Daughter of Rain

By Corné Smith

“Hope is a sanctuary of the soul – a sacred place of lightness of being and of knowing. It’s the firm conviction that the cold, quiet distance between the darkest of valley nights and the brightest of heavenly stars, is nothing but... time. The time it takes to decide that reaching up and grabbing hold of those stars is not only possible, but also adventurous and significant.”

Corné Smith

Ten fingers, ten toes. A sigh of relief...
At no other time during our earthly sojourn do human beings attach so much significance to the number 10. It represents the perfect score - the answer to every parent’s prayers - a perfectly healthy newborn baby. But what if their worst fears come true? What if their baby is born ‘imperfect’?

For first time parents, Corné and Michelle Smith, their hopes and dreams for a perfectly well child were beaten to a pulp when they received the heart breaking news that their beautiful daughter, Tahlia, had been born with a medically incurable brain-injury. In an instant they were flung onto a physical, emotional and spiritual battlefield, facing colossal giants very few parents ever do, together with their brave child.

As they grappled with Tahlia’s neurological, developmental and physical condition, their valley of despair and depression, onslaughts to their marriage and many other giants, they discovered the big WHY of their battle. And they witnessed how their Heavenly Father not only prepared them for this war, but also fought alongside them.

This book, as chronicled by Corné and illustrated by Michelle, is their story of courage, faith, hope, love, restoration and victory over a season of unspeakable pain and hurt. Can their story help and teach others how to face their own giants and, chapter-by-chapter, uncover their WHY? The secret lies hidden inside.

• Language: English
• Publisher: Corné Smith
• Release date: May 28, 2019
• ISBN: 9780463813973

Book preview

Prologue

This is a book that you will not be able to put down. The more you read, the more you wonder what’s going to happen next!

Being a parent of a brain-injured child as well, I have so many questions about the future. The medical fraternity provides you with a diagnosis of your child’s condition. Then they add to your confusion by saying that each child is different and that they cannot really predict what lies ahead of us. As a matter of fact, the day a brain-injured child comes into your life, you jump onto a rollercoaster; one that no one can prepare you for. It touches every aspect of your life and the uncertainty of what looms on the horizon for you and your family becomes one of the most difficult life challenges to deal with. Nobody expects to have a brain-injured child and because it is the last thing you as a new parent expect to befall you, the shock is, quite frankly, devastating.

Through his book, Corné Smith has managed to provide parents of brain-injured kids with answers to many of the questions they have. He enables parents on this rollercoaster ride to understand their world better and get to grips with the uncertainties of the future. By sharing his story as a father of a brain-injured daughter, Corné has been successful at preparing the path for new parents of brain-injured kids to follow.

Corné is an honest and authentic person, which reflects in his book. He doesn’t hide anything from the reader. He describes deeply personal events and experiences he has had to endure together with his wife, Michelle, and his daughter, Tahlia-Nia. At times while reading the book, I even wondered if parts of the story should really be told to the world. But because he is a genuine individual, this book is bound to help every reader to realise that the road with a brain-injured child is not an easy one. It will touch every aspect of your life forever. Yet, he reminds us that with God anything is possible. God is more than capable of lifting you out of the deep hole you find yourself in.

The manner in which God has supported this family to where they are today only comes from His powerful hand. The book has given me tremendous hope for the future, renewed by the knowledge that God is still in control. I am again made aware of how one encounter with the living God can make all the difference; how His loving presence and guidance can give a parent the strength and courage to continue on this most difficult path. This book helps you to recognise that God will carry you no matter how tough your circumstances are.

I truly believe this book will help thousands of other parents with brain-injured children to find their way.

Cornelius du Preez

Pastor, Streams of Life Church

1

An Impossible Dream

Daddy, will you please dance with me? she asked with a sweet smile, her head slightly tilted.

I fended off the urge to erupt into tears while I gently folded her hand in mine and walked her to the dance floor. She swirled into our starting position just as the waltz began to play.

One-two-three... one-two-three, I counted softly, desperate to make her proud.

I’ve never been one for dancing. Not my scene. But this moment, this single event, had been the fuel of my dreams ever since we’d heard that our daughter was profoundly brain injured¹ since birth. And now, here we were... dancing... dancing... one-two-three… one-two-three.

With every sweeping count, I felt wave after wave of overwhelming relief wash away what seemed to be ages of imprisoned what-ifs and if-onlys. Right now, right here on this dance floor, our Tahlia was showcasing to the world that the impossible was possible. That she was possible.

Her glistening blue eyes shifted from mine to somewhere in the small gathering of family and friends watching her whisk across the floor. She smiled a smile of a thousand dreams. Her gaze momentarily locked upon her mom – her hero.

Always the master of make-up, Michelle was never found wanting in this arena. Even when she cried, she was able to muster some form of respectability in the eye of the beholder. She had found practical ways to prevent tears from smudging her eyes and streaking black down her cheeks, especially during the weeks and months that followed Tahlia’s diagnosis. Crying had been a constant companion back then.

But tonight she wept for a different reason. Her personal appearance took backstage. She looked like Alice Cooper by now, as her mascara melted in tears of joy streaming down her cheeks. But she seemed impervious to it. She just focused on her daughter.

One-two-three... one-two-three, she murmured softly.

Always encouraging Tahlia’s progress one step at a time, I thought.

Early on in our journey we learnt that, if we were to have any hope of crossing our valley of despair, we had to conquer it one step at a time… one day at a time… one breakthrough at a time. Often this meant counting one and two and three with such patience that life itself seemed unbearable – frozen in time. Sometimes we counted backwards. You know: two steps forward, one step back. Those were the most painful moments, and they manifested more often than not at the start of our journey.

I decided to steer my thoughts away from the memory of those days and to my wife.

Our eyes briefly met in between the Mozart twirls. She winked at me and I understood the significance of her gesture. We often shared our dreams about Tahlia. She had hers. I had mine. This waltz was mine. So I knew she was happy for me. Mostly, she was grateful. The realisation of my dream meant that hers had reached full circle too.

We never imposed our dreams upon our child. But we never hesitated to dream the impossible on her behalf. Frankly, we just had to. Maybe it was a matter of throwing out a personal lifeline for the sake of our mere survival. Perhaps it was our way of dealing with, and overcoming, the perilous reality of our daughter’s brain injury. Or maybe it had to do with a fundamental belief that when the dream is big enough, the facts just don’t count.

No matter the reason, we knew that we had to dream BIG even when medical science had no hope for Tahlia’s neurological growth beyond four years of age. We knew without a shadow of doubt that, in the absence of vision, we would surely perish.²

But here we were dancing, my little Cinderella and I.

I sensed the waltz nearing its grand finalé. I mentally prepared for my rehearsed pièce de résistance. With a swanky move, I flicked her backwards, ballroom style, just as the music faded. The crowd cheered and clapped. I realised that their rapturous applause wasn’t as much the result of the dance itself as it was for the miraculous implication thereof. Profoundly brain-injured children don’t dance. They sit in a wheel chair all crumpled up like an abused Coke can. But mine just did!

This was fun, Daddy, wasn’t it? she asked me, gleaming with joy.

The best fun ever, I replied with every fibre of my being.

I hugged her and then gently kissed her on the cheek. She reciprocated my love for her by sighing contentedly. How dependent upon those sighs we had become! During the first couple of years when she was unable to talk, her sighs were often one of our most rewarding yardsticks determining her state of happiness. So I knew she was happy right now... yet no more than me.

Suddenly and unceremoniously the clock struck the hour. In split seconds, I found myself back in our living room.

Such pretentious timing of the kitchen clock, I thought.

To my disenchantment, I was jerked out of my daydream to my current reality. I was still cradling Tahlia in my arms, but now she was only a tiny three-year-old. I noticed myself swaying her to and fro, humming a waltz; my body still responding physically to the dying images of my dream.

A sigh of contentment interrupted our sacrosanct moment. I looked down at my microcephalied, cerebral-palsied, epileptic, born-deaf child. I smiled. She was graciously happy. And this despite the brokenness of her brain and body. She was completely unaware of the gravity of her condition and her chances of living a ‘possible’ life. I squeezed her tightly.

A firm resolve stirred deep within my soul. We shall stay the course; be steadfast in our cause. Our child shall be well. She will reach her fullest potential.

Were we to dare dream the impossible dream? Did we dare not?

2

Shadows of Death

in the deep valley

shadows grow taller with time –

soon day shall be night…

HAIKU¹

Tuesday, 21st September 2010

I stared at the engagement ring. It’s truly beautiful. Exactly what he wanted, I said, forcing a smile.

It had been three years since my brother-in-law’s untimely death at the hands of his murderous assailants. And I desperately wished that my sister, Neline, would once again find happiness. The ring in front of me represented what I had hoped for. David, my brother-in-law to be, had asked me to pick it up for him. I was in Rosebank, Johannesburg, for a morning meeting. So it was easy for me to quickly meet with the designer before travelling back to Secunda, my highveld hometown situated in the Mpumalanga province of South Africa.

At any other time, my sister’s new engagement ring would have pleased me tremendously. But my insides churned and I felt sick to my stomach. In the back of my mind, I replayed the conversation I had had with my wife just moments before the designer arrived.

What does the doctor say? I had asked.

A moment of silence…

It’s not good, my love...

I could hear her voice quiver on the other side of the line. I sensed that she was about to burst into tears, but was trying to suppress it.

What do you mean? I asked, my heart beating in my chest.

What’s wrong? I repeated more anxiously.

They, um... they say... she is mentally disabled. Michelle broke down, now sobbing bitterly.

I was stunned to silence.

Do you hear me?! Your daughter is mentally disabled! she repeated.

What do you mean mentally disabled? I asked, trying to cut through the sobs. I felt ice cold flashes of raw shock ripple down my spine. My mouth suddenly turned dry, my throat choked and my knees were numb. I felt my blood draining off to some invisible void. I knew I had turned as pale as a ghost.

He thinks she... she ... she has microcephaly, she stammered on.

What’s that?

Something about an underdeveloped brain, she said, a little bit calmer now. They are still doing more tests... X-rays and stuff.

Listen to me. Our daughter will be okay. God will heal her. There is still time. We will win this thing, you hear me? We will find all the help we can. We will not give up. I do not accept what the doctor says.

Still to this day, I wonder whether my response was out of shock, denial, my faith in God, Michelle’s pain that shot through the phone, or maybe a combination of them all. But that was my response.

Where are you now? I asked.

Still at the Wilgers Hospital, she replied.

I’ll get the ring and then I’m coming!

I can’t remember the exact detail of the myriad of conversations I had with God on the way to Wilgers Hospital in Pretoria. I only remember that I had them and that they were not altogether pleasant from my side. A few of my one-way spitting contests contained a massive amount of bargaining, bartering and pleading. Every now and then I emptied my anger and aggression directly at God for allowing this to happen. I imagine that my speeding through the traffic at hellish speeds didn’t help my state of mind either. But somehow in the midst of pure anguish, desperation, fear and hope, I arrived at the hospital about an hour later. By then I had convinced myself that everything would be okay. I felt anchored, yet distant from myself.

I shall never forget the lifeless expression on Michelle’s face when I rushed into the paediatrician’s practice. I saw some relief at my finally having arrived; but for the most part, she seemed deeply distraught, sad and tired. Her eyes were bloodshot from all the crying, her face all puffy and swollen. Her shoulders slumped over Tahlia sleeping in her arms. It seemed like she was protecting her from the devastating news. Like any worthy mother, perhaps she was.

I glanced over at Michelle’s mom and her elder sister, Leanette. Concern was deeply edged into their brows. I nodded at them as I walked over to my wife. Thanks for being here, I said.

I kissed and hugged my girls.

Whatever happens, we are going to have a normal and healed child. Do you hear me?

I must have sounded like a broken record by now. But she just stared at me with emptiness in her eyes. So I simply sat down and together we waited for the final verdict from the doctor.

Mrs Smith? came the call. The doctor is ready to see you now, said his assistant.

We walked into his kid-friendly office. For a brief moment, it felt more homely than the harshly lit, cold, nauseatingly sterile environment of the reception area. Still, I felt my heart pounding once more. I didn’t want to be there.

We exchanged introductions and sat down. He was a grey-haired Englishman in his mid-50s; well-spoken and friendly, but to the point.

There’s no easy way to say this, but the tests confirm my initial diagnosis. She has microcephaly, he said. She...

But what does it mean? I interrupted. How do we solve this? What do we do next?

I’m afraid there is no cure. Her brain didn’t develop fully during pregnancy.

Nothing could’ve prepared us for those words. Nothing. For both of us it was like someone had just dropped an anvil on our hearts, squashing them to pulp. Thump, thump-thump, thump--thump--thump---thump---thump!

We were still reeling from the shock and horror of his diagnosis when he continued to explain what microcephaly actually meant. What else was he supposed to do? He was just doing his job, I guess.

"Micro means small. Cephalic means head. In other words, small head. We classify a child as microcephalic when the head circumference is two standard units below the minimum of the normal growth curve for a child. Tahlia’s is three units below."

He pointed at a graph to illustrate what he was trying to explain.

He carried on explaining the radiologist’s report. Michelle and her sister bombarded him with more questions. My mind wandered off as I read and tried to understand the report. Words like gyre, mild, delayed myelination, normal grey and white matter and normal folds jumped at me. He had defined all those medical terms, but two words really grabbed my attention.

Mild and normal... that’s good, isn’t it? I thought. There’s hope after all. There must be. My mind raced. I desperately wanted a way out for the sake of our child, my wife and myself.

I suggest we get confirmation from the paediatric neurologist.

His words brought me back to the present moment.

I’ll write a note. That way you’ll get in as soon as possible. In the meantime you can read up about the condition on www.medicinenet.com.

We later determined that the neurologist had a one year waiting list. Apparently he was one of the best in the country and it would require a miracle to get an opening. After much pleading, Michelle had managed to get an appointment for Thursday 23rd at nine o’clock in the morning, only two days later. It was a miracle.

We walked out of the hospital that afternoon painfully aware that it had only taken a minute. Sixty seconds and one sentence to throw us into our valley of despair, where deathly shadows loomed ominously, pulling us, and enticing us to fear the darkness that began crawling into our hearts.

Yet, we still had hope. We fervently prayed that the second opinion on 23rd September would change our child’s disposition, and ours.

I spent that evening googling and reading up about microcephaly. I learnt that only 1 in 10 000 children are born with microcephaly, which was described as a very rare condition. Why our baby?! I cried in quiet desperation as my tears soaked the keyboard in front of me.

I looked at pictures of children with this condition and continued reading. Some children with small heads have normal intelligence, others are intellectually disabled… ² I noticed the smaller head size. I read about their challenges. I was overwhelmed by fear, anger and sadness. I wept for those children. My heart ached for them. I wept once more for mine and pleaded with God.

Downstairs I put on a brave face, but deep down I was sorely concerned about the final outcome of the diagnosis. I believed that God was able to heal Tahlia if it was true that she was born with microcephaly, but shadows of fear grew tall in the inner landscape of my mind. I was terrified of what was to come.

3

Midnight Visitor

in the still of night

echoes of the doctor’s words

still a painful noise

HAIKU

Peace I leave with you; my peace I give you.

I do not give to you as the world gives.

Do not let your hearts be troubled and do not be afraid.

JOHN 14:27 (NIV)

Wednesday, 22nd September 2010

Michelle hadn’t packed any clothes prior to leaving for Pretoria the day before. The game plan was to consult the paediatrician and return home with get-well-soon prescription medicine. It was a perfect plan for a fixable problem. It turned out to be the most presumptuous idea we’ve ever had.

We had been struggling with Tahlia ever since her birth 10 weeks earlier. She produced a shrill, high pitch cry which lasted for about five to six hours a day, on most days. We thought she had problems with colic, reflux or something similar.

Don’t colic babies cry a lot? we asked each other. We literally doped her with medicine. As new parents, we didn’t know any better.

We eventually visited