The day is here… Hugo starts full time school tomorrow. He’s been going to Nursery since he was 18 months old so tomorrow shouldn’t be an emotional day for me. He’s even been at the school for the last 12 months. I’ve been so excited about him starting, he goes to the best school in the universe and everyone there adores him. But, the reality of Duchenne has yet again hit me this evening.
Hugo is starting reception. He is growing up. Soon enough he will be in year 1, before I know it he will be graduating from year 6, and then it will soon be time to make the transition to secondary school. Time goes so quickly. Instead of looking forward to these milestones, they are now filling me with dread. An overwhelming panic that when he hits these milestones, he will be deteriorating physically. He isnt going to develop in the same way as other children. I desperately want to look forward to Hugo growing up and making his way through life, but I can no longer do that.
Why? Because Hugo, right now, is in his best possible physical condition. I want to keep him at 4 years old forever. I want to keep him exactly as he is, with the ability to walk, the ability to not know any different, the ability to play and be happy. He has a permanent grin on his face, because he knows absolutely nothing about the cruel condition he has that will take everything away from him. His deterioration process has already begun and there is nothing we can do to stop it.
I know that Hugo will still get through life with the same determination and resilience that he already has. School will be a challenge for him but both Danny and I will always encourage him to do what he wants to do. School will guide him into reaching his potential. He has a fantastic future ahead of him surrounded by people that will never let his condition stand in his way. But no matter how hard people try to fight Duchenne, it will ultimately win. I literally don’t want him to grow up. He is the most perfect little boy right now, I don’t ever want that to change.
So whilst I know he is going to absolutely love school, all I really want to do is hold him and stay in that moment forever. I feel that every day that goes by, is a day closer to having to let him go. I’m sure these feelings will pass once we are all back into the busy routine of school life but for now I just wish Hugo could stay exactly how he is… and I wish Duchenne would crawl back into the hell hole that it came from.