aliisaacstoryteller

Judgement

bowling” Er… excuse me! “

The man tapped me on the shoulder. I was holding Carys, trying to get her coat on. It was late, she was tired, and we were about to leave. We had spent the evening at the bowling alley, all of us, the two boys, Carys, Conor and myself, and Cathal, Conor’s teenage son from his previous marriage. We had had a really fun night, or as they say here in Ireland, “it was great craic!”

Carys had been doing her usual thing, laughing and smiling, giving us all cuddles and kisses, and screeching with pleasure. She had been taking her turn, her name was up on the screen with her score, she had been stepping up to the ball holding on to mama and dada’s hands, pushing the ball down the contraption, and giggling at all our cheering her on. She didn’t have a clue what she was doing, but she loved all the fuss and attention, the noise, the flashing lights and loud music. Read More

Riding the Wave

It occasionally seems to me that some people think raising a child with special needs must be a romantic and heroic thing to do; they give you that look which says you’re doing something noble and good as they graciously concede “I couldn’t do it.”

How can they be so sure? No one knows how they will react until it happens, by which time it is too late; there is no choice.

Growing up, I had no experience of children with disabilities, so where were they? Hidden away, probably, where they were out of sight and out of mind, and therefore unable to offend the rest of society with their existence. But whom were we really protecting?  Read More

Carer’s Week| My Radio Interview

On-Air Radio Panel

Carer’s Week| My Radio Interview

I’m going to be on the radio tomorrow!

On-Air Radio Panel

I’m going to be talking to Joe Finnegan on Shannonside Northern Sound tomorrow about 1020am Irish time, talking about what it’s like to be a carer to Carys.

If you want to join me, here is the link.

I’ve never been on the radio before… feeling nervous already!

Night Terrors

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months.

Carys at 2 months old, pre-surgery. The haemangioma was to double in size over the next 2 months.

It was strange, being home with Carys after weeks spent at the hospital. That first night, we were almost at a loss as to what we should do. We just sat on the sofa, gazing at her as she lay in her moses basket. She only woke to feed, startling Conor and I all over again with the piercing stare of her ice-blue eyes.

As the boys ran around madly, pretending to be dinosaurs, I left Conor on the sofa with Carys snuggled in his arms. I went upstairs to get her cot ready, something I had overlooked in the chaos of the last few weeks.

When I came back down, Conor was slumped with his head bowed over Carys. It was only when I saw his shoulders shake, that I realized what was happening.

I had never seen my husband cry before. He was always the strong one, the positive one. Me, I was weak and watery. I wailed easily, always had. I had shed enough tears to fill an ocean since Carys had come into our lives.  I stood in the doorway, humbled, aching to go to him, whilst the boys ran round and around the sofa, oblivious.

But I didn’t. I let him have his moment. If I approached, I knew he would swallow back all that emotion, and resume his iron man façade again, for me.

Watching him cry, and resisting the urge to comfort him, was one of the hardest things I have ever had to endure.

***

Two am and I was still awake, listening to Carys 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. She lay still, but I could hear her breathing.

It’s funny how 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 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 sorrow, but I held my shield steady. I knew that without a weapon, I could never destroy them, but my shield could hold them at bay as long as I stayed strong enough to lift it, for my shield was love.

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 unraveled. 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, marveling 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.

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

Silence

Asleep

Asleep

I woke up suddenly. Something wasn’t right. I listened carefully to the sounds of the house all around me. Conor lay sleeping peacefully beside me. Vague noises from the telly room told me the boys were already up and playing X-box…before breakfast; we’d have to have words about that later. Something was missing, but what?

And then it hit me. Every morning I awoke to the sound of Carys’s voice, sometimes crying, sometimes whining because she wanted to be out of bed, sometimes gurgling and da-da-da-ing contentedly to herself, sometimes just to the music of her toys as she played in her cot. But always, I awoke to some notification of her existence.

This morning, she was silent.

The weight of her silence pressed down heavily upon me. Suddenly, all other sounds were blocked out by the dizzying, deafening roar of her absence. It was all I could hear.

I knew something must be very wrong. All my senses were screaming at me to jump out of bed and run to her room, but my body was paralysed. Fear had gripped me so tightly I could barely breathe, let alone move. I strained to hear the tiniest murmur, a rustle as she turned over in her sleep, a cough, anything to relieve this terror I could not shake off.

Nothing.

Now my thoughts were leaping with uncontrolled abandon around the confines of my brain. She would not be the first CFC child to have passed in her sleep. Her frail, swollen heart could fail at any time. She could have a massive seizure. She had vomited in her sleep on two previous occasions and not woken, although mercifully, she had been lying on her belly both times. Once I had found her with her blanket wrapped round and around her head whilst she lay on her back, arms flapping feebly at her sides, unable to free herself and too weak to cry out. And then there was the time she had passed out from coughing so much, she couldn’t pause long enough to draw breath. No wonder I was so afraid of what might be waiting for me. Sometimes, I don’t know how I manage to sleep at all. Oh…that’s right; sometimes I don’t.

A good parent would screw up every ounce of courage and rush to her child’s aid. Not me. I languished in my bed of misery, too afraid to confront the demons my imagination was conjuring up. Eventually, after what seemed an eternity of torment, I conquered them. I stumbled out of my room, and hesitated before her door. Upon it, her name was spelled out in bold, colourful letters. beneath her name, her chubby baby face peered at me from a favourite photo I had installed in a flower-shaped frame.

Taking a deep breath, heart palpitating so much I thought it would jump out of my chest and run around the floor with a life of its own, I pushed open the door.

It was dark in her room, but I didn’t switch on the light. I would know, even in the dark.

Carys was lying on her front, a petite, indistinct smear of soft colour against the white sheet. Her face was turned away from me toward the wall, her head a mass of tousled black curls in the shadows. I reached out and laid a tentative hand gently on her back.

She was breathing. I tip-toed quietly out.

 

Panic

How could this little cheeky face cause so much trouble?

How could this little cheeky face cause so much trouble?

Carys was dying in my arms, and there was no-one around to help me.

Actually, that wasn’t strictly true. There were plenty of people driving their cars past me, filing bumper to bumper, in a long slow unconcerned procession into town, but no-one stopped. I guess its human nature; don’t get involved, you don’t know what you’re letting yourself in for. That may be unkind; perhaps a woman crying and cradling a lifeless child on the side of the road just doesn’t look like an emergency.

Of course, Carys wasn’t dying, but I didn’t know that at the time.

This particular incident took place during one of my uglier moments, a detour on my journey to the dark side. I won’t re-live it now; suffice it to say that Carys quite possibly saved me from myself by what happened next, but in so doing, very nearly lost her own fragile little life.

A tiny cough disturbed my morbid, self-concerned thoughts. How could it be that I had forgotten she was with me?

The cough, so minute, so frail, so insignificant, was rapidly followed by another, and then another, in fact by a whole series, each coming so fast, one on top of the other, that she had no time to draw breath in between. She turned pale, did not respond when I called her name, and slumped to her left.

I watched all this in growing alarm through the rear view mirror, immediately pulling over onto the kerb. Heart hammering, shaking violently, fingers like unresponsive sausages; I could barely undo the buckle on her car seat. Time slipped a few notches into slow motion. I was moving through treacle, not thin air.

I dragged her from the car, crouched down, turned her face down over my knees, and pounded between her shoulder blades.

No reaction.

I flipped her back over.

Still motionless. Her eyes were already looking somewhere beyond this hard, cruel world.

It was so windy, that I couldn’t feel any breath coming from her mouth or nose. The traffic was so noisy, that I couldn’t hear if she was breathing. And I was shaking so much, I couldn’t feel her pulse, or detect any movement of her chest.

By now, I was hyperventilating in extreme panic. I couldn’t think. My memory, always leaky, abandoned all knowledge I had ever retained about CPR.

Helpless. Afraid. Guilty. Inactivity condemning my daughter to die. How could I live with that for the rest of my life? I did the only thing I could, for her and for me. I scooped up her lifeless little body and held her tight. As if the beating of my heart would encourage hers to respond. As if my arms would lend her their strength. As if my blood’s warmth would beat off death’s grip. If she was leaving me, I wanted her to feel my love and know she was not alone.

And then she came back. She opened her sweet little mouth and let out a weak, plaintive wail. I have never been so glad to hear her cry.

I resolved never to let such a situation arise again. Of course, we live under the constant threat of Carys’s medical conditions. They are our Mount Vesuvius. We can’t avoid them, and they will inevitably run their course. But I could do my best to learn and be prepared. I took a First Aid course, reasoning that logic and knowledge would assume automatic pilot when need arose.

But we are talking emergency situations here. And I am not, have never been, a rational, logical person. You have only to ask my husband about that! And panic was to rear its ugly uninvitedlittle head on yet another such occasion.

Two weeks before Christmas. Twelve days before Carys’s birthday. Mid day on a Sunday. Dinner time. I was feeding her cassoulet.

Suddenly, Carys began coughing and spluttering. She was choking, and it wouldn’t stop.

I pulled her out of the high chair, calling for Conor. I thumped her high on the back. Conor snatched her and tried the same. Nothing. Then she collapsed. She was blue, I mean really blue. I didn’t know it was possible for human skin to take on such an unnatural shade. We were losing her. Everything slowed. I remember looking at her and thinking, I know we will lose you one day, but surely not now, and not like this?

Against all advice ever given, I put my finger into her mouth, and tried to hook out the obstruction. Desperate times call for desperate measures, right?

No obstruction.

Conor took over whilst I phoned for an ambulance. They asked me to drive her to the main road and meet them there. It would be easier and quicker that way than them driving around all the back roads trying to find our house.

Then, with his long fingers, Conor found something lodged deep in her throat and hooked it out. There was blood all around her mouth where we had scraped her throat in our desperate removal attempts. Wordlessly, he held out a shaking hand. Resting innocuously in his palm was a chick pea. A bloody huge, rock-hard vile monster chick pea.

But how? I had soaked the little buggers all night, before I cooked them for three hours, and then mashed them to a pulp for Carys.

Carys began to cry in the car on the way to meet the ambulance. I was glad. It meant she was filling her lungs up with lovely lovely oxygen. It meant she was going to be fine.

Next Christmas, I did not make cassoulet.

But disappointingly, panic had overwhelmed me again, and I wallowed miserably in that knowledge. How would I ever fight back? How could I prepare myself to be Carys’s saviour? Next time, Daddy might not be there to be her knight in shining armour. In an emergency, there is no opportunity to take time out whilst you gather your thoughts, do a few deep breathing exercises, and ransack your medical journal to find out what to do. You just have to do it.

To be fair, I have helped others when necessary, and not turned into a jibbering, quivering lump of jelly. I even saved my son Malachy from choking to death on a marble when he was three (and old enough to know better… and yes, I still have that marble). But when Carys needs me, I fail.

I won’t give in. Can’t. There is no other option.

And I’ll take a First Aid refresher course. And will keep on doing so until finally, one day, it sinks in.

Epiphany

Image

This week, I experienced a kind of epiphany.

I was driving back from our local hospital. I had attended an AFO (leg brace) fitting with Carys, during which she screamed holy murder throughout, when in fact, all that happened was that she had plaster of paris smeared over her lower legs. I felt sorry for the old guy having his orthotics fitted in the cubicle next door; I only hope he had a hearing aid and could switch it off (something I often long for, myself, hehe!).

Carys recognises when she is inside a hospital building; too many horrid things have resulted from being taken inside one, needles, surgery, medicines, pain, being pinned down for xrays and scans, it’s all trauma to her. I don’t know if it’s the smells, the lights, the uniforms. I can’t explain to her in a way she can understand that this time she won’t suffer. She has come to expect it, and she reacts.

She had exhausted herself so much with her efforts, that she fell asleep before we even left the hospital grounds. All I could hear was the gentle sound of her breathing, and the wheels on the tarmac. It was a sunny day. The deep blue sky contrasted with vibrant green hills, and the sunshine overlaid it all with gleaming gold. I wondered how anyone could have believed that ‘blue and green together should never be seen’…they were made for each other!

I can’t be absolutely sure of the exact words, because the enormity of what I was thinking didn’t hit me until later, but my thought process went something like this;

I’ve stood on top of mountains on days like this. I’ve travelled, and been to places many people have never seen. I’ve seen things many people can’t imagine. I’ve experienced things some can only dream of. I may never do anything like it ever again, but that doesn’t matter, because I’m so lucky to have done so much already.

I felt content. And free.

Because since Carys came into our lives, I’ve been so busy mourning the things I want but can’t have, the things I still wanted to do but couldn’t, the places I had still left to see, the experiences I wanted to give my boys, even the daughter I had longed for but didn’t quite get.

It was quite a subliminal moment. I couldn’t believe I had been so shallow, so empty. Of course, I’m under no illusion; this was never going to be an easy journey, but at least I am finally starting to let it all go. To work on what’s really important.

I really think I may have set my foot upon the right path.

Later that same day, I bumped into a good friend in the middle of my busy local supermarket.

“So c’mere,” she said. “(another good friend) and I were talking, and we’ve taken some time off work to come over to yours at the end of the month to mind Carys and the boys, so you and Conor can go off and have a weekend, just the two of you…” She continued talking, but my mind had stalled. I couldn’t take in anything else, because what she had just said was still sinking in.

Conor and I haven’t had a night away from Carys since she was born.

And I’m afraid that, right there in the middle of that busy supermarket, I burst into noisy, snotty tears. Because if anybody wanted to give us something precious, that was it. Not to escape from our daughter and our responsibilities, but to have the chance to spend some time with each other and remember who we are when we are together.

Carys is not an easy child to care for. I could never ask anyone to take her on, not even my family. Don’t get me wrong, we have the occasional night out, and are fortunate in having a great babysitter. But a weekend away, well that’s big.

It felt like a reward. In letting go of my negativity, I had found one kind of freedom. Now I was being gifted with another.

But perhaps the greatest gift of all is having good friends. Thank you, you know who you are.

 

Hope

000_0051

Carys, one month old, on the day she came home.

Cai came first, reluctantly thrust into the world three weeks before he was ready. My glorious, flame-haired, first-born son. He lay on my belly, still covered in the mucous of birth, his dark unfocused eyes swivelling. Overwhelmed, I stared back, bemused by this tiny human scrap of life. Just a few ounces and a few days the right side of being premature, his body was so small it fitted perfectly into his father’s cupped hands.

Two years later Malachy joined us, five days late and so keen to make up for lost time he was almost born at a toll booth en route to the hospital. He arrived with a frown on his face.  He lay in his incubator, a giant amongst his peers, a tangle of wires snaking from his body to a bank of computers and monitors. His first year was touch and go, but he made it. My beautiful second-born, Mal the comedian, the musician, the stuntman, always with the glass of life half full.

Still someone was missing. So along came Carys, a longed for daughter and sister. Our family was complete.

Our sons had done their jobs well. They had prepared us for what was to come. We didn’t know it at the time, but we were ready.

*

 The pregnancy and the first years of Carys’s life are cloaked in thick, white fog through which events swim briefly into focus before they are lost once again. These memories are painful, yet nevertheless precious. They are tenderly wrapped and locked securely in a dark corner of my mind, treasure to savour later. For the days after Carys is gone.

I don’t ever want to forget how it feels to hold her, the brightness of her smile, the ripple of her laughter, the smell of her skin, the blue of her eyes. But I know I will. Time is cruel like that, and sly, stealing away the vibrancy of those beloved recollections whilst healing the pain of loss. Perhaps one is fair payment for the other.

*

 I remember very clearly the day we first learned something was wrong. The day we were told our daughter would die before she was born. The day which changed us forever.

The midwife had frowned, leaning closer to the scanner. I had expected a smile, indifference at least. Not a frown.

“I just have to get my colleague to take a look at this,” she said, patting my arm, and left the room.

The air seemed filled with the beating of my heart, faster and louder, as panic took hold. Conor gripped my hand tightly, and I squeezed back, but neither of us said a word.

The colleague was older and probably more experienced. They both pored intently over the screen, faces carefully composed into identical neutral expressions. I stared too. What did they see that I couldn’t?

Then it was over. They were helping me up from the bed, wiping the gel from my swollen belly, inviting us to sit at the table by the window.

At that point I knew something was seriously wrong. Only the couple who are about to receive bad news get to sit there. Everyone else is shown out as quickly as possible, to make way for the next set of parents. I looked at Conor, my question mirrored in his eyes. They can’t mean us, surely? This kind of thing only happens to other people.

Automatic pilot took over as I switched off. Through the torpor which enveloped my brain I was aware of a new voice added to the mix, a male voice, with the authoritative tones of a doctor. His answers swapped places with Conor’s clipped questions. Strange words swirled through my consciousness … ‘foetal hydrops’… ‘cystic hygroma’… ‘fatal’… ‘termination’…

At some point the conversation ended, and we were shown out.

Back into the corridor.

A bright and cheery corridor where only an hour earlier we had sat in the queue, eagerly anticipating our first contact with our new baby. A long line of happy, excited parents-to-be, all smiling at each other. Strangers waiting patiently, united by our common state.

Only an hour ago. How could so much change in so short a time?

We began walking back down that corridor. Past the line of happy parents-to-be. Into the lift. Down to the ground floor. Through reception. Out into the foyer. Across the car park. Out through the hospital gate. Along the main road to where the car was parked.

I didn’t see any of it. When we stepped into the corridor, grief seized me and became my whole being.  I was aware only of Conor’s strong arm around my shoulders as he negotiated our route, and steered me in the direction we had to take.

We couldn’t go home. We had to make some attempt to get our heads around it first. We went somewhere neutral. We couldn’t bear our usual haunts to be forever tainted by this moment. We sat holding hands across the table like new lovers, but really we were gripping onto each other so hard just for consolation.

“What will we do?” I whispered. Conor always knew how to make my problems go away.

“I don’t know,” he admitted.

That threw me.

Our conversation went round in circles as we drank coffee and listened to the soothing voice of Ron Sexsmith filling in the pauses.

Those words were still bumping around in my head. Cystic hygroma, the doctor had explained, was a cyst containing lymphatic fluid usually found on the neck. It was often linked with foetal hydrops, which occurs when the heart has to pump a greater amount of blood around the body in order to supply the same amount of oxygen.  This increased demand on the heart leads to an accumulation of fluid in the skin, scalp, abdomen, membranes of the lungs and heart, and ultimately to heart failure.

“The doctor mentioned… termination.” I could hardly get the word out.

Conor nodded, his face drained of colour but suffused with emotion.

“I thought termination was against the law in Ireland.”

“It is. But these are exceptional circumstances. We’d probably have to travel to England to do it.”

I sipped my cappuccino. It had gone cold, but I didn’t care. I hardly tasted it, anyway.

“I don’t think I can do it,” I said.

“We could fly over,” offered Conor. “We don’t have to go by ferry.”

“I mean the abortion. I don’t think I can kill my baby, just because she’s not perfect.”

Conor sighed and sat back in his chair, removing his hand from mine, and pushing it through his tangle of thick dark hair. I stared at my hand, resting empty on the table, feeling lonely without the warmth of his wrapped around it.

“No one would criticise you for it,” he said. “It’s more than just having a baby which isn’t perfect. We’ll have that child for life. What kind of existence will she have, if she is severely disabled? What kind of life will we have? Not to mention how it will affect the boys.”

I knew he was right. There was no magical cure, no medicine, no surgical procedure which could help our baby. She was left to fend for herself. Live, or die. Or be murdered by parents too selfish to give her a chance.

“I have never doubted our genetics,” I confessed. “I just assumed our cells would always produce perfect children. Actually, I didn’t even assume it; I just never even thought about it.”

“Well, we managed it twice before.”

“Exactly. So what’s different this time?”

“Nothing’s different. Same parents, same chromosomes.”

“But a cystic hygroma and foetal hydrops. Something must have caused it. And you heard the doctor. They are often symptomatic of something else, some kind of syndrome.” I shivered, wondering what our baby’s demon would be, should she survive.

“Stop it, Ali!” Conor snapped suddenly. “You’ll drive us both mad trying to make sense of it. There is no logical reason. Even the experts can’t explain it. We have to be practical, and decide what to do next.”

“There’s nothing we can do, is there? Except wait. Week twenty-six, he said. That’s only eight more weeks of life left. Then she’ll die.”

Might die,” Conor reminded me. “Doctors aren’t always right.”

I might have smiled, but my face seemed to have forgotten how. So typical of him to always look on the bright side, no matter how weakly it shone.

He reached for my hand again. “Do you think you can go through the next few months, wondering every morning if today will be the day our baby dies?”

I couldn’t trust myself to speak. I just hung onto him for all I was worth.

“You do realise if the baby dies at week twenty-six, you’ll have to be induced.”

I shut my eyes tight against the vision of going through hours of labour to deliver a dead child. A dead, deformed child.

“If she survives, we may have to spend the rest of our lives caring for a handicapped child. Most of it will be down to you, as I have to work. You do understand that, don’t you?”

I stared at him, a rising tide of anger sweeping aside all other emotions. “You sound like you actually want me to get rid of her.”

He recoiled, as if my accusation had stabbed him through the heart. “Of course I don’t!” he protested. “But we do have to consider every eventuality.”

As I sat there fuming at the injustice of it all, my anger turned to blame. Perhaps all this was his fault. Maybe there was something hidden in his family’s genetics that nobody would acknowledge. Perhaps it was my fault. After all, I had eaten that prawn last week, and was guilty of sneaking the odd gulp of red wine.

I blamed God, Mother Nature, whatever larger entity had decided that this child was to be my fate. I even felt angry with the doctors, for whilst I couldn’t blame them, it was they who were responsible for discovering this nameless thing which possessed my child.

But furiously apportioning blame changed nothing. I still carried a faulty baby within me, and we still had to decide what to do about it.

My choice: let nature take its course and endure the consequences, a prison sentence as long as the rest of my life. Or Carys’s, whichever was the shorter.

Or abort, and live with an eternity of guilt, always wondering if the doctors had got it right or wrong.

How could we snuff out this faint little flickering candle, just because it didn’t burn as brightly as all the others? How could it be right for the government, or the church, or groups like Pro-Life, to decide for us? What did any of them know of the impact bringing up a sick, disabled child has on a family? In the self-righteous pursuit of their cause, did they even care?

*

Amniocentesis did not reveal her syndrome, but it did reveal we had a little girl. We named her Carys, from the Welsh word for love, and Morgan, which means sea-bright. We needed to think of her not as an embryo with a defective gene, but as a real person, our child, our special daughter.

And somehow, without even realising, our decision was made. We decided to let nature take its course.

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.

Yet whilst the experts urged us to accept the inevitable and discuss funerals, I could feel something else growing within me alongside this new, tragic little person.

It was hope.

I don’t know where it came from. Not from religion, for I had proof now that God did not exist. But I could feel it, and in my mind’s eye I could see it: a shining thread of light, so strong, 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 this 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.

And yet, I gradually felt myself fading away. I became a mechanical being, jerkily going through the motions, ricocheting aimlessly between the boundaries of emotion and reaction. Somewhere in-between, I tended my home, took care of my boys, and tried to be a wife to my husband. Behind the strong brick wall, I was crumbling.

 *

  Mal was unsettled, feeding off my tension. It took a long time to soothe him into sleep. I was tired myself, and my patience was wearing thin. As he dozed off, I tip-toed out of his room to be confronted with Cai running joyfully up and down the hall, half undressed, a trail of clothing strewn across the landing.

“Shhh.” I put my finger to my lips.

“No!” His favourite word, the first he ever said.

“Be quiet,” I exclaimed. “Mal is trying to sleep. Why don’t you go and get your pyjamas on, and then I’ll read you a story.”

“No!” he shouted at the top of his lungs, and darted off with a mischievous ‘come and catch me’ look on his face. The door slammed loudly in his wake. I winced as a weary wail sounded from Malachy.

I followed Cai into his room. He was bouncing happily on his bed, pyjamas in a heap on the floor, tousled red hair flying.

“Pick them up and put them on.”

“No!” His big blue eyes flashed defiance.

I picked up the pyjamas. Sitting on the bed, I pulled my rebellious child towards me, and began stuffing his legs into the pants. He kicked wildly, enjoying the rough and tumble.

“Don’t want to go to bed!”

My adult strength proved no match for his childish determination, for at that point in the struggle his foot connected hard with my chin. My head snapped back, eyes watering at this sudden jolt of pain. Before I even realised what I was doing, I landed him a sharp, stinging slap on his thigh. Cai immediately went still, clutching at his leg.

“I’ll tell Daddy!” he yelled, shocked, his little face crumpling into a pink, angry ball.

“So will I!” I shouted back.

He began to cry.

Instantly, my rage dissolved into a muddle of sorry tears and regret. We each apologized and forgave the other. For Cai, it was soon forgotten.

But I couldn’t forgive myself. I wanted to be punished, and it had nothing to do with hurting Cai. These days, people only ever looked at me with understanding and sympathy. It was not what I deserved.

“It was just a slap,” Conor said later, when I confessed.

“Yes,” I agreed, wiping away tears. “Just a slap.”

But it wasn’t. It was so much more than that.

The red mark on Cai’s leg faded long before the bruises on my heart.

 *

 Wherever I looked there were other pregnant women. Happy, smiling, pregnant women. And inevitably, they tried to draw me into their exclusive club.

“When are you due?” “Do you know what you’re having?” “Are you all prepared?”

Too soon. Yes. No.

No one ever asked, “Will your baby be born alive?” Or “Will she be deformed?” Or “Will she be a retard?”

Happy, happy, happy. Everything about pregnancy and childbirth is so bloody full of joy.

Except me.

But I put on a good act. Only my friends knew how much I was hurting as my mouth stretched into its glad arc and told its lies.

My friends gave me the space I needed, but discreetly hovered around me, like planets going around the sun. They were always there, unobtrusive but steady, like stepping-stones to hold me up out of life’s mire, or posts to lean on when my burden grew too heavy.

We didn’t talk about it much: I was too raw, too devastated to articulate. But friendships don’t need words to bind them. They had eyes in their heads and hearts in their chests; they looked at me, and they felt what I felt. What they didn’t know they guessed. So between them, they built their wall of love and protection around me.

 *

 Although we had half expected it, had never been led to presume anything else, the day that Carys stopped moving inside me came as a shock. We rushed to the hospital, full of panic and a sense of fate.

The midwife allocated us a cubicle, and said the doctor would be with us shortly. Next door, the woman behind the curtains groaned and moaned her way through the first stages of labour, her efforts rewarded by her partner’s murmured encouragement. It was the last thing Conor and I needed to hear whilst we contemplated the demise of our own unborn child.

We sat looking at each other, unopened magazines sitting on our laps. The minutes ticked into hours. No doctor came. The woman next door was wheeled off to the delivery suite. Hospital life revolved around us as if we were invisible, cocooned in some other dimension.

“I just want someone to listen for a heartbeat,” I said to Conor, voice trembling.

Something in his face hardened.  “I’ll be back in a minute,” he said, stalking off down the corridor. After a while he reappeared, sternly frog-marching a somewhat perturbed looking midwife to my bedside.

She placed her foetal stethoscope on my belly and listened carefully. I fixed my eyes firmly on Conor’s, too afraid to meet her gaze and acknowledge what I might see there.

“There is a heartbeat. Your baby is alive,” she said.

“That’s all I wanted to know,” I sobbed. “Why didn’t you do that when we arrived? You have put us through the worst afternoon of our lives.”

Sometimes it felt like me and Conor against the world. We wrapped our arms around each other as we walked to the car park. Actually, I believe we might have skipped a little!

 *

 The dreaded Week Twenty Six came and went. And another week. Followed by another. And so on into the third trimester, our baby still very much alive inside me and making her presence felt.

Conor and I dutifully attended our regular weekly scans, but something was different this time. I lay there quietly in the dark, Conor on a chair beside me. Dr O’Neil pushed the monitor relentlessly over and over my big round belly, staring at the screen intently. My breath caught in my throat. What was taking her so long?

Finally, she stopped and turned to stare at us, arms limp at her sides, her features softened with wonder.

“I don’t want to get your hopes up,” she said, “but today’s measurements seem to show that the foetal hydrops could be resolving.”

Of course our hopes sky-rocketed immediately. It was unheard of. Hydrops was known to resolve sometimes during the second trimester, but never the third. Week by week, measurements consistently revealed a fading hydrops and shrinking hygroma. As they withered, so our joy blossomed.

Against all the odds, our feisty little daughter had fought her lonely battle for life and won.

 *

 Carys was delivered three weeks earlier than expected, on a cold, grey December afternoon. I was allowed to hold her for a few moments.

“Her skin’s a little puffy,” I commented, consumed with worry.

“It’s just residue from the foetal hydrops,” replied the midwife brightly. “She’s very healthy. You have nothing to worry about.”

“But there’s a bulge of skin at the nape of her neck.”

“That’s what’s left of the cystic hygroma. As she grows and fills out, her skin will stretch and that roll will disappear.”

I stared at my daughter. She slept peacefully, safe within the halo of my arms, trusting in me to defend her. Unfortunately, the danger lay deep inside, somewhere my protection couldn’t reach. Submerged beneath the surface, where it couldn’t yet be seen. To the untrained eye she appeared perfect, normal.

Her skin was smooth and golden. Thick black hair curled round her forehead. When she opened her eyes, they weren’t navy in color, like other newborn babies. They were the palest silvery blue, a shade I have only ever seen in the Skerries sea on a calm winter’s morning. The same sea beside our home, where we had planned to scatter her ashes. The sea we named her for, when we called her Morgan, the sea-bright child.

The midwife took her from me gently. I wanted to shove her arms away. “Time for Daddy’s cuddle,” she whispered, handing her over.

Conor looked tenderly into that little face, emotions working beneath his skin, shaping his expression into something I knew he would rather hide.

That was all we had, before she was taken from us to the special care baby unit.

The next day I was discharged from hospital, but Carys was not.

On Christmas Eve, a tangle of blood vessels began to bloom on her forehead. The haemangioma.

 

 

 

 

 

 

The Parent-Detective

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I was going to write about something entirely different this week, and then this happened.

Carys’s paediatrician : So, I last saw Carys in August, and you thought her (chronic) constipation (and faecal impaction) was due to the thickener prescribed for her fluids. (Please note: the bracketed words are my own insertions following diagnosis, which he failed to include.)

Me (confidently) : Yes, I’m convinced of it. Since I stopped giving her the thickener, she has been a different child. There has been no constipation. 

Paed (raising eyebrows and staring at me over the top of his glasses) : Really? I’ve never heard of that before.

Me : Well, it is made from corn or maize, which can have adverse effects on people suffering from constipation. I’ve read about some new studies which indicate that low fibre diets are better for people with poor motility of the gut, like Carys.

There were five other doctors in the room at the time, all the paediatrician’s acolytes and sycophants. As I uttered these sacrilegious words, six pairs of eyes bored into me, all laden with varying degrees of disbelief and contempt at my ignorance. I felt the heat rising in my face, and hoped it wasn’t accompanied by blushing.

You have to realise that Carys’s paediatrician’s area of expertise lies with the gut and its functions; before I met him, I had no idea that poop had been officially graded into seven textures called the Bristol Stool Chart…google it if you don’t believe me! You’ll soon be whiling away many a happy moment staring into the toilet bowl and trying to assess your state of health according to the Bristol standard.

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Now, don’t get me wrong; Carys’s paediatrician is the best this side of Dublin, and I’m very grateful to have him in our lives. Judging by the reactions of her many specialists, he is very highly thought of by the medical fraternity. I know he must have worked incredibly hard to climb to such lofty heights. Yet there I sat, in his office, redefining  for him the role of fibre in the human diet.With such a frosty reception to my hypothesis, I no longer felt quite so confident, and my well thought out arguments seemed to dissolve into…well, verbal diarrhoea, while we’re on the subject, to be quite honest.

Me : Um…I’ve put her on a low fibre diet, too, and we’re avoiding gluten.

Paed : A high fibre diet is better for issues of constipation…

Me (interrupting quickly) : Not for someone like Carys who has low motility. (Defensively now, with nervous laugh) Well, whatever I’m doing, it’s certainly working for Carys.

Paed : Hmmm…(writes something down in his notes) 

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I could tell he wasn’t convinced, and why should he be? We have all grown up believing that high fibre, brown, wholegrain is best. To be blunt (some might say cynical), high fibre is big business. Doctors, world health authorities and government health departments have all backed this school of thought. No-one’s in any hurry to make a U-turn at this stage, despite the growing number of gastrointestinal diseases, such as constipation and IBS. I should have used the traffic jam scenario; the more traffic you add, the more congested the road becomes. It’s the same with fibre. If you have too much for a weak gut to shift, adding more ain’t gonna help.

Me (feebly) : I’ve even got her Movicol down from six sachets to three…

Paed (stops writing, lays his pen down and looks at me) : Movicol is just a stool softener. She can quite safely take it for the rest of her life.

I clamped my mouth shut. I knew I was beating my head against a brick wall. He just didn’t get it. Although we had the same aim, Carys’s good health and well-being, we clearly both looked at it from completely opposing viewpoints. As a parent, I would do anything to limit the amount of chemicals going into my little girl’s frail body. If there’s a natural way to achieve the same result, I’m going to find it, because I’m not just a parent, I’m a Parent-Detective.

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Thickeners usually come as a white powder. The more you add to a fluid, the thicker and stodgier it gets. If it can do that to a liquid, what is it doing to your insides?

The metamorphosis took place a year and a half ago, when this all started, Carys’s bowel was so impacted and swollen, it pressed against her bladder; she couldn’t pee and she couldn’t poo… no wonder she screamed day and night with pain. It kept recurring. Scans, ultrasounds, blood tests revealed nothing. All the experts said nothing was wrong. They began to talk about behavioural issues, but I knew her cry was one of pain not temper. I knew something was wrong, but no-one believed me. Meanwhile, I watched my daughter screaming and writhing on the floor in agony day in, day out, watched her hard-won development regress, and felt helpless. When I stood in the doctors office holding my screaming daughter, with tears running down my face, and he said to me, “There’s nothing more I can do.”, I knew I was her only chance. That was when I truly became a Parent-Detective.

(Btw, I do forgive him for saying that; he really had tried everything he could think of. He is a doctor, not a god, and human bodies aren’t all alike. There’s so much modern medicine can’t cure. But it was so easy for him to turn away. A parent can’t do that, wouldn’t even if they could. I needed help for my daughter, and support. That’s where he failed.)

I researched and researched. I talked to other parents. I observed Carys, even though it broke my heart. And I realised that if there were no physical issues causing the problem, what was not coming out had to be caused by what was going in. Tried various things. And finally made the connection. And I, no-one but a mother, just me, I solved the mystery for my daughter, and I made her better.

I did that. They might scoff at my ideas, which fly in the face of everything (they think) they know, these doctors, but after eighteen truly horrible months, with all their expertise and experience, they couldn’t fix my daughter. Doctors nil, Parent-Detectives 1.

As I walked out of the doctor’s office, the paed looked up at me and said, “I’ll have to remember that about the thickener.”

Correction…I think the score just changed. Doctors nil, Parent-Detectives 2, I believe.

 

 

My Fun Friday

Tantrum Tessie…you wouldn’t think it, would you?

I could see her approaching, wending her way through the tables toward me with a determined look in her eye. She had something to say, and Bejaysus, she was going to have her say. I prepared myself mentally for what life was about to throw at me.

All I’d wanted was to spend a bit of time with my kids. Only two days of half term break, and the boys had wanted a pyjama day yesterday. I didn’t mind; they’re still young, and school wears them out. They play sport almost every night, so they deserve some down time. But today, I was determined we’d have a day out together. All they asked for, was lunch at KFC. Typical boys, always happy if they’re filling their bellies, particularly with junk food.

So that’s where we went. I was well organised. Carys was fed and watered, nappy changed, before we left. My bucket-sized handbag was filled with her fave toys, blanket, DVD player and headphones; we were all set.

Carys was in great form…until we stepped inside the restaurant. One minute she was smiling, the next she was screaming like a banshee. I can’t blame her; KFC would not be my ideal destination of choice, either, but happily, my behaviour is slightly more controlled.

There was no pacifying her. The toys, the blanket, the DVD’s that she normally loves, they weren’t what she wanted. Even my cuddles and singing didn’t work.

By now, I had donned the Invisible Blinkers. You won’t ever have seen them (they’re invisible, duh!), but believe me, every mother has a set. They enable you to avoid noticing all the stares which are directed your way when your child has entered Tantrum Mode in a Public Place. But you can still feel them; the stares tinged with relief from other parents, who are glad it’s your child playing up and not theirs; the stares tinged with annoyance from the young and carefree, who have yet to experience the joys of parenthood, and the stares from the staff at the disruption your child is causing to their well run establishment.

I jammed her back into her pushchair and beat a hasty retreat, while the boys finished their meal. My sons have great little personalities; I had been so looking forward to a bit of banter and a bit of fun, just me and my boys, and Carys. I was so proud of them, the calm way they handled their sister’s outburst; they never accuse her of spoiling their fun, never ask, “Do we have to bring Carys?”. I’m not sure I would have been so gracious or understanding at their age.

Outside, it was windy and cold, but at least the screeching didn’t seem so loud. I could see through the window, though, that I was about to be the recipient of some unwanted advice.

The determined woman placed her hand on Carys’s head (which didn’t help,as Carys has an extreme sensitivity to having her head touched) and looked at me with accusation in her eyes. “Will you not do something for the child?” she asked, reproachfully.

The woman was a stranger. I had never seen her before, and am unlikely to ever see her again. I shouldn’t have cared, but that question hurt. I never stop doing things for that child. I do things for that child which most parents can’t even begin to imagine. In the few moments it had taken her to observe Carys’s behaviour, like everyone else in that building, she had formed a judgement of me as a mother, and found me so severely lacking, that she had to say her piece. Then she walked away, shaking her head, casting a last, pitying look at Carys. Because that’s how easy it is. But I can never walk away.

I bundled my family back in the car, abandoning all plans for the rest of the afternoon. On the way home, Carys danced and sang. I smiled to see her happy again, but couldn’t suppress the odd tear from falling too.

The Battle for the Disabled Parking Spot

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“Disabled parking spaces are for disabled people!” he yelled at me.

I know, I thought. That’s why I’m parked in it. But he never gave me the chance to formulate my reply.

“They’re not for mothers with children!” he continued loudly. That made my blood boil. Since when did disability and motherhood, or childhood for that matter, become mutually exclusive? 

Perhaps he was enjoying the attention he was attracting with his bellows. Perhaps he’d had a bad day, and just needed to vent his frustration, I don’t know. I watched sadly as he limp-stomped around the the rear of my wheelchair car towards the windscreen. Prejudice and attack from outside the circle of disability, whilst abhorrent, was something I could understand. But coming from within, from another disabled person, it was kind of hard to take, Furthermore, his outburst did nothing to further our ’cause’; all the sympathetic looks from passers-by were directed at me, not him, even though they thought I was an able person stealing a disabled parking space.

Then he stopped, kind of collapsed in on himself, all his bluster suddenly blown away. He’d seen my disabled parking permit displayed on the dashboard. Did he turn to me with a wry smile on his lips, a sorry look in his eye, apologetic words on his tongue?

Did he hell!

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“I hope you make sure and tell those mothers with babies who park in these spots,” he flung at me, and limp-stomped self-righteously off, head held high. I watched him go, wondering at the vehemence of his hatred for mothers with children. Some mothers did seem to think that the big blue ‘P’ applied to them too. I have also heard the able-bodied express their annoyance at the rows of empty disabled spaces in a packed car park.

I guess life is just full of injustice and inequality. Maybe it’s how we deal with them which points out true disability.

I strapped Carys into her wheelchair, locked the car, and pushed her towards the ramp which gave wheelchair access.

My new limp-stomping angry disabled friend had abandoned his car on the yellow lines, and completely sealed off the entrance to the ramp.