Wow! I think this is the longest I’ve ever gone between blog posts. Time just seems to be slipping by so quickly. A lot has happened since my last post, I was going to write seperate posts for a few things that have happened but I have left things too long so I’m just going to make this a big one instead!
Hugo recovered so well from his operation. He really does amaze me with his durability and stamina. He returned to school with a big smile on his face as if nothing ever happened. While he was off, he had his wheelchair delivered. When we chose his chair back in October, we went for a specialist pushchair instead as we wanted to avoid the ‘wheel chair’ look for the time being. However, due to his spine showing signs of curving already, it was changed to a different model which offers spinal support. Obviously we want the best option for Hugo so we had to go along with this. When it was delivered, my heart sank a little bit as it is very ‘wheelchair’ looking. I guess it’s another thing that brings back the realisation that actually, our child is disabled. I’m sure I will eventually get used to these things but it still breaks my heart every single time. A wheelchair is just the start of the equipment he will eventually need. He has however only used it once in the time that he has had it as the steroids are doing their job and Hugo suddenly has a new found strength when it comes to walking.
These new pieces of equipment always bring out a wave of curiosity from Riley and Jasper. They are always kept up to date with everything that happens with Hugo, in a child friendly manner that they can understand. But, there is only so much they can understand. Jasper doesn’t really think too much to anything as he really is too young to grasp any of it, however Riley does. I say he does, he knows his brother has Duchenne, he knows that he will need lots of help for the rest of his life. He doesn’t understand the full implications of the condition, nor does he understand the seriousness of it all. We returned home from school one evening and as I was hanging bags up in the hall, I turned around to find Riley sat in Hugo’s wheelchair saying ‘I’ve got Duchenne now’. I don’t think I’ve ever had so many different emotions hit me in such a short space of time. In literally 10 seconds, I was hit by guilt, anger, heartbreak, disappointment, sadness, sorrow and every other emotion inbetween. How are you supposed to deal with that? Obviously I didn’t shout at Riley or tell him off but I could easily have done so. Instead I calmly told him to get out, and reminded him that the wheelchair is for Hugo only. I spent a few minutes thinking about how best to handle the situation. I had a chat with Riley and told him that he is very lucky to have strong legs but Hugo’s legs will never grow strong which is why he needs a special chair. He didn’t understand what he was saying, he didn’t say it to be mean towards Hugo, he is just a child who associates Hugo’s chair with Duchenne. As heartbreaking as it was for me, I couldn’t be mad with him, at all. It just proved that he needs our support throughout this as it affects him just as much as it does us.
I’ve been feeling fairly strong about things for a while now. I think I’m certainly over the worst and the old rollercoaster ride has hit a steady path. Hugo is really starting to find his independence lately which is wonderful to see. Just the other night, when Danny went to pick him up to put him in the bath, he turned around and said ‘no daddy, don’t pick me up, I want to do it myself’. He then proceeded to struggle to climb into the bath but refused any help at all. My heart was breaking watching him struggle, but I respected his wish for independence and he eventually managed to get in by himself. It may have been an awkward stumble, but his determination carried him through.
Hugo had his second North Star assessment last week. This is an assessment of his mobility which is used in Duchenne to determine how able the child is. A ‘healthy’ child will score 34, the highest score possible. When Hugo initially had this assessment in July he only scored 23. After 8 months of steroid treatment, he scored 28! This is a huge improvement and has secured in our minds that the steroids are making a difference. The only downside to this is that of course it’s not forever. His score may increase a little bit more over the next few year or so, but then it will decline again until eventually, he will be scoring much lower than his initial 23.
I’ve recently been contacted by a local family who have just had their 3 year old son diagnosed. When I first spoke this boys mum, it bought back all the memories of diagnosis and those very dark months we went through last summer. However, I also remembered just how difficult it was to not have anyone to turn to who had already been through it. We had no one to tell us that things get better in time, no one to tell us that actually, you can and you will get through what feels like the end of your world. I’m so glad this family got in touch with me so I can give them a boost of positivity during the most terrifying days of their life. It doesn’t make it easier, but it does help.
Hugo continues to amaze us every day and I am incredibly proud of him. His fund continues to keep growing and we have so many plans to make his life amazing. It is the only thing that really keeps us going. We had the Hearts4Hugo charity ball last weekend which was a huge success, I will be doing a separate blog post about that soon. The boys are also doing the 1.5k mini run to raise funds for Hugo and also the Wish Upon A Star charity. Onwards and upwards! We can beat the misery that Duchenne tries to bring. It won’t ever go away, but it’s not in control anymore.