Hugo picked up his splints today. It’s been an emotional evening. On top of his medicine regime, and his stretches, I now have to strap him up into his night splints before bed. Hugo has been a superstar as ever, but laying him down in bed and putting his legs into horrible plastic boots broke my heart. It bought back the reality of Duchenne again.
Hugo of course wanted to check out his new ‘puppy bed boots’ and took a stroll up and down the landing. He wasn’t in the slightest bit bothered, and was just in awe of the cute little puppy design that he had chosen. I’m so thankful that he takes everything in his stride and just gets on with it. His attitude is truly inspirational and I am learning so much from him. However, it is so difficult for me watching him go through all of this. He should be going to bed carefree like his brothers.
When I was putting Hugo’s splints on, Riley came in to see what was happening. He asked why Hugo has to wear boots to bed but him and Jasper don’t. I told him they were to help Hugo’s poorly leg muscles. Riley responded with ‘oh, so now Hugo will be able to run as fast as me and Jasper’. The pure innocence of a 6 year old is just magical. If we all took a step back and viewed the world through a child’s eyes, it would be a stressfree, peaceful, beautiful world. In Rileys eyes, medicine will make Hugo better and splints will make him run fast. The simplicity of a child’s mind is a wonderful thing.
I wish at 31 years old that I could see the world as Riley does. It’s probably why Hugo isn’t phased by anything, children are just naturally positive. They haven’t experienced a world where things go wrong, everything is just simply magical. I think I may have to start viewing the world in this way too and then maybe this Duchenne journey might be easier.