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Carys on holiday 2013

Carys on holiday 2013

I bawled in public again on Friday. I don’t know why I can’t seem to keep my emotions in check these days. I had gone to Carys’s school to meet her new Occupational Therapist. Halfway through the session, and the tears started to fall.

“Why are you crying?” she asked, handing me a wad of tissues. I couldn’t really explain. It was a whole crazy confused bunch of things I had absolutely no ability to extract and define at that point. Having had time to think about it, it has become a little clearer.

As a result of that meeting, today we started the Wilbargar Therapressure and Compressions Protocol. It’s a pretty intensive treatment for Carys’s multiple sensory defensiveness. It involves performing a particular treatment every ninety minutes between waking and sleeping for the next three weeks, after which she will be re-assessed. If the treatment has been successful, we will hopefully then be able to reduce the frequency.

So what does it involve? Well, we have a special brush with which we have to brush Carys’s arms back, legs, hands and feet. It requires deep pressure. This is followed by compressions of the joints. All told, it only takes about five or ten minutes.

But how does this help? It’s kinda complicated. From my understanding, there are two basic pathways feeding information to the brain. One is just for general info, the other is for ‘flight or fight’. In children with sensory defensiveness, all the info they receive, even that which is harmless and benign, gets fed into the wrong pathway, the ‘flight or fight’ one. It’s sensory overload.

This is what got to me. Imagine walking all alone down a strange dark alley in the middle of the night. Every sound, every shadow feels like a threat. There’s no one to help you. It’s unfamiliar and terrifying. Your body is on high alert, anticipating that something bad will happen.

We’ve all been in a situation like that at some point in our lives. Can you remember how it felt? Imagine if that happened to you every day. If you lived your life in a constant state of high alert and fear.

You’d be exhausted. You’d be nervous. You might react inappropriately. You might lash out aggressively at a perceived threat. You might not be able to eat or sleep. You’d be distracted, anxious, emotional. And you’d be misunderstood.

Well, this is how it often feels to suffer from sensory defensiveness. We know this because, although Carys can’t talk, other children can, and have. And that is one of the reasons why I cried. Carys will be ten years old in a few weeks, and all this time I never realised how she was feeling.

It’s no wonder she never wanted to leave the safety and familiarity of her room; why she played up so badly last year on holiday; why we have had so many issues trying to take her out to restaurants and on family days out. And the more we tried to familiarise her with these places, the worse it got, not better.

As I sat there, listening to all this with tears and snot streaming down my face… yes, sadly, I’m not a pretty, film star style crybaby… I realised that what this woman was proposing could work for Carys.

When she was a baby, I had taken her to a baby-massage class which had significantly improved her defensiveness against touch, particularly around her chest, shoulders, neck and head. She still enjoys massage now. She enjoys Reiki, and she loves nothing more than a full on cuddle!

And then I felt hopeful, that no matter how intense, time consuming and temporarily debilitating it might be for me personally, here was something which might actually make a significant improvement to Carys’s life. My hopes and dreams for Carys had been renewed. And that was another reason why I cried.

How lucky we are!

I left feeling humbled and grateful for the events and people who had brought this young woman into our lives; grateful for her knowledge, and grateful for the research which had created this procedure in the first place. I’m also grateful for Carys’s teacher, who is willingly sharing in the burden of all of Carys’s care, from her education and development, to physio, and now this. And that was also why I cried.

You can read about the Wilbargar Therapressure Protocol here. You can read about sensory defensiveness here (Carys has most of them). Finally, you can read a really touching blog post by author and blogger Rachel Carrerra who describes what it feels like very movingly.

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

End of an Era

On Friday, Carys finished her last week of school for the year. It was a really sad day, because next term, she will have a new bus driver.

Edmund has been taking Carys to school for five years. Come rain, hail, fog, frost, snow or shine, he reliably turned up every morning with a smile and a joke, and there was no one else I would rather entrust my special little girl to. I always knew, from the first moment we met, that Carys would be safe with him.

He loved all the kids on his school run, knew them all well, their little moods and quirks and funny ways, what made them tick, when to pander to them, and when not. They all loved him. Carys was always happy to see him.

No matter how sleep-deprived the previous night had been coping with Carys’s needs or health issues, Edmund always cheered me up.  He loved the kids, and he loved his job. Where disabled children are concerned, being their bus driver doesn’t mean simply driving a bus.

He hasn’t retired. He isn’t ill. His bus hasn’t conked out. He hasn’t lost his drivers license, sold his bus or emigrated. Every year he dutifully put in his tender for Carys’s school run, and every year he was forced to shave it back if he wanted to keep the business. This year, someone somehow managed to massively undercut his bid.

Strangely, he’s not the only one, and there has been quite an outcry. It is yet another example of disabled children being treated without regard. And I am concerned that someone who can slash costs so readily may be more interested in pursuing their own profits than the well-being and safety of the vulnerable special needs children entrusted into his care.

I cried when I said good bye to Edmund. I watched him say good bye to Carys, and my heart ached. It might as well have been goodbye till next week, or next term as far as she’s concerned. Although her lack of understanding may protect her from sadness, which arguably could be a good thing, it also keeps her locked in the dark. In the future, she may well wonder where he is and why he has abandoned her, yet not be able to express it.

I know that people drift in and out of our lives as often as clouds drift across the sun, bringing their light, or shadows, with them. Some leave an imprint behind as they move on. And sadness fades with time. It’s all part of the process. But sometimes, it’s really hard to watch them go.

#1000Speak for Compassion | Skin Deep – The Relationship between Beauty and Acceptance

Skin Deep

I don’t like moths. I don’t like how they enter my house uninvited, fluttering blindly about, and cluster in a seething panic around any available light source. The frenzied flapping of their dull, tattered wings gives me the creeps.

But I love butterflies. When they gate-crash, I feel privileged, blessed, and patiently herd them out to freedom for fear their short, beautiful lives might meet an untimely end within my four walls.

When I found a glorious creature with stunning red and black markings walking determinedly across my doormat one spring morning, I assumed he was a newly hatched butterfly ready to test his wings. I opened the door respectfully, and watched him take flight.

Imagine my surprise when I discovered he was actually a day-flying cinnabar moth. Who knew that moths could be so gorgeous, or that some of them flew by day and not in the shadow of night?

I was struck, then, by my own superficiality. Me, who should know better. How shallow it is to accept only that which is beautiful, never looking further than the skin-deep. Why do we make classifications and judgements according to how pleasing something appears to the eye?

I suspect it’s a primeval thing, some kind of survival skill buried deep within that well of instinctual behaviour we no longer understand or need. Perhaps surrounding ourselves with beauty masks something ugly inside that we try to suppress. Perhaps associating with the beautiful makes us feel good about ourselves. Maybe it ‘rubs off on us’.

Acceptance, whether it’s social or personal, requires approval and a non-judgemental state of mind. Being accepted gives us a sense of belonging. Ultimately, that’s what we all want, isn’t it? It’s what we’re all searching for in our own convoluted ways. But does being beautiful increase the chances of being accepted?

I was bullied at school, for many reasons; I wore thick glasses with National Health frames (definitely not beautiful), I didn’t speak with the local accent, so I was (wrongly) presumed ‘posh’, and I arrived in school only six weeks before the end of the school year. Bonds and social groups had already been formed. There was no peer pressure to try and ‘fit in’; I was a stranger, and I simply wasn’t wanted. And they let me know it.

When I left school, I rebelled against this unfriendly society which had not found it possible to accept me. I defied their traditional, conservative, insular attitude.

It was the 80s. Electronic music, big hair, frilly clothes and wild makeup was all the rage. I hid behind this flamboyant façade, and joined the wave of New Romantics which swept the nation’s youth. They were heady days. It was an acceptance of sorts.

But I had to grow up. I didn’t want to work in an office or in a factory, so I joined the RAF instead. Thrown into what seemed like chaos to us, a disparate band of females learned to pull together, accept one another, and become a team. Then the RAF split us up and sent us reeling in different directions, but it didn’t matter, because by then we were part of the machine. Acceptance was built in.

The tides of time washed me in its waters, sometimes soothing, sometimes stormy, but always eventful. I drifted, adding the roles of wife and mother to life’s CV. That’s when I ran aground, the meaning of acceptance suddenly rocketing to a whole new level.

My daughter was born with a rare syndrome, but we counted ourselves lucky, for she was never expected to live at all. Two days later, a tangle of blood vessels began to bloom on her forehead. It was the beginnings of a birthmark, a haemangioma, and it grew with a speed and virulence which astounded me.

Day by day it expanded, turning a deep, shiny red, a sinister parasite claiming its place on my daughter’s face. The surface began to wrinkle and pucker, forming little hills and valleys, a menacing roseate island in the soft smooth sea of her forehead.

People love to look at babies, have you noticed? A brief dip into Facebook or Pinterest throws up endless rounds of cute or amusing baby pictures with associated entertaining quotes. When my two sons were babies, I received many smiles and compliments from strangers, who looked into the stroller upon my boys’ perfect faces.

That didn’t happen with Carys. Oh, they gawped eagerly enough. Sometimes, they raised their eyes to mine in shock. Mostly, they just craned their necks and stared at my little girl as if she was something they had just scraped off the bottom of their shoe.

I can’t describe the pain that ripped through me. She was so innocent, had done nothing to anyone, just fought fiercely against all the odds to cling to the dirty, ragged scrap of life tossed her way.

When she was only four months old, she endured a long surgery to remove this ugly complex lump in the hope of saving her sight. With the haemangioma gone, I thought we would simply disappear into the masses, nothing worth seeing. But I was wrong.

The wound developed a thick black crust. The edges were loose, and constantly seeped, but the doctors were happy, it was progressing exactly as they wanted. Now when people stared at Carys, their gaze quickly shifted to us, her parents, and I could see what they were thinking; were we simply neglectful parents, or abusive ones?

Carys, and other children like her, fall into a minority group which society as a whole has not yet found itself able to accept. True acceptance would, by definition, require the majority to allow the full integration and participation of the minority in all aspects of society. Even in these enlightened times, that doesn’t happen.

For example, Carys must go to a ‘special school’, which is tucked well away from the community where she lives. There is no other option. I resent that. Although the school is excellent, I would like her to attend our local school, which ideally should have an attached special care unit for disabled children.

How wonderful if Carys could be visited by her brothers during her day ay school; how wonderful if the children from the mainstream school could integrate with the disabled children, help them, play with them at break, grow up never being afraid of them or developing ignorance and prejudice against them.

It’s as if society doesn’t want to be affronted by the sight, or blight, of disabled people. We hide them away and pretend they don’t exist.

When participation in society is confined to only certain areas, then the majority is only practising tolerance, not true acceptance, as we can see here. Tolerance and acceptance are not the same.

A decade later, Carys’s haemangioma is just a shadow of its former self, the scar has faded, but she still looks obviously ‘different’. The dangers of her syndrome are hidden within, where they can’t be seen and gawked at. People still stare, but not as much. I am less inclined to accept rudeness, but am also better able to let it go.

Being Carys’s parent has broken my heart many times over, and filled and refilled it with more love and hope than I ever thought possible. She has taught us so much about what’s really important.

I want many things out of life for my sons. I work hard to set their feet on the path to achieving them. For Carys, the list is much shorter and simpler; happiness, love and a life as free from pain as possible.

But acceptance, well, we’re still working on that one.

Trust and Lies

xray2

I have long felt that Carys can understand more than she is able to indicate to us. In fact, that’s what gave me the idea for the main character in my books… you can’t get a more flawed hero character than someone who can’t walk or talk.

She’s always been able to follow simple instructions, such as ‘stand up’ (with assistance, of course, but she knows what to do), ‘sit down’, ‘hug mama’. ‘kiss mama’, ‘come to mama’, ‘drink your juice’, ‘where’s daddy?’, etc.

I know she understands these simple phrases, because she responds appropriately by carrying out the action I have requested of her. Now, it could simply be that she’s learned by association and repetition, because she hears them so often.

Or perhaps she understands.

In recent years, we have had to cope with some very difficult and upsetting behaviours from Carys. Going out for a meal, or taking the family on a day trip was a big no-no. She would scream and scream and scream, and there would be no consoling her. She made family outings so stressful, we couldn’t enjoy them at all.

Last year’s summer holiday was a disaster for us all, so much so, that for the first time ever, even the boys got upset. They are normally so beautifully tolerant of Carys and all the adjustments living with her brings.

Strangers are not so patient, however. Trying to amuse her and keep her quiet in a cafe one day, I downloaded some simple baby games to my phone. They did the job, until someone rather irately requested I keep the noise down. Of course, as soon as I turned down the volume, she couldn’t hear it (due to her slight hearing loss), and the screaming began. Perhaps he enjoyed the sound of that more?

Bearing in mind that the main reason I downloaded the games in the first place was to save the other diners from the horror of Carys’s outbursts.

So, what do you do? Stop going on holidays? Never eat a meal out? Have no life?

The boys are entitled to all of life’s experiences, and as their parents, it is our duty to give them as many as possible. And something we greatly want, and like , to do.

Carys will never become familiar with other places, or learn how to behave in social situations if she is constantly left in respite. Abandoning her and isolating her because she sometimes makes life difficult is not something we intend to do.

But we are so torn.

At the weekend, we went to a big family event, armed with toys, DVD’s, headphones, ipad, special foods, her soft blanky, oh everything we could think of to make her feel comfortable, safe, relaxed in an unfamiliar environment.

But in my heart, there was a heavy, sinking feeling; would she act up? How could I keep her well behaved and happy for a whole day in a strange place, surrounded by a crowd of strangers (to her)?

Well, she was a little star. And when we got home, I hugged her tightly and said to her “You were such a great girl today, so happy and so well behaved, such a good girl.” And she laughed and pointed to herself. Does that sound like a little girl who doesn’t understand?

So, what’s the difference?

 It’s such a little thing. I realised that Carys has so little control over what happens to her. She can’t understand why she has to leave her comfy familiar room full of music and toys to go to a boring restaurant, for example, where there are strange smells, lots of noise, crowds of people she doesn’t know, and she has to sit in a chair for hours, can’t crawl about, has no fun toys to play with, and can’t make lots of noise of her own.

Putting myself in her position, I realised how frightening/ strange/ boring/ incomprehensible/ frustrating that must be… I mean, why? Why do we have to leave our nice home and go to these places?

So I tell her. I explain in very simple language. We’re going to a restaurant. We’re going to eat our dinner there. You can play with your drum, watch your DVD, listen to your music, sit in a chair, eat your dinner, cuddle your blanky, have a drink, sit on my knee, sit on Daddy’s knee, we’ll have fun. Then we’ll come home, and you can play in your room with your toys before bed.

I can’t be certain that she understands all of it, or any of it. But without a doubt, her behaviour has improved. She knows what to expect. She knows it won’t last forever. And she knows she will be returning to her comfort zone.

Then this happened.

Her appointment came through for a hip x-ray. We’re going to the hospital, I told her confidently. You’ll lie on a bed, and have a photo taken with a big camera. Then we’ll come home. No one will hurt you. Just a picture.

But when we got there, the nurse asked, “Does she have the anaesthetic cream?” I stared blankly for a few minutes, then stumbled over a protestation. “Oh no, we’re not here for bloodwork, just an x-ray.”

But the nurse frowned. “We need to take the blood for tests to do with her bones. Isn’t that why you’re here?” And she rattled off the functions of the tests they were doing, all connected with the reason why here hips were being x-rayed, and I realised that they had to be done.

It’s very difficult getting blood out of Carys. Her veins are tiny, and collapse so easily. It can take ages, and needles in every limb before enough blood is collected, with several attempts for each one. It takes five people to hold her down while she screams and fights, not understanding why we are torturing her with needles, and why I am letting them, no, helping them.

I had told Carys no one would hurt her this time. I felt sick as I held her down and watched the needles go in. I had (unintentionally) lied to Carys, and betrayed her trust.

Fortunately, Carys has a beautiful soul, and a never-ending well of love. She forgave me, and I can only hope that her trust in me is repaired enough that she will be able to believe what I say to her in the future.

Caring for the Carers

carer's week 2You are probably not aware of it, because it doesn’t seem to be that well publicised, but it’s Carer’s Week this week in the UK and Ireland.

Carers Week is all about recognising the hard work, dedication and self sacrifice carers make every day in caring for a loved one. These are not paid staff employed either privately or by the state to look after a disabled person; these are people who give up their own lives to in order to improve the life of a friend or family member who can’t look after themselves.

In the Census of 2011, 4.1% of the population were giving unpaid regular assistance to someone who needed it; of these, 98.3% were family members, mostly spouses, two thirds of them female. It is hardly surprising to find that separation and divorce is higher among carers than in the rest of the general population.

Sadly,  the 2011 Cencus found that 4,228 children aged under fifteen years were also engaged in providing care to others, accounting for 2.3% of all carers. Some of these children are under nine years of age.

38% of carers looking after someone in the same household reported feeling completely overwhelmed by their caring responsibilities, and many suffer anxiety and depression as a result.

Carer’s Week aims to relieve the pressure a little by organising fun events for carers, raising publicity, and offering support and advice. However, there’s not a lot going on. In Co Cavan, where I live, there is only one event, a coffee morning and pampering day in Cavan town; it doesn’t really cater for male carers, or those elderly carers who live in rural areas and have no transport. It is hardly going to sound like much fun for the younger teenage carers, or the children, either.

Although the state recognises me as a carer (unpaid, of course), I never think of myself as one. I’m a mother, and caring is what we do. But in terms of caring for a disabled family member, be it an ageing parent with Alzheimer’s, a partner with cancer, or a child with a disability, we do it firstly for love, and secondly because we have no choice.

I care for my daughter, Carys. She has a rare syndrome, which means she has the abilities, physically and mentally, of a one year old. She can’t communicate, she can’t walk, she can’t feed herself, she wears nappies (diapers), she can’t dress herself, get in and out of bed, and so on… I do it all for her. Administer her meds, mash all her food, do her speech therapy, physiotherapy, occupational therapy, bath her, clean her teeth, taking her to all her Dublin hospital appointments, regular and emergency, and so much more. Caring for someone like Carys means going above and beyond what any parent ever expects to do for their child, until you, or the child, expire.

But I do it because I love her with all my heart. I want to take care of her. She’s my child, flesh and blood, wanted as much in her imperfect state as the day we decided to try for our third baby. Perhaps that is a choice.

I’ll give you an example why caring for her is not the same as caring for any other child. For three years, she never drank fluids. At all. It’s not something you can force someone to do. Yes, we tried. We tried a lot of things. Eventually, after trying every bottle, cup and beaker on the market, I found one she accepted.

Now to actually get her to drink from it. In the end, I had to cut holes in the teat. (she would only take a soft teat, but didn’t know how to suck, so it had to be free-flowing… have you ever tried to find a child’s cup with free-flowing soft spout? Let me tell you, they don’t exist.) I filled it with chocolate milk shake. She allowed me to put it in her mouth. She even swallowed a little. Success!

After a while, on a good day, it would take me 15 mins to get 150 mls into her. Eight times a day. I spent two hours of my day just getting her to drink. Two hours. And I still had to feed her, clean her, etc… and look after the rest of my family.

That’s one of the nicer jobs. You don’t want to know about some of the not so nice jobs. No, really, you don’t!

I am not alone. I know parents whose children have feeding tubes directly into their stomach, or bowel. I know parents whose children have to wear oxygen masks over their faces just to survive, or tracheotomy tubes. That’s tough. And I have friends who are working, raising their children, and caring for elderly parents with dementia.

But mothers are perhaps the lost, secret, hidden carers. It’s expected of her, and she gets on with it, and it goes unnoticed, because mothers are expected to look after their families. No one sees what she does. It takes place in the privacy of her own home. No one looks too closely; it would after all make you feel quite uncomfortable.

The best thing anyone ever did for me was take the responsibility of being a carer away from me for a couple of days. I have good friends, very good friends, who surprised me round about this time last year, by taking care of Carys and the boys in our home so that Conor and I could have a night away together. That was the first time since she had been born that we ever spent a night away from her. (it helped that one of my friends was a nurse). Conor and I had a fabulous care-free time, it rekindled our relationship, and refreshed us.

No one I know would give up their caring role, or want to be paid to do it. But we would all appreciate a few hours off now and again… you have no idea how much!

So maybe this Carers Week, if you know someone who fulfils a caring role, maybe you could offer to help out by giving them some time off. Take it from me, they’d love you for it! Carers do a great job, and save the state an awful lot of money. Let’s show them some appreciation, and remember to care for the carers.

You can find out more about Carer’s Week here.

Last year, I appeared on local radio during Carer’s Week. You can listen here.

The Art of Coughing

SAMSUNG

It was a rough night. It’s hard caring for another sick person when you aren’t feeling so great yourself. Carys has a cold. That’s all it is, just a cold. But even the common cold can be dangerous to someone with little or no immunity.

I hate to say it, but when I was finally able to put Carys to bed last night, it was with a guilty sense of relief. She had been hard work all day; the poor little thing was so congested, she had had trouble eating, refused to drink, and I had the stress of trying to get all her routine meds into her, along with paracetemol and cough medicine. She cried a lot. She wanted to be held, yet pushed me away.

The coughing is always worse at night. Some of Carys’s reflexes are not very well developed; orally, she can’t suck or chew, and swallowing  and coughing are weak.

I was anxious, because I was expecting it. At 11pm, just as I was making the decision to go to bed, the coughing fit started. A couple of big coughs, followed by a rapid succession of decreasingly smaller ones coming so fast, one on top of the other, she couldn’t draw breath in between.

I rushed into her room, but I couldn’t move quickly enough. Everything had slowed except the thudding of my heart and Carys’s coughing. I was shaking so much, I could barely unzip her bed tent to get into her. She was all tangled up in her blanket. I grabbed her and hauled her into a sitting position. She was just so heavy.

And that’s a give away sign, isn’t it? When a person becomes unconscious, they become unbelievably heavy, as their body loses control of its internal support system. She was completely unresponsive by now, and limp.

I was panicking, because this had happened too often before. Every time, I fear I may not be so lucky in getting her back.

I lifted her as well as I could and tipped her forward. I pounded between her shoulder blades, and rubbed her back, calling her name. And after what felt like the space of eternity, she stopped those lethal little coughs and began wailing weakly.

I held her for a while, and she drifted into sleep. She was breathing peacefully and regularly, so I lay her back in her bed, and went next door to my own. I was afraid to sleep in case it happened again and I might not wake to help her. I tried reading some of your blog posts, but I couldn’t concentrate. I tried typing comments, but I was still trembling too much, I kept pressing all the wrong keys, so I soon gave that up.

I lay down and just listened. Eventually, stress and exhaustion took hold, and the next thing I knew, I was waking to a silent house. The light was still on. My phone, still in my hand, told me it was 230am. I got up and padded to Carys’s bedroom door. She was still breathing. I went back to bed and slept till 6am.

Carys has so many serious medical conditions. We know one day, one of them will most likely take her from us. Our tiny CFC community has lost too many precious children in the past year. But often, deaths arise through complications borne of common ailments which the rest of us can easily fight off.

Coughs are annoying, and unpleasant, but they serve a purpose; they clear phlegm and mucous from our air passages, ensuring that we can continue to breathe and thus supporting our basic life functions. So coughing is good. Its a natural reflex we take for granted.

But the art of coughing is not something Carys ever mastered, and although she is growing bigger and stronger, I don’t think she ever will.

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?

The Fairy Child

magic flower on water

I got long-listed for the third and final time by Fish… I’m not doing it again. Here is my story.


They say that the fairy folk, the Sidhe, are wont to steal a human child, should they wish it, and replace it with one of their own. I wouldn’t put it past them. When my daughter looks at me with those mesmerizing eyes, so very pale blue and clear as water, I know that she is staring right through me into the shady realm of her origin, a world beyond my comprehension. Her eyes are like a mirror; they reveal little, only reflecting back at me someone who, at times, I would rather not see.

She cannot be explained by the rationale of science and medicine. She is locked in a world without language, without movement, and I know that what goes on behind those eyes is as alien to me as my reasoning is to her. And yet we have learned to accept and love each other, to want and need each other, with an intensity which goes beyond explanation, a mother-child bond which simply is.

That first night, I barely slept. My new, tiny daughter lay in her crib, snuffling and snoring in her sleep. A beam of moonlight slid between the curtains and lit up Conor’s face where he lay as if unconscious beside me. He looked relaxed, the lines of daytime concerns eased smooth by the peace of slumber. Carys’s mop of black curls was a dark shadow against her crib’s pale bedding.

How is it that one’s worries are always magnified out of control during the wakeful watches of night? It’s as if that dark wing sweeps aside our powers of logic and reason along with our perception of the physical world around us. Only daylight can restore our sense of perspective, and banish our worries back to whence they came.

As I lay in my bed, giving way to my panic, the silhouette of my familiar wardrobe manifested itself as the monster of Carys’s syndrome; the bulk of the chest of drawers became her swollen, weak heart, the curtains my ignorance. They advanced upon me, wielding their weapons of fear and destruction, but I held my shield steady. I knew that without a weapon, I could never destroy them, but my shield of love could hold them at bay as long as I stayed strong enough to lift it.

I eased myself gently from beneath the quilt, trying not to disturb Conor, and pushed the curtain aside a little, so that the moonlight drifted across my sleeping baby. Bleached of colour by the night, and silvered by the moon, it was no human child which lay there, but some fragile, magical, ethereal being, a mystery just waiting to be unravelled. For some unknown reason, she had found her way to me.

I rested my hand on her, feeling her warmth travel through me. I brushed my hand gently over her tight curls, marvelling at her tiny upturned nose, her full rosy lips, her pointed elfin chin. In her dreams, she was feeding; her little mouth began to make suckling movements.

I sat on the windowsill, drew up my legs and huddled into my robe. Beyond the glass, the familiar vista had taken on an eerie aspect in the darkness, as if I only half recognised it. I had always loved the panorama which only ever unveiled itself to me from here. I had always felt welcomed, protected by it, that I belonged and had my own place in it. But not now.

The uneven paving and the black river of tarmac slid between shadow and the golden glow of a street light. I wished its warm, strident glare would fade, so I could see the stars; I knew they were out there, glittering like a myriad eyes, watching my struggles with cool disinterest. My problems were, after all, of little consequence in the turn of time and the vastness of space.

The humped shoulders of distant hills shrugged indifferently against the dark horizon; they had stood there for aeons, as the tides of man rose and fell with each new dynasty and civilisation.

In that moment, I understood the illusion. It wasn’t the outside that had changed; it was me. The danger I sensed hid not in the shadows and contours of the brooding landscape, not matter how threateningly the night painted them, but in my own frailty and inertia.

I glanced back at my daughter. She was the cause of this inner cataclysm. She was the root of my anguish. She filled the void, yet she had created it too. She slept deeply, innocently. Black curls, silver skin, soft breath. My fairy child, who should have died before she was born. She had fought her battle and won; she had cheated death, and God, the Gods, or whoever was out there, they weren’t happy about it. So they made us pay.

And so, just as they always did when I fell through the cracks between sleeping and waking, my eyes turned inwards, tracing the journey of the past few months which had brought me here; the joy as new life swelled within me; the mind-numbing and bone-chilling ache when the first scan revealed anomalies, and joy took wings and abandoned me; the fear when doctors claimed she would not survive gestation; the apathy of carrying within me a child afflicted by some nameless genetic deviance, and being unable to do anything about it, but wait. Yet whilst the experts urged us to accept the inevitable and discuss funerals, I could feel something else growing alongside this new, tragic little person.

It was hope.

I don’t know where it came from. Not from religion, for wasn’t this proof that a higher consciousness did not exist? My hope felt strong, and in my mind’s eye, I could see it; a shining thread of light, powerful, yet so delicate it could easily be broken by a breath, or a careless word. It wound its way through every fibre of my being, from the tips of my toes to the ends of my hair. And whilst I could not at that point put conscious expression to it, it was to prove a constant and comforting companion. As time went by and Carys stayed with us, my slender ray of light became a magnificent dancing cord of raw energy throwing bright lassoes around every straw I dared to clutch at.

Each morning was a treasured gift, as I awoke and realised that my baby was still alive within me.  My body, wrapped around this child, was being granted another day of precious embrace. I desperately wanted her to be born alive so I could hold her, look into her eyes, and tell her how much we loved her. Just five minutes of life, that was all I dared ask for. If she passed away in our arms, at least we would have told her. She would know.

When she came, albeit reluctantly, she was born three weeks early to a team of waiting attendants. They whisked her away from me before I had time to note more than the thick dark curls, and tightly shut eyes. As if by keeping them shut, she could delay the inevitable.

The next day, I was discharged from the hospital, but Carys was not. Going home with empty arms after giving birth is something no mother should ever have to experience. I was ushered through the door to the sofa, a cup of tea placed in hands which didn’t seem to know what to do with it. My two toddler sons whirled around the room unaffected, their exuberant play breaking over me like the ocean parting around a rock. Like that rock, I was unmoved. The tea went cold in my hands having never been raised to my lips. Without speaking, I drifted upstairs like a wraith and lay on my bed. Sleep did not come. But I belonged more there in the silence, with Carys’s new crib beside me, than I did in the happiness of the living room. I stared at the crib. It was as empty as I was.

Friends came and went. I accepted murmurs of commiseration and utterances of hope, wordless hugs, gifts of toys for Carys, and casseroles and lasagna for the family, so I wouldn’t have to worry about cooking. I let my sons be taken away from me for sleepovers, so I could have ‘time’. Time for what? They left nothing for me to do, but sit and contemplate.

Carys slept for three weeks. On the day she should have been born, she opened her eyes for the first time. The shock that jolted through me as I gazed into them was a turbulent mix of joy, anxiety, and mutual recognition. When I held this strange little being to my breast, it was with the uncomfortable feeling that it was not a baby I was nursing, but a long-lived soul.

We continued the process, Carys and I. We both understood our roles, and played them well. Feeding was a success. A week later, I was allowed to bring her home. The intimacy forced upon new mother and child eased into familiarity. It was loving, and beautiful, but it was overshadowed by the nameless beast which possessed her. And it brought companions.

Whilst the doctors did their tests in order to establish its identity, I replicated their efforts by searching the web, stumbling all the while over its treacherous accomplices; the most hazardous of the bunch, a heart condition known as Hypertrophic Cardiomyopathy.

This would be her stalker, prowling along behind her for all of her life. A dangerous killer lurking in the shadows, awaiting its opportunity to pounce should we slip with the medication which held it at bay. We would never shake ourselves free of its clutches. We could never hope to save her from it, but there was no way we were going to let it have her.

Less shy was the attention-seeking Haemangioma, or birthmark, which flaunted itself wantonly, drawing much unwelcome notice from the general public due to its size and ugliness. Its unsightliness, however, paled into insignificance compared to the ugliness of people’s reactions to it. It had first made its debut two days after Carys was born, a shy blushing creature, seemingly innocent and of no consequence. But once it had established its claim, it grew with a speed and malicious enthusiasm which astounded me. Day by day it expanded, turning a deep, shiny red colour, a sinister parasite claiming its territory on my daughter’s face. The surface wrinkled and puckered, forming little hills and valleys, a menacing roseate island in the soft smooth sea of Carys’s forehead. When it began to drape itself over her left eye, surgery was decided upon in order to save her sight. Save it they did, but the monster never completely let go.

Epilepsy completed the deadly trio, although lesser culprits waited in the wings to join them. The seizures pounced on my daughter day and night, relentlessly jerking her body in their cruel, hard grip. Watching as she shook and twisted like a rag doll under their control, there was nothing I could do but administer increasing amounts of drugs, and count the spasms. I lay by her side, holding her hand and crooning softly, hoping she knew I was there with her, and could take comfort from it.

And thus we settled into our strange new life, punctuated by weekly scheduled hospital appointments, and regular unplanned emergency visits. For a baby who appeared so robust, on the inside she was as fragile as a china doll.

Meanwhile, the mystery deepened. Various detectives came to us in the guise of doctors, but the diagnoses they offered bounced back and forth like ping-pong. Noonan’s Syndrome, suggested one of them, pointing out the long list of Carys’s defects. I turned over the leaflet he left us with. One small sheet of paper. The sum of our knowledge. The sad fact was, the doctors knew nothing about my daughter. This was uncharted territory. As her parent, I knew a fraction more, but unfortunately, a thousand times nothing still equals nothing.

Blood tests revealed something incredibly rare. Carys was born with Cardiofaciocutaneous Syndrome, quite a mouthful, but then, anything less just wouldn’t do it justice. We took the news stoically; wasn’t it always good to know the truth, no matter how much it hurt? Knowledge would surely give us the tools to work with doctors and therapists to create a plan of treatments and cures, set goals for the future.

But for a family with a unique child like Carys, there is little moving forward, only stumbling around in the dark, lurching from one medical disaster to the next, and hoping, praying, if that floats your boat, for a guiding light.

In those early days, I was so angry. I blamed everyone; the strangers, who treated us like freaks; the professionals, who treated us like an exhibit; the friends who treated us like we were made of china while they tried to hide their normal, perfect lives and normal, perfect children; even my family, who weren’t around when I needed them. I had never felt more alone.

For a while, I hated what the coming of this child meant to my life. Would I be changing nappies for the rest of my days, mashing food, listening to tantrums over causes I didn’t understand, singing nursery rhymes to an adult child who keeps patting her head for yet another performance of ‘twinkle twinkle little star’ ?

Probably.

Would I ever climb a mountain again, hitch-hike across South America, stay out late drinking wine with friends, and not worry that I have to stay sober in case Carys goes into heart failure during the night and I have to get her to hospital?

Probably not.

And then I feel guilty for being so selfish.

This dark side of me is relentless still. It haunts me, never leaves me. My cruel, faithful shadow, waiting eagerly to enfold and absorb me when times are tough. I try to avoid it, but it seeks me out in unexpected places when my defences are lowered, and sometimes I fall into it and get lost. It feels like drowning, like sinking into murky depths no matter how hard I swim, the dappled sunlit surface fading from view far above.

The big black cloud we were learning to live under was spreading its gloom ever wider over our lives. Beneath it, the fairy child shone her light like a firefly caught in a storm. She became my teacher, revealing layers of existence I had previously been impervious to. When she smiled, it was with her whole being. When she reached out for me, she hugged with intensity. She loved fiercely. She didn’t judge anyone, no matter how cruelly she was judged in return. When she reached forward to pat a stranger’s cheek, it was because she had seen through to the goodness in his heart, and she responded to it. She alternated between bringing me deep joy, and terror. I understood that message; that in order to appreciate what is good, one has to experience what is bad. Being Carys’s mother was a never-ending lesson in what really mattered in life.

One day, the Sidhe will come and take their child back. The doctors will say her heart gave out, but I will know the truth. It is a moment I dread, but know I can’t avoid. Until then, Carys remains my fairy child with the silver-blue eyes, the silent voice, and the ever-living soul. The greatest gift ever given and received.

As dawn highlighted the horizon with delicate morning hues of apricot, pink and gold, Carys stirred and murmured in her sleep. Soon, the fiery orb of the sun would rise above the hills and begin its trek across the sky, defending my sanity and banishing my night terrors to the domain of darkness where they belonged. Bathed in its reassuring warmth and light, my courage would be replenished. Carys would wake, and the daily routine would begin anew.

Shivering, I went back to bed. Conor reached out an arm, half-awake, and pulled me in close, and in that warm, safe place I finally fell asleep.