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.