Crystal Ball « Terrible Palsy

Crystal Ball

June 29, 2008 at 6:28 pm | In Bits & Pieces | 8 Comments

I try not to think about Moo’s future. There is enough to deal with in the present. If I worried about the future as well, it may actually push me over the edge. An edge that I walk far too close to.

But every now and again, I see something out of the corner of my eye that sends a shiver down my back. A glimpse of what life might be like in the future. That Moo’s challenges are only just beginning.

We went to the park today. Moo has the recent habit of taking himself away from us in his power chair. It is his freedom. His choice as to where he wants to go. I’m not going to take that away from him. He puttered off from me and Sumo in his chair. He went to what can only be described as a modern day merry go round. He pulled up behind two teenagers, who must have been blocking his view as he beeped his horn at them and they jumped out of the way.

And then Moo sat there watching the kids playing on the merry go round for what seemed like the longest time. I watched from afar. Wondering what was going through his little head. Was he happy to just watch? Did he want to be on it having fun like everyone else? Did he realise that there was not a way on earth that I could have got him on that thing on his own? He never asked. I didn’t offer. Too much gravity involved. He would never have been able to hold on.

As I watched him watch, I realised that I don’t want him to watch from the side lines as others have fun.

But there isn’t much I can do about it. Or is there?

8 Comments »

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I think Moo was contented being an observer. That can be entertaining and fun.

Comment by Grandma. — June 29, 2008 #

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He’s smart and knows what we wants. He will manage to get it!!!

Comment by mamaterapeuta — June 29, 2008 #

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Given Moo’s independent strolling, and your acceptance/encouragement of it, I imagine he’ll develop quite an independent voice.

Comment by Rob at Kintropy — June 29, 2008 #

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Accessible playgrounds can help minimize that exclusion a lot. Is there one nearby? If not, do you think there’s enough interest to create one? It’s not a one-person job, but if there are other families, a PT clinic, a school, a town willing to work with you… amazing things can happen.

And remember, it’s likely that Moo will gain strength and balance with age. There will be more things that are safe and comfortable for him to try, as he gets older. And as Rob says above, he’ll be more able to explain what he wants and feels, too.

Comment by pennylrichardsca — June 30, 2008 #

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It’s heartbreaking to think of him there, and to know that things aren’t as they should be. No child should have to watch from the sidelines.

I’m sure I’ve said it before, and it probably sounds terrible, but sometimes it’s such a comfort that Ethan doesn’t seem to know what he’s missing. *I* know, and I have to be sad for him, but to him, things just are as they are. I can’t imagine how hard that must be for a little boy to be so close and yet so far away from everyone else.

As far as if there is anything you can do – well, I haven’t witnessed more than a handful of mothers who work as hard as you do to make the world better for their children. You already do so much. But will we ever be able to make it perfect, so that our children never hurt? I doubt it. I’ve learned to accept that even my other children will have challenges I cannot help them avoid – bullies, glass ceilings, broken dreams. It’s a hazard of the job, learning to let go and let them hurt. It just doesn’t seem right.

Keep doing what you’re doing. Just the fact that he could take himself over to the location, honk the horn and make his presence known all on his own, is a major leap forward.

Comment by Mete — June 30, 2008 #

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Can you plan to bring muscle men to the park with you sometime?

Sorry, I’m always trying to think how to make something happen.

Did he bring it up later?

Comment by Janette — June 30, 2008 #

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Yep minimise the sideline watching for your sake as much as his. Way too painful. Just wait until he does wheelchair footy like Mr S and you have the thrill of wheelchair damage every week. Maybe lie about his age soon and say he is a small 12 year old? Those wheelchair footy kids sure are competitive – and it’s great to see!

Comment by Fiona — June 30, 2008 #

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Grace started CE camp Monday and this group has some older children in it since they are out of school for the summer. I was actually telling my husband this morning that I could see in their eyes that they wanted to do so much more than their bodies would let them. It made me so sad because I know I will see that it Grace’s eyes. Oh what do we do?

Comment by Jacolyn — July 10, 2008 #

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