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| Family Tempo |

Sands of Time   

Why couldn't Mom see that every moment was precious?

I can feel my skin burning from the strong sun, and I know my nose will be a mess of peeling skin tonight. My eyes are still stinging from the salty water, and gritty sand is everywhere, in my hair, under my nails, between my teeth.

I’m surrounded by the familiar scent of lotion, ocean, freedom. Right now, there’s nowhere else I’d rather be.

I look up from the sand castle I’m building, shield my eyes with a hand to take it all in: there’s Mommy and Daddy, lying on their beach chairs, reading; Steve is flirting with the edge of the water, going up to his knees, then jumping back; and Michael… I scan the area. Where’d Mike go off to?

Before I have the chance to turn around, I see his fleeting shadow from the corner of my eye, and suddenly, Michael is crashing into my castle, laughing wildly. He’s a boy-man, his 15 years pushing past the constraints of his physical body, a sulky figure who will suddenly burst with energy.

And now he’s ruined my creation, the structures and turrets and moat, even the arrow-slits that Steve had helped me with. In shock, I just stare, stare, at this brother of mine, ten years my senior.

My silence shocks him into awareness, and he seems momentarily confused by my response.

“What?” he half-laughs, shrugs. “It was going to get ruined tonight by the tide, anyway.” Is he embarrassed? Regret is quickly replaced by a nonchalant sneer; he isn’t comfortable with the language of emotions.

I look at the ruined edifice and shake my head as the tears gather.

It’s not the same at all.

I clutch the phone tightly, trying to find a lifeline in this tumultuous conversation.

“Lisa, give it up. You’re not going to be able to change Mom’s mind.” Steve is kind, but emphatic.

My heart sinks. I’d harbored no great expectations of Mike, but I’d really hoped Steve would side with me. Despite our external differences, we’d always shared a unique bond, and I knew him as a sensitive, authentic individual. Surely there was some spirituality there?

I nod morosely, belatedly realizing that he can’t see me over the phone.

“I’m sorry, sweetie.” Steve could do that, be firm and yet so gentle with me. Even in his insistence, it’s the softness in his voice that triggers a lump in my throat.

“Yeah,” I manage to force out. He must hear the crack in my voice, the sounds of my blocked nose. He gives a heavy sigh.

“Lis, I see how much this is getting to you. Maybe it’s time to give it up?”

In my mind’s eye, I see Steve rubbing the back of his neck, day-old stubble darkening his jaw. He’s probably sitting near the Mac in that same studio apartment he’s been living in since forever, clad in ratty sweatpants from his heyday in college. Back when his dreams were big enough to encompass the world. Back when I believed he was the world.

“Mom’s set on this, and you know me,  I see both sides, but,” he clears his throat and pauses uncomfortably, “what sort of life would she have anyway? Would she really want us to be taking care of her when she’s… like that?”

I know what he’s hinting at, what we’ve never openly discussed. It seems that both Michael and Steve are somewhat relieved at Mom’s decision. Caring for Mom as she grows weaker and weaker would becrushing.

I stop myself; I’m not being nice to my brothers. They both love Mom fiercely. Can I really pass judgment on them for not wanting to watch her fade away?

But suddenly, the million lumps I’d swallowed that day hit me with the force of an ocean, and the words I’d been scared to verbalize creep their way up my vocal chords: “Steve, I don’t want Mom to kill herself.”

Steve finally agrees to speak with Michael again. I feel badly making him the middleman, but the differences between me and Mike run too deep, the chasm too wide for any bridge to connect us.

When Steve calls me back later that night, he sounds apologetic.

“I tried, Lis, really. I know death and medicine is complicated in your religion.” Our religion! Not mine, ours! I nearly shout, but rein myself in, knowing if I do, I’ll completely lose him in this conversation.

“But Michael’s pretty adamant, and you and I both know if anyone could convince Mom, it would’ve been Mike.” He sighs. “I know how important this is to you….”

The discussion is over, the proverbial nail in the coffin sealed. Ugh, what an awful metaphor.

I force myself to sound coherent, and let out a soft murmur of gratitude. “Thanks, Steve. I know you tried.”

Then I hang up and dread congeals in my gut.

Later that night, I vent to my husband, words spilling out in a torrent of frustration. “Maybe Steve is right; I should just give it up, forget the whole thing. No one is going to side with me.”

Shlomo lifts a shoulder in question and solidarity as he sits down for dinner.

“And they have a point. She’s in pain, she’s suffering… and we’re all suffering with her. Am I wrong? I mean, maybe I’m making too big a deal about this?”

Shlomo scratches at his beard, and raises an eyebrow in my direction. “Leah, c’mon, you know halachah is clear on this point.”

“I don’t know, because we didn’t really ask, did we, I mean, she’s old, she’s going to die anyway, that tumor isn’t going anywhere…” I know it’s the pain speaking, but still, there’s insecurity too. Maybe my background is catching up with me, maybe I don’t fully understand the halachic implications?

“Leah.” Just my name alone focuses me, shedding light on my denial. My husband and Steve are eerily similar in their ability to strike the perfect chord of firmness and sensitivity.

I sit down opposite him at the table, shove my head into my arms. “How can we just let Mom sign the papers for physician-assisted suicide?”

We’d planned this visit months ago, and Mom wasn’t going to let a meddlesome brain tumor keep her from coming. So despite her waning strength and the nasty side effects, she sweeps into our house, all energy and excitement, weighed down with suitcases for the kids.

Although we’ve done Zoom meetings, it’s been a few months since she visited in person. She looks at me and breaks out into a wide smile.

“Lisa! The baby bump is even bigger in person!” She places two gentle hands on my stomach, and beams. “Just finishing your seventh month, right?”

I nod. “It feels endless,” I moan dramatically.

“Well, you certainly have the glow. You look beautiful, honey.” I’m swollen and my face has broken out like a teenager’s, but from her, I believe it.

The moment is broken as the kids jump on her like anxious puppies, pulling at her hands, all “show me, show me!” and “Grandma, Grandma!” She takes it all in, a giant smile on her face. Only I notice her surreptitiously pull out a chair to sit on, a few well-concealed grimaces, too many sighs that travel alone can’t account for.

Once I read Mom like a book. Growing up, she used to say I was born with an antenna to her emotions. She was never able to hide anything from me, her youngest. Then I became frum, and everything changed. My antenna went haywire; it seemed there was only static between us, years and years of clashing. But now even I can see she’s not doing well.

“Okay, guys, everyone go outside to jump on the trampoline! Grandma’s had a rough trip, give her a few minutes to rest!” They scramble over each other in their rush to reach the backyard first, and Mom gives me a grateful smile.

“You still have one spoon coffee, one Splenda?” I call over my shoulder as I walk to the kitchen.

“Mm, sounds delicious.” Normally, she’d keep me company as I prepare our coffees. I note with unease that she remains firmly rooted in the living room, and by the time I return, her eyes are gently closed. Her face is lined with new wrinkles, and I study her carefully, this vibrant, beautiful woman who is fading so fast I can barely catch her.

Her eyes suddenly flutter open.

“Oh, my, how long was I sleeping?”

I blink, paste a smile on. “Barely a moment.”

“I’m sorry about that Lisa.” She leans to grasp the mug between her two hands, and I notice the blue veins snaking their way across papery skin. “It seems to be happening more and more…”

I kick myself mentally for all those wasted years of distance. If only I’d dated Shlomo longer… if only I had introduced them earlier… If only I hadn’t had a mechitzah at the wedding… If only I hadn’t been expecting right away…

I play this macabre game with myself sometimes, even as I know with certainty that every decision I made was discussed, thought through, analyzed, and confirmed by daas Torah. Still, it stings to know she believes the fissure between us is all my fault.

“They keep getting bigger and bigger. It’s amazing how long a few months are in a child’s life.” She smiles at me, takes a sip.

“Yes. Each month for a child — and an adult — is precious.” I wonder if she’ll hear the double entendre in my words. She continues to sip her coffee deliberately, and I grit my teeth. Her shades are drawn, and it’s hard to know how to proceed.

“Rikki’s a social butterfly, the neighbors love her.” I’m babbling to fill up the space. The elephant in the room is taking up so much space, it feels difficult to get around it.

I take the wimp’s path, or maybe it’s the only realistic one right now. I call the kids back in, and we spend the afternoon looking through new toys, sharing anecdotes, and cheering on two-year-old Yaakov as he builds and then knocks down Magna-Tile towers .

Living with her is making the reality all the more brutal. She’s sick. Maybe Mike and Steve are right — she’s suffered enough. Hospice is expensive. She doesn’t want to be a taker.

But then I hear my husband’s voice, loud and clear: Torah guides us, tells us how to think. An individual’s opinion is subjective, and morals cannot be left up to man.

How to explain this to Mommy? I’d been hoping that she could meet with Rav Leibenstein during this visit, he’d know what to say to her. But the chances of her meeting with him are slimmer than the chances of me meeting with her rabbi. I’m scared to raise the topic again, scared to pull out the Torah card.

Honestly though, it’s not only that I’m concerned for her neshamah. I just don’t want to lose her a moment earlier than we have to. Three adorable grandchildren have done a lot to smooth our relationship, but we’ve lost so much time as is. How can I convey that to her?

It’s been a hectic day, lots of running after the kids, and I keep feeling the urge to sit down. Officially, I’m on light bed rest because my previous babies were born at 37 weeks, but seriously, with three little kids, who has time for that? So I ignore the pangs and just keep sipping from my ever-present Contigo.

I mention the mild cramps as an aside to my husband when he comes home from work — rookie mistake.

“Lay, you need to take it easy. And what with Mom being here too… it’s a lot for you.”

He looks at me, knowingly. It has been stressful, feeling like the burden of talking mom out of this decision is all on my shoulders.

That night, he and Mom handle bedtime while I relax in bed with a book and a tall glass of iced tea.

When the children are asleep, he invites me back into the living room. “Coast is clear, come on out, Leah.” He’s an angel, my husband. And concerned about my health, and our unborn baby’s.

Mom is sprawled on the couch, laughing with Shlomo. “They’re a handful! Shira made me tell her again what you were like when you were six. Too mature for your own good, that’s what you were.” She smiles at me.

“Alright, I’m going to head out for Maariv,” Shlomo says. “Can I leave you two women alone? You think you can handle the sleeping troops?” He looks first at my mother, and only then at me.

“Who, us? We make a great team.” Mommy leans over, holds out her hand for a high-five. We have been, these past few days. I’ve kept things light and focused on the children. Even with her waning strength, she revels in the bedtime routine, and the kids can’t get enough of her repertoire of voices.

So long as we don’t discuss her sickness, or death, I know we’re doing okay. But she’s only going to be staying with us one more night, and I know I have to strengthen my resolve and say something before she goes back… and signs those papers.

I begin tentatively, scrutinizing her face to see how she’s taking it in.

“Mom, I know there’s something we haven’t been discussing…”

Her features harden. “Yes, Lisa, because there’s nothing to discuss.”

I take a deep breath, envision Shlomo next to me, and press forward.

“Mommy, please, I’m not trying to convince you one way or the other, can you just hear me out?”

She gives a frustrated sigh. “You’re not trying to convince me? Lisa, every single conversation has been, ‘Mom, the Torah doesn’t let. Mom, this isn’t good for your soul. Mom, halakah disapproves.’”

I look down. “You’re right… but can we just—”

She cuts me off before I can continue. “I told you, Lisa, I discussed it. I’ve put a lot of thought into this.  I’m not changing my mind. Honestly, I’m sick and tired of your preaching from this holier-than-thou place. Things are finally good between us. I’m actually enjoying things without your constant religious lecturing. Please, will you just stop?”

My voice catches as my throat constricts, and I can’t stop the tears that have welled in my eyes even if I wanted to.

Mommy takes a shaky breath, realizes how deep her words have struck me. She puts her arm out, grasps mine in her own.

“I’m sorry. That was harsh.” She leans over, rubs a thumb across my cheek, pushing away the tears, her own flow unchecked. “Lisa, try to put yourself in my shoes. Imagine knowing you’re going to be losing your faculties and organs one by one. That’s where I’m at. This brain tumor is terminal, and I don’t have much time left. There’s nothing more the doctors can do, we all know that. I can’t continue like this, not for myself, and not for you children.”

She looks down at her lap, no longer meeting my eye. “If I don’t sign off on the PAS within the next few weeks, it may be too late. I don’t know how much longer I’ll be considered capable of making the decision. The psychiatrist has already approved that I’m  of sound mind. I only have a small window of time.”

I ignore the tears and the shudder in my voice, and soldier on. “Mom, you’re right, I don’t want to see you suffer…”

“Exactly,” she continues, misreading my word. “Steve and Mike agree — there’s something to dying with dignity. I’ve spoken at length to the organization that advocates the right to die, and I’m all for you speaking to them directly if you think that will help you come to terms with my decision.”

She’s growing angry again, two bright red spots on her cheeks coloring her otherwise wan face.

I want to cry and shout at the unfairness, throw myself at her, beg her to reconsider. I need more time, life is precious, every moment is precious.

Instead, I take a gasping, shaky breath, clutch my stomach.

“Mom…”

She turns her face back to me, and despite the raw anger, she must see through it to the panic in my eyes. A mother is always a mother.

Again, my midsection catches so tight, I can’t breathe through the pain.

She mirrors the fear that must be apparent in my face. “What… what? What’s wrong?”

I double over, breathing hard. Taking a deep breath, I manage to say: “Mom, we need to get to the hospital. Fast.”

Despite the Terbutaline and the variety of other interventions they attempt to get my body to slow down its inevitable course, this baby is stubborn — it is ready to be born.

It has been a hectic, stressful five hours, I’m exhausted, and now I’m surrounded by a crowd, waiting with bated breath to determine the baby’s condition. It feels like a medical conference: pediatrician, NICU nurse, lots of doctors, even a social worker standing right outside.

My husband jumps from doctor to doctor, fielding medical questions, while I say the Tehillim I know by heart over and over again.

No one can predict what the baby’s condition will be, and although the delivery is fairly simple, there are a few tense moments right after she’s born. When she lets out a weak cry, we all exhale. I catch a brief glance before they whisk her away. She is perfect, adorable, and angelic, and so very, very tiny. The angels in blue scrubs immediately descend, warming and stimulating her, working their magic as they give artificial respiration, suction her mouth and nose, rate her APGAR scores. Only once they bring her to the NICU do I allow myself the luxury of crying.

I visit her soon after in the NICU, where our baby girl remains in the warm incubator, hooked up to fluids and nutrition through her nasogastric feeding tube. She’s surrounded by machines, so many machines: oxygen saturation monitor, bili lights, CPAP to help her breathe.

The ward is surprisingly calm, lacking the frenetic energy of the maternity ward. When the neonatologist comes in, she’s surrounded by a group of students. Dr. Rachel Castle states her name tag. Her periwinkle eyes are understanding, inviting, comforting.

She gently places her gloved hands through the openings of the incubator. “How’s the little princess doing today?” She does a quick purview of the records, watches the numbers that flash across the monitor for a long moment.

“She’s looking surprisingly good. No lightweight,” Dr. Castle grins. “Almost three pounds at 29 weeks is great. I know this feels awful, but really, it’s a best-case scenario. Given her weight and what we’re seeing, she may be out in as little as a month. Five pounds — that’s our goal for her.” The doctor gives my shoulder a soft squeeze.

I gulp, hard, as the doctor’s phrases floated around my head. Best-case scenario… a month… “What… what will happen then?”

“It really depends on the baby’s condition. If she gains well and can eat from a bottle, she’ll go home like any other baby. And then you’ll just need to keep your eyes open and monitor her development due to her preemie status. Early intervention works wonders with these kids.”

We both look at her, bright blue veins visible through her translucent skin. Poor little baby.

“We’re taking good care of her, and before you know it, she’ll look like every other newborn.” Dr. Castle gives me an encouraging smile, and moves on to the next bassinet.

I know there’s a better future ahead,  but right now, all I can see is the tiny body encased in tubes. Her translucent skin looks achingly like Mommy’s.

After I’m released from the hospital, we take turns doing shifts to be with baby Bracha. It is a G-d-send that Mommy is in town now. That first night, Mommy insists I go home to sleep in my own bed, and tells me she won’t move from Bracha’s side. I know she’ll be amazing, pushing her arms into the holes, gently placing her hands on the frail body, talking and singing to her. It makes me feel okay with leaving the baby.

Back home, I find myself walking around the house aimlessly, untethered. I know I should be resting, but that’s what I’ve done all day, and I feel the need to do something.

I end up in the guest room where Mommy’s staying, straighten up the odds and ends lying around. There’s a loose paper on the desk, ripped off a pad from a nameless hotel room. In bold, capital letters, in her indistinguishable handwriting, she has written: PROS, with a thick vertical line straight down the middle of the page, and CONS on the right-hand side. The columns remain blank. Doodled all along the periphery of the page are sketches: a brain, an IV pole, a tombstone.

Oh, Mom.

She’s going through such torment. I’m  putting her through such torment.

The next morning I return to the hospital. My heart trips over itself as I see my mother next to my daughter’s bassinet, humming softly. A lullaby I’ve known since forever: “Go to sleep, little one;” but it is also the tune for Hamalach, and for a second, I’m convinced she’s singing the latter.

Her eyes are bloodshot from lack of sleep, and it seems she’s lost some weight during her evening vigil.

“Mom, hi,” I whisper, leaning in to give her a kiss on her cheek. “How was the night?”

She gives me a tired smile, but her eyes are filled with strength. “It was great, I loved bonding with my newest granddaughter.”

“You’re sure it wasn’t too much for you? I don’t want you to overtax your body…”

Mommy swats the air with her hand. “Don’t be ridiculous. I love to be able to give to you.”

I smile; Mom is the consummate giver. “Thank you, it was nice to get the chance to sleep without machines beeping at all hours.”

“It was truly my pleasure.” She gives my hand a squeeze. “When you love someone, it’s not a burden.”

Maybe it’s the hormones coursing through my body, maybe it’s the endorphins that are emboldening me to bring up the topic again, but I find the words escaping myself before I even realize I’ve thought them.

Her hand is still on my own, and I grip it more tightly. “Mom — listen to yourself. When you love someone, it’s not a burden.”

She quickly removes her hand, crosses her arms, a shield. “What are you trying to say?”

I take a deep breath to steady myself. “Mom, you told me that your entire life you’ve been a giver, and you refuse to be selfish at the end. You claim you’re refusing to be a burden. But don’t you see? When you love someone, it’s not a burden.”

She looks down at Bracha, quiet.

My voice grows softer, pleading.

“Move in with us. Please. We’ll take care of you…”

She says nothing, seems to be taking it in. I feel the hope bloom in my heart, bask in the charged silence.

And as her eyes film over with moisture, the hope deflates as she sadly shakes her head “no.”

“I can’t put you through what I experienced with Daddy. I watched him die. I can’t do that to you guys. And Lisa, please,” she looks at me, strong and weak, firm and soft, “don’t bring this up again.”

Her voice is now hard as steel. “Respect a dying woman’s wishes: I don’t want to discuss this further.”

I know it might seem irresponsible, but I need to go to the beach. It’s always been this way. The beach calms me in a way nothing else can. Maybe it’s all those summers spent in Cape Cod with my family, way back when things were still simple, and the most upsetting thing was Michael destroying the sand castle I spent all morning building.

Mom is with Bracha, my husband is with the other kids, and I need saltwater to clear my head.

The day is overcast, the sun glinting against a metallic sea. I take a deep breath, let the salty air fill my lungs. The gulls fight over scraps of bread, the fishermen throw their lines. It feels like nothing ever changes here, yet change is everywhere. The constant waves remind me of that.

A memory from Cape Cod rises up, I must have been about five, when Mike pulled his usual antic, knocking over my sand castle. I remember what he said: It was going to get ruined later tonight by the tide, anyway. And I recall my stark indignation, that feeling: It’s not the same at all.

I look out at the gray-blue waters, take in the sounds. I can’t help but think of my daughter’s lub-dub-lub-dub as the gently lapping waves dance back and forth. The water, the heartbeat, my daughter’s, my mother’s…

I came here to get away, but all my thoughts pull me in only one direction. And I realize with a profound sense of disappointment that there is nothing left for me to do.

“Have you signed the papers?”

It’s been four endless weeks filled with stress and medications and weight checks and regressions and forward lurches. But we’ve made it, and now we’re finally being released from the hospital.

Mommy’s been amazing, doing night shifts, even when we assured her baby Bracha would be fine with the nursing staff. She seems to have gotten a new lease on life playing this role. It’s perfect for her energy levels, and Bracha seems calmer in her arms than in anyone else’s. The highlight of my day is coming into the NICU and seeing Mommy resting on the La-Z-Boy, with Bracha swaddled against her chest.

Bracha is still so very tiny, and the Doona looks like it will swallow her whole. I smile down at her while I gather our stuff into a wheelie to bring home, all the odds and ends that have crowded her bassinet this past month.

My mother is double-checking the metal cabinet drawer for the release forms, and I shake my head.

“No, Shlomo should be signing right now.”

The papers… The topic of the PAS papers has been completely taboo between me and Mom, but never far from my mind. And right now, I desperately need to know.

I throw the question back at her. “Have you signed the papers?”

She looks up, startled, thinking I’m referring to Bracha’s discharge papers.

I give a small grin. “Not those papers, Mom. You know… the other ones we aren’t discussing.”

I brace myself, but she takes it in stride.

“I’ll tell you the truth, I haven’t.” She pauses, deliberating.

“I’m still undecided… I guess this month has shaken things up for us all, huh?” She looks up, catches my eye, and I sit in the silence, knowing not to push her.

I watch her stick a finger into Bracha’s hand, wonder what the magic of a newborn has done for her, how the bonds of family and love have impacted her feelings.

“You’ve been saying for a long time that the Torah says every moment of life is precious… and, well….” She shrugs. “Let’s just say I’ve been doing a lot of thinking.”

Just then Shlomo pokes his head into the room, waving a sheaf of papers.

“We’re ready to launch! Let’s do this. You girls all ready?” He looks at Mom pushing the stroller, at Bracha bundled up, at me with the wheelie.

“Yup, ready to go!” Mom smiles at me, grabs the wheelie from my hand.

“Push your daughter’s stroller. She needs you… Leah.” And with her other hand, Mommy grabs my free one, connecting us all.

 

(Originally featured in Family First, Issue 774)

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