Author: Donna Kelly
She had enjoyed a privileged upbringing Sydney, made it through rebellious teenage years, was well travelled and well educated.
Her family supported her in whatever she chose, from becoming vegetarian at the age of seven, and then starting her own animal advocacy organisation, Voiceless, in her 20s.
They didn’t even mind when she came home with Israeli Dror, scruffily dressed and decidedly different, and readily accepted him into their loving family.
So when she became pregnant a second time, while living in Dror’s homeland of Israel, even being surprised that she was carrying twins, it was just more good news for the 32-year-old.
But when, at the age of three months, neither had yet smiled or looked at their mother, she took them for a check-up at the local maternity centre.
And that was the start of a rollercoaster ride of doctors and specialists as they tried to diagnose the two babies, Dov and Lev.
It was a heart-wrenching experience with many lacking any form of bedside manner.
As Ondine kept hope alive that her boys just had a little developmental delay she was told bluntly that they may never walk or talk and they would never get much better.
Doctors even said they had “good” news because they believed they had finally found the problem – a rare genetic condition.
Dov and Lev are now six, still living with the family in Israel and Ondine has now stopped praying that they will ever be “normal”, instead accepting that her path has changed.
In her book, The Miracle of Love, she writes that she is finally discovering herself and an increased joy.
“I am putting my puzzle back together and it’s looking promising,” she writes.
Ondine said she started writing her memoirs when the boys were four because she found it so difficult to talk to people about her situation.
“Writing was therapeutic and I had read so many other books that had helped me that I thought it was good to share,” she said.
“Nobody talked about disability and I wanted to put it out there.”
Ondine said she hoped her book, which does not offer advice, just her honest story, could help others realise they were not alone.
Before Dov and Lev were born she had not known any people with disabilities and she had found it incredibly traumatic trying to find her way through the minefield.
“There are so many things that you just don’t know how to react or what to say. You don’t get taught these things and I had no role models.
“It was very isolating.”
Ondine said she was happy to the National Disability Insurance Scheme had finally hit the spotlight in Australia with most people totally unaware of the cost of bringing up children with disabilities.
“It’s unbelievable how tough families have to do it. It’s so expensive, we went completely private, but even special high chairs costs tens of thousands of dollars.
“I don’t know how families do it – sometimes they have to be seen as a charity case so their local church can raise money for them. That’s not right.”
Ondine said while the family had returned to Australia for a few years, to reconnect with her parents and brother, they had ultimately decided that Israel was more supportive, both medically and financially.
“We got really disappointed, especially when we were looking at schools and even started home schooling, but my husband really wanted to go back to Israel, and I thought, screw it, Australia’s not being very helpful.
“The system here is so much better – we have a live-in helper which is fully funded by the government – and that helps so much with even just the physical toll of lifting.
“The government also provides a wheelchair accessible vehicle and covers home renovations.
“Australia is really at the bottom of the list of countries which support people with disabilities.”
Ondine said she could only offer practical advice to anyone in her place such as building a supportive network and not trying to do everything without help.
“It is such an emotional roller coaster – so you just have to get through that – but there are some amazing people out there with a natural affinity for children with disabilities.
“You just need to find them.”
The Miracle of Love is available from bookstores now. RRP $29.95.
Republished from Newcastle Herald, read it here