Riding the Waves

14 Jun

My seven year-old daughter is Hanging Ten this week. The soggy gray drizzle of Santa Barbara’s typical June weather doesn’t discourage my little brown “Wahine” as she dons a miniature wet suit and wades into the frigid Pacific Ocean. Spread with a thick layer of sunscreen and a light dusting of sand on her cinnamon skin, she is as delicious as a warm sugar bun fresh from the oven. Isa giggles and shrieks with delight as the foamy tide hungrily swallows up her feet and as I watch her leap and dance upon the shore I’m so full of gratitude that my heart physically hurts.

This week, Isa gets to do something for which I would never consider paying good money for her to learn to do: SURF. Don’t get me wrong—I’m a California girl born and raised, and I most certainly do appreciate the sport (or art form) of surfing—it’s just that the $400 for five days of surf camp isn’t something our budget can realistically handle at the moment.

The most wonderful and marvelous detail about this story is that I don’t have to pay for surf camp—Isa gets to participate in this camp for free. She gets this opportunity because when she was two and a half years old, she came close to losing her life to cancer, and surf camp is just one of the many “cancer perks” she has received since her diagnosis over five years ago.

All of you know that cancer (especially when kids get it) is mostly evil and rotten and torturous, but as I’ve reiterated since the start of our wild journey into the world of pediatric cancer, it’s also responsible for bringing beauty and kindness and love into the lives of patients and their families. One of the most moving aspects of being thrown into this whole cancer mess is discovering how many people out there are willing to help make your life easier. This week, the Teddy Bear Cancer Foundation and Surf Happens of Santa Barbara have stepped up for us, sponsoring Isa for a week of surf camp so that she can climb up on a surfboard and ride a wave for the very first time in her life.

Now, over the past five years, I’ve learned to appreciate these “cancer perks” that have been generously given to Isa and the rest of our family since she was  diagnosed with her leukemia. I first heard the term, “cancer perks” from writer John Green, whose teenage characters in his novel The Fault in Our Stars discuss the various perks they receive because they are fighting cancer. (I highly recommend reading this poignant, yet often hilarious love story if you want to understand a little more about how life-changing pediatric cancer can be, not only for the patient but for the entire family as well.)

Some of the “cancer perks” our family has received over the past few years are: financial support during Isa’s initial hospitalization, loads of fun parties, free tickets to events, weekend family camps and presents too numerous to even count. Let’s not forget the Big Kahuna perk—the all expenses-paid trip to Disneyworld (Thank you, Make-a-Wish Foundation for an experience our family will never forget.) We’ve accepted these gifts with great appreciation and gratitude, but now that Isa is coming up on her five year anniversary of complete remission, the idea that we should still be receiving “cancer perks” weighs on my mind quite a bit. The internal struggle I’ve been facing is that I wonder if it’s still all right for Isa to get free stuff even if she’s going to be considered cured in a few short months?

You may not realize it, but a ton of guilt attaches itself to a family of a cancer survivor. Bottom line is that your child is alive, while some of your friends’ children have died. The guilt that comes with this experience is often wrenching (although I know our pain is only a minute fraction of the pain that my friends feel after having lost their child.) Then there’s the guilt you feel when your child is done with her treatment and is now living a happy and healthy life, while other children are suffering through their chemotherapy and are constantly miserable. You are beyond elated that your child made it and want to shout it to the mountaintops, but feel the need to keep it to yourself so as not to make anyone feel too badly that they’re still in the thick of it.

A few weeks ago Isa and I attended the annual “Family Fun Day” event put on by The Teddy Bear Cancer Foundation. It’s a chance for families to get together at a ranch in our local mountains and just relax and have fun with other families who have children battling cancer. I was surprised to have met so many new families whose children have recently been diagnosed, and as I watched the parents interact with their kids, I could see the fear in their eyes, even though they were smiling and laughing and acting as if they were having a good time.

I know exactly how they feel—how their world has shrunk into a place where you only think about cancer and treatment and worry and fear; a world where you carry plastic bottles of hand sanitizer everywhere you go to kill any microscopic germs that may infect and sicken your immune-suppressed child; a world where you try to get your kid to eat even a tiny bit of healthy food even though they shake their heads and cry and tell you that they’re not hungry.

I talked to a few parents whose children have been diagnosed with the same leukemia that Isa had. I remember when Isa first got sick, any story of survival gave me the faith I needed to get through another day, so my hope is that by relating our happy ending to them, they are comforted by the fact that if my child survived, theirs will too.

I guess I’ve just answered my own question about whether or not it’s all right for us to still be receiving “cancer perks.” Of course it is. Our role is that of cancer warriors—if we beat it, then so can you. If our presence offers hope to others, then accepting perks like surf camp is the right thing to do.  If we turn our sad story into a triumphant one,  then perhaps the guilt can be left behind.

I believe that because Isa had cancer, she will never again be just an ordinary girl. Her cancer experience has turned her into something special because she’s a survivor and for this reason alone, she’s a bright light of hope for those families who are waiting and watching as their own child goes through treatment. It’s our responsibility to do whatever we can to ease the pain of others who find themselves navigating helplessly through the rough waters of pediatric cancer.

My sweet little bald Isa.

I’ll never forget that I was once caught in that storm, feeling as if I was about to capsize without a lifejacket. Even today, I think about cancer every morning when I run the hairbrush through Isa’s long, tangled hair while she whines and complains that I’m such a mean mommy to be hurting her this way, and I remember the time when there was nothing growing on her bald little head. I think about cancer when she comes home from school and runs into my piano studio to kiss me hello and gushes on about what her teacher taught her, or what her best friend said, and these seemingly mundane moments make me happier than I ever thought I could be.  I think about cancer when I tuck her in at night and kiss her smooth cheeks, and I no longer have to force her to swallow four different kinds of chemotherapy pills before she drifts off to sleep.

I’m not able to leave the cancer world behind because as I’ve said so many times before, I don’t want to. Isa’s cancer has helped turn me into the person I needed to become. I refuse to stop thinking about cancer because if I do, I might lapse back into that woman who I used to be—the one who was ungrateful and disappointed and dissatisfied for so long—the one who used to stand on the beach and moan and groan about the sand and the tar and the freezing water.

I realize now that I’m lucky to be where I am today. All of that pain and suffering that our family went through has made me aware that the beauty and magnificence of life is hurtling down upon us every minute of every day, just like those perfect green waves that form and curl, and then break upon the shoreline, never resting, never stopping, never giving up.

So I’ll take the “cancer perks” for as long as they’re offered, and in turn, I’ll be right there, holding Isa’s hand as we stand on the beach, the frothy waves crashing over our feet, our presence there offering absolute proof to others that anything is possible.

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13 Responses to “Riding the Waves”

  1. Eleanor Winters June 15, 2012 at 8:16 am #

    Very nice, Jess. You have absolutely nothing to be guilty about, in any arena, except perhaps in giving too much (if there is such a thing).

  2. John Sweeps McNulty June 15, 2012 at 10:13 am #

    Isa.. surfing the waves. Beautiful!

    • Allegro non tanto June 15, 2012 at 9:37 pm #

      It was magnificent–she was so brave! All those gigantic waves…

  3. Charla Bregante June 15, 2012 at 1:37 pm #

    Beautiful, Jessie. Clearly you have found many gifts among in the ordeal your family faced together. That’s what life’s about, isn’t it? Keeping our eyes open for those gifts. They come from unexpected places at unexpected times. And they’re easy miss if we’re not careful. Thank you for continuing to share your story.

  4. debatterman June 18, 2012 at 5:06 pm #

    The photo of Isa on the surfboard moves me to tears as much as the photo of the sweet little bald Isa .. . .Doesn’t it all boil down to the spirit in which we cope with what we’re dealt? To be a mother and to write with such honesty about those ‘waves’ that knock you down and lift you when your child (and your family) has gone through so much is a gift.

    • Allegro non tanto June 18, 2012 at 5:14 pm #

      We’ve been knocked down by a lot of waves over the past five years, yet our strength only grows each time we get up and face the next one. The trick is learning to dive in head first!

  5. Britton Minor June 19, 2012 at 7:54 am #

    Beautiful Jessica. I too was moved to tears of mother-joy for your sweet and tough Isa, and for you–who must just burst inside like a supernova at the sight of her. As for the “perks,” I would venture to rename them to “celebrations,” for this is what the givers are helping you do. Besides, Isa will give back above and beyond what she has receivedqq. Just wait and watch. I’ll bet you’ve already seen her do this…

    • Allegro non tanto June 19, 2012 at 3:36 pm #

      Every time I watch my fearless daughter try something new, I do celebrate her! And you’re right, “celebration” is a much better word than ” cancer perk”! Thank you!

  6. Becky Green Aaronson June 19, 2012 at 3:33 pm #

    Jessica, I’m not sure I can adequately put into words how much I love this post. The power, honesty, love…Isa hanging ten and moving on with life, and you sharing what you have been through in a way that makes us feel like we’ve been right there with you and your family, celebrating and being forever grateful. Your entire family has given back in so many ways, I wouldn’t hesitate to continue enjoying these perks. What better way to celebrate and show other children that there is life after cancer! Go isa!

    • Allegro non tanto June 19, 2012 at 3:39 pm #

      Thanks Becky. You always say just the thing I need to hear! You’re right, too–Isa’s light and presence is so important to the many families who are dealing with cancer. She’s like a little ray of hope (on a pink surfboard!)

  7. happykidshappymom June 24, 2012 at 8:19 pm #

    This post is not only straight from the heart — it is straight to the heart.

    Jessica, your outlook, your strength and your words are a story each one of us needs to hear. Thank you for sharing this piece of your life. Isa is beautiful, and this line, “she’s a bright light of hope for those families who are waiting and watching” is one that I hope will ring on in your mind always.

    Many happy wishes and hugs to you and your family, for many more wonderful days ahead.

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