• Ali Isaac

Trust and Lies

Updated: Mar 11, 2020


I have long felt that Carys can understand more than she is able to indicate to us. In fact, that’s what gave me the idea for the main character in my books… you can’t get a more flawed hero character than someone who can’t walk or talk.

She’s always been able to follow simple instructions, such as ‘stand up’ (with assistance, of course, but she knows what to do), ‘sit down’, ‘hug mama’. ‘kiss mama’, ‘come to mama’, ‘drink your juice’, ‘where’s daddy?’, etc.

I know she understands these simple phrases, because she responds appropriately by carrying out the action I have requested of her. Now, it could simply be that she’s learned by association and repetition, because she hears them so often.

Or perhaps she understands.

In recent years, we have had to cope with some very difficult and upsetting behaviours from Carys. Going out for a meal, or taking the family on a day trip was a big no-no. She would scream and scream and scream, and there would be no consoling her. She made family outings so stressful, we couldn’t enjoy them at all.

Last year’s summer holiday was a disaster for us all, so much so, that for the first time ever, even the boys got upset. They are normally so beautifully tolerant of Carys and all the adjustments living with her brings.

Strangers are not so patient, however. Trying to amuse her and keep her quiet in a cafe one day, I downloaded some simple baby games to my phone. They did the job, until someone rather irately requested I keep the noise down. Of course, as soon as I turned down the volume, she couldn’t hear it (due to her slight hearing loss), and the screaming began. Perhaps he enjoyed the sound of that more?

Bearing in mind that the main reason I downloaded the games in the first place was to save the other diners from the horror of Carys’s outbursts.

So, what do you do? Stop going on holidays? Never eat a meal out? Have no life?

The boys are entitled to all of life’s experiences, and as their parents, it is our duty to give them as many as possible. And something we greatly want, and like , to do.

Carys will never become familiar with other places, or learn how to behave in social situations if she is constantly left in respite. Abandoning her and isolating her because she sometimes makes life difficult is not something we intend to do.

But we are so torn.

At the weekend, we went to a big family event, armed with toys, DVD’s, headphones, ipad, special foods, her soft blanky, oh everything we could think of to make her feel comfortable, safe, relaxed in an unfamiliar environment.

But in my heart, there was a heavy, sinking feeling; would she act up? How could I keep her well behaved and happy for a whole day in a strange place, surrounded by a crowd of strangers (to her)?

Well, she was a little star. And when we got home, I hugged her tightly and said to her “You were such a great girl today, so happy and so well behaved, such a good girl.” And she laughed and pointed to herself. Does that sound like a little girl who doesn’t understand?

So, what’s the difference?

 It’s such a little thing. I realised that Carys has so little control over what happens to her. She can’t understand why she has to leave her comfy familiar room full of music and toys to go to a boring restaurant, for example, where there are strange smells, lots of noise, crowds of people she doesn’t know, and she has to sit in a chair for hours, can’t crawl about, has no fun toys to play with, and can’t make lots of noise of her own.

Putting myself in her position, I realised how frightening/ strange/ boring/ incomprehensible/ frustrating that must be… I mean, why? Why do we have to leave our nice home and go to these places?

So I tell her. I explain in very simple language. We’re going to a restaurant. We’re going to eat our dinner there. You can play with your drum, watch your DVD, listen to your music, sit in a chair, eat your dinner, cuddle your blanky, have a drink, sit on my knee, sit on Daddy’s knee, we’ll have fun. Then we’ll come home, and you can play in your room with your toys before bed.

I can’t be certain that she understands all of it, or any of it. But without a doubt, her behaviour has improved. She knows what to expect. She knows it won’t last forever. And she knows she will be returning to her comfort zone.

Then this happened.

Her appointment came through for a hip x-ray. We’re going to the hospital, I told her confidently. You’ll lie on a bed, and have a photo taken with a big camera. Then we’ll come home. No one will hurt you. Just a picture.

But when we got there, the nurse asked, “Does she have the anaesthetic cream?” I stared blankly for a few minutes, then stumbled over a protestation. “Oh no, we’re not here for bloodwork, just an x-ray.”

But the nurse frowned. “We need to take the blood for tests to do with her bones. Isn’t that why you’re here?” And she rattled off the functions of the tests they were doing, all connected with the reason why here hips were being x-rayed, and I realised that they had to be done.

It’s very difficult getting blood out of Carys. Her veins are tiny, and collapse so easily. It can take ages, and needles in every limb before enough blood is collected, with several attempts for each one. It takes five people to hold her down while she screams and fights, not understanding why we are torturing her with needles, and why I am letting them, no, helping them.

I had told Carys no one would hurt her this time. I felt sick as I held her down and watched the needles go in. I had (unintentionally) lied to Carys, and betrayed her trust.

Fortunately, Carys has a beautiful soul, and a never-ending well of love. She forgave me, and I can only hope that her trust in me is repaired enough that she will be able to believe what I say to her in the future.

#CFC #raresyndrome #communication #nonverbal #specialneeds #motherhood #understanding #xray #mothering #disability #disabled #CardiofaciocutaneousSyndrome #lackofcommunication #Carys

Recent Posts

See All