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.A couple of months ago, I sat down to read her book; the memoir she has written about her boys and her life and how one irrevocably impacted the other and I didn’t get up again for hours. I couldn’t. I know her better now and so will you if you read it because she rips off the veneer of her perfect looking life and shines a light into the abyss.