A few days ago, we attended a christmas break up party for the children in our Deaf community. It was held at the local water slide, which is an interesting place to hold this kind of event, given the children can not use their hearing aids / devices in or around the water. so the deaf children, are…Deaf. I mean ,they can not hear properly without their aids. Anyway, so we arrive at the slide, knowing full well that it was also a totally inappropriate place for my child for other reasons. He cant walk, or sit up, or hold his own body up at all so, how was he going to get to the top on the slide? last I heard there weren't many watersides with lifts to the top so that the physically disabled could have fun too.
Despite it being inappropriate for Toby physically, it was totally appropriate for him developmentally and this created a painful issue for us. Toby cant walk to the top, and his daddy couldn't get up those stairs either, with out much puff its hard to climb stairs. Aimee came with us but she isn't strong enough to carry him, so that left me. All good Im happy to work hard, except I also have a medical condition, a very bad back from a work injury. I struggle to lift Toby now simply into and out of his bed is hard. However I have found that if I throw him over my shoulder like a “fireman's carry” then I can lift him for longer distances, but this was going to be a challenge, there are some serious steps leading up to the waterside. But how could I not, how could I let him become left out? I have worked so very hard for Toby to be included, and he wasn't going to miss out on a simple childhood pleasure, like the water slide, he’d been on them before when he was much lighter, and we know that he just loves anything like this, anything that creates a thrill excites Toby.
So with a big deep breath, over the shoulder he went, one step at a time, up the slide I climbed, I wouldn't let it defeat me. I new what would surely be waiting for me at the end. As I climbed the stairs I realised again that this was just one of the many sets of steps that I would have to climb for our Toby, in a world that is designed for the abled, there are no elevators to fun for the disabled. Never thought about, until Toby entered our world, never questioned the lack of facilities especially in our home area, the North West Coast of Tasmania, we don’t even have a disabled friendly playground, there are no slides that Toby can slip down, not without breaking his mummas back. there are no seesaws, or forts that he can enjoy, there is a Liberty swing, in our local park, but it has been dumped there, no thought as to its location, dumped off to the side, so to play on it Toby would again be segregated from his peers, yet another reminder of all the things he struggles to do.
Back to the water slide, so I was climbing up the stairs and all the children seemed to love that Toby was joining in, he’s a bit of a celebrity it seems, and they all were delighted to see him climbing the slide, they let him in, allowed him to jump the Que., (thankfully as he is sooooo heavy) Carefully sitting down, I lowed him to my knees, his little body so tight with excitement, he was gasping the air into his little lungs, as I pushed us to start the slide. Out came the biggest giggles, a laugh so infectious, it made all the physical pain of climbing those stairs worth it, it made all the emotional pain of climbing stairs for the last 5 years, worth it. and thanks to that laugh, to his jiggling, little giggle, I know I will continue to climb those stairs for him, I will do my best to break down those barriers that prevent him from having the same fun as his friends, as why shouldn't he?
Im not sure I’ll be able to get a lift put on every water slide, Im not sure what will happen in the future, as this is most likely the last time he will get to experience a water slide, truthfully, he is too big for me to carry now, but I do, Its sad to think that this could be his last time.. but I know,
I’ll always be doing my darndest to hear that laugh, to see that smile, to be infected with his love, over and over. He is my inspiration, now…. back up those stairs for another turn :)