Today I started the daunting task of filling in the dreaded DLA form. It’s something I never anticipated doing for one of the boys. When it first arrived in the post this morning, I shoved it to it one side and ignored it for an hour. I forced myself to read through it and I even I was shocked at the questions.
The thing is, I wasn’t shocked at the type of questions, or the details that it goes into. I was shocked at just how much Hugo can’t actually do. As a parent, you never question how much you do for your own children. It comes naturally and you just get on with it. It isn’t until you have to actually sit down and describe your child that you realise just how much help they need.
Aside from sight and hearing, I had to tick the ‘struggles with’ box for every question. We are talking over 100 questions here to do with mobility and care needs, day and night. And we are talking specifics, it requests exactly how many steps he can take before falling over, and how many times a day he falls over. Some of the questions were difficult to explain because he doesn’t just fall over a couple of times a day, it’s constant. How are you expected to put that into a number? That was just the beginning, I literally had to document Hugo’s daily struggles from the minute he wakes up to the minute he goes to sleep. Oh, and there there is the overnight section!
The brutal reality of Hugo’s condition hit home. I wish I could say I was exaggerating some of the answers to these invasive questions, but every word was true. It finally started to sink in just how difficult life is, and will be, for Hugo.
Today we were also hit with another blow. The referendum result is not a positive one for Duchenne families. The majority of new research and upcoming treatments are based in Europe, or funded by the EU. We are now faced with the worry that current clinical trials could be stopped, or future clinical trials won’t be funded. The hope for finding a cure for Hugo in the future is looking very bleak.
Since diagnosis day, every time I’ve looked at Hugo I’ve had a heavy heart filled with sadness. Today I found myself looking at him with pride, love and happiness. The feeling of sorrow appears to have left me and I am back to enjoying the simple things he does that make me smile everyday. I’m hoping this is a sign of my acceptance towards his diagnosis…