I’ve spent lots of time looking into the future this week. And it’s been emotional. The last week of term has been filled with many happy times but yet again, it forced me to take a ride on the emotional rollercoaster.
The year 6s had so many celebrations at school for their last week. Although I don’t know the year group particularly well, they are all such amazing, inspirational and mature children who have been given the best head start for secondary education. The bond they have with their teachers is beautiful to see, and the whole school is filled with respect for them. It’s been an absolute pleasure to be part of their last days at primary school. And what an amazing farewell they recieved!
The graduation assembly was emotional for everyone, but for me it came with the added emotions of being a parent with a Duchenne child. It wasn’t until the end of the assembly when all the staff had to shake each of their hands that it really hit me. It suddenly dawned on me that when Hugo has his year 6 graduation, he will be in a wheelchair. And I know he will be given the exact same opportunities as every other child, but it’s still heartbreaking knowing that it will be YOUR child unable to walk with all the other children. It’s so sad knowing that the confinement of a wheelchair is his future. Once again, the tears were rolling and I had to take a few minutes to compose myself.
However, I was given a boost by several members of staff reminding me that even though Hugo will be in a wheelchair, he WILL still do the same things as every single child, and he will do it with the determination that comes so naturally to him. And he will always have that cheeky Hugo smile no matter what life throws at him. I wish I had just an ounce of his determination.
Today bought another bombshell. Hugo’s DLA application was refused for the mobility component due to the fact that he ‘chooses not to walk when in fact he has the physical ability to do so’ and he doesn’t have ‘limited mobility’. I was absolutely raging when I discovered this information on the phone to DLA. What made it worse is the advisor laughing down the phone when I asked how to appeal this decision. I bluntly explained that my son will die in his early twenties, if he’s lucky, and he should have the decency to handle my call sensitively. The advisor then informed me that he wasn’t laughing about that, he was laughing at the fact I wanted to appeal the decision when I haven’t recieved the decision letter in the post yet. Absolutely atrocious behaviour. I then clearly stated that I would rather not have the extra £50 a week if it meant my son would not have a cruel life limiting condition. Does he think I actually ‘want’ to be on the phone questioning whether my son should be entitled to disability benefits due to the fact he can barely walk? I mean, these unqualified ‘advisors’ are not making decisions based on the speed of your broadband or the best deal for your latest iPhone 6. They are making decisions based on the quality of your child’s life. The attitude they have to this is absolutely disgusting.
Filling in that form was the worst 2 hours of my life. Hugo’s condition became very real and it wasn’t until then that it became apparent just how much care Hugo requires. And it’s only going to get worse. Nothing has deflated me as much as some unqualified person telling me that my son ‘chooses not to walk’ and that his mobility is a behavioural issue. Are you kidding me? A behavioural issue? He has no muscle strength at all, he physically cannot do the things that any other child his age can. What 4 year old doesn’t want to run, jump, climb and play with his friends? Hugo doesn’t ‘choose’ not do these things, his body physically doesn’t allow him to do so. And how they can say that he doesn’t have ‘limited mobility’ is beyond me. He cannot do half the things that his 2 year old brother can do, let alone what any other normal child his age can do. His mobility is severely limited. The DLA system for children is complete, for want of a better word, shit. There are children out there with Duchenne who get high rate mobility, yet others get refused, forcing those parents through even more heartbreak of having to go through a lengthy appeals process.
Days like this make me literally want to give up. I just can’t face the sheer exhaustion of having to re-do his application in even more detail. But then I remember why I am doing this. Hugo is fighting his condition on a daily basis with a huge smile on his face. If he can do that, then I will fight the shitty DLA system until he gets what he deserves. And I won’t give up until he gets it…
“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.” (Lance Armstrong)