• Ali Isaac


Updated: Mar 12, 2020

Red heart and a stethoscope

Re-blogged from Tuesday, October 25, 2011.

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 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. 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, minimise 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!”

Carys , smiling in a purple dress, standing and holding onto a handrail beneath some trees

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.

#CFC #raresyndrome #daughter #specialneeds #normal #understanding #mothering #disability #attitudesinsociety #hopesforourchildren #CardiofaciocutaneousSyndrome #Parenting

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