Today, I feel like I made a somewhat epic parenting fail. A few weeks ago I noticed (on the source of all knowledge – Facebook) that a new inflatable park was opening close by. Now T loves a bounce. He is a firm fan of a trampoline park, even if he can’t bounce for quite as long as everyone else. So, I booked us some tickets. Squishy slides, ball pools – no hard surfaces for T to fall onto…
T has been eagerly awaiting today to arrive and we rocked up (at our allocated time slot) full of excitement – like two human Tiggers. Within 5 minutes the only thought running through my mind was:
WHAT THE HELL WAS I THINKING?
I read a quote recently about movement with Ataxia from a wonderful blogger named Tallulah Rose Clark, which was:
“Imagine you’re walking down a hill wearing heelies, now imagine that hill is never ending. Now imagine that you’re drunk.”
Now imagine that, with no solid path and bouncy castles as a replacement.
T was bouncing off the walls like he’d had 10 tequilas. This wouldn’t have been so bad if it hadn’t been so busy. Every time he found his footing, a burly 15 year old would shoot past and send him flying again. I wasn’t much better. I was about as much use to him as a chocolate teapot. I was trying to keep myself upright and support T at the same time but kept falling down holes. To the innocent passer-by it probably looked like something from a Chuckle Brothers episode (RIP Barry). After 15 minutes, multiple falls and a rather fun slide, we took a break. T looked like he’d ran 3 marathons and then climbed Mount Kilimanjaro. I threw a get out clause at him (hot chocolate and a brownie), but to my surprise he wanted to go back in.
“I want to go back in and try again. Places like this cost a lot of money Mummy and I want us to make the most of it.”
Be still my beating heart. I adore this kid.
It hadn’t cost the earth to go there – £20 if that for us both; but it could have cost £2000 and I wouldn’t have cared about leaving. However he was determined to stay and go back in. Second time round, he was also determined to walk on his own. Man alive did he try. All in all we managed about 35 minutes of our 1 hour session.
“I think I’d give it a 3* Mummy. It doesn’t work too great for Ataxia.”
On the way home, we discussed our bumps and bruises and T said he felt like he wanted to cry. He said he felt frustrated and sad. It is becoming increasingly obvious to us all that once challenging tasks and activities are becoming *almost* impossible. I think this is starting to hit T a bit and it is one of the most difficult things we have faced so far. The Ataxia has always been there on the periphery, but now its well and truly taken root. There are certainly no commitment issues with this condition. Its moved its stuff in before we’ve even cleared out a drawer! Its not that we weren’t expecting this, its just that it is happening so much faster than we thought, and summer seems to have sent it into overdrive. When J and I went to receive the diagnosis, we were told T would probably be in a wheelchair by the time he was 16. The wheelchair is sat in my car and he’s not even 10. 8 years has been condensed into 8 months. I think our Flux Capacitor is broken.
Our wonderful OT also came out for a visit today and spoke to T about going back to school. She has some wonderful things for T to make his life a little bit easier. However, he was very sketchy about all of this. When we spoke to him about it he said he is worried that everyone will ask him questions about why he has things such as a wheelchair and different cutlery. We spoke a lot about how there are lots of people with additional medical conditions that we have no idea about. We also discussed that his Ataxia is a part of him, just the same as my Crohns Disease is a part of me, and J’s crazy allergies are a part of him! He seems more open to other people knowing about the condition post chat, and has agreed to have someone speak to his class about it to hopefully stop some of the questions.
We decided today that sometimes you just have to roll in a different direction to the one you planned; and as long as we are all rolling together in our little family, we’ll be just fine. And probably not on a bouncy castle.