Carys as a wheelchair angel in her school nativity play
The occupational therapist stuck his head through the physiotherapy room door. “Alison, can you bring Carys in for her wheelchair fitting on Thursday?”
It was a simple enough question, not even a completely unexpected one, but my reaction startled even myself.
I burst into tears. Noisy, heartfelt tears; the kind which make your nose run and don’t look pretty, like they do in the movies; tears over which I had no control, and no way of stopping. Tears which I didn’t then understand.
Because strapping Carys into a wheelchair felt like we were giving up on her; condemning her to a life without freedom and mobility; it was as good as saying “you can do as much physiotherapy as you like but it won’t make a difference…you will NEVER walk.”
That was nearly five years ago, but I can still clearly see the bemused expression on the face of that poor man, trapped as he was, half way between the minefield of my emotion, and the sanctity of the hall on the other side of that door, not knowing whether to step further into the dragon’s den or beat a hasty retreat.
Carys trying to get out of her wheelchair after getting off the school bus
Well, I thought to myself, if Carys is never going to ride a bike like other little girls her age, I’m going to make sure she has the prettiest wheelchair around. Of course, you don’t get gorgeous pink Barbie wheelchairs. Instead, I chose a bright orange chassis, big pink and white daisies for her wheels. I was even more delighted when the small front wheels lit up and flashed as they rolled. When I saw how well designed the seat cushion was for long term sitting, how comfortable and upright she was in it, I knew it was the right decision.
Our first outing was to pick the boys up from school. I felt so self conscious, pushing Carys down to the school gate in her bright new wheelchair. And didn’t everyone stare? There was no avoiding the garish orange metalwork, the fuck-off daisies, the flashing wheels. The message somehow translated not as ‘wheelchairs can be pretty too’ but more as ‘watch out, world, here I come!’.
It wasn’t what I had intended. The cute little girl nobody noticed in the buggy because she looked just like a baby when she was actually nearly 5 years old, had graduated into the poor little disabled girl who couldn’t walk, and wait a minute…yes, looks like she can’t talk either, and…what’s that huge scar on her forehead, and…is that neckerchief a fashion statement or actually a dribbler?
We went back to the buggy. Although Carys didn’t seem to mind the attention, I couldn’t handle it. Strange things happened when we went out with the wheelchair.
Like the time I went to the cash point on the way home from collecting Carys from school. I took my money, shoved it into my purse, and almost collided with a woman standing too close behind me. “What’s wrong with her legs?” she demanded over the top of Carys’s head.
My first reaction was to say,”Nothing. What’s wrong with your face?”
Thankfully, I managed to scrape together enough self control to bite that one back.
I almost said,”Why don’t you ask her?” I hate it when people ignore those who are wheelchair bound and talk to their carer as if they are somehow intellectually inferior, or as if they don’t exist. But I knew the point I was making could backfire on me massively; Carys actually couldn’t reply for herself, or even understand.
So while I seethed and boiled at the rudeness and nosiness, I resorted to the polite friendly truth. “There’s nothing actually physically wrong with her legs that any doctor can determine. Carys has a rare syndrome called Cardiofaciocutaneous Syndrome, and along with that, global development delays. She can’t walk, and we don’t know if she ever will.”
“Oh.” She sniffed, and went back to her shopping. Had she hoped for something more dramatic, more tragic? I pushed Carys back to the car, wondering how much trouble I’d get in if I accidentally ‘lost’ the wheelchair in a ditch on the way home. What gives someone the right to approach a stranger, and demand the details of their affliction? Isn’t that our own personal business?
Carys practising walking with her walker
The wheelchair didn’t see the light of day for a while, until we decided on a family outing, with dog, to Loughcrew Gardens. As we were going to be out all day, I reluctantly decided that Carys would be more comfortable in the wheelchair.
We hadn’t been there five minutes before another woman approached us. “Do you mind me asking why your little girl is in a wheelchair?” she asked me politely.
Here we go, I thought, but dutifully opened my mouth to begin the explanation. You can imagine my surprise and horror when she burst into tears. “It’s so unfair, what some children have to go through,” she sobbed. And then she poured out her heart to me. A year previously, she had lost her five year old son in a tragic car accident.
“I’ve just had my favourite chocolate desert and it was gooooooood!”
I stood and listened for two hours. Eventually, she managed to pull herself together, apologised, and we parted. I don’t know how she felt; I hope it helped her, somehow, to confide in a stranger. But my lovely family day out was ruined. I nearly lost one of my sons as a baby, but he pulled through. Carys was never meant to be born alive, but is with us still against all the odds. It is quite likely that she is with us on borrowed time; both Conor and I accept that she will most likely go before we do. I couldn’t get that poor woman out of my mind, and although the sky was sunny, black clouds followed me for the rest of the day. Because of that bloody wheelchair. Had Carys been in her buggy, she wouldn’t have stood out as different, probably wouldn’t have triggered such a reaction in a stranger.
Yep…we have a love /hate relationship, me and that damn wheelchair.
A Very Important Note: After publishing this, I was thinking about that first outing to the school gate. It was very uncomfortable for me at the time, but I feel I must point out that the stares weren’t malicious. Curious, maybe; dazzled and bemused, perhaps, lol! But a lot of my friends were there, and they have always been supportive and caring of my experiences with Carys. They know that if I’m not around for a while, its either because I’m coping with Carys, or trying to finish a book! They never give me a hard time about it. Where would we be without our friends?