Holding a large-sized vial, the nurse approached my daughter Ashley’s bed.
‘We’ve got to draw more blood,’ she said.
It was the seventh time that day. Ashley was only three and cried every time. I wasn’t much better either. ‘I’ll step outside this time,’ I said, trying to hold it together, as my little girl called out for her mother.
I’d been just 18 when I had Ashley. Her father wasn’t around and I’d been a single mother for much for that time. Things got even more challenging when Ashley was 18 months old and began to act differently.
She stopped making eye contact, started clasping her hands together and rocking back and forth. While other children her age were walking and talking, Ashley had rapidly deteriorated in both those areas.
Of course, I took her to multiple doctors but none of them could work out what was wrong, other than suggesting it was likely some kind of genetic condition. The poor thing was in and out of hospital, being poked and prodded, tested for everything under the sun.
Sometimes she got distressed, but when each hospital procedure was over, she’d smile at me. She could no longer say ‘mama’ though, which broke my heart.
Finally, when she was six, Ashley was diagnosed with Rett Syndrome, a progressive genetic neurological condition.
I was a single mother to Ashley for much of her life. Even though she couldn’t speak, she often smiled and giggled, even in her sleep
‘Physically and mentally, she’ll always be an infant and probably won’t see her 11th birthday,’ the doctor told me. I was devastated, especially when soon after that she stopped growing completely.
A few years later, Ashley began having up to 18 seizures a day. Watching her tiny body jerk so violently was terrifying and upsetting to watch.
Despite all her challenges, Ashley shone. She still smiled and giggled, even sometimes when she was asleep.
Eventually, we found a medication that largely controlled Ashley’s seizures, which was a huge relief. Looking after her was still a full-time job though. Day and night.
It was a tiring and lonely business.
In 2015, I got a Facebook message from Brian Kenneth Urban. We’d been at high school together, but I was surprised to hear from him, seeing as we hadn’t exactly got along well then.
Still, he convinced me it’d been a long time and he’d changed. When he asked me to go for coffee, I agreed.
He’d seen posts about Ashley on my Facebook page and told me he was in awe of how well I took care of her.
‘It’s amazing what you do for her,’ he said.
Sometimes Ashley, who had a genetic condition called Rett Syndrome, would have as many as 18 seizures in a day
It was a tiring and lonely business taking care of Ashley. Then I met Brian
