04.24.2104 Sixty-two Weeks

Sixty-two weeks.

Crossing Mass. Ave. after yoga, I see a young women in a green hoodie, with the orange and white UMiami logo across the front. As I approach her on the crosswalk, I ask, “University of Miami?” “Yes!” she says, smiling. “My son went there!” I say, and we each continue on our way. Because he did go there. Too briefly, but he. Was. There. I can suspend myself in a little bubble of alternate reality, life by omission, implication he went there, as in he graduated from there, let’s pretend!

And then, as I step on the curb, it hits me – a little hello from Eitan, that was. May be pushing it, just coincidence, lots of people go to UMiami (tho not that many from Boston, and he was the only one in his class from CRLS to go there). But, I embrace the encounter as a little wave from my son. Because I yearn for tidbits of communication from him.

A few weeks ago I misplaced a stack of photos I got from my grandmother’s house. While I was searching for them, I came across a manila envelope with Eitan’s name on it, sitting on top of books lining the shelf next to my desk. I opened it to find it stuffed with cards and such from his bar mitzvah. “And such” included a few gift cards, which made me start crying, repeating over and over, “I’m sorry Eitan, so sorry I didn’t give these to you! I’m so sorry!” He had seen them when he first received them, I was just was storing them in this envelope for him, but forgot, and now he never got to use them.

One gift card was for Borders, which made me feel even worse. The store is as gone as he is – I googled and read that Borders gift cards worth $210 million were deemed worthless by a judge last year – good for shot glass coasters or cutting into guitar picks. The guilt I felt for not having given this to him to use snowballed into the guilt I feel for not saving him, for not protecting my son, for not keeping him alive. I know, I know, I couldn’t keep him locked up in my house – and there’s no guarantee he wouldn’t have passed away while at home, as has happened in other cases of SUDEP. But that doesn’t change a core gut feeling that I, as his mother, was in charge of his life, his safety, and I failed him. I didn’t save him.

The responsibility we have toward our children changes as they get older. But when they’re born, their life literally depends on us. Without a parent, a guardian, an infant simply cannot survive. They need us for all sustenance: food, clothing, shelter, protection. So begins our role as parent. Eitan was my second, so I was already used to this role, but I remember feeling overwhelmed by it, holding Gabriel as a newborn. The care is so very basic, yet utterly essential, when they first come to live with you.

And then it changes, in some ways easier, but in more ways way more complex, as they move through the angst of growing up. But because our role as parent protector and life sustainer is so intense at the beginning, I think that feeling never fully leaves us. Or me at any rate. So, no matter what logic may dictate, Eitan needed to be on his own, to go away to college, to live his life as an independent young adult, but the bottom line is that I didn’t save his life; I’m his mom, and he died, and as his mom I should have been able to save him. Twice on my watch he called for help when having seizures, the first and last ones I witnessed, I heard him, and I ran to him. I should have been able to hear him in my heart that night, to know, to know, to KNOW he needed help. No matter what, Goddammit, I should have heard his soul.

And so I think I get a sign from Eitan from wherever he may be now in bags of Doritos caught in bushes, or UMiami sweatshirts in Cambridge, but not transcendent communication while he was alive, Goddammit?

Speaking of God, thinking about God some more. An ongoing theme. I saw Not by Bread Alone a few weeks ago, thought-provoking performance by an Israeli acting troupe of deaf-blind actors. One actor, Bat Sheva, was born deaf, but could see until she was a teenager. She could observe other kids being able to hear, and interact, and she asked her father why she could not, and he said, God made her that way.

Why? The ongoing question that can be asked continuously in response to answers, because every answer can have an open end to need a why, like facing mirrors with endless reflections that blur into distances that are in reality only as deep as the silver backing on a pane of glass.

Why would God create perfect bodies, the wonder of sight and hearing and speaking and touching and smelling and tasting, and then also create bodies missing one or more of those senses?


Had a scare a few weeks ago, when, due to a cold, I lost my sense of taste, and of smell. I had a friend from high school who, after having three children, then a bout with leukemia (she survived), caught a virus and lost the hearing in one ear, permanently. So too, I realized, a sense of taste and smell could be lost as well, they’re just not as disabling as the core senses of sight and sound. I could only taste salt and hot spices, and I wondered, could I actually lose my sense of taste, me, a food writer, whose livelihood depends on my ability to taste? (Oddly, a week later there was an op-ed piece in the paper by someone who experienced exactly this, described as asnomia, and she did regain these senses.)

It was an odd sensation to breath in, to smell a bar of soap I had purchased for the fragrance and have the impression I was sniffing a piece of stone. To bite into a marcona almond tossed with truffle oil, a splurge, and feel only the crunch, no sense of the woody, heady truffle flavor, the sense of taste reduced to a sense of touch. The aged pu-erh tea, bought for its earthy depth tasted merely like warmth.

For three days this continued, and then, gradually, I noticed the bathroom was filled with the fragrance of this soap, the truffled almonds were assertive and delicious, had taste, not just texture again, and the mossy pu-erhness was back in my mug of tea.

So why a body without the ability to hear, and then losing sight as well? Or Eitan’s sense of breathing stolen from his body.

“Breath” like “How are you” has become a loaded word for me. “Catch your breath” “Took my breath away” “Just breath” – all phrases that give me pause. And now I’m doing yoga, with the focus on breathing, and these deep breaths help me, give me peace – but when the thought behind the breaths is discussed, I want to cry, cry for the air denied Eitan.

The daffodils are blooming in my front “yard” (the foot-wide stretch in front of the fence in front of my house). I love these sunny flowers. And then I notice – every single bloom is a double, that is two blossoms from one stem.

2014.04.24 Double Daffoldils

Double Daffodils

The mini daffodils I got at Trader Joe’s yield triple blooms – making me think of my three children. These doubles make me think, one for Larry, one for Eitan. In previous years, these only bloomed as singles, but this year all 13 stems have two blooming daffodils emerging.

I enjoy the surprise of perennials – predictable, but still a surprise. A few years ago, a snowdrop appeared in my back yard – never planted, but just appeared, and now, each year when it returns, it makes me smile. I love these harbingers of spring. And I think of how the bulbs lie dormant buried in the ground, and come to life again every year. Buried, but come to life again, buried, but not dead, there, even when there’s no sign of them, just dirt.

Dandelions are perennials too, and I love them too, even tho we’re not supposed to, a weed. But God, I love those assertive shaggy flower heads, bold and yellow puffs of sunshine dancing across the yard and I leave them be. But all winter, no sign of them, then, first the spiky leaves appear, and then one day, the yard is polka-dotted with them.

Yeah, you see where this symbolism is going. I want my son to sprout from the ground, back, renewed, here again. We planted his body there in the dead of winter on a frigid February day with an icy clear blue sky. And he’s not gonna grow as he nourishes that earth, as the grasses sprout from the ground when the earth thaws, forming an oddly human silhouette of darker green, like the casualty outline on asphalt where a murder has occurred. But no renewal of my son, come forth whole and strong and alive, shining big brown eyes, buzz cut grown out a bit after a winter hibernating.

I let my mind flirt with writing the alternate reality, where would he be now, and now, and now. Because I don’t want to let Eitan freeze at 18 years, 10 months, and 11 days. Others have lost children younger, milestones never reached; Eitan got a graduation, he got a prom, he got a taste of college. Grateful for every minute he got to be here, grateful I’m the one who got to be his mom.

April 2007
Dry ice is an easy cheap thrill, and my kids had a lot of fun with it. This is also one of the few photos with Eitan wearing his medic alert bracelet for his seizure disorder. He later outgrew it and didn’t replace it. Around this time, I was walking with him and he said, “If I get another disorder, I could get a medic alert necklace. That would be so bling, to have a bracelet and a necklace.”

I responded, “You don’t have to get another disorder to get a necklace. We can get you a necklace for this one.” Then I asked, “What’s bling?” And oh! the eye rolling! “You don’t know what bling is? Bling is BLING!” was his informative definition. I told him I had to maintain my reputation of being out of it.

Playing with dry ice in the sink

Playing with dry ice in the sink

Mug 'o "steam"

Mug ‘o “steam”

Filling the Cap

Filling the Cap

2014.04.24 Dry Ice Eitan with bling

Eitan’s bling

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