Seeing changes 

I’ve been dreading today for a long time. It was Hugo’s school trip to Rand Farm. Since before Hugo’s diagnosis of Duchenne, he’s needed extra support on school trips due to his poor mobility. The last trip he had was only a few weeks before his diagnosis, and it was a disaster. He was throwing himself on the floor, he was frustrated because he couldn’t keep up with his friends and I spent the majority of the day carrying him. At the time, he had only been diagnosed with hypermobility. 

So naturally today, I was concerned. I expected a day of tantrums and falls. When asked this morning if I was looking forward to the trip, my answer quite simply was no. Of course I was looking forward to spending the day with Hugo, but deep down I was feeling very apprehensive. However, something came over me just before we boarded the coach and I made the risky decision of leaving his stroller behind. I knew that if it was there, Hugo would want it, not necessarily need it. I came to the conclusion that there would be plenty of stops and we could take a break to sit down whenever he needed. 

However, I saw a completely different Hugo today. He had the best day. He was happy, he was excited, he was exactly the same as the other 59 children. Less than 6 months ago, Hugo could barely walk for 5 minutes at a time. He couldn’t get further than 100 metres without falling. Soft play used to be physically impossible for Hugo, he literally could not do it. The boy I saw today was determined, resilient and ‘normal’. For the first time ever, he didn’t stand out. He just blended in with every single one of his friends. Duchenne was barely visible today. Don’t get me wrong, he is still slower than other children and he still requires the additional support (not only for Duchenne, but for his autism), but I was incredibly proud of him today. 

The true success of the day didn’t dawn on me until we went to the soft play centre towards the end of the day. My heart sank a little bit when I was told we were heading that way, because it was towards the end of the day and he was getting tired from all the walking. But, Hugo was straight in, with a big beaming smile. He was that quick, I couldn’t keep up with him. I let go of the reins today and let him go for it instead of following him around to help him up. He was having fun with his friends and I didn’t want him to feel different. And I am so glad I gave him that freedom. He kept up with his friends, he climbed to the top, he tackled a climbing wall and actually made it! I had tears in my eyes watching him, I just couldn’t believe what I was seeing. 

Today for the first time, I saw the effect that steroids are having on him. He has become stronger, quicker and physically able to do the things that a little boy of his age should be doing. He has been given the opportunity to be a child. Today, he beat Duchenne. He didn’t just beat Duchenne, he well and truly kicked it out the building. I have never been prouder. Today, my beautiful boy was no different to any other child. 


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