She thought her babies were perfect. But nothing could have prepared her for this news.

By MIA FREEDMAN

When your life swerves off its expected course without warning, you can be left highly disoriented. Reeling.

All perspective and sense of certainty can vanish.

But when you’re a parent, there’s no time to stop and recalibrate. No time to stop the world so you can pat yourself down after the explosion and check that everything’s intact.

The daily demands of a young family wait for nobody.

So when my cousin Ondine Sherman and her husband Dror Ben Ami were faced with the news that their beautiful twin sons, Dov and Lev, had a rare genetic condition that would drastically impair their development, nothing stopped. The boys were less than 6 months old. Their big sister Jasmine was only 2.

Ondine and Dror still had the minute-by-minute chaos of life with small children, made even more complicated by the fact they were then living in a foreign country  – Israel – where Ondine didn’t speak the language.

And yet in other ways, everything stopped. Their life as they knew it was snuffed out in a series of excruciating medical appointments. And as they were slowly drip-fed information about their sons’ diagnosis and prognosis, they had to navigate a strange kind of on-going tragedy, dealing with everyone else’s reactions on top of their own.
We’re crap at dealing with such things in our culture. We have no rituals for grief or loss or reflection. We prefer to mark happy occasions. We are comfortable celebrating births and engagements, job promotions, anniversaries and birthdays.

The language of good news is embedded into our small talk and peppered through our conversations. But when bad things happen, we freeze. We stumble. We slink away. We stay silent when we should say something, anything. We lean back when we should lean forward; when we should reach out and allow unspoken fears and grief and uncertainty to bubble to the surface.

We should ask and we should listen, even if it’s sometimes uncomfortable. More than meals, more than flowers, that is our gift to give.

I’ve known Ondine all my life. As cousins in a close Jewish extended family, we grew up together along with our brothers Michael and Emile and when our fathers partnered up in business in the early 80s, our families became further entwined.

But despite spending so much time together I never knew Ondine. Never really knew her. And it turns out I wasn’t the only one.

You see, Ondine’s family is a well known one in Sydney. They are high profile, successful, wealthy and massively accomplished.

Her father Brian is a businessman turned philanthropist, her mother Gene is an icon in the art world, formerly running the Sherman Galleries and now her own arts foundation and her brother Emile won the Best Picture Oscar a couple of years ago for a little movie he made called The King’s Speech.

Ondine herself is the founder and visionary behind animal rights organisation Voiceless, a cause she has been passionate about since becoming a vegetarian aged six.

They don’t do things in small ways, the Shermans. And it has taken no small amount of courage and strength to face the unspeakable challenge of raising Dov and Lev whose condition is so rare that for years they didn’t even have a diagnosis.

While she and Dror openly admit they are incredibly fortunate to have the family and financial support to cover many of the therapies and pieces of equipment the boys need, no amount of money can make Dov and Lev talk or walk or sit unaided. Their muscles don’t work and they are unable even to feed themselves.

For a long time, Ondine convinced herself they would be fine. With the ferocious determination and unflinching hope of a mother, she left the medical research and hunt for a diagnosis and treatment to her biologist husband Dror and her father Brian.

Together, they spent hours every day for years trying to uncover information. Meanwhile, she mothered her boys and fought for everyone around them to see them as people, a basic dignity and acknowledgement not always offered to the profoundly disabled.

After reading her book, I feel like I know Dov and Lev  too. Instead of seeing what they can’t do, Ondine has painted a detailed, poignant and revealing picture of what they can. And even more importantly, who they are.

In writing about what it’s like to have your world implode around you and to have to pick up the pieces and reassemble them into a new kind of normal, Ondine has given a gift to anyone who has had their life change unexpectedly. She’s also given a gift to everyone who has watched from the sidelines, wondering how on earth to help.

I am in awe.

You can order Ondine’s book from the ABC Shop, here,