Whenever I think that I’ve turned a corner, and I feel in control of everything, something happens which completely sets me back. Don’t get me wrong, I’m not a wobbly crying mess anymore (in fact, Duchenne hasn’t resorted to me tears in a long time), but little things crop up once in a while which reminds me of the cruel reality of Hugo’s condition.
The boys wanted Christmas songs on yesterday, so I happily obliged. As Paul Mcartney, Wizzard and Shakin Stevens were blasting out, it dawned on me that I’ve been listening to these songs for as long as I can remember. Literally, for as long as I’ve been alive. The Christmas songs we all know and love have stood the test of time and I think they will for many more years to come. It was this realisation that led me to a different thought process.
It suddenly hit me that these songs will still be playing in another 30 years time. Except Hugo probably won’t be here then. Since we had the boys, I’ve always said that I can’t wait for Christmas in 30 years time when the boys come home for Christmas dinner, we all dance like loons to Christmas songs and play board games in our pjs in front of the tv. But now I’m faced with the reality that one of my sons will be missing in 30 years time.
Danny went out to buy a few new Christmas decorations earlier. Hugo was so excited and had a good rummage through the bags, his little face lighting up every time he found a new decoration. It was a beautiful moment, seeing how excited he was about Christmas. Then that ugly black Duchenne cloud appeared again as I realised that Hugo will probably never have the opportunity to see his own children have that excitement. Literally every happy moment in my life now comes with a hint of sadness.
I’m hoping in years to come that these feelings will disappear. I knew this Christmas would be tough with it being our first one since Hugo’s diagnosis, but I thought I’d be too busy with excitement to even think about Duchenne. As much as I desperately want to forget it and focus on having a Christmas filled with amazing family memories, I can’t help thinking about the future.
This condition at the moment feels like a life sentence. The fact that we know what’s to come in the future makes everything so much more difficult. I often forget that it hasn’t even been 6 months since Hugo was diagnosed. I feel we’ve come a very long way since those initial few weeks, but we’ve also got a very long way to go…