Inspiration and Realisation.

If you follow our social media, you will have seen that T absolutely SMASHED his ’28 Miles in 28 Days’ challenge. He wobbled, walked and wheeled a mile every single day in February. He was out in every possible type of weather imaginable – wind (practically a hurricane one day), rain (biblical), sunshine (that one was nice), even snow and ice!! (that one was not easy to navigate I can assure you!)

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On the final day, he even managed to walk more than a mile – and didn’t use his wheelchair once! We are literally bursting with pride. To date, he has raised over £7600 for Ataxia UK. Simply incredible.

He received so much support during his challenge. Friends and family cheering him along (he actually amassed a (socially distanced) ‘Forrest Gump’ style posse on the final day), his school sharing his journey – including his ‘Head of Year’ coming to complete one of his miles with him (very kind); and he even made it into the local press! He received newspaper coverage, completed radio interviews, and even had a segment on Look North! He conducted himself with such maturity and confidence. None of us expected this level of interest in the challenge, but it was very well deserved. He pushed through the tough days and really committed himself to every single walk. He is so grateful to everyone who has supported him.

The icing on the cake, is that someone – and we don’t know who – nominated T for a ‘Heart of East Yorkshire Award’, under the category of ‘inspiring Youngster of the Year’. He was shortlisted and then this week… HE WON!!! It was a very emotional night in the Riley household. Due to bloody Covid, they couldn’t hold the usual glitzy awards ceremony, however there was a lovely online event hosted by Kirsten O’Brien (off of CBBC in the 90’s) … which was a random choice… but she was very nice!

There were 2 young girls shortlisted in T’s category who were both incredible, and they were all worthy winners, so T was completely speechless when they announced that he had won!

Thank you, thank you, THANK YOU to whoever nominated T. You have absolutely made his year. He inspires us every day, but it’s so lovely to know he inspires other people too.

In other good news, we have had a few developments of late for Mr T in terms of equipment and support. You may remember from a previous post, that we have been having a bit of a battle with Wheelchair Services (WCS) over the funding for a lighter framed wheelchair for T, in order to preserve his energy levels and allow him to remain as independent as possible. WCS would only part fund this, and instead wanted to provide a much heavier chair which T found difficult to propel; and subsequently left him reliant on others and ultimately much more tired. Well. Since my last update, a very nice lady from WCS took on board the advice from T’s ace Occupational Therapist and decided to try and help us. She has managed to secure funding through the Education board, with T being used as a pilot case. If it is deemed to be successful, this could have a positive impact on more young people who would be considered for similar funding. Fingers crossed it all works out as planned!

T has also just re-started his Art Therapy again. He absolutely loves meeting with his therapist James, and it allows him some time to offload his thoughts and process his concerns. Both J and I appreciate that, although we have a great relationship with T, sometimes there will be things he doesn’t feel comfortable discussing with us, and we feel it is so important that he has an outlet to do so. Of late, he has been having more and more conversations with us about the future, and the changing shape of his ambitions. He is now very aware that his condition will not improve, and that as a result, those childhood dreams he held close are now no longer within reach. This is what his next block of therapy sessions will be centred around, and we are very grateful that T has such a positive and safe environment to process these thoughts.

There has been quite a sharp decline in T’s mobility of late, which is surprising following the improvement during the first part of the year. His Physio and I had quite a long discussion on Friday as she had been into see him at school. T’s TA had told her that she was quite concerned that T is no longer using his ‘walker’ in and around school, instead he is exclusively using his wheelchair. As a result, his walking has now deteriorated quite significantly, something we have also noticed at home. When we asked him about it, his response was:

“It’s easier in my chair.”

It’s quite hard to motivate T. He’s certainly not naughty or rebellious by any stretch of the imagination, however, when the computer games are calling, and his friends are all online, the last thing he wants to do is go for a walk around the block. At school there are so many things he cannot do comparatively with them, so his little online world offers the level playing field he physically cannot access. That being said, I chuffing hate it. Fortnite is the work of the devil. They shout at each other constantly, and watch random people on YouTube playing it… I don’t get it. Give me a 3210 and a game of ‘Snake’ any day.

We can’t work out at the moment if his reluctance to walk is due to embarrassment of the ‘Walker’ (he’s never liked it), just being a normal 12 year old boy who wants to fly under the radar at school, or, if he just simply cannot do it anymore. If walking is just ‘too much’. Yesterday, the realisation that that final point could be the truth hit me like a ton of bricks. I’m not ready for that. Having said that, I feel like all I do at the moment is nag at T. Nag about completing his physio, nag about walking at school, nag about taking ownership of his independence. What if, he just can’t do it anymore. Maybe it’s not T who isn’t ready for the next step; it’s me. I’ve shed a lot of tears this weekend. I suppose I thought if I kept motivating and pushing it would just keep him going. As J pointed out, we always knew it was on the horizon. He’s right, (not a phrase I say often) – we did, but I feel like accepting that is going against every instinct in my body as T’s Mum.

So, for now, I’m gonna back off with the nagging. We’re going to try and get him out of the house a bit more and ‘encourage’ little bits of walking. We’re going to smile and have fun. We’re going to talk to Emma the Physio and Sally the OT to see what they think. And, I’m going to get my head around the fact that the horizon might be closer than we thought.

So, that’s where we are at the moment. The highs, and the lows.

As a parting thought, I will share some inspirational words from the youngest member of our family – ‘Squidge’ (20 months old), which he recently bellowed across a car park:

“GET ON THE WHORE!”

‘Squidge’ Riley, 2020

(“Get on the horse”)

Take care,

The Rileys

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