!

So here comes my cerebral palsy rant. It’s not fair. That’s it. Not much of a rant perhaps I know. I just keep thinking it could be worse. After all it’s not a disease and it’s not technically progressive. It’s just so damn unpredictable. This is because cerebral palsy is different with every child. Some kids don’t struggle to learn. For these kids their disability is largely physical. Other kids are more confidently mobile but suffer cognitively. Walking is easy, reading isn’t. Where is Delphine in this divide? Well, I’m proud to say that Delphine is well-rounded in the cerebral palsy world. Our balanced kid is actually split down the middle.

The nature of Delph’s very early brain injury means that the right side of her body is weaker than her left. If you look at it the other way around; her left side is practically bionic. Super strong arm. Muscles in her left-hand ripple like waves. Her left ballet foot points like it’s dying for pointe shoes. Her right side swears that it belongs to a different person though. A kid that doesn’t exercise much. The muscle tone is poorer and her right hand tends to curl up into a fist when she’s concentrating. Even her right leg is a bit shorter than the left. So, with this information we can now throw the concept of Mr. Bilateral Human Symmetry out the window… see you later you overrated loser! Ahh, that’s better.

The doctors weren’t sure at the beginning of Delph’s life and told us to be prepared. We held our breaths as she got up to walk at two-years old. She’d side-eye us too if she smelled any pity. Later she began to talk, first with single, carefully-formed words and then culminating in that endless, chattering way. With this, we signed her up for dance class to help improve her physiotherapy and take a conversational breather and the rest was history. We’d never counted on the depth lurking in her soul. Now this kid loves a left-footed pirouette more than almost anything else. Culture is wonderful. For Delphine this means that literacy can go and take a long and lonely hike.

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