Tuesday 4 October 2011

Finding a place in the world for a Little Princess

I was on the computer when the Little Princess and Mog came home from school this afternoon. the Little Princess graciously allowed me to finish reading before demanding CBeebies. Which is good, as I was scrolling back through this post over at the Henn House.

tLP was fascinated with little E-F. She has Spina Bifida, just like me. She has a wheelchair, just like me. She has jelly on her back (ultrasound), just like me. She has to go to hospital, and wait, and sit, and see doctors, just like me. She has catheters, just like me. She has to have operations sometimes, just like me.

And then we clicked to the previous post. Such beautiful photography. But what are those? Why can I not stand up like that? My splints are stupid and I actually do hate them. Meltdown.

There's only a couple of inches in it. If her lesion had been a couple of inches lower, chances are she'd be able to walk, like every other child and adult she knows with Spina Bifida. Then again, if her lesion had been a couple of inches higher, she'd probably be either dead or totally ventilator dependent and without the use of her arms. But that's small compensation when you're six.

tLP knows she has Spina Bifida. And she knows that's why her legs don't work. And why she gets to spend so much of her life at hospital, at appointments, with therapists. It's why she needs catheters, and why she can't balance well enough to do them herself. It's why she needs spinal surgery, and it's why she can't have the operation which would fix things up the most effectively, and will have to go for a more complicated and less successful patch up job instead.*

Most of the time, she thinks of herself as pretty able (or possibly, pretty and able). At school, at Godzone and at Rainbows she has friends who include her just as she is, and she would identify herself far more with her able-bodied friends than with Mog and Mog's peers. She's used to people envying her wheelchair - and only gets upset when small boys attempt to take over steering or button pressing. If she's in her manual chair she'll push it herself or gladly commandeer a friend to push it for her - and so far, her friends will happily line up to give her a boost when needed.

And then she sees someone who might really be "just like me", and realises they can do that bit more. And I know she doesn't see the fact that for E-F, walking isn't the simple ballet her classmates dance, but the huge achievement rolling across the floor is for tLP. She just sees "that girl like me" suddenly "not like me" after all. And I see how much walking does mean to her, even though she doesn't really talk about it much. And the best and most evenly cut little squares of cheese with matching squares of ham, and a raisin and a cube of white bread with no crusts can't compensate for that.

But then she wants to know more. And she isn't envious, she's impressed and excited for little E-F, this little girl she's never met, but who is mostly "like me". And she shelves it, and we watch some CBeebies instead. Which is, as it turns out, a wise choice. Because right there, right then, on Mighty Mites, there is a little girl sitting on the floor "like me". Who is then in her big power chair "Like my old chair" and showing the world how to do ten pin bowling with a big ramp to roll the balls down. And our own Little Princess is an equal again; she can bowl and she can she can drive her own chair, and there are other children out there like her and they are having fun, and she can have fun like that too.

GiggleBiz comes on next, and there's a little girl with a naso-gastric tube, and "that was like I was having that one day", and hurrah for CBeebies and for blogging parents who are willing to throw open a window onto their lives. So we move on towards bedtime, and I wonder whether tLP realises how different her bedtime routine is to most of her friends, but decide to shelve that for another day. And we read Charlie and Lola, and she does some excellent sounding out and I don't kill her, although I quite want to, for insisting that g o o d spells DOG, and I leave her on the pot for a minute as I go to fetch her drugs.

And then I hear muffled thumps from the bathroom, and stand in the doorway watching as she picks each leg up in turn with both hands, dropping her foot back onto the floor then twisting to reach down for the next. Lift, drop, repeat, lift, drop, repeat. "Look Mum, I am walking."

And it matters.

*Complicated, but boils down to the fact that she can't have rods to the base of her spine as the base of her spine is split and frayed rather than being one solid lump, and can't go through her back to get to her spine as the myelomeningocele has left too much scar tissue and wodges of spinal cord. Deeply untechnical explanation.


Anonymous said...

yes it matters and it hurts--probably Mom the most.
Yes we have the grace and Love of God to help us through--but sometimes the pain breaks through as we love and care for our kids needs everyday.
Sometimes I have wondered what some of my children would be like if they wouldn't have special needs--but I also realize that if they did not have the special needs--physical, medical, and mental that they have they would not be in our family. It can be a double edged sword.

R said...

This. This is why having a community is so important, why visibility of diasabled adults and children is so crucial. That she was able to put the telly on and see TWO children that she identified in that one afternoon is why unlike almost every disabled adult from previous generations, tLP will not grow up hating herself and her impairments.

I don't have Spina Bifida but I do have a catheter and a PEG and powerchairs and hoists and splints and legs that don't work, not even for standing up for a minute, not even with my splints on. One of these days I hope I can manage to meet tLP and expand her repertoire of People Like Her just that little bit more.

pippinsmum said...

Hard for tLP, but better that she is not given promises of things that will not happen.Christian friends of ours had a boy with spina bifida, more than 30 years ago.Scans then were rare, it was spotted at birth and the baby whisked away to Alder Hey for an operation. They were told it was a fairly mild case and the Doctors said that were convinced that he would eventually walk. He had a shunt for hydrocephalus, and has endured many operations. To this day he is in a wheelchair.
tLP can have a fulfilling life without being able to walk, and she is in a loving Christian family, which is better than many so called normal kids have.

Anonymous said...

Sometimes things just ain't beeping fair! :(
I just wish that for one day we could pick one aspect of our kids' lives to change, a sort of dream come true for a day. Maybe that would be harder though, having lived that dream for a day, no more, but all the same at least tLP could say and know she did walk even if it was only for one day....(& yes you guesed it, my baby would see...and oh, the things I want to show her!)
K x

Ashley said...

Oh hell, Tia. I get it. And it hurts. I know people with CP "just like me" who can do just that little bit more.

Keep doing it, Mummy. You're doing a good job. I'm sorry it hurts you both


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