My emotions have took me by surprise today. I thought I was making progress with accepting everything but I am finding new triggers each day. I think it’s been building up since Sunday afternoon. I burst into tears on the phone to the doctors surgery this afternoon because they wouldn’t give me an appointment! It surprised me just as much as it did the receptionist!
I took Riley to a birthday party yesterday afternoon. I had absolutely no idea that his friend had a disabled brother. Whilst it was a completely different condition, the mobility side of things were very similar. It really threw me back, knowing that Hugo would be exactly the same in less than 5 years. I think it only upset me so much because it was genuinely unexpected.
I’m no stranger to disabled children. I have worked with disabled children in my job at social services, the hospital and even now at school. However, it is now personal to me. No matter how comfortable a person is with disabilities, when it becomes your own child things really do change.
The thing with Duchenne is that it is a very nasty deterioration process. A disabled child is a disabled child, and I know eventually I will understand that it is heartbreaking for the parents no matter what the condition is. However right now, part of me thinks that a progressive condition is worse. Yes ok so we are lucky in one respect that Hugo still has a few years of walking around and being a relatively ‘normal’ child, but it’s going to be incredibly hard for him to suddenly not be able to do that anymore. What 10 year old can suddenly just accept that they can no longer walk around with their friends, or play in the park, or go whooshing down the slide into his paddling pool in the garden with his brothers? I got frustrated at the fact that I could no longer paint my own toenails at 35 weeks pregnant, so how on earth does a child adjust to suddenly not being able to do the things that they have loved for so long?
I feel truly awful for feeling that way. Some children never get the opportunity to walk and run like Hugo has. But they grow up not knowing any different. That doesn’t make it any better of course, but I find it so distressing that one day Hugo will wake up and won’t physically be able to walk into my bedroom, climb into my bed and wake me up for a morning cuddle.
I’ve also recieved a press release this evening from a PR company who are working to promote Hugo’s gofundme campaign. It will be distributed to regional and national newspapers to potentially run a story. They’ve done a fantastic job but it was so difficult to read without the tears flowing.
If one good thing has come out of the last few days, it’s that I’ve finally realised that I need to be more patient with my feelings and just go with the flow. It’s only been 3 weeks yet I’ve been expecting myself to be coping and dealing with it better than this. I really do need to be a bit easier on myself. This is going to take time, and this emotional rollercoaster I am on has miles more track yet…