Red heart and a stethoscope

Re-blogged from Tuesday, October 25, 2011.

When a child is born, we are so full of hopes and dream. How frail those dreams are, how easily dashed and broken.

Whilst I still carried Carys around within my body, knowing only that what she had was fatal, but not knowing what it was or why she had it, my most daring dream was that she would be born alive so I could hold her and look into her eyes, and tell her how much I loved her. Just five minutes of life, that was all I dared ask for.

I didn’t know then how feisty, how determined, how powerful my little daughter was. Despite everything medical research and doctor’s experience told us, she hung on in there and fought and struggled against all the odds to hold on to this precious scrap of life she had been given, whatever it’s baggage.

In two months she will be six. No-one knows how long she will be with us. Her heart, you see, is a ticking time bomb with a fuse of indeterminable length. It could blow at any minute. So we just get on with things, and try to do all the things any other family would do. You know, normal things. Whatever normal is.

I want Carys to have everything other little girls her age have. So she has pretty clothes, soft little bracelets and flowers in her hair. Too many special needs children are dressed in dull tracksuits for practical reasons. When you have a child like Carys, you understand only too clearly that beauty is skin deep, but it’s a fact; the rest of the world judges on appearance, these children more than most.

What else does she have that all the other little girls have? Well, she can’t ride a bike, but she has a wheelchair instead with cute orange and pink daisies on the wheels. She loves music, so she has her own CD player. She adores Peppa Pig, so she has her own TV. But it’s not just about the outward trappings, the material things. What about love? Opportunity? What about tolerance and acceptance?

What I really want is for people to see the child first, not the syndrome. I guess by dressing her like any other little girl, I am trying to help that to happen, minimize the differences. When other mothers walk down the street with their little daughter in tow, people stop and smile at the child, comment on her pretty dress, or her hair, or ask her a question about the doll she is carrying, or school. That doesn’t happen when your child is in a wheelchair, no matter how beautiful the child, or how sweet her smile. All people see is the wheelchair, followed by the scar on her forehead, followed by the fact that she dribbles, and plays with a rattle. So they try really hard to pretend they haven’t noticed those things, to the extent that both parent and child are ignored.

I know how hard it is to strike a happy balance. We are all only human, right? I’m not going to give anyone a hard time about it, but all it takes is a smile, a hello, just like you would give to anyone else that you might happen to be standing next to in the supermarket checkout.

The other day I was waiting while my car had it’s NCT (it didn’t pass; needs a new ballbearing, or something…). I mentioned the nice weather to the man sitting beside me; he nodded, smiled and said, “Did your little girl have to have a surgery?” I was so surprised, I couldn’t speak for a moment. I told him a little bit about Carys, and all the tension faded from the room. Suddenly, everyone was talking in a room which until that moment had been silent. Even though my car had failed, I felt happy driving home, and it wasn’t because of the sunshine.

Sometimes, I wonder why I care so much. Surely the kind of people who treat others badly aren’t worth bothering about? But if you don’t start with them, you’ll never improve attitudes in society. Those who are already tolerant and accepting don’t need educating.

Often, it’s hard work maintaining a thick skin. Sometimes, I just can’t do it, and sometimes, I don’t want to. I know that my having hysterics with someone in public because of a perceived insult to my daughter is hardly going to help her cause, or that of any other special needs child.

I want to raise awareness of the plight of the special needs child in society, but not like that. And not by carrying some kind of placard which says, “Hey! We are normal!”

This video says a lot about peoples’ attitudes to the disabled; while many didn’t condone the bullying, they stood by and allowed it to happen. I know its a very small minority, but it’s still upsetting.

Carys is already working on it. Anyone who knows her well will know exactly what I mean, in fact, they have probably already been her unknowing victims.

You see, Carys recruits people. I’ve watched her at work. She’ll pick someone out, and she’ll go to town. First the long serious stare out of baby blue eyes. Then, when she has their attention, the brilliant flash of smile. That usually elicits the return of a smile, and the victim is drawn in for closer contact. Carys shares her toy, pats their arm or face, moves in for a hug or kiss. Hook, line and sinker, every time.

Carys has found her own way to show people, even strangers, that people like herself who are different, can still be worth knowing, can still be fun, and have fun, that they may take a little extra effort to get to know, but that they have so much love and loyalty to give.

And to carry on her good work, I write, and hope I can help to pass on Carys’s message to the wider community. Because I think that just might be the reason why Carys and I are here.

12 Comments on “Attitude

  1. Pingback: The Sunday Show – Defining Moments with Ali Isaac – Author | Smorgasbord – Variety is the spice of life

  2. Thanks for sharing this precious message about your special Carys, Ali, retelling a story that so many people need to know, to put into action with somebody endearing where they live.


  3. I would LOVE to meet your beautiful daughter and enjoy looking into each other’s beautiful blue eyes.. that way we could see beyond her wheelchair and my walker! ❤


  4. Excellent post and video. Boy, do some people need educating! I’m not a full-time wheelchair user but I’ve had similar treatment when I have been in my chair.


  5. A beautiful post, my facing is aching from your description of your daughter – I was smiling so much. Our children are our most precious gifts, and their strength never ceases to amaze me 🙂 They can teach us so much and hopefully, one day, that lesson will finally be learnt – we should embrace our differences and celebrate the unique beauty that is truly ours.


    • Thank you! You are so right about that. And I love that line ‘one day that lesson will finally be learnt’…


  6. Thank you for re-posting this set of reflections. As a person with disabilities, I recently has one of those less-than-pleasant experiences, and surprisingly, it was at a health care provider’s office. Because I was in a transport chair, the woman behind the counter spoke over my head, to my son, not to me; and I’m still fuming over what she said, and the way she said it.

    When I was in nursing school, I learned the proper way to relate to persons using mobility assistance devices (and indeed, the consideration shown to me by the professional staff was acceptable). She was only a clerk, but as the public face of the practice, she should have known better, and when I’ve cooled off sufficiently, I’ll be writing to the professionals in the practice, to complain about her attitude.

    You and Carys have undoubtedly developed more grace under pressure, than I have, in such situations. But as you said, Carys is not just a syndrome; and I object to my being defined by my cane, walker, or chair. Alongside everything else with which we have to cope, we shouldn’t be expected to tolerate fools gladly.

    Thanks for letting me vent. I hope you and your family have a good day!

    Liked by 1 person

    • Christine this is a perfect place to vent!!! We have had similar experiences too. I remember a woman coming up to me once and rudely demanding “Whats wrong with her legs?” Over the top of Carys’s head, and I thought, how does she know that Carys cant understand her? I almost said why dont you ask her? Just to make a point but that could have backfired on me lol! As if the stupid cow had a right to know! Yes, I was gracious I guess, because I patiently explained when all I wanted to say was”Nothing. And whats wrong with your face?!” Thinking I’actually quite like to push her face in lol! Curiosi is fine, rudeness is not. You are right to bring this issue to the managements attention. She should have known better. Why should you have to put up with it?


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