One of our Ambassadors has kindly agreed to let us share her latest blog post on family life with two girls, aged 7 and 9, who both have dystonia and are being treated for mitochondrial disease:
“Today has been a toughy. Today my daughter thinks I’m a mean mum.
Now if this was from my lovely but quirky one I probably wouldn’t feel quite so bad, frequently I’m told I’m horrible & she doesn’t like me (usually after I’ve not twigged that today the sauce isn’t supposed to be mixed with the pasta even though yesterday it was!) Today it was from my more stable and concrete child. To be honest I don’t blame her.
Both girls have dystonia this affects them in different ways, but for A this causes her to have a tight calf, stiff ankle and variable tone in other parts of her body. She looks relatively fab most of the time, but to the trained eye her hopping, skipping gait, her rather slumped sitting posture & her writhing movements tell a different tale.
A has always been relatively OK about the things she has to deal with, she has done a few show and tells at school about new wheel chairs and even spoken to her class about what dystonia is. Being in mainstream despite her challenges and part time hours has suited her well once we succeeded in getting her a full time one to one.
I am immensely proud of A’s gutsy nature, she embraces life and enjoys as many aspects as she can. Quite different than I was her age. Sometimes,though, the gutsy nature and being in mainstream can create tricky situations though. A wants to be doing what her friends are doing, but when they play games running off in the field, actually then A can be left behind not able to keep up. Sometimes the boys in her class aren’t always very sympathetic when she doesn’t keep up in the queue. We’ve tried to help A develop her own strategies to deal with this, humour or witty comments back have often been the most successful. It’s about building up her resilience as sadly in the wider world this is probably the experience she will have to deal with.
My little Miss Determined came off some medicines for her dystonia last year as her neurologist thought they could have been causing her memory issues. Initially it didn’t seem to make too much of a difference other than a tremor when tired. But gradually we have noticed that she is stiffening up. Climbing and walking are becoming trickier for her and recently she has been complaining of pain in her ankle. We are awaiting splints and botox to try and help with this but in the meantime she has to deal with the discomfort.
Unfortunately wanting to be like everyone else has caused a bit of an issue this past few days. She is obviously in discomfort but when there was the opportunity to go to the local secondary she chose to walk. Whilst A can run and hop and skip around the playground relatively effectively the slower and more repetitive action of walking triggers spasms in her ankle and feet….cue wakeful night.
Today she was due to go to gymnastics. Having discussed this with a physio friend we came to the conclusion that perhaps avoiding jumping would be good. Unfortunately gymnastics involves a lot of jumping and the thought of not being able to do the class in its entirety lead to some seriously loud door slams! Watching her tears flow was enough to break my heart. I’m not sure which is worse seeing her in pain or emotional distress. As she is nearing double figures I decided to put the ball in her court and let her decide for herself what she would do…..so to the class she went!
We have already got into the habit of arriving fashionably late as that means the girls miss out on the high energy warm up, but they then get to enjoy the important bits. Like most mainstream activities the other parents drop the kids and take the opportunity to have a quiet latte or do a quick Tesco shop while they have the opportunity. For me though, I’m the lone parent watching just in case there is any sign of a seizure or a flare up of their asthma. I’m not actually allowed to look like I’m watching as that would just be embarrassing apparently! So I stand there trying to pretend not to notice that A is limping. Again to the untrained eye her smiles at the end of each activity covered the fact that she was in pain…but you can’t trick a mummy. Stood there alone my tears started to flow. I was rescued eventually by friends who gave me a grace period so the girls didn’t see my sadness. I borrowed a bit of A’s gutsiness to get me through the bedtime routine, but already we are paying the price for the fun and an extra dose of painkillers has been needed. What would I do next time? Probably the same because I think watching your child in emotional pain is perhaps harder than the physical”.
You can read more at Another Piece of the Jigsaw.