Busy busy busy!

The last few weeks have flown by! Feel like I haven’t posted in ages, 12 days actually, so just going to make this a quick one. I’ve been too busy to properly think about Duchenne lately, it’s definitely becoming a normal part of our lives now. I suppose this is a good thing. 

Half term was filled with the fun (and stress!) of a trip to Legoland! The boys absolutely loved it, the hotel was magical and the food was amazing (where else can you eat lego chips and ice cream for breakfast)!! However, a busy theme park came with its downside for a child like Hugo. The queues were horrendous, I’m talking an hour or more for a 2 minute child’s ride. Hugo couldn’t handle standing in a queue for that long due to his Duchenne, and he couldn’t handle the amount of people surrounding him due to his autism! He had many breakdowns but he powered through and made the most of his little trip, after we sorted out a disabled access pass to skip the queues. 

If it was up to me, of course I’d rather spend an hour in a queue with 3 bored (but healthy) children. Having to ask for a disabled access pass and explaining Hugo’s condition made everything real again. Some days, we just sail through this Duchenne journey without even thinking about it. Other days, it’s like a reality check. Suddenly, bang, there is Duchenne, popping back up to remind us that it’s here to stay and will affect our lives forever. 

I’m absolutely exhausted this evening and if I don’t cut this post short, I’m going to end up waffling and opening up a can of worms in my head. As usual, I’ve got a million thoughts in my head but I’m just too tired to make any sense of my feelings right now. I’m not ‘ignoring’ my emotions,but you could say I am ‘avoiding’ them at the moment. 

I came across this poem this evening, it sums up my little Hugo perfectly 💛

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