The Politics of Walking Pt 3 Carys is WALKING!

carys

It happened last Wednesday, and I’ve been dying to tell the world ever since. But I needed to be sure it wasn’t a once off thing, a fluke, a happy accident. I also needed to be sure I wasn’t dreaming, because when you want something so bad for so long, sometimes you see what isn’t really there.

Carys came home from school, and as I was helping her walk across the room, something just made me let go. I don’t know why. Carys was babbling at me in a very loud and determined manner; maybe she was telling me in her own way that she was ready, and on some level I was able to interpret that.

So I let go, and she took a very stiff awkward step forward. BY HERSELF. I held my breath. She was very aware I was not supporting her, hence her sudden clumsy movements. She obviously felt vulnerable. I very calmly and quietly urged her on. Inside I was screaming and doing a little tap dance of joy, but I held it all tightly in check so as not to distract her.

She took about 10 steps all on her own and then stopped by her toys. It was quite clear she was done for the day. I put on her favourite DVD, and left her to it.

And then it hit me. The enormity of it. The wonder. The gratitude. The future. And what her true potential might be. Suddenly, my own legs went wonky, and I had to sit down quickly and let my emotion vent.

The irony is, just that very morning, I had had a phone call from her HSE physiotherapist. “You know why I’m calling, don’t you?” were her first words. Bearing in mind the HSE’s fixation with AFO’s, clearly the answer to all non-walker’s problems, it wasn’t difficult to guess.

“She had her fitting a few weeks ago. I’m just waiting to find out when they’re ready,” I replied.

“Good, because she’s just not getting enough support with her shoes,” she said. What she really meant by that was the orthotic insoles I had bought for her shoes, which my privately employed physio had recommended. And following which her standing, walking and confidence had rocketed.

Carys has had AFO’s for seven years, and never showed any signs of walking independently. Four and a half months of wearing the insoles in her shoes instead of the AFO’s, using the Walkolong instead of the walking frame, and working on developing her core for strength and balance, and she is already taking her first independent steps.

Excuse me if my confidence and belief in the system which is supposed to help children like Carys has taken a sudden and complete nose-dive.

Every day last week, she walked a few steps, but never in front of Daddy. By the time he got home from work, she was too tired. I began to wonder if it was all in my own head.

Then on Monday, a note came home from her teacher saying she had walked on her own at school too. I was ecstatic!

And I learned that you can never give up hope, no matter how impossible a task seems, nor can you ever give up trying. Also, don’t be afraid to think outside the box, and try new therapies and treatments… they might just work.

My special little girl has started walking. Isn’t that just amazing?

The Politics of Walking
The Politics of Walking | An Update

85 Comments on “The Politics of Walking Pt 3 Carys is WALKING!

  1. It seems in my haphazard way of reading blog posts that I missed this moment, so by now I’m sure Carys walking has become the norm for you… (I know – it doesn’t work like that.) So congratulations are belated, but it’s thrilling to know things are improving. No tears at this end (I’m not a real man yet), but a lovely warm feeling that has nothing to do with my bladder control. I’ll have to be a bit more structured so I can follow the progress properly. Can’t put into words how pleased I am for you

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  2. Oh, Ali, I am so happy for you and Carys. I have tears in my eyes. It is so wonderful to see your little girl making such HUGE progress. God bless you both and may there be many more milestones in your futures.

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    • Thank you, Noelle! Actually, we did have something significant happen yesterday… Carys actually reached out and petted our dog, Indi, twice yesterday evening. Normally, she completely ignores him. He responded so calmly and gently. It was a lovely, touching moment.

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  3. That is truly amazing and I am so happy for you and especially for Carys. I was born with a club foot and they didn’t think I would ever walk properly. At 40 I had tendon surgery and they said I would always have a limp. Neither happened and I walk very well. What a lovely little girl, Carys is – you must be very proud. K x

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    • Thank you, Kerry! She is a sweetie… most of the time, but she has her moments, too! That’s great news that your surgery was so successful! But it was a long time to wait till you were 40… brings new meaning to the saying ‘life begins at 4o’, doesn’t it? How did you manage before?

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      • Both were separate events. I was walking normally by about 3 years and then at 40 slipped a disc which caused my tendon to contract. Likely they were connected events as my spine is congenitally wonky (is that a medical word?) πŸ™‚

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        • Thats my kind of medical terminology, Kerry, lol! I understand you perfectly! So the surgery for your disc also corrected your tendon? Were you expecting that to happen? Anyway, glad it all worked out so well. 😊

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          • I can’t have surgery on my wonky spine so they cut open the bottom of my leg and yanked on the tendon to straighten it, then sewed it up. How is that for medical terminology? I was lucky to get a visiting world expert in tendon repair in Aberdeen because my spine caused every other surgeon to be perplexed. Sometimes I wonder about why this has happened to little Carys and others but I also believe in fate. I bet you are stronger than you ever thought you would be. K x

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            • That’s for sure! You too, I’m thinking. Yup, the terminology was certainly descriptive, I’ll give you that, lol! Never knew they could do such things, how amazing! 😊

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  4. Ali, this is an amazing and wonderful accomplishment for Carys and for you! You, the loving mother who has devoted countless hours to Carys’ physical therapy exercises as well as caring for all of Carys’ special needs for all of these years. You, the loving mother who has searched for knowledge and answers not provided by the professionals entrusted with Carys’ care. I am so happy for both you and Carys. Since Carys is such an independent spirit, I am sure she will enjoy her newfound freedom and move on to achieve even more. Lots of love to you both!

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    • Thank you so much, Rachele! You just moved me to tears! The proffessionals do a great job, its just that they dont look at these kids as individuals. If the usual care doesnt work for one child then they fall through the cracks. Maybe they think oh well, its only 1 child out of all the many I’ve treated. Probably they don’t have the time or resources. I dont know. Itvis very frustrating. But anyway, Carys is doing well, and thats what matters. Xxx

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  5. Hi Ali – so glad to hear your news. It is not surprising that your instincts and ideas about Carys have been proved right – you are her mother, you love her and you are with her a lot more than any expert who may see her only for 15 minutes now and again.
    They tell you to persevere with aids that hurt Carys – seriously, do they think a child who has pain when they move will want to move more? Surely some kind of common sense should have prevailed. Maybe if they said persevere for a few days and then revisit the situation and adjust the AFOs would make sense. No wonder you are losing faith in the HSE.
    Keep trusting yourself and best of luck with the next stages x

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    • That was my point with the AFO’s… that they’re meant to help her not hurt her. She would stand with one foot in the air, not daring to put it down. And the horrid marks on her ankles that took all night to go away. Ugh! Do you know the girl at the last fitting didnt even want to see her walking? How does she know they are right for her if she doesnt even see how she walks? They’re just not interested. So yes, I will continue to listen to my instincts… my husband says they’ve never been wrong yet! πŸ˜€ its finding the right balance between expert knowledge and parent knowledge. Wish someone would tell the experts that!

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      • What the supposed experts have been telling you makes me so angry! Your instincts haven’t led you wrong, Ali, and it’s made all the difference. You’re more of an expert than the experts. πŸ™‚

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        • Only with Carys… maybe! You just do the best that you can for your children, and muddle through somehow. The way things were going, though, we couldn’t have done any worse!

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  6. Ali, I am SO HAPPY for you and Carys! I hope Conor has gotten to see her walk by now. What a HUGE ‘Happy Day’ for him! As I was reading through the posts above and saw the one form Sue, I wonder how long it took fo rhim to start riding after he was walking? Is this the next thing you will work with Carys on? It’s always nice to have goals to set.

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    • Thank you, Diane. We will continue with the walking and the core exersizes… she still loses her balance quite easily if distracted, and will only walk a few steps on her own. I’m actually trying to get her to make vowel sounds, so we can work on communication. A little bit of independent walking and a little bit of meaningful commnication would rock our world! πŸ˜€

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  7. It’s Amazing and fantastic and the best thing ever (so far). I’m glad you stuck to your guns on the alternative treatment.I’m sure Conor and the boys will be ecstatic too.
    xxx Massive Hugs xxx

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    • And massive hugs to you, too, David! The boys have visions of Carys playing football on the lawn with them! I dont know if thatvwill ever happen, but its a lovely thought.

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  8. Yep real men blubb and wear pink. Me too. Just liquidise all the comments and congrats you’ve had and boil into a concentrate and that’s what I want to send your way. Great news for Carys, you, Conor and you boys too who can reach her football. As for the incompetence of specialists I read so much about parents who live cheek by jowl with the subject and who aren’t listened to enough. If there’s a good thing to come out if such crap it’s the increased confidence you will have to second third and fourth guess the experts. Supermom awards will surely follow!

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    • Ah thanks Geoff! 😊 I have always been intimidated by experts in any field. Carys has made me challenge that a bit. I have to question it, she cant do it herself, and twice now I’ve found another, non conventional way to treat her which has helped. Having said that, I wont take any risks with her health and safety. But Im happy to have been able to do that for her. Sometimes the experts forget that the parent knows the child best. I have a lot of respect for people who are knowledgeable, and two of my children have had their lives saved by such people. But there needs to be flexibility, too.

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      • It’s all about listening to your experiences, isn’t it? You have to know her intimately. But they have the knowledge and skills to add not override. Generally they are brilliant but not when they know best in spite of…

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        • Thats exactly it, Geoff. Doctors kept 2 of my three childen alive. A few generations ago, they would have died shortly after birth. There is no way to express gratitude for that… thanks just isnt enough. But sometimes they need to forget their own importance and listen. 😊

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    • Thank you! I could just see after all these years she hadnt progressed, and I felt that she could. We had to try something else, and I’m glad we did. 😊

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    • Thank you! Yes, real women cry too! Lol! I cry all the time, and thats what I tell myself too. 😁 Isnt it strange that happiness and sadness can both bring on tears?

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  9. I am extremely happy for you and Carys, Ali, as the joy of seeing a little one taking her independent steps, after so many years, is something that knows no bounds. May heavens strengthen those legs for greater and easy mobility towards attaining whatever goals she may set her eyes on in the growing years ahead. For now, it is my most cordial wishes to you and lot of love for Carys… Raj.

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    • Thank you Raj for your beautiful words and wishes! It is a very happy time for us, that is for sure. A few months ago, Carys walking was something I could only wish for, now it is a reality. Who would have thought that?

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  10. I am so completely thrilled for you and for Carys – how wonderful! (though very disappointing about her HSE therapist). But yay! doing a happy dance over here for you both xx

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  11. Oh Ali πŸ˜€ πŸ˜€ πŸ˜€ This is such fabulous news! I’ve been holding my breath since those ten steps the other day!!!
    On the subject of AFOs and the support offered by ‘the system’… I agree with you. Nick’s rovided AFO did sod all to help. His privately bought and hinged one… he now no longer needs. It has done the trick and he’ll only use it on the bike. The same with the provided insoles… but at over a thousand pounds for a custom made AFO, how many people can afford them on a care budget?

    Huge, huge and joyous hugs to you both! xxx

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  12. I’m a big, macho guy and all that, but I teared up. I’ve been following the politics of walking, and I’m just so happy for you! I bet you have some choice words for her HSE physiotherapist…

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