FIGHTING BACK: One Mother’s Story–Chapter Six

Posted By on June 19, 2017

Traffic into New York City had been bumper to bumper. I was late. Valerie, my five-year-old, was in Babies Hospital one month after her last chemo. It was January 12, 1972, the date marking the end of two long, difficult years of shock and turmoil for my small family. This time, her checkup was for a three-day stay in the hospital; the doctors wanted to make sure that no residual cancer was found in her small body.

I rushed through the hospital’s lobby, ran to the elevator and pushed the button for eleven. It was slow coming down to the lobby: then again it was always slow for me.

Finally, that snail-like elevator reached the eleventh floor and I rushed out. When Valerie caught sight of me, she pointed to the round black and white clock high up on eleven’s wall, a comic frown transforming her impish face. That clock measured time exactly the way I measured flour for baking. No mistakes allowed.

That Awful Hall Clock

The rebuke dragged on as Valerie’s foot, tapping dramatically on the drab floor, punctuated her shout. “You’re late, Mommy. Where were you? I’ve been waiting!” It was a few minutes after ten—any minute after ten, according to Valerie, meant that I was late.  Why did I ever teach her to tell time?

On that Wednesday morning Val lingered in a pink nightie with an outlandish picture of Donald Duck on the front. Faded and permanently stained with finger-paint from the hospital playroom, it was much too big for her but the down-to-the-floor nightgown was loved beyond reason. I dared not throw it away.

Her pout quickened to a giggle and bursting with nervous laughter, she ran to me. I caught her in my arms and held on tight, repeating over and over, “I’m sorrysorrysorry.”

Valerie didn’t complain about the three-day hospital stay once she was there—she was a pro at this point—but, still, misery shone from her eyes. They followed me everywhere that first night as I unpacked her favorite blanket and pillow.

Valerie’s stuffed lion had leaned cockeyed against the metal bed rail and made her hospital room seem more like home, but my little girl didn’t smile. O God. What will they find this time? Nothing! The doctors will say she’s in remission. But I believe she’s free of the Ewing’s sarcoma. Free!

Since hospital rules prevented parents from sleeping over, the night staff assumed a surrogate’s role. Some handled it better than others. A widespread belief existed though, and I for one was a believer, that the nurse in charge of your child was special, that she was a loving stand-in for the parent.

Right from the beginning of the overnight stays, when Val first got sick, friends would drive me to the hospital each morning so that Ed and I could drive home together at night. I would arrive a bit before ten o’clock and Valerie and I would then face, together, the medical staff and their varying procedures.

We spent the in-between time in Val’s room; I read to her, she watched TV and when tired of that, we played card games. In between, I followed her orders.

“Mommy, I want grape juice.”
“I want an Oreo, Mommy.
“I want Captain Crunch without milk. No milk, Mommy!”
“I want won-ton soup, Mommy, with only one won-ton.”

The soup was special, not hospital-based or homemade, and required a trip outside the hospital to a nearby Chinese restaurant. The rest of my time was spent running marathons up and down the eleventh floor collecting whatever my daughter wanted. I was not alone. The other mothers ran beside me.

Ed joined us at the end of his workday and was welcomed as member number two of Val’s private labor force. At that point, he and I took turns following Valerie’s commands. Every so often, though, when Val gave me permission, and after adding ice from the eleventh floor’s fridge to my personally-brewed iced tea, I would sit in the parents’ lounge and sigh in relative comfort. Stored in a large glass jar from home, the tea’s pale color was occasionally mistaken for a urine sample.

All too soon, though, we’d be forced to give Valerie a last hug and kiss goodnight, tuck her in and rush home to Stacy.

Leaving Val’s hospital room, Ed and I would race to our car for the hour and a half’s drive back to New Jersey. We needed to send Stacy’s various babysitters home and tuck our older daughter into bed. Listening to a brief summary of her day, I’d hug her quickly, smooth her hair, touch her cheek and try not to be too annoying. Ed gave her loud, mushy kisses and long hugs and, of course, was very annoying. We mostly made the Stacy-deadline but it was all in the timing.

Time. So precious . . . so scarce. Governed by that black and white hospital clock, it was my particular bully, confining me to boundaries shaped only by illness. Always in hurry-mode my day was a here-there affair, eternally rushing to get somewhere, anywhere, on time. I fought to beat the clock, to move faster, to advance ahead of speeding time, thinking I could somehow slow it down.

When Val was diagnosed with bone cancer, Stacy, our healthy child, was abruptly thrust into the background. It was not my intention nor my desire. I worried about Stacy when we were apart, hustled to get back to her as soon as possible and, yet, when with her, I wanted her sister.

In the wake of all that, I became marked by the belief that time, forever pictured in my mind as a round black and white clock, had to be accounted for every moment of every day.

And I wondered, will I ever be able to saunter through life again? Will I ever lose the worry that now stalks my every footstep? Will I ever find my way again?

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About the author

When not at her desk writing, Suzann can be found walking the hills of her neighborhood, working for her charities and lunching with friends. She is rarely found in the kitchen.

Comments

31 Responses to “FIGHTING BACK: One Mother’s Story–Chapter Six”

  1. Ronnie Liebowitz says:

    You are so honest and clear in explaining your ordeal and love be. Thank you fir sharing.
    It was lovely to see you both the other night.
    All the best,
    Ronnie Liebowitz

  2. Jeanne Kerwin says:

    Dear Suzann,
    as always, each chapter you write commands my deepest attention and thoughts. This chapter made me wonder about the few I missed in the past months because of my work schedule and moving my office and life in general. But I felt deep pain when I read the part that required parents to leave and not be allowed to stay overnight. How sad. But then I thought of Stacy and her needs, so perhaps it prevented you and Ed from having to make the awful choice of where to sleep.
    your incredible story continues to reach my inner spirit and wonder at your strength and ability to love your way through life. I have changed my email address to my home address so I can have a better opportunity to stop and read each chapter. I hope I can get back to those chapters that I missed along the way. Bless you Suzann for your contributions to the field of palliative care and parenting through tragedy.
    with great respect and love, Jeanne

  3. Dick Berlowe says:

    I really like your writing style but the subject matter is something that no one but those who
    have gone through it could possibly understand. You and Ed (AKA N word) have done a
    beautiful thing to honor your children.It is an honor for me to call you friends. Keep on
    Keeping on

  4. Elaine durbach norstein says:

    I feel you holding back the tide, as we wait for you to describe the wave breaking. Such powerful language. Such love!

  5. Paul Kiell says:

    The slow elevator;. . .

    you skillfully added the ingredient and extra burden of time going painfully slow so that the readers feels the same thing for you

    paul

  6. Carol Goldsmith says:

    Written so beautifully. I can feel every emotion along with you.

  7. Laura Weitzman says:

    I continue to look forward to reading your work. Your writing envelops the reader! Laura

  8. Shirley Cohen says:

    So beautifully written. I know Ed from H.S. I can’t possibly begin to know what you both endured and my heart goes out to you both. I know the grief you feel and the hole in the heart that never goes away. Bless you both.

  9. Pat Sebold says:

    I cried

  10. Charlene Ruggiero says:

    Very tough time in your life:-( My heart went out to you.
    Chuck

  11. Sigrid Franzblau says:

    “And I wondered, will I ever be able to saunter through life again? Will I ever lose the worry that now stalks my every footstep? Will I ever find my way again?”

    I’m sitting there with you at times in my life.

  12. Rhoda Krueger says:

    Dear Sue’

    Your writing and the reliving of those precious moments with Val and Stacy bring back to
    me those years of disbelief that life could be so cruel to you and Ed and your beautiful loving family. Your writing is so very real and in the moment I admire and love you and Ed even more now for being able to share this!

  13. Bonnie Wilder says:

    Dear Suzann,

    You write in such a beautiful, expressive and honest way. It is so touching and heartbreaking. I feel your pain with every word. Sending hugs to you and Ed

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