Never ending

Just lately, I’ve felt so bogged down by appointments. It seems that with every appointment we attend, we discover more problems which generates more appointments. I desperately want it to slow down but I can’t ever see a way. It’s exhausting, but he continues to get on with it without a second thought. I however just feel like it is literally never ending, I just want to wake up one day without having to even think about Duchenne, but it’s there like a brick wall at the end of my bed every morning. 

Hugo had his wheelchair assessment at the weekend. We’ve said all along that we don’t want him to have a ‘wheelchair’ yet, it’s too soon and I don’t want to accept that reality. However, he struggles, days out are incredibly difficult and he can no longer manage the walk to school. He is too big for pushchairs so we have to do what’s right for Hugo, whether we like it or not. We decided on a specialist pushchair for the time being. It’s got the same support as a wheelchair, but it doesn’t have the ‘look’ of a wheelchair. Hugo was very happy with his new wheels, we just need to wait for it to be made and it should be good to go before Christmas. If it helps him, then that’s all that matters.

Talking of Christmas, it’s quite a daunting thing for me right now. I’m facing the realisation that one day, Hugo won’t be with us on Christmas Day. This will be our first Christmas with Duchenne in our lives. As much as I want to make every Christmas memorable and special, this particular year will be so difficult as we still haven’t fully come to terms with Hugo’s diagnosis. I just know that I will have that thought hanging over me throughot the entire festive period, and no matter how much I try to not think about it, the reality is that Hugo won’t be with us on Christmas Day in 20 years time. There will be an empty chair at the table for Christmas dinner in years to come.

Hugo had his physiotherapist visit him at school today. He needs a postural chair to give him some support when he is doing activities that require sitting down. At the moment, he struggles to concentrate as he needs to use all his energy to simply sit, which is making him too tired to do what he needs to do. It’s another obstacle to try and overcome, I don’t want him to feel different to the other children but at the same time he needs that support. The disabling effects of Duchenne are happening much quicker than I expected. He also needs a sleep system for bedtime to keep his hips and legs aligned due to his curved spine. 

On one hand, I’m looking forward to starting 2017 with a clean slate, but on the other hand I don’t want time to slip by any quicker than it already is. I want to rewind to May 2016 and pause our life right there, when Hugo was still just a normal little boy without this hideous condition.

Here is Hugo, modelling his new wheels last Saturday. I wish these things would prolong his walking ability, and ultimately his life, but at the moment it just feels like we are one step closer to him losing his independence and mobility. Duchenne is really testing me at the moment, I desperately wish I still didn’t have a clue what Duchenne Muscular Dystrophy is. 

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