Over the last 24 hours my mind has been tossing and turning with all sorts of thoughts. Saturday was the first day in a long time that felt ‘normal’. We got up late, took our time having breakfast and didn’t manage to get dressed until just before lunch. Then we went for a trip to the park and had a takeaway for tea. A typical family Saturday. It was the first time that I’d almost ‘forgotten’ about this horrendous situation we are in.
It wasn’t until just before we went to bed that I had an awful feeling of guilt. Will we ever be able to enjoy ‘normal’ life again? I felt terrible that I hadn’t cried for the first time in 3 weeks, almost like that should now be my ‘normal life’, not happy carefree days at the park. It’s a horrible thought to deal with, I want us to have so many family memories to cherish but at the same time I can’t just forget about Hugo’s condition.
I felt like a bad parent for not feeling that constant sadness, but also a bad parent for not enjoying a lovely family day. It’s literally a no win situation. All the feelings I have right now feel wrong. When I have that feeling of despair, I mentally tell myself to stop it, because no amount of sorrow will make this disappear. Yet when I have that warm fuzzy feeling of happy family life, I have to remind myself that life is not ok right now, nor will it ever be.
I don’t know when it will be the right time to move on from the diagnosis, put it to the back of our minds and just get on with life the best we can. Is there such a thing as the right time? I have no idea. All I know is that Duchenne is progressive. They say time is a healer, but how can that be true when time is the exact thing that will make this worse? I’ve not quite figured out how to deal with that thought yet…