As I’m sat here with a glass of wine in my hand, I’m looking at the latest school photo of the boys. It’s truly beautiful, we are blessed with 3 gorgeous boys. Today has been another nail biting waiting game. We were back at the hospital, this time with Riley and Jasper.
I really cannot speak highly enough of our consultant. He is caring, talkative and never ever rushes us. In fact, he gives up his lunch break to give us extra long appointments. The support he has given us has been amazing. He spent time getting to know the boys, watching them play, and assessing them for Duchenne without them even realising. He wasn’t concerned, they weren’t displaying any obvious symptoms at all. We’ve always known that, but the last two weeks it’s been hanging over our heads like a storm cloud. The fact that we could have 2, or even all 3 of our boys, diagnosed with Duchenne was unthinkable. Together with the consultant, we decided to put the boys through a blood test to make sure they definitely don’t have Duchenne.
They were little superstars. Riley knew he was going to have a blood test to see if he had poorly muscles like Hugo. We had a chat on the way to school this morning and he said he would be brave as the doctor just wants to see if his muscles work or if they are fake like Hugo’s! The way kids interpret things is just brilliant. On the way in the car he said ‘I already know my legs are not poorly but I will let the doctor check’.
Their blood tests were sent off at 2pm. The consultant said he would contact us in the evening with the results. It was another very long, very emotional 3 hours. At 5pm, we got a text to say Rileys result was fine but Jaspers was taking a bit longer. We were relieved to hear about Riley but my stomach was turning. Why was Jaspers taking longer? The panic set in and we were literally pacing up and down. We convinced ourselves at that moment that Jasper had it too. I literally spent 45 minutes adamant that this situation was about to get a whole lot worse. I genuinely didn’t know how I was going to cope.
I said to Danny ‘if my phone rings, we are in trouble, if Jaspers is ok, he will just text the result like he did Rileys’. I was desperately wishing my phone not to ring. Then, it started ringing. My world turned upside down right then. Danny and I looked at each other before we even looked at the phone and we exchanged the most horrified glances of pure fear. I was trembling as I reached for my phone. I practically collapsed to the floor when I saw that it was only my mum calling!!!! I didn’t know the human body could go through so many emotions in less than 5 seconds.
A short while after, we recieved a text to confirm that Jasper was also fine. Neither of them tested positive for Duchenne. It was such a relief. For a few minutes, I was over the moon with happiness. Things could easily have been drastically different.
I felt very lucky that the other two boys weren’t affected, but it doesn’t take away the fact that poor Hugo is. However, Duchenne may cut his life short but it will never take away our love for Hugo. He is the most beautiful, happy, loving little sweetheart. He doesn’t deserve it but it makes him the loveable little character that he is. We can now focus on giving Hugo all the support he needs and give him the best life he could wish for. We are blessed with a beautiful family, and I wouldn’t change it for the world. Duchenne may have changed things but it won’t change us. I certainly won’t sit back and let it take over our lives. It’s just a little hurdle which together, we can jump over…