Our wishlist before my babies go blind
Cuddling up on the lounge with my son Jayden, two, I read him a storybook. ‘Dog!’ he said.
That’s strange, I thought. He seemed to be looking at the word, not the picture.
‘Cat!’ he said, seeing the big letters on the next page.
Surely he wasn’t reading? He was a smart cookie, but he was only a toddler!
So, I got a chalkboard and wrote dog, cat, pig on it.
His dad Warren, 47, and I were stunned when Jayden read the words aloud.
‘You’re a fast learner!’ I said. As he grew, Jayden continued to love books. But last year, at almost four, he just stopped reading.
Perhaps he’s more into his toys now, I thought, watching him and his little sister Tahlia, two, play.
Then, one day, he handed me a picture of a superhero with its name written underneath.
‘What does it say? I can’t read it,’ he said.
I told him, but a few seconds later, he was back with another he couldn’t read.
We were puzzled, but Warren had an idea. Using the camera on his phone, he zoomed in.
‘Can you read it now?’ he asked Jayden, showing him the magnified image.
‘Yes!’ he smiled.
It’s his eyesight, I realised. Taking him to an optometrist, we discovered he was very long-sighted and needed glasses.
Trying on his new specs, his face lit up.
‘I can see!’ he beamed. That’s sorted it, I thought, relieved.
But then Warren noticed Jayden seemed to be struggling at night.
Even with his lamp on, and wearing his glasses, he was wary of walking into things.
When he had a routine check-up, we mentioned it.
‘He might be unsure of his surroundings,’ the optometrist said.
But we weren’t convinced and by now we were worried about Tahlia’s sight, so we arranged for her eyes to be tested too.
Unfortunately, around the same time I was given some bad news about my health.
Diagnosed with cervical cancer, I needed chemo and radiotherapy. It was a huge blow, but I had to be strong for my kids.
Then, Tahlia’s tests showed the retinas in her eyes were damaged and she needed a more invasive investigation under general anaesthetic.
Two weeks later, my phone rang as I drove home from having radiotherapy.
When both Tammy’s children were given a devastating diagnosis, she came up with a plan Tammy Watson, 35, Gold Coast, Qld
‘We think Tahlia has retinitis pigmentosa,’ the specialist said.
Knowing we were getting her tested because of Jayden’s eye problems, she added, ‘It’s genetic and we think Jayden has it, too.’
Then I listened as she dropped the real bombshell – it meant the children would lose their sight.
Unable to take it all in, I had to stop her. Once home, I put her on loudspeaker so Warren could listen as well.
We were told that the condition, RP, presents itself differently in each case.
That’s why Jayden’s hadn’t been picked up earlier.
It was hard to say how long it’d take, but eventually they would both be blind.
There’s no treatment and no cure.
And devastatingly, they were deteriorating rapidly.
More tests showed Tahlia has a very narrow field of vision, just two per cent of what it should be. Thinking of the challenges our kids would face broke our hearts. Jayden had adored reading his books and Tahlia might never learn how to read.
And what would it mean to go through life without being able to see?
Although we shed tears, we didn’t want the kids to be upset. Protecting them from the truth, we made sure they kept on having fun.
My illness and the children’s sight loss were a huge wake-up call.
‘We need to make the most of everything,’ I said to Warren.
So we decided to create a ‘sight bucket list’ and make memories with the kids while they can still see.
‘If you could see or do anything in the world, Jayden, what would you do?’ I asked him.
He’s mad about oceans, animals and buildings.
‘I want to see a panda and pat a dolphin,’ he said. Okay... I thought.
‘Anything else?’
‘Go to Sydney!’ he said. ‘I’d like to see the Opera House and Sydney Harbour Bridge.’
‘That might be easier,’ I smiled to Warren.
We soon added going to the beach, the park, and Disneyland. With my treatment, it was hard to plan any big trips.
Plus, going overseas would be expensive.
Feeling a bit shy, we set up a GoFundMe page. We were so touched by all the people who wanted to help us.
So far, we’ve gone to the park and hit the beach a lot.
Watching the kids splash in the surf is magical.
Despite their limited eyesight, they’re fearless pocket rockets!
Tearing around the house, if they bump into walls they bounce straight back up.
They both enjoy music and dancing, and Tahlia hugs her big brother if he tumbles.
In a low-lit room, Jayden can’t see anything and Tahlia is showing signs of this too.
After surgery in April, I’m now free of cancerous cells.
So we’re focusing on the future and ticking more things off the kids’ wishlist.
We’ll make every moment count.
To help, visit gofundme.com/sight-bucket-list
There’s no treatment and no cure