Had a bit of a tough morning today. We’ve been to see T’s Paediatric Neurology Nurse to discuss his progress. It is clear to all who know T, that he has deteriorated a bit of late. He has become much more unsteady on his feet and we now have the ‘Mean Machine’ (a.k.a the wheelchair) to use when he is tired or when we will be doing prolonged periods of walking. This is one of the reasons we decided to start this blog. We have been fiercely private about everything up until this point, but its become clear that there is no hiding this any longer. Something which we are all struggling with a bit.
One thing which has never deteriorated however, is T’s amazingly sunny outlook on everything which has been thrown at him. That smile never leaves his face. In his own words “My ataxia doesn’t matter Mum, I’m just T!”
How right he is. He is just T. But today he became a little bit upset in the appointment. When we first saw Nikki (our amazing nurse) she discussed groups we could join which may help T, such as special sports teams and social groups. She looked a bit stumped when T asked her if there was a ‘Special Wrestling Club’… but she said she’d look into it.
In todays appointment she was telling him about a group she had found for children with disabilities to do different activities. Thomas started to get upset. So, I started to get upset too (I really need to work on my game face. I have it spot on 99% of the time, but its the days when you are blindsided that you need that extra mask). When we got back into the car I asked him what was wrong.
“All these doctors keep talking about ‘disability’ and ‘disability clubs’… but I’m not disabled. I want to be normal and do normal things.”
I told T that he is normal. That everyone is normal, but that sometimes he just struggles with certain things. We discussed Sports Days and football matches and how previously he has felt quite upset that he can’t always keep up. I talked about the doctors and how they just didn’t want him to feel upset any more and that in these special groups he might not always come last. But I also told him that he didn’t have to go anywhere or do anything he didn’t want to do. This is the most important thing to us. That this moves at a pace T is comfortable with. At the moment, he is not comfortable. So we are getting off the motorway, and parking up for a bit.
T wants to be professional footballer or wrestler when he is older. For the rest of the journey home he told me all about a one-legged wrestler who competes all over the world.
“If he can do it, I can do it Mum. I just want to follow my dreams.”
Well who can argue with that.
And so now, I’m researching wrestling clubs and thinking: why the hell shouldn’t you follow your dreams kid. We will support you 1000000%.
This boy, is incredible. Fact.
“Labels do not define the person or boundaries”
My very wise Mum, Lynn. August 2018