I feel that my posts have become less frequent over the last few weeks, which is surprising because so much is happening on a daily basis at the moment. Hugo has appointments all over the place and each one comes with a new complication. We found out on Friday that he now needs his tonsils removing, but has to go to Sheffield as he will require time on ICU after the procedure. Although it’s a routine operation, it comes with additional risks for Duchenne boys. It’s just yet another worry to add to ever-increasing list. My poor baby is having to go through so much already. I have to keep reminding myself that it’s us struggling with it all, Hugo isn’t the slightest bit bothered by any of it. He really is my hero.
It was my birthday yesterday, and I have to be honest, I didn’t feel great. I spent the whole day thinking that one day, I won’t receive a birthday card from Hugo and he won’t be there to celebrate with the rest of us. Then I was consumed with guilt for being so selfish. But then it got me thinking about everyone else’s birthdays, and Hugo’s birthdays, and the fact that one day in the future, there will be someone missing from all of our family celebrations. I felt like I was being kicked to the ground by Duchenne again. I hate days like that, where it’s just a huge chain of thoughts, one linking to another and causing my mind to completely baffle itself. It’s things like this that I find the hardest to deal with, mainly because I know I’m overthinking things and being completely ridiculous, but Duchenne really does change everything. Literally, no matter where I go or what I do, Duchenne is there.
Ever since diagnosis day, I’m forever hearing people say that we are ‘coping’ brilliantly and getting through this really well. It is nice to hear but at the same time I just want to shout out that actually, I am not coping at all. Does there come a point where people ‘cope’ with situations, or do we just adapt and do what we have to do? I am a mother and I will do whatever it takes to care for my boys, no matter what. And whilst I may appear to be ‘coping’ well, the reality is that I’m just doing what any mother in my situation would do, getting on because we don’t have a choice. Many friends have commented that I am ‘inspirational’ but I’m genuinely not. Or at least, I don’t feel it. Before Hugo’s diagnosis, I used to look at other parents in my situation and think they were inspirational. But in actual fact, we are just doing what we have to do; fighting every hurdle, every obstacle, every dark day, every painful moment and every possible thing thrown at us, fighting until we can’t fight anymore. And even then I don’t think I will give up. I will do whatever it takes to keep that beautiful smile on Hugo’s face. Maybe that is inspirational, I don’t know? I’m just doing what comes naturally to any parent.
However, we’ve enjoyed some quality family time this weekend. Danny and I were treated to an amazing meal by our very special friends, James and Vicki, for my birthday. I almost went down the path of feeling guilty again for having a good time, but a few birthday cocktails helped me overcome that. Hugo went to see his favourite paw patrol characters with Granny and Grandad, while Danny and I took Riley and Jasper Pokemon chasing (it’s actually quite addictive)!
Im now looking forward to Monday, the start of a fresh week with a fresh mind. And no hospital appointments for a whole two weeks 😊😊😊