Liel at Shutaf in Dec, 2008In honor and memory of Liel Naomi Liben, z”l, 1997-2012.
Every day when the bus pulled up, a foghorn emerged from the window. “Kachuga” it rang, annoying the neighbors and irritating my mother.  Partially fascinated and partially humiliated at such a hello, we rushed out the door – I was in junior high school, and Jessica, my younger sister, was a grade schooler. As we clambered onto the school bus, there he’d be, grinning maniacally. Michael Liben: full of laughter, good music (only Beatles though) and good cheer.

Our parents were friends, and we were friends too. We saw each other on Shabbatot in synagogue and for two, fun-filled years, traveled to school together – he went to Brandeis and I went to Hillel. The schools, which faced each other across Frost Lane in Lawrence, NY, couldn’t cooperate to create a merged high school because of differing religious philosophies but at least we could share busing.

We stayed in touch sporadically in adulthood until I moved to Israel with my family in 2006 and bumped back into Michael on a more regular basis. His daughter, Liel, came to Shutaf early on after the program was founded, and Michael filmed and edited our first video in 2008. Watch it and you’ll see Liel and her friend, Morane (minute 0:55 and 1:58), having fun at Hanukkah Camp 2008.

Michael and I were living parallel lives, raising our children with special needs – he, with Liel and me, with Akiva. Together with his wife Leora and their two other children, Idan and Sapir, they faced not insignificant challenges, coping as they did with Liel’s heart issues and surgeries, as well as a diagnosis of autism and other developmental stuff.

When we imagine ourselves as parents, we usually picture the ordinary and honorable badges of parenthood – sleepless nights, terrible twos, parent-teacher conferences, and the gloomy teen years – combined with those imagined moments of parental pleasure and maybe standing under the chuppa (marriage canopy) one day. Even the smaller things like “not becoming a doctor,” or “won’t be an A-student,” are mercifully forgotten in the face of an infant’s beauty, a child’s innocence and an older kid’s maturation and social success.

As for the really scary stuff, like disability and special needs, emotional stress and mental instability, chronic illness and worse, death, we push it away, hoping it won’t come knocking on our door. Who wouldn’t? We’re not stupid of course, we’re human, and we put those scary thoughts away unless we absolutely need to deal with them.

Michael’s daughter, Liel, died on Monday night at age 15.5, after a major seizure a few days earlier. A tragic and relatively rare occurrence, it happens, and like all things related to epilepsy is little understood and not completely preventable.

I was speaking with someone today about her death and they started to say, “well…” and I interrupted them and said, “don’t say anything about how the family’s life will be easier because of her death.” Maybe on the outside it will seem so – no long trips back and forth to Nahariya each week to pick up Liel and bring her home for Shabbat, less laundry, less finding childcare when you want to go out for dinner or take a vacation, less doctor visits and social services follow-up – I can go on and on and on, but there will be no ease, certainly not initially. The hole dug into one’s innards, into one’s kishkes, by a child with special needs such as Liel’s, the hole dug by her presence, by her needs, by her life, by her smiles and hugs is probably deeper and more complex in its structure than any other hole dug – I would say – even by the two other children in the family.

And that takes nothing away from one’s other children. Nothing. I fiercely love my two big boys – each of my children occupies an important place in my life, in our lives as parents but Akiva has a particular hold on me, for better and for worse. Liel’s absence will be huge, for her parents, and her siblings too, who must not be forgotten, especially in this early period of grief. And that hole is an amazing hole, filled as it is with years of hard work and devotion, love and laughter, fear and resentment, guilt and amazement. It’s an abyss really, that will take time and healing to soften its edges and fill its gaping interior.

We’re not promised a rose garden when we decide to parent. Sometimes it’s messy, really messy but that doesn’t mean we still can’t be grateful for the chance to do it and do it the best we can. Gratitude is such an important emotion, even at a desperately sad time such as this. I’m sad for Michael and Leora, and for Liel’s siblings, Idan and Sapir. I’m sad for me because Liel’s death makes me think about Akiva’s future and that’s another hole that gapes open, wide and frighteningly. Hopefully, we’ll always fill it with love, laughter, good health and pride in all of his achievements.

May her memory always be for a blessing.
מן השמים תנוחמו

By Beth Steinberg, Shutaf Co-Founder