• Ali Isaac

A #Carys Update: May 2018 A Good Night’s Sleep

Updated: Jan 27, 2020

I am sitting on the edge of Carys’s bed. She sprawls across my lap, fuzzy head tucked into the hollow of my neck, small arms clutching me tight. It is incredible how much strength there is in her under-developed muscles. I wait for her sobs to subside. It is three am. I am exhausted. We have not had a single solid night’s sleep in a month.

Carys has made great progress with her walking, so much so, that her PT feels that she no longer needs her AFO’s. How I rejoiced to hear that! But this particular silver lining, like so many, comes with its own dark cloud attatched.

We have always been grateful that Carys loves her sleep. She is a good sleeper, and if she wakes at night, usually she manages to drift off again. That is partly down to the ‘rituals’ we have adopted with all our children from day one: the soft blanket, the cuddly toy, the musical toy, the fun songs and stories, the hugs and kisses. She loves her bed, and she loves bed-time.

That’s so important to us parents; we can’t function well without good sleep, either. I turn into Godzilla if I don’t get my eight hour quota of zeds, and even then my family know not to speak to me until I’ve had my first coffee of the day!

How Carys Likes to sleep. www.aliisaacstoryteller.com
How Carys likes to sleep.

Carys likes to sleep curled up on her side in the foetal position, or on her tummy with her knees drawn up underneath her, bum in the air.

She can’t do that anymore, though, because at bed time I have to strap her into her night-time AFO’s, with an added contraption called ‘gators’. It’s like having heavy plastic knee-boots strapped onto her legs with a boned corset-like structure fasted over the top and up to the tops of her thighs.

The AFOs hold her foot at a 90 degree angle, stretching her calf. The gator prevents her from bending her leg at the knee so that her hamstrings are stretched. Without them, her muscles would tighten and seize up, making walking impossible in the future.

Carys wearing her night AFO’s and gators.
Carys wearing her night AFO’s and gators.

It also means she can’t sleep, because she can’t get comfortable. Getting off to sleep initially doesn’t seem to be a problem, presumably because she is so tired to start with. However, she does now kick and fight when I strap her into them, because she has come to understand what they mean. After a few hours, inevitabley she wakes, any time between midnight and 3am, and then she gets very upset. And who can blame her?

Yesterday, her little face looked bruised with tiredness, grey smudges under her eyes like she’d slept without taking off her mascara. Carys doesn’t wear make-up, but you get the picture. And she was so grumpy and tired all day. She really needed a proper night’s sleep, and she wasn’t the only one… Conor and I did too. We’ve been taking it in turns to deal with her in the night.

So I decided to let her go to bed without her AFOs and gators, just for one night, and she slept like a baby! She didn’t wake once. I was happy for her, but of course I felt the duality of guilt; guilty for not following through on her treatment, and wondering how far that one night had set us back, and guilty for forcing these horrible contraptions on her night after night, singing songs to her and smiling widely as if they are a good thing and she shouldn’t make such a fuss.

I can’t work out which makes me the better mother… or the worst.

Tonight I strapped her back into them with a smiling face and a heavy heart. She kicked and kicked and moaned, but she didn’t cry. Not yet.

Carys is my little fairy child, my changeling, ethereal as breath, solid as bone, vital as blood, flighty as thought, a gift, a blessing and a curse. I know I can’t live without her, I don’t want a life without her, but living with her is the hardest thing I have ever had to do. She is my life’s work. I push and pull at her with equal force.

Every night, I strap her into her suffering, and yet she forgives me, draws comfort from me even, wraps me in more love than I am capable of receiving, or deserve.

I don’t know when to stop. When is enough? It’s been a month. We’ve come this far. To stop now would only belittle her endurance to this point. It might only take another month, maybe two, and in her lifetime and ours, that’s a mere moment.

To walk unencumbered. She loves to walk. If I try to hold her hand, she snatches one, sometimes both, out of my grasp. She wants this, I know she does. But she doesn’t associate the night-time torture with her freedom to walk during the day.

Carys will never walk ‘well’. She will never walk far. Even so, she has travelled further than most of us. I guess we will just take it one step… one night… at a time.

My second year at uni has now finished… I had my last exam on Thursday. Let’s just say that I found this last semester somewhat intense. I’ll be posting about that later, but I’d just like to inform Irish mythology fans that I have a lot of posts coming up over the summer that you might find interesting, although I can’t guarantee I will be able to keep it going come September, as I gear up for Year Three- The Last… gulp! Where did the time go?

#CFC #raresyndrome #specialneeds #unconditionallove #AFos #learningtowalk #sleep #parentallove #walking #Family #child #mothering #physiotherapy #love #PT #disabled #sleepdeprivation #lackofsleep #mothersguilt #CardiofaciocutaneousSyndrome #suffering #Parenting #exhaustion #Carys #gators

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