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

Carys, out for a walk in her new wheelchair, smiling. www.aliisaacstoryteller.com

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 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?

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46 Comments on “A #Carys Update: May 2018 A Good Night’s Sleep

  1. Ali, you’re doing a terrific job and, deep-down inside, I’m sure Carys knows that as well. I fully understand that sometimes it can all seem like a struggle, but I know how brave both Carys, you and the whole family are. It’s good to hear that you’re both taking it in turns to sit and cuddle her during the middle of the night when she wakes. As you know, cuddles are better than magic (in my books, anyway). I remember how frightened I used to be when I woke in the middle of the night. You’d never think it from the stories I write, but it was always such a frightening time for me.
    I can’t believe how time has flown and it’s coming up to your third year at university. Many congratulations on this great result. You’re an inspiration to so many of us.
    Hugs to you all

    Liked by 1 person

    • Thanks Hugh! She’s not had them on the last 3 nights as she was full of cold and not settling anyway, but tonight we have to get back into that routine again. Ugh. Thinking of doing alternate legs instead of both at the same time, maybe it will be easier for her to adjust. Uni has been great this year, but tough in that final semester. I have had really good results in all my work so far, just waiting for exam results now. Hate waiting. For anything. Lol! But its nice to have the break now, and am just settling slowly back into the blogging world. So I’ll see you out and about… virtually, anyway! 🤣 Hope you have a great summer… hugs to you!

      Liked by 1 person

      • We missed you big time at The Bloggers Bash, Ali. However, I see (from the comments) that you managed to join the live feed.
        So pleased to hear about your results. Yes, waiting is horrible. I always think the worse while waiting. However, I hope you’ll celebrate in some way.
        Give Carys a big hug from me. I hope her cold gets better very soon.

        Liked by 1 person

  2. I can empathize with Carys: I was diagnosed with obstructive sleep apnoea last December, and I’m still struggling to find a correctly fitting face mask for the continuous positive airway pressure (CPAP) device I have to strap my head into in order to be able to breathe well at night. (In addition, knee damage has put me at risk for the same sort of hamstring contractures that you want to prevent Carys from developing, but I don’t have a gaiter for that leg, yet.)
    It’s been 35 years since I had to deal with my eldest son’s need to wear a “Scottish Rite” brace on his hips and thighs 24/7, so I don’t remember all the details, but I’ve been racking my retired RN brain to come up with what I hope may be some helpful suggestions for you to cope with your new challenge.
    Did the physical therapist not tell you that you could introduce the night-time treatment on a gradual schedule? I’m sure you did absolutely no harm by giving Carys a night off from the treatment. Constant sleep deprivation does her no good: her brain and the rest of her body will benefit from occasional respites. (Unfortunately, I can’t afford to enjoy a “vacation” from CPAP – I need to breathe! 🙂 )
    It would be nice for Carys to feel as if she’s not alone with this. Perhaps there’s some kind of soft-bodied toy with long legs, for which you could make a set of “gaiters” out of padded cloth and hook-and-loop closures. Carys could “help” to strap in the creature, cuddle it to comfort it the way you do for her, and take it to bed with her. If there is no appropriate toy in the shops, perhaps a doll or stuffed animal could be sewn, knitted or crocheted. What about a sock monkey? https://en.wikipedia.org/wiki/Sock_monkey (If you don’t have the time or skill to make one yourself, I’m sure that a family member, a friend, or even an internet appeal would be successful in producing one.)
    Can Carys tolerate aromas? If so, is there a fragrance that she finds pleasant? Putting a drop of a soothing essential oil on a special huggy-pillow may provide the benefit of aromatherapy, as well as its being a reward associated only with the treatment, a distracting effect, and giving her something to do with her arms and hands while her legs are being wrapped. (A whiff of peppermint oil helps me with my CPAP routine, but peppermint may be too strong for Carys.)
    Has Carys had opportunities to hold and examine her gaiters? It’s unlikely that she’d be able to do them any harm. In time, perhaps you could come up with a way for her to participate in her care by her “helping” to put them on.
    There is certainly nothing wrong with your existing night-time rituals. I hope you can find effective ways to help the leg treatment become an accepted part of Carys’s bedtime routine. Best wishes for better sleep, to you all!

    Liked by 1 person

    • Hi Christine! Thanks for your lovely comment. I’m so sorry you have to wear the cpap at night. Some of the children with Carys’s syndrome have to use them too, and I always wondered how they got any sleep at all. Are you managing? As for Carys’s afos and gators, yes, we began with only half an hour and gradually increased. When we got up to midnight, we decided to leave them on as long as she tolerated them rather than wake her up. She isn’t well at the moment, so we’ve left them off for a couple of nights so she can get some good sleep. I talked to her pt who said she was responding exactly as expected, and that it would take a few more weeks. So we’ll persevere a bit longer, because if she can adapt, it will be so much better in the long run. I like your idea of aromatherapy oils, so will look into that. Thank you for all your suggestions, I really appreciate it, and I hope you manage to get some sleep with that cpap on. Hugs to you! Xxx


      • It occurred to me that when resuming the leg wraps after a hiatus in treatment, it may help Carys to accept them again by wrapping only one leg per night, on an alternating basis (right leg on the odd-numbered dates, left leg on the even numbered ones). Giving her the use of one leg at night will improve both her sense of personal control (which is psychologically important – we don’t want to break her spirit) and her bodily comfort. We need to re-position our bodies regularly during the night (for circulatory and other reasons), and to have both legs immobilized at the same time can make that difficult or even impossible, causing great discomfort, as well as resulting in poor quality sleep.

        After a short time of alternating legs, you can begin to reintroduce double-leg treatment, with single-leg treatment nights intervening. This kind of schedule sounds complicated, but it may enable Carys to work up more easily to having both legs confined at the same time on every other night, and because one or the other leg will still be wrapped on the off-nights, you won’t be sacrificing any significant amount of therapy time.

        Oh, I hope Carys doesn’t end up needing CPAP! As far as my own treatment goes, I’ve been compliant every night, although when I was ill with a head-and-chest cold earlier in the year I couldn’t breathe anyway, and that shortened my nightly time on the machine. I average 7 to 8 1/2 hours on CPAP per night, although that’s not all sleep time: I have chronic pain that wakes me, and my mobility problems make it hard for me to turn in bed, so I probably lose 2 hours of sleep just dealing with those things, never mind my also having to re-position the mask when an air leak wakes me. I’ve created solutions for some problems (a stockinette “CPAP Sock” and an additional chin strap), but there are two more mask styles I plan to try, for a more reliable mask seal and for improved comfort (the silicone rubber flanges fail to contain increased air pressure, and they cause pressure sores). After three months of treatment I began to see signs of improvement in my health, so I’m determined to find a way to make CPAP work for me. I haven’t got to the end of my rope yet! 😀

        Liked by 1 person

        • Good for you! You are an inspiration, you really are. I was thinking about alternate legs, the guy who made them for Carys also suggested that as an option if she was having trouble adjusting. I would have thought you’d get more support with your cpap, and certainly be fitted with a suitable mask which fits and works.

          Liked by 1 person

          • I’m lucky not to have claustrophobia issues, but the mask problems are such that I’m not surprised so many people quickly give up on CPAP. When I was in Registered Nursing school, we were strongly encouraged to do critical thinking and develop our problem-solving skills, the better to help our patients to cope with their health care challenges. Unfortunately, that doesn’t seem to be the case with Respiratory Therapists, so I’ve ended up having to manage my own care. It’s an extra burden on top of my other health problems, but I’m glad I have the ability to troubleshoot this. Most people with obstructive sleep apnoea can’t, and don’t understand they’re risking their lives if they quit CPAP.

            Liked by 1 person

            • Well it’s a shame you have to do so much on your own, but great that you have the skills and resourceful nature to do it. Having such health issues is tough enough without that added pressure. Fair play to you, Christine! 😍


    • Mark that is exactly what I keep saying, and you are right. Thank you for your lovely comment and support, I really appreciate it. Xxx


  3. Oh gosh, i can well understand how wearying yet how essential it all is and there’s no consolation in the end game while you’re in the maelstrom. We missed you, of course, but you were there in spirit in your careful hands on the tiller in getting us to this point. Mush love from south London and you’d have loved the blue beard; I want to retire it now but if you make it next year I might just go shamrock for you

    Liked by 1 person

    • Haha! You are a true English eccentric! With a French name. And a blue beard… well, we’ll just have to see about next year, I love the way you are changing it up and updating the look every year… no one rocks a beard like you do! I missed all of you, but the live streaming is such a fab idea, I enjoyed them immensely, and you looked very dapper! Not the same as being there in person though, but it cheered me up!


  4. A wonderful testimony of love : ‘seeing the sick endears them to us’ how true the healthy are somewhat independent and do not need us as the sick do. You are in a great predicament but love always finds a way.

    Liked by 1 person

    • Thank you, that is true, Kertsen. I just wish she didn’t have to go through so much. Thank goodness she has such a loving and happy nature, it gets her through.


  5. Hi Ali – a great article. Everything you do is from the heart and your love for Carys is always at the forefront. Please don’t feel guilty for wanting you and your child to get the odd night’s sleep. You have needs too.

    Liked by 1 person

  6. I’m so sorry that you and Crys have to go through this – it’s hard doing something that affects your child so negatively, even when you know it’s necessary for the long run. Have you tried getting in bed with er and holding her until she falls asleep? I feel your pain so acutely! Good luck and prayers…

    Liked by 1 person

    • I have Noelle, but she thinks its great craic and wants to play! 🤣😂😩 Last night she woke up twice, moaned a bit but didn’t cry, and went back to sleep! She lasted in the contraptions till 430am, so maybe she’s starting to get used to them. Nice to chat to you! Its been a while. How is your foot?


  7. I’m so sorry you are all struggling – life is hard sometimes, even with all the love you obviously share,. Ali. Well done for another year of uni finished.


    • Thanks Judith. It has been a great year in many ways. I jyst spoke to Carys’s pt and apparrantly she is doing well and reacting quite normally at this stage. It could take another 6 weeks before she learns to adjust, so I guess we will persevere. Its too soon to give up now, and she has come this far… 😊 Thanks gor your lovely comment.


  8. Pingback: A #Carys Update: May 2018 A Good Night’s Sleep – lampmagician

  9. And to think I’ve been moaning that I’ve not slept well for the last week because I’ve got a cough…
    Thoughts are with you an Carys, Ali (and the whole family). It’s an arduous journey for you, but it’s one you’ve embraced in a way that is humbling to me.
    You were missed at the weekend, but I made sure I had at least one Magners. Maybe next year…

    Liked by 1 person

    • Hi Graeme! Thanks for the Magners! 🤩 Next time I’ll be there to drink one with you. I feel for you with that cough and the sleepless nights… hope you’re feeling better soon. Couldn’t tell at the Bash though. Wish I could have been there, it looked great fun.

      Liked by 1 person

      • I think my point about my cough was that it was a minor inconvenience. Your story gave me some perspective, and I’m going to shut up about it now!
        As you’ve said you couldn’t tell at the Bash, I take it you saw some of the live streaming. I haven’t yet. It was a great day, though, so much so that I forgot about the cough until I was back at the hotel (didn’t I say I was going to shut up about that?). I think the venue was the best we’ve had so far – it worked really well, and there was more capacity if we see a higher attendance in future years. Be good to see you at the next one!


  10. Ali, I just wanted you to know that I am praying for you, Connor, Carys and your boys as you all go through this very painful time in your struggle for doing what is the best for your little Angel. God has ALL of His Angels under his wings. I truly believe he will make all things good in his time. Diane

    Liked by 1 person

    • Thanks Diane. Carys is doing great, but she needs her sleep. I had to wake her up this morning and she really resisted. But, of course, typical Carys, she woke with a smile and a hug. The hardware lasted until 130am last night.


    • Hi Barb, thank you. Did I see pics of you at the Bash on Saturday? I finished my exams last Thursday so I’m looking forward to catching up with all my old blogging friends over the summer. Well, not necessarily old, but you know what I mean! 🤣


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