When Charlyse was born, James was only 12 months old.
Naturally, we thought James would grow up to be very protective of Charlyse, being the boy and the elder of the two. I mean, that’s what most people would think, right? And for the first few years that’s exactly how it was. James was such a good big brother. He shared without being told to, he let Charlyse take turns, he let his baby sister do whatever she wanted. James had a friend for life, and I think that’s all he ever wanted. He used to look at all the other little kids running around, unable to keep up with them, and he always looked so sad when they’d not include him in their play.
Obviously, we had no idea back then about his Duchenne. We just thought he wasn’t very co-ordinated and all that was needed was a bit of time and effort by us to help him practice.
And then Charlyse was born and he had his own best friend. He was besotted, and adored her from the moment he saw her. He wanted to hug her, touch her, tickle her, and play with her. Now he wasn’t lonely.
It wasn’t until Charlyse started running rings around him, and the fact she never used to fall whereas he fell ALL THE TIME, that the penny dropped something might not be right. And then BAM! Our world turned upside down.
I remember Julian and I lying in our bed, crying our eyes out, wondering what was going to happen with our little man. We knew it was genetic, but we didn’t realise it was a sex-linked disease. We also didn’t know at that stage if I was a carrier or not. I won’t go into details, but let me just say that we had some dark thoughts in those early days. Very dark thoughts. And then we found out that I wasn’t a carrier and that the disease affected mainly males. And those really dark thoughts were banished as we knew we had to make our life together extraordinary for James, and Charlyse.
Life didn’t resume as it was before the diagnosis, but rather it shifted course and we found ourselves in a new world. This new world was foreign to us, full of specialists and nurses and hospital appointments, and endless hours of research on the internet. It was daunting, and as the years go by it becomes even more daunting.
And whilst our lives have dramatically changed course for all of us, a wonderful friendship has developed between James and Charlyse. Always the protector, James now often finds the tables have turned and Charlyse protects him. She is fiercely loyal and hates bullying. If anyone makes him sad or upsets him with remarks, Charlyse gives them “what for”. She always comes to his defence. As much as I think James is incredibly brave, I think Charlyse is as well. She doesn’t care what other kids think – her brother means the world to her and she will always be there for him. That’s what friends are for.
Their bond is strong, their bond is unbreakable. Their bond is so beautiful. They are best mates, and I hope they stay that way forever, because James is certainly going to need a best friend in the coming years, and Charlyse will never let her brother down. Ever.