Sparkle in the darkness

We never stopped fighting for you, right until the very end...

Published by: Amy Thompson
Published on: 12th May 2011

Dear Amber,
You were such a gorgeous baby, with dark hair and big brown eyes that sparkled whenever you saw me or your daddy.
‘She’ll be a stunner when she’s older,’ smiled Nick, 38.
Time with you whizzed by. When you said ‘Dadda’ for the first time, I thought my heart would burst with pride. It seemed like all too soon you’d be chattering away to me.
But that wasn’t to be.
When you were nine months old, doctors found you had Tay-Sachs disease – a genetic condition that meant your brain was shutting down.
‘Amber’s nerve cells are being clogged by fatty deposits,’ the doctor told us. ‘She’ll lose her sight, hearing and, eventually, the use of her limbs…’
Then he dropped the biggest bombshell. ‘Most sufferers don’t live past the age of three,’ he added.
The disease meant you’d never walk or talk. You’d only just started saying ‘Dadda’… but soon enough that stopped, too. But that didn’t mean you couldn’t communicate.
Me and your daddy learned how to read every look you gave, what every sound you made meant. We could tell from the smile in your eyes when you were happy.
That’s how we knew your favourite toy was your stuffed elephant Heffalump, and your favourite DVD was Snow Buddies.
What’s more, we found a special drug in America that slowed the condition. You reached your sixth birthday – three years more than the doctor’s prediction!
Watching your face as we blew out the candles on your birthday cake, I was so proud. Anyone who didn’t know you would have seen nothing but a blank expression. But, to me, you had the brightest smile in the world.
Not everyone thought so.
‘Amber’s done well,’ a doctor at Cardiff Hospital gently told us one day. ‘But the fact is, she’s dying. She has no quality of life any more. We think it’s best to withdraw her treatment.’
I saw red. Who did he think he was? ‘She’s had a few trips to hospital to be put on a ventilator to help her,’ I fumed. ‘But to say she doesn’t have any quality of life…? It’s rubbish!’
Daddy shook his head firmly.
‘Amber will decide when she’s had enough,’ he added.
But that didn’t stop the hospital applying to the courts for an order to stop you receiving treatment.
They didn’t even think you should be given antibiotics if you caught an infection.
Now, more than ever, Daddy
and I knew that every second with you was precious, but it was tainted with worry.
Did the hospital have a point? You certainly weren’t in pain, that much everyone agreed. But, although I’d do anything to keep you alive, for a second I wondered if I was being selfish.
Then I remembered the look in your eyes whenever you were put into your pink wheelchair and pushed into the sensory garden we’d made for you. It was filled with colours, sounds, textures,
and you loved it.
No, I couldn’t just let you die. You still had so much to live for.
Okay, you couldn’t ride a bike or dance. But you still listened as I read you stories, still gazed at the glow-in-the-dark stars we’d decorated your bedroom with. You still felt the sun on your cheeks when we took you to Spain on holiday. We treated you like any other six-year-old, Amber. Remember the fun we had choosing clothes for you every morning?
‘How about this one?’ I’d smile, holding up a pink T-shirt. Your eyes wouldn’t even flicker. Then I’d hold up your yellow dress.
‘This?’ I’d ask. And there it was – the smile in your eyes.
‘Okay. Yellow dress it is.’
How could they say you had no quality of life? How could some stranger decide whether you lived or died, without even spending an hour in your company?
We did everything we could to fight for you Amber – contacted newspapers, got a petition going.
Then, just a month before your case was due to be heard in court, I checked on you sleeping in bed in front of the TV. Your eyes were closed, but your face had turned a sickly colour.
‘Nick!’ I shouted. ‘Call an ambulance.’
As we rushed you to hospital, I prayed you’d pull through. But, when we arrived, the doctor told us you were gravely ill.
‘But we can keep trying…’ he offered.
Me and your dad looked at each other and, in that second, we knew it was time to let you go. We’d always said you’d be the one to decide when it was time.
‘No,’ I said, tearfully. ‘I think we’ll let her sleep.’
At your funeral a week later, I tucked your cuddly Heffalump and Snow Buddies DVD into your coffin. Saying goodbye to you was the hardest thing I’ve ever done.
In the months that followed, me and your daddy struggled to cope. We’d spent every second with you for six years, making sure you were comfortable and had everything you needed.
Sitting in your bedroom, looking at the stars and butterflies on the walls and ceiling, it felt empty.
‘They call you an orphan when you lose your parents,’ I said to daddy one night. ‘You’re a widow when you lose a spouse… But what are you when you lose a child?’
He hugged me tightly. There was only one word to describe us – we were heartbroken.
Almost a year passed before we thought about trying for another baby. We’d always wanted more children but, when you’d come along, we’d devoted every minute to you. Doctors warned us that any baby we conceived would also have a one in four chance of having Tay-Sachs disease.
Unlike when I’d fallen pregnant with you, we were now aware of the risks. I could have a test at 12 weeks to see if your little brother or sister had the disease.
If they did, I’d been given the option of a termination.
It was an agonising decision to make. I couldn’t help wondering if we’d known about your condition before you were born, would we have kept you? Knowing you’d have such a limited life, probably not. But knowing the person you were, and how much joy you brought to our lives, the answer was obvious – we wouldn’t have given you up for the world.
So, when I fell pregnant in November 2009, we were thrilled.
Whatever the outcome, I knew I’d keep the baby.
At my 12-week scan, I waited for the result of the Tay-Sachs test…
‘Lesley,’ my consultant started. ‘Your baby doesn’t have the condition. She’s not even a carrier.’
‘She?’ I gasped in disbelief.
‘You’re having a girl,’ she smiled.
Tears coursed down my cheeks. ‘Amber’s watching over us,’ I said to your daddy. ‘Our little angel had something to do with this.’
Thank you Amber. Your little sister Izzy was born last August and is perfect. She even has her own Heffalump.
We never saw you grow up Amber, but you taught us how precious time is.
You’ll always be my baby with the brightest smile in her eyes.
Love Mummy xx
Lesley Gronow, 46, Cwmbran, Gwent