Riding the Wave

It occasionally seems to me that some people think raising a child with special needs must be a romantic and heroic thing to do; they give you that look which says you’re doing something noble and good as they graciously concede “I couldn’t do it.”

How can they be so sure? No one knows how they will react until it happens, by which time it is too late; there is no choice.

Growing up, I had no experience of children with disabilities, so where were they? Hidden away, probably, where they were out of sight and out of mind, and therefore unable to offend the rest of society with their existence. But whom were we really protecting? 

I remember reacting badly, once, when as a teenager, I was approached by a young man with Down Syndrome. He only wanted to talk, but I couldn’t understand him, and I was afraid. Deep inside, I knew I was wrong, and burned long after with confused feelings of shame and guilt I didn’t understand.

To me, the presence of those with special needs was something hazy and distant, the stuff of movies and books, but not something that happened to real people in normal, every day life.

Then Carys came into our lives, turning everything I had ever thought and felt and believed on its head.

We had known something was wrong from the very first scan, which had revealed the unwelcome shadow of a cystic hygroma and foetal hydrops. Our little girl was expected to die before she was born. We refused a termination, preferring to let nature take its course. Our feisty little daughter hung on until week 37, when she was delivered naturally with a very healthy APGAR. A month later, after some drama in the SpCU, she came home. Already, there were signs that things weren’t right.

A tangle of tiny red blood vessels had begun to bloom in an ugly roseate mass on her forehead, the beginnings of a haemangioma. It grew so big and so fast, that at 4 months old Carys was rushed into surgery for fear she might lose the sight in her left eye.

This led to the discovery of a serious heart condition called Hypertrophic Cardiomyopathy, a demon which would stalk her for the rest of her life. If anything was to steal her from us, it would be this.

Gradually, the full extent of her disabilities were revealed to us in all their gory glory; issues with hearing, sight, swallowing, feeding, the gut, epilepsy, neurology, hormones, growth, development… you name it, she had the lot. We dreaded attending hospital appointments in those early days, wondering what else could possibly be left for the doctors to find wrong with her.

Meanwhile, the debate raged on as to the nature of the beast which claimed her; was it Noonan’s, Turner’s, or something as yet new and undiscovered? No one seemed sure. Finally, when she was 18 months old, test results confirmed a diagnosis of  Cardiofaciocutaneous Syndrome (CFC). We had already been given a leaflet explaining Noonans, a little a4 scrap of paper with a few vague sentences. this time, there was no leaflet; CFC was too rare.

So we hit the internet, and found CFC International. It was a revelation; suddenly, I wasn’t alone any more. Having contact with other CFC families has been a lifeline, an education, a shoulder to cry on, a friend to laugh with. it has been a forum in which to share the good times and the worst, with people who understand.

Children with CFC often share facial features which give them a distinctive look; coarse curly hair, pale drooping eyes, low-set rotated ears, no eyebrows, sparse eyelashes, wide forehead, narrow chin. They share many health issues, too; poor feeding, failure to thrive, HCM, epilepsy, low levels of growth hormone, susceptibility to illness they can’t fight off. In terms of development, many can’t walk or talk, some can sign, poor muscle tone including internally, such as the gut. The extent to which individuals are affected by all the above varies considerably. It is not thought to be hereditary, but rather the result of a spontaneous mutation in the gene.

Having a confirmed diagnosis, of course, changes nothing. There is no ‘cure’. The manifestations of the syndrome, be they physical, health, or developmental, can at best only be managed and treated on an individual basis.

Now, at nearly 9 years old, Carys can’t talk or communicate on a deliberate or meaningful level. Her needs and wants are all guesswork on our part, often to the frustration of both parties. She can walk a little way around the house or school in her walker with a lot of coaxing, but she will always need her wheelchair. She takes her food orally, but I will always have to puree it and spoon feed her. She still wears nappies. She has a safety bed tent to stop her falling out of bed at night. She has poor hand function, so she can’t sign, and play is limited. She is completely dependent on her carer (me!) for her needs. And she takes a lot of drugs which she will need for the rest of her life.

Despite this, and all the hardship she has endured in her short life thus far, she is a feisty little character who enjoys the scrap of life she has been given, and clings to it fiercely. She is always cheerful and happy (unless ill… ot tired, lol!), overflowing with love, has a great, if slapstick, sense of humour, a beautiful beaming smile and an infectious giggle. She is an inspiration to be around.

I’m doing my best to ride the wave of Carys’s disability with her, but I’m only human. Sometimes, I find myself surfing the crest, and it’s exhilarating; sometimes, I’m flailing feebly about, submerged in the murky depths. Somehow, I keep treading water, and manage to keep my head above the surface.

******

You can find out more about CFC from CFC International.

You can read more about my life with Carys here.

13 thoughts on “Riding the Wave

  1. You are strong, Ali. It is not a sign of weakness to be overwhelmed at times. And I am convinced that other moms are not doing this job so much better. Even if they also have a CFC child – they have their bonds, you and Carys have another bond – your very special and exclusive bond. No other mom could do for Carys what you can do for her – never. 🙂

    Liked by 1 person

  2. I love this post, thank you. It is hard to describe to someone who doesn’t know how it feels to have your life turned inside out, but you did it well. My own son shares some of these features, although he has the hand control to sign which makes things less frustrating. Saying that, he has just come and ‘communicated’ that he wants a different episode of SpongeBob by hitting me on the head with the remote 🙂
    At least we know life won’t be dull, keep on keeping on.

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  3. I used to feel uncomfortable around special needs people too. But when my son was diagnosed with Autism, things changed. It became personal. Of course I myself was undiagnosed until shortly thereafter. As a professional photographer, now, we do an annual photo session of a residential facility for kids and adults with special needs. Most of them have Downs, and they are the most loving people I’ve ever met! My daughter is autistic, but has a myriad of mental disorders and to be honest, she’s just plain mean. So often I have wished I had enough money to adopt a Downs or other special needs child just to get someone loving. Carys is such a cutie and I love her sweet smile. Every time you post her photo, I just want to hug her. I know that must be so difficult trying to figure out her needs, but still, I know you must be so proud of all her accomplishments, too. And in case you don’t hear it enough, you are a hero. You’re an amazing mom.<3 Thank you for sharing your journey and helping us all understand a little better what it's like to walk in your shoes and Carys's. 🙂

    Liked by 2 people

    1. Yes, one thing Carys has in abundance is love, and she shows it every day. When times are hard, it’s that overflow of love which keeps us going and makes it all worthwhile. Thank you for the personal compliments too… although I would dispute them, lol! I don’t feel uncomfortable around people with special needs any more, do you? or shocked. But I think I tend to worry too much over everything I say or do in case it is misconstrued, or interpreted by them as patronising. It’s possible I try too hard, which is just as bad if it’s obvious, lol!

      Liked by 1 person

      1. Yeah, I don’t feel uncomfortable anymore, either. And perhaps it comes across different in the written word, but I think, or at least I hope, when I’m with “special” people and their families, that I just show them love and acceptance. as for anyone else who’s outside looking in, until they’ve walked in your shoes, they won’t get it. Even if their child has the same exact diagnosis, each child is different and may react differently to outside stimuli.

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  4. “No one knows how they will react until it happens,” This in my experience is true of many many things, and I often find myself saying something like this often to people, not just when they similarly say they can’t imagine living with a disability.

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