aliisaacstoryteller

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.

A Parent’s Hopes and Dreams for their Special Needs Child

Carys modelling her Santa top, Christmas 2014

Carys modelling her Santa top, Christmas 2014

It’s 2015… Happy New Year! As it begins, and life is restored to normal after the frenzy of festivities, we turn to reflection on what has been, and what is to come. The turning of a year is a time to renew hopes and dreams, make plans, set goals and stride out confidently along the path to achievement.

Yet more often than not, our New Year Resolutions, which begin with such good intent, often fizzle out in failure, rather than sizzle with success. The reason for that, is that we apply a little too much of the dream to our hope, instead of tempering it with a touch of realism. Overdose on that realism, though, and the hopes and dreams disappear; one will never achieve anything.

This new year is also my daughter Carys’s ninth one. I am well aware of the significance of the ninth year. I felt it with both my sons, but never as keenly as I do now. In Celtic terms, three is sacred; nine is three times so.

A child’s ninth year is the last of his babyhood. It begins the headlong rush into puberty, and the rampant teens, which in turn precede the race into adulthood.

I watch this transition in my boys with awe, fierce joy, and a touch of sadness, as I trail disconsolately along the sidelines. They are chasing dreams of their own, and I can only hope that in pursuing mine, I have helped set their feet on a clearly marked path, one which life’s adventures does not allow them to deviate from so greatly, that they are unable to find their way back to it.

So what are my hopes and dreams for them? Much like any other parent, and in no particular order; that they enjoy learning, and are stimulated by it; that they find their niche, their talent, be it music, drama, art or sport, and nurture it and are fulfilled by it into adulthood, that it never goes to waste; that they respect and accept those who are different; that they develop interests which occupy their free time and intrigue them all their lives; that they establish a career which brings them challenges and satisfaction throughout its lifetime; that they travel the world, and experience other cultures; that they earn enough to never struggle with paying a bill or affording a holiday, but not so much that they forget the value or privilege of money and all it brings; that they are prepared to work hard for what they want and the people they love; that they are strong enough to shoulder the burden of responsibility; that they have a forgiving sense of right and wrong; that they never know heaviness of spirit, but that they experience sorrow in some measure, that they may appreciate joy; that they develop strong bonds in their friendships; that they never lose their whimsical sense of fun; that they laugh a lot; that one day they find their soul-mate; that they give a little back to the community in which they live.

Not so much to hope for, right?

Once, not so very long ago, I used to dream of those things for Carys, too. I pinned my hopes on physiotherapy, occupational therapy, speech therapy, special education, and my zealous efforts to repeat it all at home. Once a week, I drove her an hour each way to music therapy, which she hated and I could ill afford, because I heard that it had miraculously unlocked the power of speech in autistic children.

We chose our house because it gave us room for walkers, wheelchairs, lifts, and hoists. It also had a double story garage, perfect for adapting to our semi-independent special needs teenage daughter in the future.

Hopes and dreams. Every January, I’d look at Carys and think to myself confidently, “This year, you will walk. You will say ‘mama’.”

She has been this close to walking and talking since she was three. No physical reason has been determined for keeping these abilities from her. Still, I’m waiting.

The New Year has come and gone. Surprisingly, for the first time, it passed me by with less yearning and more contentment than ever before. And I did not look at Carys with renewed expectation.

Does that mean I have lost all hope, or forgotten how to dream?

Of course not! I have just modified them, and distilled them down to what really matters.

So. my beautiful, special little daughter, who is as much a mystery to me today as the day she was born, here is what I wish for you this, your ninth year; that you stay well, suffer no pain and endure no nasty treatments; that we continue to work together to find a means of communication which works for you; that you walk if and when you are good and ready, but most of all, that within the confines of your life, such as they are, you experience nothing but happiness and love.

Because if it’s good enough for you, then it’s good enough for me, and if you’re content, then so am I.

For Our Lost Children | A Poem

Butterfly and dandelion

Another morning dawns bright and clear,

a winter’s day, cold and still.

I should be glad,

but I’m gripped by fear,

heart heavy, slowed by an aching chill.

I feel only empty and sad.

*

I miss their smiling faces.

They smiled a lot. I see them everywhere,

just a fleeting glimpse, a flash of light,

then they move on to other places.

Stuck in the moment, I can only stare

into the void left behind by their flight.

*

They were too quick for me, for us.

They lived their whole lifetimes

before we were ready to let them go.

So we endure, comforted by memories, pained by loss,

guilty of love, of ignorance, of hope, our human crimes.

We did our best, I hope they know.

*

Life goes on, we are told,

but for a while it passes us by.

Lazy is Time; sly, cruel, unkind,

beating us with remembrances, ragged and bold,

softening emotions, smoothing grief while we cry,

eventually bringing peace of mind.

More than just a Toothbrush

wpid-20141112_105946.jpgLast week, Carys got a new toothbrush. Not just any old toothbrush, but a Dr Barman’s toothbrush. It has a flat head which looks like two tiny brushes stuck together at an angle. It fits perfectly over her teeth. What’s more, she likes it, and accepts it into her mouth. Score!

But that’s not all… Read More

To Grow or Not to Grow | A Parent’s Decision

carys

This week, we have been called upon to make a tough decision about Carys.

She’s very small, about the size of a five or six-year-old, yet in nine weeks’ time she’ll be nine years old. Her hands and feet are tiny; she wears a shoe in an infant size 10 (Euro size 28, Us size 11), and it still has plenty of growing room. I believe that size equates roughly to the size of the average two-year old. Told you she was small.

All the blood tests have consistently indicated that she is producing growth hormone; it’s at the lower end of the scale, but it’s still within normal limits. She has grown in the past 18 months… by a whopping 6.5cm – woohooooo! But it’s way below where she should be. Read More

Genetics

DNA

Re-blogged from Monday, November 21, 2011. With a few small updates.

There is a great article in the Irish Times today about the Reproductive Revolution which is currently taking place in Ireland. It concentrates mainly on infertility and IVF treatment, but this area, I’m sure the next two instalments of the article will show, is only a small part of it.

We have all heard the gruesome stories of couples aborting a foetus because it was female, and not the male heir they wanted. That wouldn’t happen in Ireland, right? Couples seeking IVF can select sperm donors based on the colour of their skin/ hair/ eyes, how intelligent they are and whether they hold a good job or not. Fair enough, you might say…or is it? Because it’s only a matter of time before couples may be able to apply these selection techniques to their own genetics.

Relating this to my own experiences, I have to say the answer is not so clear cut as one might think.  Read More

Attitude

Red heart and a stethoscope

Re-blogged from Tuesday, October 25, 2011.

When a child is born, we are so full of hopes and dream. How frail those dreams are, how easily dashed and broken.

Whilst I still carried Carys around within my body, knowing only that what she had was fatal, but not knowing what it was or why she had it, my most daring dream was that she would be born alive so I could hold her and look into her eyes, and tell her how much I loved her. Just five minutes of life, that was all I dared ask for.

I didn’t know then how feisty, how determined, how powerful my little daughter was. Despite everything medical research and doctor’s experience told us, she hung on in there and fought and struggled against all the odds to hold on to this precious scrap of life she had been given, whatever it’s baggage. Read More

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?  Read More

Chancer

Carys loves sleeping in her safety bed tent.

Carys loves sleeping in her safety bed tent. You can guess the level of her excitement by the blur of movement with her hands!

Carys was crying angrily. She had been crying angrily for three days. I had to give her credit for such a consistent sustained campaign. It was certainly wearing me down.

At midnight, I shut down my lap top, and poked my head through the bedroom door. “Should I go in to her?”

Conor was sitting up playing games on his I-phone. Even he,  normally so expert at falling asleep anywhere, at any time, could not doze through that. “You can try,” he replied wearily. “But I’ve just been in. Nothing I do or say seems to make any difference.”

I knew my presence would not have any effect either, but I just wanted to hold her. I crept quietly through the gloom of her room. I could just make out her thick mop of curly black hair in the shadows of her cot.  Read More

Ugly

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it's already starting to push down on her eye lid.

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months. You can see here it’s already starting to push down on her eye lid.

The birth of a child with a rare syndrome like Carys is truly a lesson in human nature, your own as much as anyone else’s. It’s like taking a trip into the dark side of your soul. It’s not somewhere you want to get lost.

On this journey, we discover many ugly emotions lurking beneath our skins on a scale we never thought ourselves capable of; anger, despair, jealousy, shame, sorrow, confusion, self-pity and depression, to name but a few. And worst of all? Read More

Perfect

Nobody's Perfect Concept

I first became aware of this strange human condition in junior school. We had been set a project by the art teacher. I wanted my picture to be perfect, the best I could make it, so I was most taken aback when she instructed me to put down my ruler. “Nothing in nature has a perfectly straight line.,she said. She pointed out the curve of the horizon, the undulation of the playing field, and I realized she was right. I was to find in later years, that even things man-made are not always perfectly straight, when it came to decorating my first home.

This search for perfection can be quite destructive. We’ve all witnessed the pushy parent, the anorexic, the ‘keeping up with the Jones’ types; they’re all sad reflections of our insecurity and desire for perfection. Yet nature saw fit, (or God did, depending on your viewpoint), to gift mankind with all the flaws of what it is to be human. Some of us were made more flawed than others.

Take my daughter, Carys; she was born with CFC syndrome. Cardio Facio Cutaneous Syndrome. Quite a mouthful. It has to be. Anything less would not do it justice. It makes her less than perfect. But what does it mean?  Read More

Perception

Coffee cup

“She’s retarded!”

The word slipped out and hung in the air like a banner between us, dancing with flashing lights and big pointy arrows. There was no clawing it back through the shocked silence which followed.

Such an ugly word, yet it had tumbled from the mouth of a friend in defence of my daughter, not attack. Brief as it was, however, it spoke volumes. For an awkward moment we regarded each other warily, neither of us quite sure how to react. In her shoes, I would have apologised, but she chose to simply look away, guiltily I like to think. There was no retraction, no offer of apology. Wearily, I decided to forgive. After all, it was just a careless throw-away comment between friends, wasn’t it? Just a slip of the tongue. Or was it a sign of something deeper, darker?  Read More