Binders, Guest Posts, motherhood

Sixteen

September 10, 2015

By Debi Lewis

Sixteen times, I’ve stood at the side of a raised gurney in an operating room and sung my daughter to sleep.

Sixteen times, I could faintly smell the scented oil the anesthesiologists rub inside the mask, the mask that delivered sleeping gas, the oil they put there to cover the smell of the gas, the gas she could still smell and taste, making her grimace until she was overcome.

Sixteen times, I kept singing. Sixteen times, I planted a kiss on her still-warm skin above the mask. Sixteen times, I walked back to the pre-operative room and gathered up my husband and our belongings, and sixteen times I shrugged and stiffly shook the vision of my limp and drugged daughter from my head.

“She’s fine,” I answered my husband when he looked at me, questioning. Though who knows? By then, many times, she may have had tubes down her throat, things pinching and scraping her insides in places I would never see with my own eyes. Fine? I suppose.

****

Sometimes, I must have cried, a little. Most times, I don’t believe I did. The routine of it makes them all blend together; the coffee sipped while we waited, the nausea rising at the smell of a hospital breakfast, the same sixteen pages of sixteen books read a hundred times, all of them dull and timeless. Always, I wondered how she could still be in there. Every time, the clock was a demon, moving slowly as they mucked around with my daughter’s insides. My eyes and mind paced when she was asleep, circling around the room.

No matter the conversations I had while we waited, I walked and moved to the beat of the song I’d sung as she fell asleep, my eyes locked on hers so that, if she didn’t wake up again, my face would be the last thing she saw in this world. She was born into medical equipment, strange doctors’ faces, suctioning, poking, bright light. I would not let her leave like that. Let the end be a comfort, I always thought, and so I always found myself as focused as a yogi at her bedside in the operating room. I imagined myself an angel, a guide, and I stared peacefully into her eyes and sang. I sang lullabies from my childhood and hers; nursery rhymes when she was a toddler; a pop song called “You and I” that she was learning to play on the ukulele. I sang and held her hand and I was not scared. I did not want her to think I was scared. And after I walked out of the operating room, my soul was alert for the sensation of hers, leaving or staying.

So if she asks, “what did you do when I went to sleep in the hospital?,” how can I ever tell the truth? Played cards. Checked my email. Barely noticed the time going by; it was so quick!

****

In my daughter’s eyes, I was in charge. I had the power to fix, to arrange, to demand. If she had to pee, I knew where the specimen cup was and where to deliver it when it was full. If her grandmother, often at her side before and after each time, was in charge of entertaining and distracting her, I was in charge of making my daughter’s few small demands into reality. I told them to put her IV in the left hand, not the right. I asked for cold water afterward and orchestrated the return of her underwear as soon as possible.  I was ready with an audiobook in the car on the way home, with her drowsy and limp in the back seat.

But leaving her side in the operating room, I shrunk three feet. “Come this way, mom,” a nurse said, hand on my back as she led me through the swinging double doors. The long walk away from my daughter felt like a punishment, a time-out from a toy I hadn’t treated appropriately. The weight on me as I walked away from her – down the hall, away from the room where someone would be cutting her, hurting her, digging through her for anti-treasure – was heavy and heavy and heavy. The nurse always smiled at the door of the room where my husband waited and recited a variation on “we’ll take good care of her.”

Don’t you worry about her for a minute, mom.

You go get a snack. We’ll let you know when you can see her.

She’s in good hands.

But she wasn’t in my hands.

****

In those sixteen times, I assumed the role of sickbed stenographer, sending the family emails and text messages with the news of the day. All clear. She’s awake, doing fine. When test results were available, I shared them, with shiny exclamation points and keywords that set a tone of hopefulness and expectant recovery. We’re so relieved to share… She’s on the right track! The doctor was glad to see…

These messages, like all such messages, were coded orders to the universe. I read about intention, about gratitude, about the law of attraction. I may have had the inside scoop direct from the operating room, the recovery room, the hospital elevator, but inside my daughter’s body were cells without a view to the world she left during her sixteen times teetering between me and oblivion. I sent my emails secretly to those cells, to those parts of her disobeying the hopeful can-do attitude I faked so beautifully.

The texts flew back to me as I watched my husband hold her sleeping hand in the recovery room. Great news. Keep us posted.

****

“If you ever need to go to sleep at the hospital,” I overheard my daughter tell her older sister one day, “Don’t get the orange smell in your mask. It’s terrible. Pick the strawberry one.”

From the kitchen, I added this to my mental list, then excused myself to the back porch to sit, head in my hands, and cry over my six year old daughter who had a favorite scented oil to cover the smell of nitrous oxide.

****

Sixteen times, I had to be the grownup and then not-the-grownup. I had to care for her and then let others take over. I had to be tough and then be softly led. I had to take control and relinquish it, over and over each of those sixteen times. It made my heart freeze and melt and freeze and melt. My face didn’t know what to do with itself.

Every anesthesiologist who learned that I would insist on accompanying my daughter into the operating room would give me a speech about the side effects of anesthesia, which are mostly not dangerous but also mostly unpleasant to watch. Sometimes my daughter experienced those symptoms – though she never remembered them – and sometimes she didn’t. I was prepared for them, and they didn’t scare me.

No one ever talked to me, however, about the side effects of walking your daughter into an operating room sixteen times. No one ever talked to me about the lasting memory that would be for me, about the way it would change me as a parent. I never heard a list of symptoms to watch for – a disinterest in discussing it with my friends, a drop in patience for other parents unable to shut down their tears, an inability to picture my daughter as an adult although every prognosis was exceedingly positive.

Sixteen times, I was and I was not the adult.

Sixteen times, I wished they’d put me to sleep alongside her, so we could play together in our dreams.

****

My daughter went from a year old to eight years old in those sixteen times. She does not know a childhood without general anesthesia, and until she could remember between visits whether the next stop was a procedure or a clinic visit, she’d cheerfully ask me on the way into the hospital parking garage, “am I going to sleep today?”

I’d stare forward in the front seat, navigating the turns, and answer her, sometimes yes, sometimes no, and realize that for all my preparation, I was no more ready for the next experience than she was. The difference was that her child’s mind was loose and able to flow with what the day brought, and mine was always braced, clanking against the sides of my skull, bruising with the impact. The more routine it felt, the more the bruises ached.

There was no anesthesia for parents, and the repetition was only numbing until it wore off.

Sixteen times sounds ridiculous. There are sixteen mornings she’ll never remember, sixteen IVs inserted when she was still asleep. Sixteen long, long walks from her bed during which I made peace with losing her, with the hours I had between then and joy or then and horror.

****

There are side effects from sixteen times like that. Bedtime is extra sweet, and extra dear, in a bedroom covered in glow-in-the-dark stars. I am gentle about extra quiet chatting in the light of the universe around us, willing to whisper long after I’ve sung a lullaby, happy to lie on the pillow next to her and run my hands along her bare arms, brush the hair away from her forehead, and feel the warmth of her shoulder under my lips. We linger there, languid and dreamy.

I don’t see her as a solid creature. She is made of strawberry-scented air and spun sugar, and she has never been altogether mine. She has belonged to whatever flowed through her IV and returned her to me on the other side. She is lovely, and in this moment, she is here.

 

Debi Lewis is the mother of two daughters and blogs regularly at swallowmysunshine.com. You can find her essays at Brain, Child Magazine; RoleReboot; Mamalode; Kveller; The Mighty; and on ChicagoNow. She is currently at work on a memoir about her younger daughter’s journey through medical mystery.
Book Girl Power: You Are Enough now! A workshop for girls and teens. Space is limited. Sep 19 Princeton! Sep 20th NYC. The book is also forthcoming from Jen Pastiloff. Ages 13 and up. (NYC is 16 and up due to studio policy.)

Book Girl Power: You Are Enough now! A workshop for girls and teens. Space is limited. Sep 19 Princeton! Sep 20th NYC. The book is also forthcoming from Jen Pastiloff. Ages 13 and up. (NYC is 16 and up due to studio policy.)

Ring in New Years 2016 with Jen Pastiloff at her annual Ojai retreat. It's magic! It sells out quickly so book early. No yoga experience required. Just be a human being. With a sense of humor. Email barbara@jenniferpastiloff.com with questions or click photo to book.

Ring in New Years 2016 with Jen Pastiloff at her annual Ojai retreat. It’s magic! It sells out quickly so book early. No yoga experience required. Just be a human being. With a sense of humor. Email barbara@jenniferpastiloff.com with questions or click photo to book.

You Might Also Like

13 Comments

  • Reply Mandi September 11, 2015 at 9:03 am

    Stunningly beautiful. A tribute to a mother’s love. Thank you for writing it.

    • Reply Debi Lewis September 11, 2015 at 9:57 am

      Thanks, Mandi. It was hard to write but feels good to read, if that makes sense!

  • Reply Janet September 11, 2015 at 2:05 pm

    This is beautifully written. Thank you.

  • Reply Yvonne September 15, 2015 at 4:20 am

    This is a beautiful post. I love the honesty in your writing about your feelings. I particularly like the last paragraph, especially the words: “she has never been altogether mine.” I can relate to that so much – my second daughter was born 3 months prematurely and for a long time I felt as if she was on loan to us and I couldn’t assume we could keep her. Even now, I can feel that and she’s 16 – it passes through me, bringing gratitude and a shiver. (Incidentally there’s also glow in the dark stars on her bedroom ceiling!)

  • Reply EB WExler September 15, 2015 at 9:07 pm

    I loved this so much. I don’t even have kids! Yet I felt so much of what you said, from your beautiful, honest, raw, sharing. Thank you.

  • Reply Holding Things - Swallow, My Sunshine October 13, 2015 at 11:17 am

    […] endoscopies. Each time, she fasted from dinner the night before until after her morning procedure. Each time, they held a gas mask over her face in the operating room until she fell asleep, and then, after escorting me out of the room, they […]

  • Reply Wait. Breathe. Wait. - Swallow, My Sunshine December 16, 2015 at 10:46 am

    […] world, it seemed, was the problem in those months. After sixteen times putting my daughter under general anesthesia, after the crazy diets and the dangerous practices […]

  • Reply Fragments and Money - Swallow, My Sunshine December 23, 2015 at 7:32 am

    […] years of being unable to swallow correctly. A return of that money would not have given me back the mornings spent wondering if she would wake up from her anesthesia. A return of that money would not have given her sister […]

  • Reply Let Me Take You There - Swallow, My Sunshine July 28, 2016 at 3:33 pm

    […] Sixteen […]

  • Reply Three Days of Reckoning - Swallow, My Sunshine October 13, 2016 at 12:34 pm

    […] laughed, softly, thinking of endoscopies and cardiac surgeries and anesthesia and elimination diets and medications and said, “Me too, […]

  • Reply Across the Border - Swallow, My Sunshine February 23, 2017 at 9:28 pm

    […] table where she labored to finish a meal in under two hours? When I stopped crossing the threshold between the operating room and the hospital corridor every few months, I had to find a new place to explore. No longer defined by all the things she and […]

  • Reply Practice Mom - Swallow, My Sunshine April 28, 2017 at 6:55 am

    […] have to obsessively feed her anymore. I do not have to accompany her through days at the hospital, walk into operating rooms with her, or keep notes her health. I’m now just a regular mom — not the mom of a sick kid, not […]

  • Reply Lemonade Out of Gluten-Free Lemons - Swallow, My Sunshine July 21, 2017 at 9:12 am

    […] room of a local hospital, waiting for her daughter’s endoscopy to be over. I flashed back on all the times I’d waited like that, and I knew the stress came in waves: waiting for the doctor to tell her it was over, waiting to […]

  • Leave a Reply

    This site uses Akismet to reduce spam. Learn how your comment data is processed.