An Ordinary Birthday Party

21 Sep

Lexi, admiring her Shrek Birthday cake. Isa is on the far right.

Last Sunday afternoon, I went to an ordinary birthday party. There were brightly colored yellow and orange balloons, a red and blue bouncy house and a whimsical Shrek cake in the most vibrant shade of green imaginable. The sun danced like it was still summer, accompanied by the music of children’s laughter, as the smoky scent of a barbecue floated through the September air.

The only thing not ordinary about this party was that the birthday girl had absolutely no hair and will soon be headed to Los Angeles to have a bone marrow transplant.

The birthday girl has cancer.

My daughter, Isa and I went to this ordinary birthday party for three year-old Lexi, who is battling Acute Myeloid Leukemia (AML). We met Lexi and her parents, Kat and Jonathan, through the Teddy Bear Cancer Foundation, which is a local Santa Barbara organization that helps families with their emotional and financial struggles while dealing with a child with cancer. Isa and Lexi hit it off right away, because they’re basically two peas in a pod: their mission in life is to be cute, say hysterically funny things, and make people laugh as much as possible.

A year ago, after being diagnosed, Lexi went through intense chemotherapy, and after six months, I was delighted to hear that she was in remission. Unfortunately, AML is somewhat more difficult to treat than ALL (which is what Isa had), and Lexi relapsed. She is now facing a bone marrow transplant, and will travel to the City of Hope Hospital for her transplant in October. The wonderful news is that a perfect bone marrow donor has been found for her. The bad news is the forthcoming isolation of a months-long battle that she and her parents are facing.

The day of Lexi’s party couldn’t have been more glorious: the lingering fog was finally chased away by the sun, just in time to make the surrounding green grass come to life with yellow dandelions popping out like polka dots.

Lexi was dressed up like a little glamor princess with black leggings and a lacy leopard-print frou-frou skirt. Her perfectly-shaped bald head shone in the sun like that of a miniature, wizened Buddha. She ran around entertaining people with her funny antics and adorable facial expressions. She was an ordinary happy child.

I brought my plate, loaded with delicious barbecued chicken and tri-tip, and sat down at a picnic table, surrounded by nurses, doctors, social workers,  clinic office managers—all folks whom I’ve met and become close with through Isa’s long journey with leukemia. We dug into our food, joking and teasing each other, like old friends do.

As I looked at all of their laughing faces, I felt of wave of pure gratitude pour through me. I thought, “How lucky am I to be in the midst of such incredible people?”

By looking at them, you wouldn’t think they are so special. On the outside, they’re the same as you and I: thick, thin, tall, short, old and young. They’re not perfect; sometimes they’re grouchy, admittedly controlling, and even sarcastic at times.

But on the inside, these people are extraordinary. They share something rare: a deep capacity to love and the ability to show that unconditional love to all patients, no matter what the child’s circumstances or background are.  These remarkable people take care of young cancer patients who are ailing and miserable, and always do it with a smile, a silly joke, or a gentle touch.

They deal with rude and irate parents who, so terrified of losing their child, lash out in anger.  They smile, bite their tongues and turn the other cheek. They put up with young patients who act out of control because they are in so much pain; kids who cry and scream and hit because they don’t want to be poked with another needle, or swallow any more nasty medicine. Sick children vomit, bleed and poop on them, and they clean it up without uttering a single complaint. They soothe all of us with hugs and kind words and tell us it’s going to be all right. And we believe them.

Sometimes their young patients die on them.  As painful as it must be, they show up at every funeral and cry because they know they’ve lost another angel.

Yet, God bless them, after all this, they still keep showing up for work every day.

And there they all were, enjoying an ordinary birthday party, after traveling miles away from their homes, on a Sunday—no less, to be with Lexi on her big day. They came to support Kat and Jonathan. They came to her party because they love Lexi—just like they love Isa.

Just like they love Jeffrey and Rosie and T.T. and every single one of their patients.

Attending a birthday party for one of your patients doesn’t seem like such a big deal, but really, it’s much more than that. It’s a sign to the patient’s family that they have a support system in place; that there is a group of people who love and care for them, and will do anything in their power to heal their child.

Isa and her nurses

Nurses Pam, Peralee and Nanci snuggling with Isa.

Recently a friend asked me, “Don’t you want to forget that Isa’s illness ever happened, and just move on? Why do you keep surrounding yourself with kids who have cancer?”

The answer I gave her is yes, I am moving on, but not in the way she thinks. I’m moving on because after this giant struggle, I’m finally growing into the person I was meant to be.  I’m moving on, but I’m also staying put. I’m not going to distance myself from the center of this terrible, horrible, life-altering, transcendental thing that is pediatric cancer, because I’m needed here. There is still so much more work to be done.

As human beings, we are all connected in a way that few of us completely understand, but childhood cancer somehow breaks down that wall of self-protection we build up throughout our lives. The vulnerability created by a child’s cancer diagnosis allows one to find that deep, human connection that we all strive to attain. It allows us to start knocking down that wall that’s been fortified by that viscous mortar of fear.

Nurse Peralee, Isa and Mommie.

Nurse Paralee, Isa and Mommy right before surgery.

I carry a powerful memory around in my heart from the  start of our cancer journey, when Isa had just been admitted to the hospital. I was at the lowest point I’d ever been in my life; when I was so afraid I could barely speak. Isa’s nurse that day saw the state I was in and came over and enveloped me in her arms. She held me for a long time.

“You know, Jessica,” she whispered in my ear, “I’ve seen many cases like Isa’s, and I just want you to know that she’s going to be just fine—I promise you.”

As a professional, a nurse is not supposed to make those kinds of promises, but I can tell you that those simple words were like a soothing balm to me. I realized she couldn’t really see the future and know for sure that Isa would be all right, but what she did know is that I needed to hear those words. That was a turning point for me. With just a few sentences, she was able to begin chipping away at my wall.

Because of these heroic people who all worked together to save my daughter’s life, I have the luxury to appreciate every moment spent with Isa, or the rest of my family and friends, for that matter, and cherish that time with all of my being. For this, I’m forever grateful.

These very same people are there for Lexi, too—giving her parents a sense of support and peace, if only for a short time on the afternoon of their daughter’s third birthday party.

It was just an ordinary birthday party, but what I saw was unrestrained grace. The kind of grace when nothing matters except to live in the moment, where love and joy are tossed around like floating dandelion blossoms, their plentiful seeds fanning out in the breeze, the potential for new possibilities not far away.

It’s fitting that today, Wednesday, September 21, 2011 is World Gratitude Day. Take a moment and tell someone how much you appreciate what they’ve done for you.

12 Responses to “An Ordinary Birthday Party”

  1. Kristin Schwartz September 21, 2011 at 9:49 pm #

    Thank you, Jessie, for your perspective, thoughts and posts! Such nuggets they are.

  2. Becky Green Aaronson September 22, 2011 at 1:06 am #

    Jessica, can you please somehow figure out how to put an attachment on each of your blog posts that administers Kleenex? This couldn’t have been more beautifully written. Bravo for making something abstract for most people feel concrete, as if they were part of the family. On World Gratitude Day I’m grateful that you figured out how to turn this horrifying experience into something extraordinary and share it with all of us so we can learn how to live deeper. Keep writing. Your work is powerful and needs to be shared!

    • Allegro non tanto September 22, 2011 at 5:27 am #

      Okay, Becky– People are going to think that I’m paying you for your comments! Thank you, my dear friend, for being my rock of support. In honor of World Gratitude Day, I send my deepest and warmest appreciation for your friendship and encouragement!

  3. ruth cavaletto September 22, 2011 at 1:44 am #

    Oh Jess, I am crying! Yes, we’d love to run from cancer like it was a burning building…but we can’t. I thank God for you and your family and for all that you do for others. God bless you.

  4. Pam September 23, 2011 at 3:16 am #

    Jessica, that was amazing! You know, it isnt all giving for us, we get soooo much love, friendship and grattitude from our families that it keeps us going… I love you and your family so much

    • Allegro non tanto September 23, 2011 at 3:48 am #

      And we love you so much! You made our experience bearable.

  5. Betty Pierskalla September 25, 2011 at 1:45 am #

    Jessie, each time you write, I am in awe. Lovely writing..Thank you for reminding us to smell the roses every moment of our life. Love Betty

  6. happykidshappymom September 28, 2011 at 5:53 am #

    I am so glad I came across your blog. What a powerful piece. You drew me in from word one and held my attention right through the end.

    Your writing is honest and true and heart-wrenching, yet heart-warming. I love this line, “I’m moving on, but I’m also staying put.”

    When my son was born, we had a cancer scare. A rapidly growing mole. He needed surgery, twice, and I was pregnant with our second child, and simply at a loss. There was nothing I, as his mother, could do. Yet you so adroitly put it into words — the power and healing of a kind word from a nurse. It’s not just the surgery or the teddy bears or the picnics — it’s the power of connection. And hope.

    Glad you stayed put, and glad you shared your story.

    • Allegro non tanto September 28, 2011 at 1:29 pm #

      Thank you so very much for your inspiring comments. Often, it is when we are most vulnerable in our lives that we finally understand how much we really need each other. As you well know, this is especially true when it involves our children!

  7. Melanie October 3, 2011 at 5:29 am #

    I’m grateful for your writing, your humor, your poignancy, and your grace.

  8. Allegro non tanto October 3, 2011 at 4:37 pm #

    I’m grateful for your wonderful comments and support, Melanie!

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