Hope

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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.

 

 

 

 

 

 

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18 thoughts on “Hope

  1. Oh, Ali, your story grabbed me by the heart! It reminded me of the familiar poem about Holland. (http://www.our-kids.org/archives/Holland.html) My son has asked me before if I could have him be “normal” if I would, and while I hate for all he goes through, my answer is still no, because me is so sweet and lovable like he is and might not have that if he were “normal.” I know you go though so much more with Carys because of her medical limitations, but I also see how much you love her and how much love she gives you, and I’m so happy that you made the perfect decision for you and she is here. *BIG HUGS* to you all!! ❤ Thank you for sharing your beautiful and heart-touching, personal story. You are so amazing and strong. Others could definitely learn from you! 😀 xoxo

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    1. Hi Rachel, that story has been on my website for a while, although in a different format. Actually, you were partly responsible for my publishing it as a post, because of your amazing article about autism. I know how much reading other people’s stories have helped me cope with my own struggles, and I hope that my story will return the favour. I know the Holland poem well! It regularly does the rounds between us CFC moms! I have wondered a million times about would I change Carys and have her ‘normal’…honestly, it’s a difficult one. I would say yes for her sake, so she didn’t have to suffer, and could enjoy a life like any other. And of course, I’m sure it would make my life easier, too, in so many ways. But there is so much about her I wouldn’t want to change, because she makes me complete as she is. I guess as it will never happen, I needn’t stress over it! xxx

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      1. I’ve read some of it in your About page, and also some of Carys’ challenges when I first found your blog, but I do believe this post was the most complete. I just think you are so strong to accept the challenge so fully. I know a lot of women who wouldn’t, or rather couldn’t. You’re amazing and truly a hero even if you don’t feel like it sometimes. You’re awesome! 🙂

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  2. Oh Ali, sister, many hugs to you. Your story brought me to tears also. Making such a decision, you have such tremendous strength. Thank you for sharing your story with such openness and honesty. Carys is such a blessing to this world. Silver

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    1. In the end, it wasn’t such a difficult decision for us. In fact, there was no question at all. We always knew what was right for us and Carys, it was the most natural choice in the world to us. But we still had to consider the consequences, although at the time, we had no inkling at all of what they would be! And of course, there were doubts, fears, sadness, grief and denial to cope with, too. When a child like Carys comes into your life, it’s so easy to fall into the trap of mourning all that you’ve lost, rather than the joy you’ve been given. It has taken me years to learn that, in fact, I’m still learning that lesson, lol!

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      1. I think most of us are still learning that lesson. Sometimes I think it might have ben oddly easier for me as the person with a disability than it was for my parents, and they have never had to face the challenges and embrace the joys of raising someone as profoundly disabled as Carys is. I don’t think I’ll ever understand why certain people deal with certain challenges and others don’t… it usually seems like a question I wouldn’t even want an answer to if there was one. But I think the most important thing is how we live and respond to what happens in life rather than worrying about what may or may not come about. But I’m now in philosophy mode. From everything you say about Carys, there are moments when she seems more able than the rest of us. I was thinking the other day, both “disabled” and “enabling” now have negative connotations so often– and it seemed that were people to see looking out for and caring about, en-abling, others as positive, no one would be disabled anymore. They may have impairments or be differently abled, but that would no longer restrict or define a person. maybe we’ll get there. Carys changes the world by being herself, and that’s all we have to do, to, I think.

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        1. You’re right about that! My oldest son, Cai, he’s 12, has just started volunteering with younger kids with special needs. I’m very proud of him for that. He doesn’t seem to see the kids as disabled at all. He enjoys his time and interaction with them, as he does with all his ‘normal’ friends. That doesn’t just come from growing up around a disabled sibling, it’s an acceptance only the young can have. If more children can maintain that attitude into adulthood, then the future looks brighter for for those with impairments.

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  3. HI Ali, I just sobbed as I read this story. Oh my she is so perfect and beautiful. Thank you so much for writing this. Your honesty and strength has touched me. And your conversation with your husband after you got the news is so amazing and seems very familiar to my life. Love!

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      1. Hi there! I am a cryer:-) I am navigating the autism, nonverbal, sensory journey. Which is also the, “I don’t want to do this and I have no freaking idea what I am doing” journey. It’s scary and lonely and that’s that. Blah. It’s like being a member in a club that you want no part of but need.

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