Every so often, I find myself reflecting on a difficult day and thinking to myself ‘how the hell did I get through that’? Today has been one of those days…

It was an average Monday morning, rushing around to be at school/work for 8am, the boys engrossed in their toys/iPads then crying when it’s time to get dressed because they haven’t finished their breakfast (despite the fact that they get their breakfast at breakfast club within minutes after leaving the house)! Ever since he’s had his splints, Hugo has developed his own routine of taking them off before getting out of bed and putting them on top of his toybox. This morning was different. 

I found Hugo sat on the landing asking for me to take his ‘bedtime boots’ off. Of course I obliged, joining him on the floor for a morning cuddle first. As I was loosening the straps, he grabs me for another cuddle and says ‘sorry Mummy’. I looked at him laughing and said ‘why are you saying sorry Hugo, that was a lovely cuddle’. He then looks at me with his beautiful huge eyes and simply says ‘sorry about my legs mummy’. My heart literally shattered right there. My innocent baby was apologising to me for his legs. The legs that don’t work like everyone else’s, the legs that prevent him from doing the things that his 4 year old mind wants to do. Those legs are letting him down and frustrating him, which he is probably starting to notice more and more each day. I don’t like to cry in front of Hugo but I was really struggling to hold back the tears. 

I guess I will never know if he was fully aware of what he was saying, or whether he was just sorry for asking me to take his splints off, or if he was just talking rubbish like Hugo does. But the look in his eyes told me he meant what he said. I never ever want Hugo to be sorry for having Duchenne, ever. If anything, it’s me who should be sorry for passing this damn faulty gene onto him. I couldn’t shake this conversation off all day, there have been many moments today where I’ve wanted to fully breakdown in tears and just let it all out again. It’s funny how these things happen all at once, I finished last week feeling strong and confident that I was over the emotional breakdowns, but the last few days have seen the return of my place on that rollercoaster. 

But, I got through the day again, like I have many times before, and like I will many more times. It doesn’t get any easier, it just becomes a bigger part of every day life. It is a never ending battle…


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