Sometimes it’s not forever. Burying a child.

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

The Best Laid Plans

Everything was set: the plane tickets, the booked chalet not far from the slopes, the car, the packed suitcases, and most importantly, our eldest, Natan, who was to look after Akiva while Ira and I went for a special celebratory week in the French Alps in honor of my birthday and our 25th anniversary.

Murphy’s Law prevailed or so it seemed at 4am when Akiva woke up at 4am with a major stomach upset. After we settled him back into bed – ours – and cleaned the bathroom and started the laundry, we laid in bed on either side of him, willing him to better health by morning.

Between 7:30-8:00am we had a ‘conference at the mound’ with both older boys – Gabe was home from mechina for the weekend. Ira had already checked the flights and our accommodations. It seemed like we could delay the whole trip for a day – leave Monday and return home the following Monday. I was tired, totally beat and just not sure what to do. Akiva, thankfully, is a healthy boy regardless of his special needs and usually bounces back nicely but there was no way to know how this thing would play out and how many days at home he might need before returning to school. Being sick was not what we had bargained for, of course. When we made these plans, we didn’t want to burden Natan with a sick, younger brother, especially when we’re talking about stomach stuff. Akiva is not fully toilet trained – it’s no small issue, especially when he’s sick.

After much analysis – including conversations with my two sisters –  and thankfully, Akiva woke up at one point so we were able to make a general assessment of him – not too bad, that was the good news – we decided to go ahead with our plans. The big boys felt relaxed overall and Gabe would spend an extra day at home keeping Natan and Akiva company before returning to his mechina program the next day. Natan, although not sure how it would all play out, seemed to feel that it would all work out.

We left at 9:30am, not sure we had made the right decision or not but knowing that Akiva was in capable hands. Natan send regular SMS and email reports and Akiva ended up spending Sunday and Monday home from school – Natan was pleased that Akiva was seemingly bored and ready for action by Monday night, a sure sign of good health.

The skiing? It was wonderful and we missed having all of our boys with us. We noted people with physical disabilities skiing on the mountain and wondered if Akiva might be able to join us on a future trip. We always skied as a family in the US – Vermont resorts were particularly welcoming to us and to Akiva, who still talks about Nisei and Bronwyn, two lovely counselors on two different trips to Killington. We came home to a tired Natan, who’d also hosted two aunts, an uncle, and his grandmother on Shabbat – don’t worry, he didn’t have to do too much cooking.

What’s the moral of the story? We have good kids. Sure, we know that. Akiva does bounce back nicely from illness. We know that too and are grateful. Maybe that sometimes you can forge on ahead even when it all seems impossible and still manage those moments that are so desperately needed in life – like vacation.