aliisaacstoryteller

The Wheelchair

Carys as a wheelchair angel in her school nativity play

The occupational therapist stuck his head through the physiotherapy room door. “Alison, can you bring Carys in for her wheelchair fitting on Thursday?”

It was a simple enough question, not even a completely unexpected one, but my reaction startled even myself.

I burst into tears. Noisy, heartfelt tears; the kind which make your nose run and don’t look pretty, like they do in the movies; tears over which I had no control, and no way of stopping. Tears which I didn’t then understand.

Because strapping Carys into a wheelchair felt like we were giving up on her; condemning her to a life without freedom and mobility; it was as good as saying “you can do as much physiotherapy as you like but it won’t make a difference…you will NEVER walk.”

That was nearly five years ago, but I can still clearly see the bemused expression on the face of that poor man, trapped as he was, half way between the minefield of my emotion, and the sanctity of the hall on the other side of that door, not knowing whether to step further into the dragon’s den or beat a hasty retreat.

Carys trying to get out of her wheelchair after getting off the school bus

Well, I thought to myself, if Carys is never going to ride a bike like other little girls her age, I’m going to make sure she has the prettiest wheelchair around. Of course, you don’t get gorgeous pink Barbie wheelchairs. Instead, I chose a bright orange chassis, big pink and white daisies for her wheels. I was even more delighted when the small front wheels lit up and flashed as they rolled. When I saw how well designed the seat cushion was for long term sitting, how comfortable and upright she was in it, I knew it was the right decision.

Our first outing was to pick the boys up from school. I felt so self conscious, pushing Carys down to the school gate in her bright new wheelchair. And didn’t everyone stare? There was no avoiding the garish orange metalwork, the fuck-off daisies, the flashing wheels. The message somehow translated not as ‘wheelchairs can be pretty too’ but more as ‘watch out, world, here I come!’.

It wasn’t what I had intended. The cute little girl nobody noticed in the buggy because she looked just like a baby when she was actually nearly 5 years old, had graduated into the poor little disabled girl who couldn’t walk, and wait a minute…yes, looks like she can’t talk either, and…what’s that huge scar on her forehead, and…is that neckerchief a fashion statement or actually a dribbler?

We went back to the buggy. Although Carys didn’t seem to mind the attention, I couldn’t handle it. Strange things happened when we went out with the wheelchair.

Like the time I went to the cash point on the way home from collecting Carys from school. I took my money, shoved it into my purse, and almost collided with a woman standing too close behind me. “What’s wrong with her legs?” she demanded over the top of Carys’s head.

My first reaction was to say,”Nothing. What’s wrong with your face?”

Thankfully, I managed to scrape together enough self control to bite that one back.

I almost said,”Why don’t you ask her?” I hate it when people ignore those who are wheelchair bound and talk to their carer as if they are somehow intellectually inferior, or as if they don’t exist. But I knew the point I was making could backfire on me massively; Carys actually couldn’t reply for herself, or even understand.

So while I seethed and boiled at the rudeness and nosiness, I resorted to the polite friendly truth. “There’s nothing actually physically wrong with her legs that any doctor can determine. Carys has a rare syndrome called Cardiofaciocutaneous Syndrome, and along with that, global development delays. She can’t walk, and we don’t know if she ever will.”

“Oh.” She sniffed, and went back to her shopping. Had she hoped for something more dramatic, more tragic? I pushed Carys back to the car, wondering how much trouble I’d get in if I accidentally ‘lost’ the wheelchair in a ditch on the way home. What gives someone the right to approach a stranger, and demand the details of their affliction? Isn’t that our own personal business?

Carys practising walking with her walker

The wheelchair didn’t see the light of day for a while, until we decided on a family outing, with dog, to Loughcrew Gardens. As we were going to be out all day, I reluctantly decided that Carys would be more comfortable in the wheelchair.

We hadn’t been there five minutes before another woman approached us. “Do you mind me asking why your little girl is in a wheelchair?” she asked me politely.

Here we go, I thought, but dutifully opened my mouth to begin the explanation. You can imagine my surprise and horror when she burst into tears. “It’s so unfair, what some children have to go through,” she sobbed. And then she poured out her heart to me. A year previously, she had lost her five year old son in a tragic car accident.

“I’ve just had my favourite chocolate desert and it was gooooooood!”

I stood and listened for two hours. Eventually, she managed to pull herself together, apologised, and we parted. I don’t know how she felt; I hope it helped her, somehow, to confide in a stranger. But my lovely family day out was ruined. I nearly lost one of my sons as a baby, but he pulled through. Carys was never meant to be born alive, but is with us still against all the odds. It is quite likely that she is with us on borrowed time; both Conor and I accept that she will most likely go before we do. I couldn’t get that poor woman out of my mind, and although the sky was sunny, black clouds followed me for the rest of the day. Because of that bloody wheelchair. Had Carys been in her buggy, she wouldn’t have stood out as different, probably wouldn’t have triggered such a reaction in a stranger.

Yep…we have a love /hate relationship, me and that damn wheelchair.

A Very Important Note: After publishing this, I was thinking about that first outing to the school gate. It was very uncomfortable for me at the time, but I feel I must point out that the stares weren’t malicious. Curious, maybe; dazzled and bemused, perhaps, lol! But a lot of my friends were there, and they have always been supportive and caring of my experiences with Carys. They know that if I’m not around for a while, its either because I’m coping with Carys, or trying to finish a book! They never give me a hard time about it. Where would we be without our friends?

Be Wary When Feeding THICKENERS To Your Special Needs Child.

It is four months today since my daughter, Carys, stopped taking thickeners in her fluids. I think it’s time to warn you what thickeners can do to your child, as we have experienced for ourselves first hand over the last eighteen months or so. No-one will tell you any of this when they prescribe thickeners for your child. Everything you will read in medical and industry literature will tell you how safe these products are. BUT THEY’RE NOT. Just google ‘thickeners and constipation’ for yourself; you’ll be blown away.

This is our story.

Carys did not drink fluids, at all, for three years. Speech therapists introduced thickeners as away to get her drinking again. Faced with a wall of eight superficially smiling speech therapists, three radiographers, a strange high-chair, and a huge x-ray machine, Carys commenced screaming, and therefore choking, all the way through her barium swallow test. The results were inconclusive, I was told. best start her on thickeners, just to be on the safe side. I had misgivings; I didn’t believe she had any swallowing issues, but they were the experts, and I was intimidated.

I tried various feeding cups until I found one Carys liked. About three months after she started drinking, the periods of screaming started. They would last for about four days, often did not stop at night, and recurred  in a cycle of every ten to fourteen days. I was at my wits end; she seemed in such agony, yet doctors could find nothing wrong with her. Finally, one morning I took her out of her cot, and her nappy was bone dry. She was drinking about a litre of fluid a day, more than she had in years, and yet her nappy was completely dry, something which had never happened during all her years of not drinking anything at all. We went to A&E.

Poor Carys's swollen belly when constipated.

Poor Carys’s swollen belly when constipated.

Carys was diagnosed with Chronic Constipation and Impaction. Her bowel had swollen so much, it was pressing against her bladder and preventing the escape of urine. How could this have happened? If anything, I thought she was suffering from diarrhoea; apparently, liquid stool is a sign of constipation, but who knew that? She was started on a high does of Movicol to liquefy the impaction and keep it all moving, and was warned that it could take up to a year for the bowel to recover and begin to function normally.

A few days later, the Movicol took effect. The less said about that, the better! But finally, Carys had some relief. I consulted a nutritionist, began counting her daily fibre intake, and that was the end of that…or so I thought.

A week later, Carys was screaming again. And so the cycle continued. Even with all that Movicol (up to ten sachets a day) and her daily requirement of fibre, and regular enemas. I investigated the causes of constipation; lack of fibre – definitely not; not drinking enough – no, it only started after she increased her fluid intake; lack of exercise – difficult one to address in a non-mobile child; lots of medication – yes, but I couldn’t stop those, and anyway, her prescription had not changed in years, so why would it be causing a problem now? I was convinced that Carys must have some other underlying condition. Her older brother had been born with Hischsprungs Disease; could she have it too? Unlikely, doctors told me. What about her Thyroid? Tests proved it normal. Diabetes? No. Ok, so maybe it’s something else, like a twisted bowel, or a blockage? Xray and ultrasound could find nothing wrong. Finally, a doctor said there was nothing more he could do. Let me just say, that’s the wrong thing to say to a stressed and weeping mother at the end of her tether, carrying a child screaming and writhing with unexplained agony!

There had to be a reason. This was not normal behaviour for Carys. But it seemed only I believed that. It was now a year later. Carys had missed a lot of school. Her development had not moved forward at all during this time, in fact, she had regressed. She was no longer the happy, loving child she always used to be.It was impossible to take her anywhere, she would scream the whole time. All she wanted to do was rock on her belly on the floor of her bedroom, where she felt most safe and comfortable, I suppose. If anyone out there believes constipation to be only a mild, temporary condition,  I say to you, think again. Carys’s pain and unhappiness was affecting the whole family. Do you know how it feels to watch your child in agony, and not be able to do anything to help her? And let me just add, I’m no selfless hero; there were times when Carys’s screaming got to me so much, I just wanted to close her bedroom door or leave the house, so I didn’t have to listen.

foodAfter months and months of racking my brains, I began investigating the side effects of all Carys’s medicines. None of them especially listed constipation as an issue. Then I investigated her thickener. It was made from maize starch. In this country, maize starch is called cornflour. Everything I read said how safe it is. But then, it’s big business; any negative effects would be kept hidden, wouldn’t they? But when I googled thickeners and constipation, there was a flood of concern. When I read a speech therapists report on a nursing home in the UK, where there was a high incidence of dehydration and constipation linked with a high mortality rate, I was convinced. I discontinued the thickener immediately, and guess what? Carys could drink all her fluids fine, no choking or aspiration whatsoever, even when taking water. I couldn’t wait for the summer holidays to start, to trial my theory more fully; the school had to cover themselves by following speech therapist recommendations. I could do what I wanted.

On July 21st this summer, Carys had her first day completely free from thickeners. SINCE THEN, CARYS HAS NOT BEEN CONSTIPATED ONCE! We have decreased her Movicol to three sachets daily. She has not had a single enema since July. And she is having a bowel movement every day. Oh, and she has never choked on her fluids, or inhaled any, either.

Before Carys went back to school, I went to see her doctor and explained my theory, prepared for a battle. “Ok,” he said, looking at the report from the swallow test. ” I don’t know why she was put on thickeners anyway; there’s no evidence of aspiration in the report. I’ll write a letter to her school.”

SAMSUNGFour months later, Carys is well and happy again, just like she used to be. She can hold her own cup now, and drink the whole lot by herself. She is stronger, and participating well in her physio again; her walking (in her walker) is better.

It’s not coincidence. I believe thickeners in large quantities are not safe. If your child is suffering from constipation, but doesn’t take thickeners, look again at her diet. Corn flour/ maize starch is added to lots of foods that you wouldn’t think needed it. It’s usually GM modified, too. Be wary of ‘hungry baby’ milk formulas, check their ingredients carefully. Hospitals and care homes use thickeners in everything. A couple of spoonfuls used to thicken a sauce or gravy won’t do any harm, but more than that might, depending on your child’s sensitivity. I don’t want to scare anyone, but it took me a year and a half of stress and suffering for Carys to find this out for myself. I’m sharing our story, in the hope that it might help someone else.

It's nearly Christmas!

It’s nearly Christmas!

Of course, there are many conditions which can cause constipation, so always get checked out by a doctor.

Travelling With Your Special Needs Child

palionysis

palionysis

So, I’m not long back from the (almost) annual Walker pilgrimage to the Greek island of Kalymnos, and I’m reminiscing/reviewing the pros and cons of travelling with my special little CFC angel, Carys. As you undoubtedly know by now, she has a very rare syndrome, which means at nearly 8 years old, she cannot walk, talk or communicate. She is also affected by a myriad medical conditions, including Hypertrophic Cardiomyopathy (her deadly stalker, a serious heart condition), and Epilepsy, for example.

It would be easier to stay at home. that’s a fact! But Conor and I determined right from the start that we would include Carys in as many family activities as humanly possible, and that her arrival would not mean that in the future, our boys might resent her for holding them back from participating in life’s more exciting adventures.

Our big fat Greek wedding in Kalymnos.

Our big fat Greek wedding in Kalymnos.

Conor and I were married on one of Kalymnos’s beaches. I have family there. An unspoken, impromptu, informal family reunion seems to magically take shape there every couple of years. Although this summer, we intended to try somewhere new, after all our research, we were inevitably drawn back. It has become so familiar, it almost feels like home.

But it’s not an easy journey. We leave the house at 4am for the 11/2 hr drive to Dublin Airport. From there we fly to UK; there are no direct flights from Ireland. After a 3-5 hour interval hanging around the airport, we catch our 4hr flight to Kos. From there, it’s a short taxi ride to the harbour at Mastichari, where our first Greek meal is normally eaten in the restaurant Kallicardia, whilst we await the last ferry which will take us to our final destination. A 15 minute taxi journey usually delivers us to our hotel, by which time it is midnight, Greek time.

View of Telendos from Babis's Bar.

View of Telendos from Babis’s Bar.

Yes, we’re all exhausted, but when we awake the following morning to a deep blue sky, consistent dawn-to-dusk sunshine, 30*C heat, crystal clear seas, turquoise swimming pools, gorgeous Greek food and happy, friendly Greek hospitality, it’s all sooooooooooo worth it!

For you, you might say, but what of Carys? She has no comprehension of what has happened or why. Surely it’s cruel and selfish taking her so far out of her comfort zone, removing her from everything with which she is familiar, purely in the pursuit of our own happiness and fulfilment.

Not so. If anything, Carys loves the experience just as much as the rest of us. She gets so much joy from her holiday, that this has become the major driving force behind us going through such a journey to get her there. In fact, I would go as far as to say she must have been a little Greek girl in a previous life, she seems so settled and content when she is there!

Carys and me in the pool.

Carys and me in the pool.

The secret to success when travelling with your special needs child, is to be very well prepared. These are my five top tips, which really helped to make our trip easy, relaxed and (almost!) stress free.

1. The Syndrome/Medical Condition

We always take a letter with us written by Carys’s doctor, describing her conditions and medications, translated into Greek. In actual fact, in our experience, the doctors and pharmacists seem to be mostly trained in the UK or USA, and speak English well, so language has never been a barrier to receiving the medical care Carys needed.

2. Medications

One year, I was horrified to find I had miscalculated the amount of medication Carys needed for her Epilepsy, and we didn’t have enough to last through the holiday. Whilst I languished in our hotel room, full of anguish, berating myself for my mistake, Conor took a taxi down to the pharmacy, where the pharmacist spoke perfect English, understood our predicament, and promptly  issued a prescription. It was not her usual drug, but it did the trick.

Playing in the sea with big brother Cai.

Playing in the sea with big brother Cai.

It is always advisable to ensure you have adequate medical insurance for your trip. Get your other half to double check all the medications you are taking with you. Now, I always measure each dose into a day by day pill tray to take with us, and that way I know it is correct. Always carry your medications with you in your hand luggage.

3. Food and Drink.

Carys takes all her food and drink orally. However, she can’t chew efficiently, and chokes easily, so all her food must be mashed or pureed. The only way she can take her meds is by mixing it with her food. She must never get dehydrated; this could be detrimental to her heart condition.

Carys loves dolmades...and so do I!

Carys loves dolmades…and so do I!

Most supermarkets abroad sell some prepared baby foods in jars, but there may not be much choice. In Greece, the diet mostly consists of grilled meat and seafood, salads, bread, yogurts and cheeses. Carys loves Greek yogurt and honey; I also discovered that she loves tsatsiki, feta cheese, meatballs, stuffed tomatoes/peppers/aubergines, dolmades, cheese and spinach pancakes (she ate ALL of mine, I had to order another!), ham and cheese omelettes, vanilla milk shakes, freshly squeezed orange juice, chocolate pancake, baked lamb, moussaka, and small morsels of fresh bread. There was just no stopping her! Provided I cut it up small enough, she managed to eat it! We usually fed her before we went out, as eating out in Greece tends to be a leisurely affair, and Carys has no patience once she feels the pangs of hunger, and then offered her food from our plates. She didn’t refuse anything!

As for drinking, she managed a litre to a litre and a half every day…that’s more than I can drink, unless we’re talking watermelon Bacardi Breezers, that is!

Carys listening to Newton Faulkner on her little pink headphones.

Carys listening to Newton Faulkner on her little pink headphones.

I know some kids are fed special foods through feeding tubes; I’m afraid I have no experience of this, although I understand from other mums that it is possible to arrange to have these foods delivered direct to your destination prior to your arrival. My advice would be to always speak to your hotel so they are expecting the delivery, and can arrange storage, fridge space if required, etc, and then check to ensure it arrived.

4. Sleeping

This was previously always an issue for us. Where would Carys sleep? She is too big for a cot, but has no sense of her personal safety, or her body in relation to space and everything around her (part of her sensitivity issues, I believe). As a result, she can’t sleep in a bed, she just falls out. I hated putting her on the floor, not only for hygiene reasons, but for bugs and creepy crawlies, draughtiness, and comfort; it was also impossible to keep her in one place. Then, a couple of months ago, I bought her a safety bed tent from www.myreadysetbloom.com. It was the perfect solution! For the first time on our travels, Carys was able to sleep in a proper bed, safely, and with the added bonus of keeping out any pesky mozzies or flies! She loves sleeping in it too, and it saves our aging backs, as she can crawl into it by herself, with a little help, no more lifting for mum and dad, hooray!

Carys's safety bed tent set up on her bed at home.

Carys’s safety bed tent set up on her bed at home.

5. The Journey

This is the part most parents dread most. I mean, it’s hard enough travelling with ‘normal’ children, isn’t it, never mind one with special needs! Our journey in particular is very long, very tiring, and very trying, for all of us! As we fly Ryanair, we carry all our luggage on with us. This has advantages and disadvantages. On the plus side, I have ready access to all Carys’s toys to keep her entertained, and clothes and nappies for changing, if required. But it is quite literally a drag having 5 small cases to tow around with us all day long.

In Kos airport with all our hand luggage rowed up behind us.

In Kos airport with all our hand luggage rowed up behind us.

This year, for the first time, we booked  airport assistance, and it made such a difference. They will offer as much, or as little help as you decide you need. We had help through check in, were able to go to the front of the queue (although the process of getting us on the plane took so long that everyone else had boarded by the time we got on!), and were lifted into the aircraft by a vehicle with a very high tail lift…super! No more struggling up the steps carrying a heavy daughter, shepherding 2 bemused boys, carrying 5 cases, and looking for 5 seats, hopefully together!

We’re flying Ryanair, remember?

Unfortunately, Ryanair being Ryanair, that’s where the helpful service ended! Although the row of seats reserved for those with reduced mobility had notices stating such on them, they always had people sitting in them, who then had to be moved by the staff, and oh! they were not happy at having to move, I might add! Ryanair knew we were flying with them, that we had booked assistance, all they had to do was block off those seats…IT’S NOT ROCKET SCIENCE!!! It happened on each of the four flights.

Carys all relaxed on the plane.

Carys all relaxed on the plane.

Carys being over 2, had her own seat. She was happy to sit in it, played with her toys, watched Peppa Pig DVD’s on her personal DVD player (our best idea!), listened to music on her little pink headphones (our second best idea!), sat on our laps for cuddles, songs and to sleep, and generally behaved like a little angel. I’ve never seen her more relaxed.

CHILLAX!

Who wouldn’t enjoy warm sunshine on their skin? Splashing in the sea? Jumping in the pool? Playing in the sand? The sights and smells of somewhere new? Trying new exotic tastes of food and drink? Listening to melodic foreign voices? Dancing to strange, exciting music? Children with special needs might not understand that they are in a different country, or that they are on holiday, but that doesn’t mean they can’t relax and enjoy it, take it all in and absorb it, and benefit from all these new experiences. They deserve the break as much as the rest of the family do, and don’t underestimate them, they get just as much out of it, too.

Carys happy on holiday.

Carys happy on holiday.

Carys is so happy and chilled in Kalymnos, we might just have to retire there!

Carys with her Dad enjoying Kos Waterpark.

Carys with her Dad enjoying Kos Waterpark.

What has been your experience of travelling with your special needs child? I would welcome your thoughts and questions, so please feel free to comment here. I am no expert, I can only tell you what I have learned through my own experiences with my daughter Carys.

Five Things You Should NEVER Say to a Mother of a Special Needs Child!

Handicap sign

I know the comments you are about to see are well-meaning, but quite frankly, they’re patronising, and insensitive, at best. We mothers of special needs kids get sick of hearing them. We don’t want you to treat us differently, and say what you think are nice things; that only makes you feel better, not us. All we need are the same common courtesies you give everyone else; a smile, a ‘Good morning!’, a comment on the day’s weather…

1. I don’t know how you do it.

You could also include here ‘I couldn’t do it.’ and ‘You’re so brave.‘ We hear these a lot. You make it sound like it is some kind of choice the mother makes. The fact of the matter is, your child is born, the discovery and diagnosis is made (if you’re lucky), and then you go home. You have to get on with it. No-one can do it for you. There’s no bravery about it, no choice. You can’t give the faulty child back and exchange for another more perfect one. You get what you’re given. Don’t get me wrong; it’s not easy. Some mornings I get up, reach for the medicine cupboard and think to myself, “I can’t do this today.” I can’t describe that weariness, can’t put it into words, (and as you know, words are what I do). But somehow, I keep going, because the consequences otherwise are too terrible to consider. Before I had Carys, I thought having a special needs child only happened to other people. I never imagined it could happen to me, and I never thought I would be able to ‘do it’. But ‘it’ happened, and I can. We all can. You never know what you are capable of until ‘it’ happens to you.

2. Special kids are only given to special parents.

Excuse me while I puke! Does that include all the special brothers, sisters, grandparents, aunts, uncles etc who also didn’t choose to have this child born with its ‘special’ disabilities? There’s nothing special about any of us. We were all just minding our own business, looking forward to this lovely little new arrival entering our lives. We weren’t expecting the explosion that came with it! Perhaps ‘strong’ would be a better word, or ‘adaptable’. We all learn to cope with what life throws at us, don’t we? It’s part of being human.

3. I understand how you feel.

Actually, no you don’t. Not unless you have been there, or are going through a similar experience, so don’t pretend you do. It undermines everything you might say or do afterwards.

4. She’s handicapped/retarded.

In sporting terms, a handicap refers to your average performance being less than the norm, or expected. That implies that the disabled child must be judged against so-called ‘normal’ children, in order to be found less than average, or expected. How can such a comparison have any meaning? Retard actually means to slow down, or impede the progress of something. It is also used to refer to the disabled, and thereby as an insult to those who are considered stupid or dumb. I can honestly say that I have never met a disabled child who was stupid or dumb! Child-like, innocent, with limited understanding of the world around them, yes, but stupid or dumb, definitely not. So please don’t use these terms, and please educate others you hear using them.

Incidentally, I still hear people referring to Down’s as Mongols! And why do we use the word ‘special’ to refer to children with disabilities? Are only children with syndromes special? Try explaining that to a curious, upset five-year old.

5. What’s wrong with her?

There are many answers which spring to mind when asked this question, none of them repeatable here, lol! At the end of the day, I will happily answers anyone’s genuine curiosity and interest. I want people to know about Carys’s syndrome. the more people who know about it, the fewer people might have to go through what I have been through as a parent, in the future. The more people know about what living with disability is like, the more chance disabled people will have of being accepted in society, instead of being mocked, despised, feared. It’s already happening, but it’s a long, slow process. When I was a child, I was afraid of the local Down’s Syndrome boy; disabled children, and adults were parcelled off into special schools and institutes, and we never saw them. Nowadays, they may still have to go to a special needs school, but they are out and about every day in society, and people are no longer afraid, so that is definitely progress. But we still have to get over the stigma attached to disability. So I will talk about Carys to anyone who wants to know. Beware, though; don’t ask if you don’t really want to know. You may have just opened the flood gates!

But I no longer feel compelled to explain her to anyone who asks about her. That’s quite a personal progress within me. And as for what’s wrong with her, do you know what my answer is to that?

NOTHING.

Nothing is wrong with her. My daughter is perfect in just about every way you can think of. That’s not just because I’m her mum. It’s because she has more love inside her than you would think is humanly possible. She treats everyone with that same love and respect, regardless of whether they mock her/stare at her/love her in return. She is  always happy, unless she is ill, or she has to do physiotherapy (hehe!) or we take her out for the day when all she wants to do is stay at home and watch Peppa Pig on TV! She never slaps/bites/pulls hair or shows any aggression to anyone, like other ‘normal’ children. She never does anything naughty or hurtful to anyone. I see her bring out the best in everyone who take that extra little bit of time and effort to get to know her. She teaches me something new every day. She puts my life into perspective.

The Reluctant Mother

blue skyOn days like this, when the sun is shining, and the sky is an uninterrupted blue, particularly on days like this, I feel how my wings have been clipped more keenly than normal. I want to soar into that endless blue, but the burden I must carry is too heavy for me to ever do more than lift it a mere few feet above the ground.

I look at the windows that I never seem to get around to cleaning, the ever increasing pile of laundry, and the drifts of dog hair which I spend my life vacuuming, only to find that their curse can never be lifted, and I feel more a failure than ever.

How is it that I can’t even manage to keep abreast of even the most simple and mundane of tasks? I look at my friends’ houses; they are sparkling, even those belonging to mothers who work. And I wonder, do they secretly judge me?

On top of it all, I give myself the added pressure of writing books.

Why? Why can’t I seem to fit it all in? What is it about me that doesn’t match up?

This morning, it came to me, as I sat feeding Carys her breakfast. The difference between me and almost everyone else I know, is Carys.

Carys

Carys

How can that cute little quirk of humanity take up so much of my time? Am I just making excuses for my inadequacies? Perhaps.

But this is how it goes. How long just eating and drinking takes her, to give you an example. It takes anywhere from 15 minutes to half an hour, just to get her to drink 200mls of juice. I sit there, gently inserting the beaker into her mouth, dribbling a few drops into her mouth at a time, patiently waiting for her to swallow and prepare herself for the next mouthful, while inside I’m screaming  with frustration, knowing I have to do this 6-8 times more that day. Because if I don’t, she won’t get all her medication, let alone meet her hydration needs. And if that happens, she will get so severely constipated that she will scream in agony for days. Not to mention the risk of dehydration to her heart condition.

Feeding is usually quicker, as she likes eating, and as it’s more solid, its easier for her to manipulate in her mouth. Twenty minutes usually does it.  But don’t forget the snacks in between meals. I can’t just hand her a biscuit or a piece of fruit, as you might with any other 7 year old. Preparing her food is another matter. That takes time. It has to be mashed, or chopped. I don’t want to blend it, as I want her to experience texture and small, soft lumps; I hope she’ll learn to chew one day. Imagine the freedom for us both that tiny progress would make!

Nappy changing. Yes, we still have to do that. Probably always will. Although I would like to attempt toilet training this summer holiday. (Wish me luck! I only hope I manage to hold onto my sanity!) Changing a nappy doesn’t take long, I can almost hear you thinking. Well, you’ve never changed Carys. Remember that medication I was talking about? It turns her bowel movements to liquid. It seeps through her clothes, pools on the floor, gets everywhere. Including on her hands and in her mouth, if I’m not watching for it. That takes time to deal with. So does all the extra laundry. Yet I’m grateful for it; I don’t think she could ‘go’ at all if it wasn’t for that vile medicine.Peppa Pig

Then there’s dressing her, several times a day, sometime. Fetching, carrying, strapping into wheelchair and loading said vehicle into the car, that is a fiddly process, when all you want is to nip out for a carton of milk or a loaf of bread.  Putting on her fave Peppa Pig dvd, or music cd, most children her age can do all that and more by themselves. My boys were fairly independent at age 7, in terms of feeding, drinking, dressing, washing, toileting, entertaining themselves and using technology.

And of course, I am not just her mother, but her own personal speech therapist, physiotherapist and occupational therapist all rolled into one. Trying to get her to practice walking, learn how to use her hands, or balance without falling over, or lift a loaded spoon into her mouth, recognise picture cards or copy sounds I make, it all takes time. If I did more of it, maybe she would be walking/talking/signing by now. No matter how much I do, it never feels like enough.

I thought about all this over breakfast, and realised that everything I do for Carys takes up the time I would be using on all those other things that other mums do to maintain their homes and families. All those other things, which I am expected to do. Which I should be able to do. WhichComputer-generated imagery of the eruption of ...

occasionally build up into my own personal Mount Vesuvius.

Funny, that I hadn’t ever made the connection. Just immediately and always assumed a mantle of guilt and feeling of failure. I hadn’t even noticed all the Carys stuff I do. I J.F.D.I. And worry it’s never enough. And feel bad about my reluctance, my selfishness.  It is the norm of my life. So this sudden realisation was a revelation.

Not that it changes anything. But maybe I won’t beat myself up about the chores not getting done, and my house and garden looking like the Clampett’s have moved in. At least for a while, anyway…

 

UPDATE: After writing this post, I took the ironing into the garden and did the ironing under the big blue sky with the sun smiling down on me, looking at the beautiful, GREEN view, listening to the music of the birds singing in the hedge. It was really lovely, and now there is no more ironing mountain, and I feel productive and relaxed!

Sometimes, life gets in the way…

The day after my last post, I sat down to my laptop with renewed determination. Just as I was getting into my flow, the phone rang.

It was Carys’s teacher. “Carys is really not happy. She has been screaming and crying since she arrived. She won’t be placated by music, or the relaxation room. She’s not even eating or drinking. I’m quite worried…”

She’s quite worried?!!

I’ve been watching my daughter scream in pain on and off for the last nine months. Someone has to be able to help her. It can’t go on.

So I brought her home from school, took off my writing hat and replaced it with my nursemaid’s hat. That was the end of my writing for the day. And for the next few days, as it turned out.

Because we spent the next day at A&E in the children’s hospital. I had taken Carys to our local GP, who said, “We have two options; I can refer Carys to a specialist, in which case you may be waiting months for an appointment. Or, if you are willing, I can write a letter for you, and send you down to A&E, but there may be a lot of waiting around. It’s not the correct protocol, but this has gone on long enough.”

If I am willing?!!

Try and stop me! At last, someone was taking us seriously, and trying to help us.

A&E was packed. There was nowhere to sit. There wasn’t even anywhere to stand. Carys was screaming so much, everyone was looking at us. But thanks to the GP’s letter, we were seen immediately. Within five minutes of arriving on the quiet ward, Carys’s screaming had every child there crying in competition.

So followed a frustrating day of tests, x-rays and ultrasounds. After which, the consultant told me they could find absolutely nothing wrong. Everything looked normal.

Back home. Back to square one. Now what?

I was too mentally drained to write. And after a few days of neglect, my home needed some TLC. The food cupboards needed filling. So now I am even more behind with my writing than I had anticipated.

It took a year to research and plan The Four Treasures of Eirean, a year to write it, and a year to edit and bring it to print. Of course, that was my first foray into the brave new world of the Indie Author. I know what I’m doing now(?!). The next book shouldn’t take anywhere near as long(??!!).

But less than five weeks? To produce a quality, polished read that people will want to spend their hard-earned cash on acquiring? I want to raise a lot of money with this book, so it’s got to be the best I can possibly make it.

As a friend recently commented, sometimes life gets in the way, but that’s what gives us something to write about. The seed of an idea which germinates into a story.

I know that’s true. But sometimes it’s hard to accept.

Can she do it? Yes, she can!

Hang on a minute…actually, maybe she can’t.

You see, the deadline is Friday 26th April. This April. That’s five weeks and three days. Thirty eight days. And in that time, I have to produce another sixty seven thousand words. That’s thirteen thousand four hundred a week, or one thousand seven hundred and sixty three a day.

Hmmm…that’s a lot of words.

So, what’s it all about?

Well, Friday 26th April is the closing date for the Write a Bestseller Competition being run by Poolbeg Publishing in conjunction with The Morning Show on RTE. And as everyone knows, you’ve gotta be in it to win it!

As December 2012 morphed into January 2013, I thought, huh! Loads of time! True enough, I already had the story all mapped out. All I had to do, was put it into words that people might like to read. Easy.

But I hadn’t taken into account one vital draw on my time.

Carys

Carys

Carys, my daughter.

If you have read any of my previous posts, you will know she has a rare syndrome called CFC (cardiofaciocutaneous). It’s complex, because it comes not only with developmental delays, but many serious medical conditions.

One of these conditions kicked off last year in June, and has been steadily getting worse ever since. To the point that doctors don’t know what to do about it. Which means that while she is not treated, she has weeks where she screams day and night with pain, won’t eat or drink or take her meds.

When this happens, I can’t write. Hell, I can barely even think. I just muddle through the best I can. It’s heart breaking not to be able to help her.

So why do I care so much about some dumb writing competition? I mean, it’s so trivial, right? Not to mention selfish.

Mothering is what I do day in, day out. It’s my number one priority. But I need to be me, too. And writing is also what I do.

Now, this trivial writing competition works on many levels. First, it gives me a kick up the jacksy, as I work better with a deadline to meet. Second, it offers a one book publishing deal to the winner with one of Ireland’s major publishers, Poolbeg. And it comes with publicity built in, courtesy of The Morning Show on RTE.

So, does this mean I’m shallow, too?

I hope not. I’m not seeking publicity for myself, but for raising awareness for Carys’s syndrome. The book is about what it means to live with a mystery child like Carys. The more that is known about CFC, the better it will be for fund raising purposes, future research, and perhaps finding solutions to the horrible condition my daughter is suffering right now.

So, can I do it? It’s a tall order. A hell of a lot of words, in very little time.  And after all the effort, I may not win, or even come close.

But I have to try, don’t I?

Stalker

My daughter’s heart is a ticking time-bomb with a fuse of indeterminable length. It could blow at any minute.

Hypertrophic Cardiomyopathy.

This will 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 holds it at bay. We will never shake ourselves free of its clutches. We can never hope to save her from it. But there is no way we are going to let it have her. At least not just yet.

Carys was born with Cardiofaciocutaneous Syndrome. It’s rare. Less than three hundred unique individuals worldwide share this affliction. Connected by nothing more than a flaw in the development of their genetics. We have never met these people, don’t know who they are, but they are our extended family.

I can still remember the day we were told our daughter would die before she was born. Until that moment, we had not known anything was wrong. Our first scan, we walked into that room full of such joy, such anticipation. I knew it was not good news before any words were said, by the frown on the midwife’s face, and the way she kept pushing the scanner over and over my belly, staring at the grey, fuzzy screen on the monitor with such intensity.

Our baby had a cystic hygroma and foetal hydrops. The prognosis was death by week twenty six gestation. Termination was mentioned, although against the law in Ireland. It would have meant a journey to the UK.

But stealing the life from this much wanted child was not an option for us. She deserved the chance to make something of it, such as it was. We decided to leave it to her, and let nature take its course.

In some ways, that might seem like the easy option, but believe me, there is nothing easy about waking up every morning and wondering if today will be the day your baby dies. Waiting to feel that first movement which proves life is still stirring within you. The joy, the relief, the elation, all tumbled together in the wrappings of fear and desperation.

Day by day, we muddled through the pregnancy, lurching from one medical emergency to another. Not knowing the demon which possessed our daughter, I trawled the internet for information, and realised with horror that there are a multitude of syndromes, not all of them with positive outcomes. I hoped and prayed for just five minutes of life, to hold my daughter in my arms, look into her eyes, and tell her how much we loved her. I needed her to know.

Instead of five minutes, we got seven wonderful, awful, amazing years, and counting. Our daughter’s syndrome has changed our life beyond imagining. It’s a long, hard journey, and it’s ours alone. It’s scary. Very scary, at times. But there are others plodding along similar paths, and we have much to learn from, and share with them.

I’ll share more with you, too, as time goes by. Because fore-warned is fore-armed, and living with a special needs child is not romantic, it is a daily battle. Some days you succeed, and win victory; sometimes, you admit defeat. Often, there is just  struggle, conflict, and stalemate. But you keep on going, because you know you have no choice, really. You can never give in.

The battle, and the journey, they are the price you pay for the privilege of sharing the lives of these exceptional children. In return, they give you far more than you could ever expect; unconditional love, and an opportunity to let go of all your preconceptions, open your eyes and your heart, and learn.

Its a difficult lesson, and an elusive one, but certainly something worth striving for.