Lucky Hat: Touchstones, Rituals Keep Parents’ Hope Alive

The double doors are closed to Three North at Stanford Children’s Hospital, where my daughter Madison is supposed to get her chemotherapy. It’s our second session, Maddy is seven months old sitting patiently in her stroller as I come up to the thick double doors.

This is a very bad sign, these door being closed. Maybe Maddy shouldn’t get chemo today. These doors haven’t been closed before, something’s wrong.

The hair stands up on my arms, a tingling sensation crawls up my back, sits on my head like a hat. My partner Nancy is down stairs jumping through the legal piece of admissions. Our strategy is for one of us to sign in while the other runs upstairs to hopefully beat the rush and secure a private room. The double doors block our entry, erodes my conviction.

Since Maddy’s last chemotherapy, I’ve been looking for any excuse to stop the “treatment.” The idea of tearing my baby open to remove a tumor that lay inside her pelvis, then injecting her with poison designed to kill all her fast growing cells in hopes of curing her of cancer is a torture too horrible to imagine, but here we are doing it anyway because it’s all we got.

Suddenly, as if by divine intervention the doors part. A child is being wheeled out the doors on a gurney. In spite of myself, I push Madison’s stroller towards the open doors; if I can steal past them without the gurney or the doors touching us, we we will be destined to have a successful stay in the hospital. The chemotherapy will attack Maddy’s cancer cells, her heart will continue to beat, she will not die today.

Rushing past the gurney, trying not to look at the child on top of clean white sheets, I can’t help but wonder where his parents are. The side of the heavy door almost brushes against my arm but I lunge forward and escape its touch.  I arrive at the nurses station breathless, just in time to get a private room.

The nurses comment on Maddy’s outfit. She is wearing her electric pink onsey with matching baby gauchos and of course her lucky hat with the lavender flower pattern. This too is calculated. Madison cannot be without her lucky hat. If during our hour long drive through the hills of Santa Cruz to Stanford Children’s, we were to notice that we didn’t pack Madison’s lucky hat, we would turn the car around or have to call for back up.

We must always have Madison’s lucky hat with us, the floral cotton fabric is all that stands between us and a long drop off the edge of the world. We use her hat to fight off the cancer cells that the chemotherapy misses. The lucky hat helps to guide the hands of the surgeon as he resects the tumor that grows inside Maddy’s pelvis. The lucky hat hangs on Maddy’s IV pole, ensuring the nurses give Madison precisely the right dose of fluids and pain medication.

Maddy’s lucky hat is all powerful. It calms our nerves in the evening when Maddy’s fever spikes, reminds us to breath, walks us through the protocol for fever and neutropenia.  The lucky hat is just one of the many touch stones we have that help us navigate the horrifying world of pediatric cancer.

We parents hold on to our talismans with dear life. We keep them in our pockets, on our shelves, in the glove box of our cars. We tape rose quartz stones to our children’s feet before we hand them off to clinicians for the cutting and poisoning. They are our symbols of hope when hopelessness presses against fear.  We can’t not resort to the unproven when proven methods aren’t one hundred percent certain. So we pray to whomever is listening, we hold on to our talismans, drink our elixirs, participate in healing ceremonies, beat our drums, burn our sage and hope.

Nancy and I carry the special binder the nurse gave us after Maddy was diagnosed. We’ve already packed it full of discharge orders, information on primitive neuro ecto dermal tumors, protocols. Between random pages,there are pressed flowers, handwritten notes from friends, prayers and poetry.

I open the book, a hawk feather glides to the ground, reminding me of our walk through the forest; Maddy taking in nature from the comforts of her back pack. Hope fills my chest that we will again hike in the forest, feel the sand between our toes at the beach and maybe, if we’re lucky, be able to swim together in the ocean. I survive these times in the hospital because of the touchstones and rituals I’ve created.  Everyday that my child breathes, I walk the line between spirit and science.  I give everything I can to fill in Maddy’s missing percentage.

Madison’s results were in and the surgeon was going to meet with us. The thought of sharing an elevator with another parent or hopeful relative sent waves of nausea through my gut. I stomped on Maddy’s cancer cells with every step I took until I got down the stairs to the waiting area that was bursting with our friends and family.

The doctor came out with Maddy’s results; there was no visible sign tumor. In my mind, Maddy’s sixty percent survival chances increased because I took those stairs. You can bet I took the stairs every time Maddy’s results were in. I didn’t want to mess with fate.

We are back in the hospital for yet another chemotherapy.  Here in the hospital cafeteria, I scan the chafing dishes for the Mexican casserole I  eat during Madison’s chemo treatments. It’s become yet another ritual, a way of grounding myself in this sea of uncertainty. I’ve never thought there might be a day that they weren’t serving the casserole. I don’t know if I realized how much I’ve counted on this casserole being here.

Today, the Mexican casserole is no where to be found, and there is nothing that can serve as a substitute, not even a quesadilla!  My heart races. The tuna melt, spaghetti, minestrone all seem to be saying: “You’re screwed.”

All the things I’ve used to right myself along the path of pediatric cancer get jumbled up in my mind. The floor is starting to fall from under me. I am desperate to ask the chef. I imagine what that conversation would sound like and decide not to. Know one else has to know how crazy I’ve become.

I bet hospital cafeterias don’t even have chefs. Do I think I am at the Ritz or something? Uh, oh; the berating voice inside my head has escaped from its box. It’s a matter of seconds before it reeks havoc on my physche. The double-dipped bin of chocolate malt balls calls to me like the drug it is. I want to feel anything but this, panic is not my friend.

I resist the malt balls, which is no small feat. Sugar has been my soul mate since I can remember, but I’ve remained sugar-free since Maddy’s diagnosis.

Fumbling for the smooth lavender stone that rests inside my pocket, I remember to breathe. Thoughts of Maddy’s lucky hat, the three prayer chains she is on, the fact that she is a strong little spirit infuses me with hope. They are all rungs in the ladder I am building myself. I climb from the bottom of my fear and despair, up to the surface where the light is clear and crisp. I take the stairs two at a time back to Madison’s room.

Part of me still wants to smuggle Maddy out of her cold metal hospital crib, but we have nowhere to go. Deep down, I know this is our best chance at beating the cancer. I stroke the side of Maddy’s velvety face, follow the profile of her nose with the tip of my finger. Next chemo, I will bring the Greek evil eye our friends gave us and place it above the hospital room door; we can’t take any chances.

Ten years after Madison died, the lucky hat continues to rest on the corner of Maddy’s picture. In the photo, she is three months old, pushing herself up from the sheepskin rug, looking right through the camera, with those dark eyes, into our souls. Below her picture are two more photos, the similar poses, similar faces, of our two babies, Delaney and Hayden.

They never got to meet their sister, but she lives in their hearts and the stories we share.  Maddy’s paintbrush still lays in front of a picture of her painting pots. Her tiny hand holds the brush so precisely. Memory rests beneath the layers of thick dry paint. Every talisman has become a concrete example of her life, jarring our memory as the cloud of time passes over.

Lisa Buell

More Articles Written by Lisa

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 www.childrenshospice.org , 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. To contact Lisa email her at [email protected]

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  • A touching tribute to Maddy

    • jane driscoll says:

      Lisa’s writings keep teaching us all how to be real, how to be, how to go on, in spite of all the ways this beautiful life continues to confront and challenge us. We are all so blessed to experience her wisdom and depth as her words continue to infuse meaning and memory into the life of Maddy and the other young spirits who have traveled into the beyond long before we would have chosen to let them go.

    • Lisa says:

      Thank you for reading Sanjay.
      Blessings,
      Lisa

  • Cousin Chris says:

    Lisa, your writings are so moving. They bring to life the pain and joys you and Nancy experienced during Maddy’s short stay in this world.

  • Laura Davis says:

    wow. what a gripping, powerful description. thanks for including this on your site!

  • John Kettles says:

    That was a beautiful article. Maddy lives on in the hearts and memories of those people I am lucky enough to be around. May this give those of us who have experienced loss some comfort, and thank you Ms. Buell for writing this wonderful piece.

  • Peggy La Cerra says:

    What a beautifully moving piece! May it give to other parents who are enduring the unendurable the solace the comes from knowing that someone else has known this exquisite pain, and yet has gone on to help others. Bless you, Lisa, for this precious gift!

  • leela says:

    Lisa, these words entangle with memories and precious moments shared many moons ago. I want to sing out about the awesome beauty and power you, Nancy and your family have held honoring the precious life of Maddy… alive and vital forever.
    This writing is a profound sharing because it captivates the intensity of despair and hope. Thank you for gifting this away to others; I know it’s healing for you too. Touched again…. leela

    • Lisa says:

      Leela,
      You shared your gifts with us by facilitating Maddy’s service in a time when we had no idea how we were going to get through.
      It’s been such a long time, but finally feeling like I can articulate our experience and hopefully help other families in the process.

  • Julie Ulmer says:

    Happy Birthday, Maddy. You are carried around in so many hearts in so many ways.

    • Lisa says:

      Julie,
      You were such an important part of Maddy’s end of life; I am forever grateful to you for the frozen cabbage leaves and all of your care.

  • Carrie Birkhofer says:

    Your beautiful writing keeps Maddy right here with us. Thank you! I miss that sweet baby girl.

    • Lisa says:

      Carrie,
      Thank you for the trip to Disneyland, Maddy’s pot painting booth and the million other ways you helped us to create memories.

  • Art says:

    I so appreciate how you write in a way that makes it easy for me to feel and to imagine what it was like for you. Thank you for the realness you bring to your words.

    • Lisa says:

      Art,
      words cannot express how much your commitment and love held us through the most difficult times of Madison’s life. Thank you, I love you.

  • Ted Duffield says:

    I continue to be amazed by your ability to express your experience during such a difficult time in a way that allows us all to share in it and learn from it. Thanks.

  • Kim Powell says:

    Thank you Lisa for sharing Maddy with those who loved her deeply and those who never had the honor to meet this amazing spirit. Through your words, Maddy’s courage and inspirations reaches out and touches our soul. I am grateful and nourished.

    • Lisa says:

      Kim P,
      You are my favorite Baa Baa Waa Waa. Thanks for your interest, your friendship and sharing your passions with my living children.

  • Nancy Noma says:

    Lisa…your writing goes to my soul. You are able to capture your experiences and share them in such an intimate way. Sharing your writings with everyone is a gift to us all.

    • Lisa says:

      Auntie,
      I love you. Thanks for all your encouragement. The more we lift the veil on loss the less crazy we will feel…at least I hope that’s the case.

  • Deborah Dokken says:

    Dear Lisa,
    Another profoundly beautiful piece! Although I didn’t know you, Maddy, and Nancy then, your writing has given me sad but wonderful glimpses. I’m thinking of all of you today, including Delaney and Haydn.
    Deborah

    • Lisa says:

      Deborah,
      You continue to inspire me as a parent advocate, mother and friend. Thanks for setting such a great example.

  • Marcia Q. says:

    Thank you, Lisa, for sharing your insight and wisdom. Your writing helps me understand more about how we keep walking along in this strange, wonderful, painful, confusing world.

    • Lisa says:

      Marcia,
      most of the time I am just putting one foot in front of the other; sometimes, I get a chance to look at the view. Thanks for your friendship and support, it really means a lot.

  • Ron and Tony says:

    Thank you so much for sharing your love and pain. This is such a moving artile. It’s nice to know someone is in a position to help others that might be going through a similar situation.

    • Lisa says:

      I can’t believe it’s been over twelve years since Maddy died and I am finally able to articulate some of the story. Thanks so much for reading and holding our family in your heart.