Today was the day. Hugo received an official diagnosis of Duchenne Muscular Dystrophy. After my breakdown last night at the fact the DNA results were back, I actually felt quite calm about today. My mum came with us to this appointment and I think it hit her harder than it did me.
The one thing I was dreading about this appointment was the fact that I could potentially be a carrier. After everything I’ve been through over these last few weeks, I really didn’t need the worry that the other boys could be affected, or the feeling of guilt that it could all be my fault. It turns out I have a 60% chance of being a carrier. I now have to go to Nottingham for in depth genetic testing to determine if Riley and Jasper need testing. It wasn’t what I wanted to hear.
I feel like this nightmare is far from over. Whilst neither Riley or Jasper show any signs at all, I am still concerned that they could also have Duchenne. It’s the same scenario as it was for Hugo, I already know the answer to this yet I can’t help but question it.
Today has been the first day in a while that I’ve not had many tears. The acceptance is starting to become prominent and I am hoping it is beginning to sink in. I saw my closest friend this evening (with another one of those well needed hugs and some beautiful flowers – my house is rapidly turning into a florists!) and I found myself discussing everything without turning into an absolute mess. It was nice to be able to have a completely open and honest chat about it all, and I actually uncovered feelings that I’ve been struggling to understand for days.
Hugo’s diagnosis will change our family dynamics forever, but we still have to provide our boys with a ‘normal’ childhood. We will embark on a new kind of normal from tomorrow. The one thing I have found myself wondering about today is this: is the unknown worse than knowing, or is knowing worse than the unknown? I genuinely can’t get my head around it.