We’ve been so busy over the last few weeks that it was nice to spend this weekend doing absolutely nothing. We chilled, we played, we went for a walk, we watched movies, had a Sunday lunch and ate loads of treats. I love weekends like this with my boys.
The weekend didn’t start brilliantly. Riley came home from school early on Thursday as he felt poorly. I’m not going to deny him that, he did have a cold. But I got to spend a couple of hours at home alone with him before his brothers came home. We had a rather big chat and it turned out he’d had a bit of a struggle with some maths work that day. I knew this wasn’t the real reason for his emotional state. After digging a little deeper, it turned out he was worried about Hugo going to ‘hospital’ all the time and he wanted to know why. From a 5 year olds point of view, all Riley sees is Hugo being taken out of school frequently. Riley sees this as Hugo having more time alone with Mummy and Daddy. He then got into the subject of Heaven, where this came from I have no idea. He wanted to know what would happen if any of us go to Heaven. He didn’t specify Hugo in particular, but I have a feeling that is what he meant.
Over the weekend, Rileys inquisitive mind has been working overtime. Here are some of the questions he has asked us:
“Why was Hugo born with poorly muscles?”
“If Hugo’s muscles weren’t made properly in your tummy, was he born wrong?”
“Why wasn’t he fixed before he was born?”
“Why weren’t me and Jasper born with poorly muscles?”
“Why can’t medicine make Hugo’s muscles better?”
“Why haven’t they invented the medicine that can fix Hugo?”
“Why don’t we get Hugo a bike that he can pedal with his hands instead?”
I knew these kind of questions would come along sooner or later, and we’ve always agreed that we would answer them when they come up. I tried to explain that when Hugo was an egg, his egg didn’t get a special gene which makes muscles, and that we didn’t know this when he was a baby in my tummy so he couldn’t be fixed. I then told him that without that special gene, Hugo’s muscles are not strong. I told him that both him and Jasper could have been born the same but fortunately their egg managed to keep the special gene. I tried to explain that there isn’t a medicine to make Hugo’s muscles better yet but one day there might be. I even told him he could become a scientist one day and help to find that medicine!
It’s hard trying to simplify the facts of Duchenne for a 5 year old to understand without making him scared, but at the same time, he wants to know and he has the right to know. Riley is a very curious child and he is very intelligent, which makes it even more difficult because I know this is probably just the start of his questions! However, his last question did give me a brainwave and we are now looking at trikes for Hugo with hand pedals!
Here is the possible future Duchenne scientist, go find that cure Riley Hart!