The Politics of Walking Pt4| An Unexpected Phonecall

See that face? It's the face of a little girl I love with all my heart. See that scar? It's not a facial disfigurement, its a badge of her triumph, courage, and beautiful soul.
See that face? It’s the face of a little girl I love with all my heart. See that scar? It’s not a facial disfigurement, its a badge of her triumph, courage, and beautiful soul.

My mobile phone rang this morning, and I saw from the display that it was Carys’s school. I answered with some trepidation; there must be something wrong.

“Don’t worry, nothing’s wrong,” said the voice of Carys’s teacher immediately. “I’m ringing with wonderful news! Carys walked about 50 steps today, all by herself, all the way down the classroom and along the hall…”

Well, I think you know me well enough by now to guess what happened next. Overwhelming emotion of any kind usually finds its release in tears, but this time they were tears of joy. They made the conversation a little one sided, I must admit, but Carys’s teacher didn’t mind; she was just as excited and emotional as me.

I phoned Conor. He was driving, but happily, he managed to avoid crashing the car. I felt like my heart was going to burst. From the sounds I was hearing, so did he.

In just under 6 months of corrective insoles in her shoes instead of AFO’s, a walkolong instead of a walker, and her new physio exercises for core strength and balance, she has gone from not walking, to walking 50 steps all by herself, of her own accord.

And if that’s not a miracle, I don’t know what is.

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

The Politics of Walking | An Update

Ooooh... which way will I go?
Ooooh… which way will I go?

Today, Carys’s walker was sent home from school with a note saying, “We don’t need this at school any more, we don’t use it.”

In other words, in the week and a half since I took the Walkolong into school, Carys is walking so well in with it, that she doesn’t need the standard issue walker her physiotherapist has insisted on for over six years.

I wonder what the politics of this are

I think you can guess how I’m feeling right now, which is just as well, because I couldn’t express it in words if I tried.

 

Butterfly Wings

Butterfly and dandelion

It has been such a bittersweet week. Carys has unexpectedly lost two of her CFC big brothers.

Craig was seventeen and lived in Scotland. He had battled through so many challenges, but had the biggest smile and most beautiful eyes you’ve ever seen. He couldn’t walk or talk; he couldn’t eat but was fed by a tube straight into his tummy; at night he needed to sleep with an oxygen mask, his bedroom was like a hospital room with all its monitors and machinery and medical equipment.

But that wasn’t what defined him. Courage, determination, love and a beautiful soul, that’s what I see when I remember Craig.

Jacob wasn’t much older than Carys. He put his whole being into his smiles and hugs. I watched his achievements, and he was an inspiration to me, a shining example of what could be accomplished.

Now they’re both gone. No more suffering for them, I know, but its still so hard to accept. Now it’s time for those they leave behind to suffer their loss.

As parents, so much of our day is spent simply taking care of their needs. Their not being here leaves such a huge void, not just in our hearts, or our arms, but simply in the time between waking and sleeping, and often beyond. What do we physically DO when they are no longer with us? How do we fill the time? How do we ever recover?

It has been said that they have earned their angel wings, and now they are healed. It’s a beautiful, comforting thought even for those of us who are non-religious. In Ireland, it used to be believed that butterflies carried the souls of the dead into heaven, and that the white ones in particular bore the souls of children. Perhaps there’s some truth in that, for I have seen butterflies everywhere lately; not real ones, its too cold for them just yet, but representations in picture and words.

And impossibly, unbelievably, in the midst of this sorrow comes joy. For us, at any rate, which kind of makes me feel guilty. How is it possible to experience happiness and sadness in one heart at one time?

Yesterday, I met with Carys’s PT and teacher. Carys demonstrated the Walkolong perfectly; she walked confidently and steadily up and down the packed dining hall, stopping traffic so to speak with her prowess and her unique walking aid.

It was agreed that she would now use it every day in school; in fact, her teacher told me she really believed Carys would benefit from it. Today Carys walked all around school and even outside to the playground and back in it… she was so tired from all her exercise, that she fell asleep waiting for the bus to bring her home!

When I think of our CFC children, I think of butterfly wings; bright and beautiful, fragile and easily bruised, a blaze of glory in a world which would be sadly lacking without them, no matter how short-lived.

The Politics of Walking

I discovered in a phone call yesterday that Carys’s potential to one day walk is not down to her physical development, or physiotherapy, or even budgets and funding, or lack thereof.

No. It’s down to politics.

You will no doubt be aware of the ongoing saga of the AFO’s. After several return visits for ‘re-assessment’ and further ‘fittings’, they still don’t fit; how her previous therapist suggested she should just bear the pain, or wear them for an hour a day, because it was better than nothing. Here we are, nearly a year later, and Carys still doesn’t have a pair of AFO’s which fit her.

Her physiotherapist, in that same phone call, informed me they (either the company which makes them, or the product itself, she wasn’t clear which, but ultimately it boils down to the same thing) were ‘shit’… her word, not mine, although I am inclined to agree with her.

And I have finally been pushed into reaching that point where I have lost all confidence in ‘the system’.

I believe the HSE has failed Carys, and I have allowed them to do it.

I could fight, and I applaud those who do, or I can put my energies into something more productive for Carys.  I have chosen the latter.

I have taken advice and guidance from someone who, in the few short weeks he has known Carys, has already made a difference.

Back to basics we go; Carys is double jointed at the hips, hence she has no strength and power there, and her body is all out of alignment. No wonder she can’t walk, or even stand without support. I had always wondered at her lack of balance. No one seemed to have any answers.

Now I know that we have to work on her core muscles for stability and balance. Her brain needs re-educating with regard to moving her body. We need to build strength. We have a looooong list of exercises.

It’s starting to work. She wants to walk. She tried to climb onto the sofa the other day, and on another occasion, I found her standing on top of her toybox. I nearly fainted… how the hell did she do that? She has never previously tried such things.

Forget the AFO’s. The problem was never her ankles, it is her hips. Six years she has worn those things, with not even a sniff of improvement. Imagine your foot being held rigidly at a 90 degree angle inside a thick heavy hard plastic casing from your toes to your knees… this is supposed to help a child who has never walked learn to walk? Not surprisingly, it hasn’t. If you don’t work a muscle, it wastes, right?

On Sunday, Carys was fitted with orthotics for her pronation. We put her on her feet, and immediately, she stood for 20 seconds all by herself, without a wobble, without holding onto anything or anyone. It was an amazing moment. She proceeded to walk up and down the shop quite happily, holding onto one hand. She then walked at short intervals around the shopping centre. Happy. Normally she hates shopping centres and crowds.

Forget the walker. She’s had it since she was three. She’s now nearly ten. She still can’t steer it, or do anything but walk in a straight line with it, at a painfully slow rate. If it catches on a wall or door frame, she’s stuck there, unless someone rescues her.

At home, we are using her Walkolong. It is a foam tube which wraps around her chest and fastens with two straps which the parent hold onto the ends of. It offers a little support, if she needs it. She walks all around the house. We no longer need to carry her from one room to the next. She chooses where she wants to go, at what pace, stops when something catches her interest, continues when she’s ready. A taste of independence. And she’s loving it.

So much so, that I suggested during my telephone conversation with Carys’s physiotherapist that I bring one into school for her to use there.

“I don’t know,” was her reply. “I’m not sure what the politics would be about that.”

I came off the phone incensed. I thought we were all working towards the same goal. I thought the important thing was Carys’s mobility, her independence, her enjoyment of life, her well being. Seems I was wrong about that.

I understand the need for safety. I wouldn’t expect anyone to compromise that. But its about time the HSE crawled out of the dark ages. Their politics will not help Carys, or any child, walk.

I will do whatever it takes to help my daughter achieve her full potential, whatever that turns out to be. And I feel hopeful again that one day, she may be able to walk a little.

Won’t that be something?

Life’s Little Victories

Me and my girl
Me and my girl.

I have a lot to be thankful for today. Carys has a new physiotherapist. I really like her because she cares about Carys, she works with her, not against her. She smiles and sings songs to get Carys comfortable. After only a few sessions, she has already found out which was Carys’s favourite nursery rhyme.

When she rang me and said, “I’m ordering a review of Carys’s AFO’s. I’m concerned about the marks they’re causing on her ankles, and she’s not walking well in them,” I almost burst into tears… so I wasn’t a paranoid mother, after all. At last, someone was listening to me. It was a small, but important victory.

Yesterday, we had that review, and the physiotherapist actually came with us. It turns out the fit is not right, and the AFO’s have been sent for adjustment. We have a plan in place; if in 4-6 weeks, she is still not able to use them, she will be recast for new ones using a thinner, lighter plastic moulded to enclose more of her ankle.

If you remember, the previous physiotherapist had told me that Carys just had to endure them regardless. I wonder how long it would have been before Carys gave up trying to walk completely because of the pain her AFO’s caused her.

As if that wasn’t good news enough, I was also told that Carys is walking well without her AFO’s, and that she must spend part of each day walking without them. The little victories were coming thick and fast.

When I got home, I rang Conor with the good news. He said a lovely and unexpected thing to me. He said, “To be fair, Ali, every time you have had a concern about Carys, you have been right.”

It’s not very often that I’m speechless, but that did it.

The other day, I found a shampoo online that doesn’t need to be used with water. Who knew you could get such things? You massage it into dry hair and towel dry. Last night we gave it a try; Carys lay on her bedroom floor with her head in my lap, listening to her favourite music, and giggled while I massaged this new shampoo into her hair. Five minutes, job done, hair clean and sweetly scented of apples.

This morning, I showed Carys her toothbrush. She smiled and opened her mouth wide while I brushed and brushed and brushed.

In themselves, these are tiny victories, but their impact is huge. The triumph of many seemingly insignificant little battles often win the war.

Of A.F.O’s and Tooth Decay

Carys's AFO's look much like these...
Carys’s AFO’s look much like these…

All this week, Carys and I have been ‘coping’ with her new A.F.O’s. A.F.O’s are not to be confused with U.F.O’s, although lately, I’ve been wondering about that… Useless F…ing Objects, I think, is the more appropriate terminology.

For the uninitiated, A.F.O’s (Ankle Foot Orthoses) are little plastic leg braces which hold the wearer’s foot in a better position than they are naturally wont, providing support and good posture. They are supposed to help with walking. That’s if they fit the child’s foot. And if you can get a shoe to fit the brace. Doesn’t sound so difficult, does it?  Continue reading