2016-04-13 / Columns

A Passover memory when everything changed for our family

SALLY’S WORLD
SALLY FRIEDMAN

I think of it every spring, as the days grow longer, and life just feels easier. Blizzards are yesterday. The beach is tomorrow.

And Passover is coming.

And I drift back to that April night in 2008 when everything changed. It was the night of our first Seder.

Our grandson Danny was in a North Jersey hospital, and his parents were with him, learning the ropes of Type 1 Diabetes.

That diagnosis was as alien as a never-heard foreign language. One day, this rambunctious six-year-old had been fine. The next, he was terribly ill with the unmistakable hallmarks of Type 1.

There we all sat, his two older brothers stunned and scared at the Passover table. My husband and I could not even find words for the feelings.

“Everything feels weird,” Jonah, the family philosopher, whispered to me. And I didn’t know what to say. How could I deny it? But how could I affirm and explain it to a frightened eight-year-old?

I somehow flashed back that night to an early fall morning several lifetimes ago when we’d finally allowed Nancy, Danny’s mother, to wait outside with the big kids for the school bus. It was just yards from our home.

She was so proud of her new independence, and I was proud for her…until I heard a scream coming from that bus stop.

The neighborhood bully had spotted his prey. He had knocked Nancy to the ground and the scream was hers.

“Let her be fine! Let her be fine!” I prayed as I rushed outside to claim a tiny girl with blood pouring from her chin. That day, that second, I felt again a mother’s eternal vulnerability.

And at that Seder table, even in her absence, I was feeling Nancy’s vulnerability again— but this time her child.

Jonah’s lament that everything felt weird would continue for weeks and then months. When a child of your child is dealing with a disease that has no cure yet—and demands so much of him—the sadness is pervasive.

Danny is 13 now. He’s devilish and delightful at once. He’s funnier than almost anyone I know.

And yes, he has Type 1 diabetes and wears a pump that helps him deal with this nasty intruder in his life.

Thirteen is not an easy age. I watch Danny maneuver that stage now, but he maneuvers it with the added burden of a tough disease. And he is never ever without the “kit” that contains emergency aid should he need it.

It is burdensome and annoying, but he well knows that it must be with him.

When he goes to the endless round of Bar and Bat Mitzvahs, his kit goes with him. And attached to him is his pump.

I’ve been warned by his parents not to make a fuss about his compliance, and not to commend him for doing what he must.

But when it’s your grandchild who is the patient, sometimes you just want to take him in your arms and tell him how much he is loved because he’s brave and tough and handling something that takes a lot of both of those things.

I cringe when people who don’t know suggest that maybe he shouldn’t have had so much sugar in his earliest years.

I try to calmly explain that Type 1 isn’t about too many sweets. It’s an autoimmune disease that’s still not fully understood. That there’s no blame involved.

Every time Danny is with us, and ventures beyond the kitchen door, there’s still an almost reflexive worry. Does he have his kit? Is he “low,” a condition of blood sugar that can wreak havoc on Type 1 diabetics.

So yes, as the season of Passover approaches, I think of that singular Seder when everything changed.

I think of how far we’ve come.

We are family deeply committed to helping in the search for a cure for this disease. Our calendars are full of fundraising events that we wouldn’t miss.

Recently, we watched our grandson stand on the bimah at his Bar Mitzvah and tell the world of his dream of a cure, and of his plan to start a support group for teens with Type 1. And he will.

Vic and I have resisted the temptation to coddle Danny. Not easy.

We’ve treated him the way we treat our six other grandkids, and even scold him when he’s out of line, something we’ve had to learn to do. The impulse is to forgive Danny anything and everything.

And every Passover, when we recite the prayers about freedom, we dream of the day when another kind of bondage will end, and another kind of liberation will come.

For Danny, and millions of others, soon, soon, we hope. . pinegander@aol.com

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