My daughter Ellie was diagnosed with cerebral palsy 6 years ago. Since then, she has worn a splint on her left leg pretty much every day. We do daily physio with her to keep up her range of movement. She has been doing so well that on Wednesday she was fitted for her first Lycra sock. This truly is the end of an era for us. If you would like to read a little more about Ellie’s medical journey, please click here.
An era of splints
We saw her orthotist a few weeks ago. The Lycra sock had been on the cards a year ago, but she had had a big growth spurt and he decided to keep her in a splint. This time, after watching her walk up and down his treatment room for what seemed like an eternity, he declared her ready.
For those of you who don’t know much about cerebral palsy, the spastic kind is where muscles are stiff and tight, and quick movements may be difficult. This is where the derogatory term “spaz” comes from. It is generally associated with someone who is stupid or clumsy. I’ve never heard the word used in a positive way.
Ellie had to have a tendon lengthening operation as she could not get her left heel on the floor. After that she went into her first splint. She was part-way through her year in Reception. I don’t think she can remember life without it, or without doing daily physio. When we were given the news that she could now have a Lycra sock, she said, “Mummy, I think you are more excited than me!” I probably was.
More excited than she was
And this is because I know all about the things she should have been able to do. One afternoon when I picked her up from school, I was summoned by her teacher. Ellie had been upset but wouldn’t say why. It turns out that when she was sitting on the carpet, listening to a story, she trapped the top of her leg in the hinge of her splint. She was left with a nasty blood blister. For this reason she has not had a great deal of opportunity to play on the floor. There have been so many times when her splint has rubbed and she has ended up with blistered patches – mainly in hot weather.
I don’t think she remembers the battles when she was 5 or 6 about doing her exercises. We used to physically fight over it. For 6 weeks after her operation we had to do half an hour of exercises, twice a day. I was about to tell the physio that it was unsustainable when she told us we could reduce it to once a day. It has taken us years to discover that doing her physio before breakfast actually reduces the battles enormously.
From now on Ellie will be able to wear sandals as the Lycra sock stops before her toes. When she starts secondary school, her sock will be hidden under tights or knee-length socks. She will not have to put up with the stares or well-meaning questions about “that thing on your foot”. It will be entirely her choice as to whether she talks to people about her medical condition or not.
Perhaps these reasons help to explain why I was so happy with the news. Ellie doesn’t know any different. I try not to mourn for the way her life could have been because it has been enriched in so many other ways by the people we have met and the care she has received. She has shown incredible resilience and has not let her disability stop her do anything she puts her mind to. We give thanks that her condition is so mild.
We have many more end of an era events to come in the next week – her last at primary school… Let’s see if I have enough emotional strength left to post next week!
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