I haven’t managed to link up to Small Steps Amazing Achievements for a few weeks. This has happened before. Usually it’s because there haven’t been any inchstones to write home (or a blog post) about. This time round is because I have so little time. Life is crazy busy at the moment, and I am struggling to keep up the blog, and struggling in other ways because I am unable to keep up the blog. But today I have a rare, spare 15 minutes and a bunch of inchstones to tell you about. Here’s just one…
Yesterday was World Cerebral Palsy Awareness Day. Boo and I wore green and I reblogged a post where I try to explain much of what I have come to learn about CP over the past 2 years. But the biggest and most fun bit of awareness raising we did was accidental.
It was sports day in Boo’s room at nursery yesterday. No tie in with World CP Day was intended. When I saw the poster announcing the event a month ago my heart sank. Horrible memories of a party I took Boo to recently, that ended up not being the soft play we thought but a bootcamp style obstacle course he couldn’t participate in at all filled my head. I felt glad I was working that day. That I wouldn’t be able to get back for work in time for the sports day. I wouldn’t have to make excuses for why we couldn’t participate. I wouldn’t have to feel the hurt of seeing lots of kids do things Boo might never be able to do.
But as I left nursery that day, the room manager asked me if I was coming and before I had time to make my excuses reassured me that the whole event had been set up with Boo in mind. She wondered if I could do all the events with him in his Upsee, which they hadn’t seen him use.
What could I say? The Grumposaur and I made special arrangements at work to be there and Boo and I had a couple of practice walks in the garden in the Upsee. Sissyboo and a friend pleaded to come watch and cheer on Boo, too.
The minute I put him in his Upsee. Boo started screaming with delight. As we waited for the games to start, we walked slowly around the playground as he squealed and said ‘yeah’ and ‘go’. He hasn’t been that excited even on Christmas Day. And we realised, this was the first time in the year he’s been at nursery where he could access the playground on his own terms. Where he could access it upright, rather than being wheeled in a chair or standing frame.
He was seeing the world differently.
But you know what was best of all? Others were seeing him differently. His carers talked about how grown up and tall he looked. His friends kicked balls to him and came up to talk to him. He looked just like them. They saw him as a little boy, not a little boy who can’t do what they can.
When the games started, the surprises just kept coming. I was a bit worried that we might trip or stumble. We had’t practised much in the last few weeks because Boo’s been getting used to a new walker, which works in a completely different way to the Upsee, of course.
Boo has always liked the Upsee and initiated some steps, but he has needed encouragement and lots of support. Yesterday was completely different.
I was not helping him move, he was taking me along for the ride. Every step was initiated by him. Forwards and to the sides. And each pull up of his heel was emphatic. He was stepping like a giant. He clearly felt like one.
And with each step came more squeals of delight. As we did the egg and spoon or three- (in our case four-) legged races he said ‘go’, ‘go’, ‘go’ all the way to the end. He joined in every game and worked so hard while his Dad, sister and sister’s best friend cheered his name loudly.
I choked back tears of happiness, while Boo only cried when we took him out of the Upsee at the end of 40 minutes of racing in it. ‘More’, he said plaintively. He didn’t want it to be over.
It was a very special moment, indeed. And I can’t think of a better way of spreading awareness of CP and the amazing potential and characters children with CP have than what Boo did yesterday.
I am so grateful for Leckey’s Fireflyfriends for the Upsee and for making Boo’s participation in something every child should have an opportunity to enjoy possible. And mostly, I am just really proud of Boo for his determination and beautiful personality.