Why Not Me?

9 Sep

I suppose I should begin by writing about my cancer experience. It’s really Isa’s cancer experience, but she was only two years old when she was diagnosed, and barely remembers any of it, so I’m claiming it as my own. I want to share my story because it’s the main reason I began writing again in the first place. It’s much too long a tale to tell in one post, so I’ll probably write about it here and there and spread it out over time.

Last night I was back in the hospital with Isa and my husband, Rene. No, I wasn’t there because our daughter was sick or had suffered any relapse of her illness; but because Isa’s pediatric oncologist had asked us to speak to the parents of a four year-old girl (whom I’ll call Lili to protect her privacy) who was recently diagnosed with the same kind of leukemia that Isa had. He thought it would comfort Lili’s parents to meet Isa and see that after two and a half years of chemotherapy treatment, our daughter is now a normal, healthy six year-old.

It’s still very difficult for me to go back to the hospital, even though I know that Isa is in complete remission right now. Walking through those endless tunnel-like hallways lit by the yellow glare of fluorescent lights, seeing all the doctors in their light blue scrubs, and especially the distinct sweet smell of hospital antiseptic, all manage to trigger a mental time-relapse in my head. I’m transported back to a place in my life when everything I considered normal blasted apart like two cars in a head-on collision.

Before Isa’s diagnosis, pediatric cancer was something I’d watch once a year while the St. Jude Hospital telethon played on television. Cancer in children was relegated to the narrow periphery of my life; a quick glance of a sunken-eyed, bald headed child lying in a hospital bed, tubes dangling every which way from her body like strands of dress-up costume jewelry. I’d pause a moment to sniffle noisily while the music swelled and think, “Good thing that’s not my child—I’d never be strong enough to handle that!” Those brave and miserable kids managed to bring tears to my eyes, but I was so removed from the reality of childhood cancer that I never even made a donation to St. Jude Hospital. Not once.

Then it happened. From one day to the next, I had become a member of a very special club— THE PEDIATRIC CANCER CLUB.  Welcome to stark hospital rooms, the endless scrubbing away of germs, sleepless nights, and life-altering anxiety. Welcome to anesthesia, surgery, blood transfusions, and an array of chemotherapies so toxic that the nurses have to wear protective clothing so as not to burn their skin while they are putting those cell-destroying chemicals into your child’s body.

Welcome to the abyss of primal maternal fear.

 

It’s not a place I’d wish on my worst enemy.

As we walk into Lili’s hospital room, I immediately feel that incipient fear oozing out of her mother, Marta, like thick, black bile. It’s almost as if I can see into her soul and I can tell she’s stuck in that dark and disconsolate place—a place I know intimately. There, fear is a hard rock in your stomach that won’t go away no matter what type of positive diagnosis the doctors give you. This place is a particular hell where you can’t stop asking the question, “WHY ME?—Why my little girl? Is she going to die?”

I will tell Marta that Lili will most likely not die—that her daughter’s type of leukemia has almost a ninety percent cure rate. I will tell her that she’s about to go through the worst hell imaginable; that watching her daughter suffer will be a heavy burden that she’ll carry for many years to come. Yet, in the same breath I will also tell her that she will come out of this experience with a greater appreciation for the beauty and preciousness of life. I will tell her all of these things, but I know she won’t believe me right away.

She won’t believe me because she has to experience it herself. She has to go through the process. Right now, she’s in that place that you can only escape through the passage of time and experience. Marta won’t feel safe again until Lili is done with her treatment; her hair all grown back, and is considered cured. Even then, the fear will never go away completely. She’ll do as I did: watch and wait and worry. She doesn’t yet know  that the fear will ease over time, and the evidence of great blessings will become apparent.

When Isa was first diagnosed, I spent time in that dark place: Why me? Why did this have to happen to our family? We don’t deserve it; Isa doesn’t deserve it. What I didn’t know then is that I would eventually ask myself, “Why not me?

Lives are changed by a child’s cancer diagnosis; normal family life is turned upside down in an instant. What I’ve learned is that patience is paramount, because many blessings are right around the corner. You’d never imagine it, but cancer can turn out to be a marvelous gift—an incomparable, transforming gift.

Isa’s cancer experience certainly changed me in profound ways: I learned that I am stronger than I ever imagined. I learned to accept a difficult situation with grace. I learned to allow others to help me when I was used to doing everything myself.  I learned that there are angels walking amongst us who are masquerading as pediatric nurses.

I learned to slow down and breathe and be grateful and LOVE more deeply. I learned that I have the ability to help others who are going through what I went through—that I have something significant to share with them, just because I’ve been there.

I walk into the very same hospital room that Isa stayed in over four years ago. There is Lili, sound asleep in her hospital bed, the static whir and beeping of the machines droning in the background, and I see her mother next to her. I reach out to hug her tightly and our tears flow together.

I will help her to not be so afraid.

Why not me?

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8 Responses to “Why Not Me?”

  1. Erika September 9, 2011 at 8:09 pm #

    Jessica,

    You write beautifully. It brought me to tears because all those emotions and feelings you were going through, I felt them as well. Looking forward to reading your blogs. I’ve always thought about writing about Jeffreys story.

  2. Betty Pierskalla September 9, 2011 at 11:10 pm #

    Jessie, I think you are awesome. I admire your talent for writing and am so glad you have found this gift. Tis a gift for all of us. Keep writing. Beautiful
    Betty

  3. Nancy Hawks September 9, 2011 at 11:36 pm #

    Please keep writing, Jess. You use detail and descriptions very clearly, so that we, the readers, can be there with you. I look forward to reading more. And what a gift you are giving to others in a similar situation, be it now or in the future.
    xoxo

  4. Becky Green Aaronson September 9, 2011 at 11:47 pm #

    Jessica, you did it again! Tears are streaming. You were not only put here to go through what you have been through, but to WRITE about it. You do it more beautifully than anybody I know. I can’t wait for your next post! Bravo, my friend!

  5. Leah September 9, 2011 at 11:52 pm #

    Beautifully written, as always.

    You are so courageous in the strength you offer to those around you – in this case, especially. You provide such an emotional, empathetic connection – a “speaker of the same language,”and I’m not just talking about Spanish. You both speak “childhood cancer” fluently – sigh, a blessing and a curse.

    Anyway, I love you, I love your writing. I look so forward to your next post, mom!

  6. Liz September 10, 2011 at 12:47 am #

    Wow, Jessica, thanks so much for sending me the link to your blog. You are such a blessing to all of us! I’m grateful that you are able to reach out to help others in this way. What a priceless gift you give when you share your experience, and so beautifully too.

    It’s been many years since our kiddos sat on your piano bench, but I think of you often and am sooo happy that Isa is well!

    xo
    liz

  7. Becki Norton September 10, 2011 at 3:56 am #

    Jessie,
    Your voice is strong, clear, perceptive, hopeful, and human. I can feel how this very trying experience has given you greater access to your own wisdom, beauty, and courage. Isn’t it a relief to reach a point in life where you finally get that the only person’s opinion that truly matters is your own? Thank you so much for sharing this. It caused me to reflect on the trials and blessings of having gone through a similar (but certainly not nearly as intense) experience with my son. He is now a very healthy, wonderful 17-year-old, but pregnancy through age 4, it was very touch and go as we dealt with a very fast, irregular heart beat that was surgically corrected.
    You go, girlfriend!
    Hugs,
    ~Becki

  8. Melanie September 10, 2011 at 3:42 pm #

    Tender and graceful. Beautiful.

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