It had been a warm summer, the breeze filled with the scent of sweet jasmine.  The bright magenta of the Bougainvillea bloomed with fierceness, its roots running deep, tapping into the water below.  It bloomed despite the lack of watering and it stood as a physical sign of our family’s battle with cancer: we continued to bloom.

It was early spring and Madison had just finished her last chemotherapy.  We were at the hospital getting what was supposed to be a series of scans over several years. This was our first; if all went well, we would be able to wait three months till the next and six months after that.

The scan was clear and we asked that her port be pulled from her chest; no more chemo, and no use for a port. We were done with treatment, we wanted to swim, let Maddy run around the beach naked.   She was two; she deserved her days in the sun.  We drove back over the hill, the concrete highways shifting into the lush mountains of Santa Cruz.  The air had a fresh earthy smell, full of potential and possibility.  Our child was cancer free!

Nancy unloaded the car; Maddy and I made our way into the house.  The red light of the answering machine flashed its scream.  We had always come home to several messages, but today there was only one. “Hello Lisa and Nancy, this is  Dr. Diangelo. After further evaluation of Madison’s CT scan… it showed the presence of a small tumor at the original site in the pelvis. Please call us here at the hospital.”

The ground shifted and we fell through. Our lives had come unraveled. The cancer was back.  We did call the hospital. We knew our options were limited to palliative care chemotherapy; there was no cure the second time around.

We filled our time with friends, trips to the beach, Disneyland. We had impromptu dance parties in the kitchen, Maddy swirling in her dress, swaying in people’s arms.  “Lights, pease,” she would say, and I worked the switch making it our own private disco. We were alive.

My mother had made Maddy a purple dance dress with sequined straps. A little piece of Velcro anchored it in the back, for easy on and off.  Madison never took it off. She danced, the breeze of summer filled her skirt, lifting her off the ground, and her spirit soared slightly above herself, practicing for the journey ahead.  The plum tree was full of fruit, and much of our time was spent outside, until the day Madison didn’t get up.  The sun continued to rise and fall, the mail was delivered, the bark of neighborhood dogs, the occasional car passing by our window; life was going on while our daughter was dying.

Nancy and I never talked much about Madison dying; we were too focused on life.  We’d have the rest of our lives to deal with death; we weren’t going to rob ourselves of the life we had left to wonder about how we could live without her.  But this particular day, Madison had fallen asleep in her car seat after her swim lesson.  Nancy sat in the driver’s seat, her hair still damp from the pool.  It always was the quiet times that were the scariest, the fear of what lay unsaid, the opportunity for the inevitable.  I didn’t want to talk about it, hadn’t wanted to think of a life without my daughter, but the topic hung thick in the summer air.  We sat in the car, our overgrown backyard, the long dry weeds flopping on top of themselves.

A cup of Madison’s liquid nutrition with an oral syringe sat between our two seats; it had been more and more difficult to get Maddy to take a syringe full of Pediasure.  It wasn’t a good sign.  The cup of liquid felt like it was sucking all the air out of the car; I was starting to have a panic attack.

I looked back at Maddy, her breath seemed a bit labored — or was it my imagination?  How many more swim lessons will she have?  Nancy turned to me and asked, “How many more lessons do you think we’ll have.”  It was a betrayal, how could she say these words out loud?  “Do you want to stay with her, or do you want me to” was my response.  We were not going to have this conversation.

At night, I could say I was just too tired. I could fall asleep with Maddy in my arms and not have my motherhood disturbed. I grabbed the cup of Pediasure and threw it out the window into the jungle that was now our back yard.  There were so many things that weren’t tended to; we could have made rope out of all the long dry weeds.

If I wove them together, Madison and I could escape, run to where there wasn’t cancer, a place where babies got to grow up. “I don’t want to talk about it, okay honey?”  Pediasure was dripping from my arm and some had even splashed my face. Should I wipe it off and start laughing, should I bury my face in Nancy’s shoulder?

I wanted to give her the script of the right thing to say.  I imagined her comforting me, supportive words coming out her mouth with just the right tone and texture.  Why should I get all the understanding; Nancy’s hurting too. I imagined looking into her eyes, swimming deep into the backs of them, floating in the safety of her pupils.  How long had it been since we really saw one another? A week, a month…never?

Nancy’s eyes were greener than brown, or was it the other way around?  I could say they were Hazel, and only she and I would secretly hold the truth between us, that I didn’t know any more.  Where was my soft place to fall?  Had Nancy ever been this for me? Why am I thinking of this now, in this moment?  What does it all matter anyway?

I sat there, my breathing shallow, wishing it all away.  I remembered the person I was, the self-confident woman, the athlete. My outspokenness was legendary, and now I had no words; there were no words for this kind of fear, pain and despair.  My courage had been removed with a scalpel. The chemotherapy had taken my self assuredness and left me afraid. The course of therapy held me paralyzed into a perfect smile as my silent scream shot through the Bougainvillea, and danced across the blue cloudless sky.  A little voice came from the back seat, “Maddy Buell, yes!”  We shifted around to face her.

“Good talking honey, that’s right, Maddy Buell, and who’s that….”

“Mama.”

“Yes, great job, and what’s that?”

“Tree,” she said, as the Pediasure continued to drip down my arm.

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Lisa Buell

Lisa Buell is a writer, activist, mother of three and parent of two. She works with Children’s Hospice and Palliative Care Coalition, Partnership for Parents, as a parent advocate bringing a parent’s perspective to the development of palliative care programs and policies. A published author, Lisa is writing her first book, entitled “Call Button,” a collection of essays about the continuation of life in the face of treatment, navigating the waters of grief, celebrating communities and the clinicians who care.

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