Driving the Camel: Adventures of a Child Life Specialist

~ debvilasconsult

 

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Prologue

 

I have always thought of life as a spiral. We grow whether we want to or not, but not necessarily in a linear fashion. We encounter our unresolved issues again and again, and yet we develop at each turn, so that our challenges never look exactly the same to us as they did before. Sometimes, we might not even recognize them for what they are, our repeated opportunities to be whole, healed despite all of our woundedness.

My cancer diagnosis in 2013 was one such turn. It caught me unaware, and yet it provided me with opportunities to revisit my life and stretch beyond my comfort zone in ways I never could have imagined.  A writing program for cancer patients provided me with the structure to revisit my career as a child life specialist, mining memories for wonderful stories that serve to inspire and connect. These stories of the children and families who molded me into the professional I am, weave together in this book with my past and present encounters with the medical environment, as both patient and healer. They show the tender shoots of joy that can exist in the rich soil of pain and suffering. It is my life story, and the fibers of this narrative are the tales of children and people who have taught me so much over the years. I am ever indebted to their presence in my life.

Getting a book published is no easy accomplishment. One in eight women will be diagnosed with breast cancer at some point in their lives. Inspiring stories of survival and life after cancer have a wide audience in not only diagnosed women, but their friends, family and caregivers. However, the market is saturated with cancer narratives, and even though my spin as a child life specialist makes my  story stand out from the rest. it doesn’t mean the publishing world will bite. Being somewhat impulsive, and wanting my story and the good word about Child Life  to reach as many folks as possible, I have decided to use my blog to start the ball rolling. I will be publishing segments of my book on a weekly basis, except for breaks every once in a while for other topics. It is far from a perfect book. I am no Jodi Picoult or Anne Lamott (two of my favorite authors). But I do have something to say that I hope will touch and inspire some people out there. If you are moved, please share my story with your loved ones.

The names of many characters have been changed to protect their privacy.

 

Part One  Getting Better

Chapter 1: Two for One Sale

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My yellow lab-pit bull mix yanked hard on the leash as she lunged at a squirrel scampering across the Bridle Path. I reeled her back in, admonishing her with an angry “Gracie!” as I fumbled to secure my bluetooth headset. It was hard enough to hook the stupid plastic loop  over my ear without her pulling my arm off.

Mark answered on the first ring.

“I’ve got bilateral breast cancer,” I blurted out. I knew the second the words came out of my mouth that I should have waited to share this information with Mark. Waited at least until I was face to face with him, instead of walking our dog in Central Park and blathering into my cellphone. My life partner was driving to work in midtown traffic, certainly not in a good space to hear such awful news.

“I’ll be right home,” he said.

I’d known it was a possibility of course. A call back from the radiologist for another look and eight core biopsies  had my imagination running down all kinds of twisting paths. But with each turn, I’d say to myself, “It’s probably nothing. No use worrying until I know for sure.” I’d shift my focus to something more positive, try to stay in the present. Some might call that denial, but I like to see it as coping.

I finished my routine 1.6 mile loop around the reservoir and met Mark back at home. We sat in the lobby of our townhouse on the window seat, the sunlight sifting through the thick glass onto our clasped hands. I can’t remember why we did that, why we sat there instead of going upstairs to the privacy of our apartment. Maybe Mark had to return to work right away, or thought he had to. But for the time being, he was there, and I held his hand to anchor myself.

“What does this mean?” he asked. “What stage is it? What happens now?”

Mark’s questions mirrored my own, and I had few if any answers. I knew that I had tumors in both breasts, but I had no idea what stage or how far it had spread. I’d never felt a lump or had any symptoms. My annual mammogram and ultrasound had picked up the tiny images. I did know one thing. I was going to get on the phone right away and get an appointment with the premier cancer hospital that stood not twenty-five blocks from our home.  I had worked there for ten years, at the beginning of my career, and there was no question in my mind that I would get the best care there.

Mark ran his hand repeatedly through the scant hair on the top of his head. “I can’t believe this. I am so sorry. This is not what I expected.”

“Me neither, and I don’t even know what to think. This doesn’t feel real yet. I don’t even feel sick.”

“Well,” he said. “We will take care of this together.”

“Do you really think we will be okay?” I asked.

“You mean as a couple?” He hesitated. “I guess this is either going to bring us closer together, or pull us apart.”

Those might not have been the most romantic or reassuring words, but they were truthful. I’d heard some horror stories about spouses leaving their loved one after a breast cancer diagnosis, and we weren’t even married in the traditional sense of the word. Not your average mid-life couple, we’d been together for twenty-nine years, but had never taken that final leap of faith. As the eldest child of holocaust survivors,  Mark had grown up in the long shadow cast by unspeakable crimes committed against his family during World War II. In his world, marriage and family did not translate into the fairy tale vision of a comforting hearth. His mother had suffered from severe Post Traumatic Stress Disorder for most of Mark’s life, and as her primary caretaker, he had developed a hearty aversion to anything and everything having to do with hospitals, doctors and caretaking. My cancer would surely test our relationship’s rough edges.

“I choose closer, I said.”

We hugged tightly before he left for work, and I went upstairs to begin the process of finding a surgeon. Two days later, we walked into the hospital where I had spent ten years caring for cancer patients. I’d moved on to teach in a graduate program in Child Life, advising and instructing students as they practiced their clinical skills in area hospitals. But 16 years ago, as a child life specialist, I had helped children and families navigate the pitted path of cancer diagnosis, treatment, survival and at times, death. Child life specialists are trained in child development, family systems, bereavement, medical education, play techniques and ethnocultural issues. Armed with a degree in early childhood special education, with a concentration in child life, I worked to ease the suffering of children facing illness and hospitalization. Using play, I helped them understand what was going on with their bodies, acting out diagnoses and procedures on dolls using real and pretend medical equipment. I prepared them for everything from routine blood draws to amputations.

Play is so many things in the hospital: it is the language of children, the way they express what words cannot. It is how they process and make sense of the frightening things they experience in the unfamiliar medical setting. It is their way to keep being kids in the face of suffering way beyond what any child should endure. I used toys to shift their focus during painful procedures. I ran playgroups in a sunny and inviting playroom, where children donned stethoscopes, surgical masks and rubber gloves, becoming doctors caring for cloth doll patients.  I brought them activities  at the bedside when they were too sick or weak to leave their beds. At play, the children could be the masters of their universe and take back some of the control and power usurped by the necessity of medical treatment.

But today it was my turn to be the patient. As I pushed my way through the revolving doors of the very hospital where I had provided solace and healing, it struck me that I was the one in need of these things. Who was going to take care of me, the caretaker?  

26 thoughts on “Driving the Camel: Adventures of a Child Life Specialist”

  3. Hi Deb. Love reading your blogs. I didn’t know about your cancer. So sorry to hear about it. You’ll be in my prayers along with our darling 4yr old granddaughter, Charlotte, who was diagnosed with a regressive form of autism last year. She’s slowly coming back to us, but it’s been a struggle. Good news is that she is an incredibly happy little girl which I understand is not usually the case. Our best to you and Jeff. We sold our big house and have downsized into the “city” (no laughing, please) of Campbell River. Love living in town. I look forward to reading your blog. hugs and puszi (kiss in Hungarian). Of course, Jeff would know that! xxxxsusie & michael p.s. We’re down to 4 cats! Duke went to doggy heaven. Stay Well, Susie Moscovich susanmoscovich@gmail.com Stay Well, Susie Moscovich susanmoscovich@gmail.com

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    1. Hi Susie!!
      So great to hear from you. My health is doing well now – what a roller coaster! Yes, autism is a tough one for everyone involved – but getting a diagnosis and good intervention can make a world of difference. So can having loving grandparents! No laughing at your downsizing and moving to the “city”. I get it. We are looking to downsize too. Edna adopted a beautiful baby boy 2 and half years ago, and I am an honorary auntie to Joaquin. You would love him. Edna is very happy. I am very happy that you follow my blog – my life is quite adventurous since my first adventure with Edna in your beautiful country. Let’s stay in touch. Love to you both from Jeff and me. xxoo

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  4. As your first child life student I learned so much from you in those halls where we met way to many kids. As a cls I learn from you daily. Reading this makes me so excited to read what’s to come.

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  7. Hi Deb – I do not think I have ever met you in person but have come to know you by your very kind, well thought out responses to others on the CLC Listserve. I have had my own journey of health issues and reading your first installment feels a true and honest portrayal of how many of those of us who have had careers rooted in forming caring relationships feel when we are on the other side of the heath care equation. Looking forward to reading more.
    Teresa Gambrell

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    1. Thank you for taking the time to write such supportive words, Teresa. I wish you health in the coming year, and I hope that my story brings about the same kind of “Oh Thank God I am not the only one!” feelings that I get when I read Anne Lamott’s “Help Thanks Wow!”

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  8. Deb, you write beautifully! Keep on keepin’ on! As a friend who goes back beyond your child life days in the hospital to when you were living a child’s (well, teenager’s) life, I welcome your book, blog, memoir in whatever form it may appear in!
    Love,
    John

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    1. Thank you John! You are in the book. I will never forget your kind presence during such a scary time. You rock. On the Bachelor reality show last night, they showed a guy in a kilt riding a unicycle and playing the bagpipes. I had to pause my screen to make sure it wasn’t you! HAHA!

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  9. Hi Deb,
    I’m so happy you are following your dream of publishing. I really enjoyed your first chapter and will read the rest. I’m sorry to hear about your cancer diagnosis. The feared became your reality. I love how you described life as a spiral round and round again learning and relearning lessons. Your work with children and families is difficult. Children can teach us so much and it must be so humbling seeing how they cope with their struggles with illness. I wish you good health and recovery every day. Keep writing.

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    1. Thank you Julie. You have been a wonderful supporter for many years. I am doing very well with my health now, and I am enjoying blessings that would never have come my way if not for the damn cancer! Weird how life works, huh? I hope you and your family are well. I will definitely keep writing!

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  10. Deb,

    We have journeyed in and out of eachother’s lives since those classroom days when we both studied child life and education together, but our connection to each other has always remained. Thank you for sharing your story…I am excitedly gathering questions and ideas in my mind…but I will wait until you publish a bit more because I know you have lots more to share!
    with admiration,
    Meghan

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    1. Thanks, Meghan! I agree that we are sisters along this path. I welcome your questions at any time. They will help me delve deep.

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  11. HI Deb, your first chapter is wonderful, absorbing, and educational for those unfamiliar with Child Life. I have been a CCLS for 23 years, and though I have never had the honor of meeting you, I am a regular reader of the Forum and have always been impressed with your insightful responses. I was already a fan, and I am sure I will love reading your blog. Continued good health to you and Happy New Year!

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    1. Dear Laura. Thank you for taking the time to respond with your initial feedback. It means a lot and helps give me courage to proceed. I wish you good health as well and a wonderful year.
      Deb

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  12. Loved reading this! I am cheering you on towards publishment! I think child life students would love to have a book like this on their reading lists to learn what CL is like from the eyes from a professional with honesty about what being a child life specialist is really like. In addition to the knowledge and expertise you provide and awareness for the field, your writing is captivating, descriptive, and leaves me wanting to read more. Nice work!
    Blessings,
    Samie Griffis Murray
    CCLS, CTRS

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    1. Thanks so much Samie! I will keep plugging away and keep my eye on the prize. If in your reading, any questions come up that will help me delve deeper, please post me. Blessings to you as well.
      Deb

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  13. You have hooked me Deb. I will be a devoted reader. I also have a connected story, about my mischievous, bright-eyed and challenging daughter Laura, who was diagnosed with Sertoli and Leydig cell tumour when she was four. Your talk in the sunshine took me back to those few minutes during which her diagnosis was explained to me, while she played at the table in front of the doc and myself….looking like a typical four year old, except for her distended belly. Watching her, speechless, and asking myself, “Can this be real? Can it be true? How will I do this?”

    I guess we all have a story inside us that seems almost impossible to tell. For me, it is too frightening to begin, and too complicated to give the justice it deserves. And like you I know that many others have written their own stories following similar paths.

    In our story, using all the experiences Laura and I had together, from that overwhelming terror to small triumphs helped me to know how I might be able to help others. In reverse, your experiences with children and families seem to have inspired you. Like puzzle pieces we humans all fit so perfectly together.

    I am so relieved to read that you are well. Laura’s story, almost 30 years ago, did not end with a long life. But her short life ended with dignity, deep respect and love.

    I look forward to reading your insights, and learning more from you about how child life and adult life connect. Thank you for writing.

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    1. Dearest Bindy,
      I am deeply moved by your comments. You are living proof that we survive the worst wounds we can encounter on earth and turn it into something that can serve others and lessen their pain. Your career is a testament and legacy to Laura and your love for her. Thank you for sharing that with me. I will do my best to be as honest and real as possible with my story. It is scary to put it out there, even more frightening to write. You know.
      All my best,
      Deb

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