Unsung Heroes Around the Globe

Young People of The Pandemic: Children’s Voices in Unprecedented Times

~ Deb Vilas ~ 1 Comment

Nancy S. Nelson, MS, ATR, had a vision one week into the 2020 COVID-19 pandemic. As she grappled with her own response to the surging COVID numbers and the lockdown in her home in NYC, she realized that children might have an even tougher time than adults coping with the pandemic. As an art therapist working in hospitals and private practice, Nancy had always known the importance of giving voice to children and youth through artistic expression. Now it felt like the right time to gather in the stories and words of children living through a vast disruption of their lives.

Not only did she gather over 125 submissions (over 40,000 words!) in four months — She also made leaders out of young people, hiring college students to gather, compile and assist in the editing work of this volume. From personal and professional contacts, Nancy established a core group of eleven 10-21 year-olds. Her request for participation in the book was a simple one.

Write two pieces in three months about what you experienced during the pandemic, and get two friends who live in other states to do the same.

The result was an incredible collection of voices from all over the country. Nancy holds deep admiration for the children and young people who were able to create even in the midst of so much loss and stress.

I realized that it was not mere writing talent that the contributors presented. It was their courage and honesty in being able to participate during such a tumultuous time in their lives.

Here is an except from the book by Maya Tuckman, age 14.

“All I Know

The world is changing drastically in ways I do not completely understand. Adults say we are living through a part of history, but we cannot predict what the future will bring, just like how I know who I am now but not who I will become. All I know-all that I can know-is the heat of my breath on my face under a cloth mask, fogging up my glasses; the whirring of my laptop computer in online classroom sessions, a sea of my classmates’ faces, in their homes, in hoodies and pajamas; the sound of my younger brother’s laughter and cheers, muffled from his bedroom, which he hardly leaves, as he plays video games with friends he can’t see; the gloves and mask that my Granny wears when cautiously visiting our house. I recognize that I am privileged to know these things. There are students whose educations are falling behind because of lack of access to both physical classrooms and digital resources. There are kids whose parents must leave the house everyday for work, potentially exposing themselves to the virus, but my parents work from home. There are the homeless, with no shelter to shield them, and those who live alone, with no one to keep them company. And then there are those who work on the front lines, in hospitals. Who are constantly overworked and overstressed. For me, some things have stayed the same. Like the smell of wet grass after the rain, the sound of the singing birds that flit about the trees. But I know other things won’t ever be the same. I know I will have to adapt and stay vigilant. So I hang on to the hope that the future will be brighter, even if things don’t look the same as they used to.”

And yet some things remained the same…………………

This book is a gift to all of us, the voices of those who will inherit the post-pandemic future. It is a call to all of us to do our best for these young people, to care for the earth and one another so that they can live into the possibilities we have only dreamt of.

To enter our give-away of an ECOPY of the book, please leave a comment on this blog, repost this blog in social media and tag #youngpeopeofthepandemic and @pediaplay.

Nancy S. Nelson

The Knot in Your Throat: Love, Death & Resurrection

~ Deb Vilas ~ 6 Comments

Thalia self portrait

Some of us are blessed with angel guides here on earth. I met mine, Thalia Georgiou, 22 years ago. At the tender and ancient age of 15, Thalia peered over a precipice and saw her possible demise.  A tumor snaked around Thalia’s carotid artery, threatening to cut off the blood supply to her brain or empty her life’s blood should a surgeon’s hand err.  After receiving a death sentence in her home country of Greece, she arrived in New York City to prove her doctors wrong. She came for chemo to shrink the tumor, surgery to remove it, and radiation to prevent its return. She came to survive the odds.

Flashback — 1998 —

I get to know Thalia’s mother before I make inroads with the teen. Her mother attends a parent respite group that I co-lead with a social worker. Thalia prefers the jewelry making classes in the adult recreation program to the children’s recreation area where I work. But one day, she rolls her IV pole into the sun-drenched playroom and asks me for some time — in private.

As I close the door to my tiny office, Thalia reaches into her knapsack and hands me a clear, plastic bag.  “Open it,” she encourages me. I obey her and find a long braid of hair encased within. “Touch it. Smell it. Feel it,” she says.  “Look at how it’s red on the top and brown underneath. I dyed it once. See all the beautiful split ends. When I had hair, I hated split ends. But they are so beautiful now. Sometimes I tell my mom, ‘Get my hair. I want to sleep with it.’ And I curl up with my hair on my pillow.” As I follow her instructions and bring the braid to my cheek, she watches me expectantly, a faux panther tattoo adorning one side of her naked scalp.

Thalia puts the hair carefully away. In its place, she brings out several photo album pages. Holding them on her lap, she slides her chair close to me and points. “This is my neighborhood taken from my best friend’s house. You can see my house from here. This is the roof. See the little park at the end of the street, and the trees? It’s such a pretty street.” She shows me photos of boys, describing them as both friends and boyfriends. Thalia confides in me that one of them looks like a boy here at the hospital. “You know I was thinking. I’m away from home and very sick. He’s here, very sick. Why not?”

There are pictures of her best friend, a lovely girl who “took some of my boyfriends, but that’s okay.” In one shot, she and Thalia are at the airport on the day that she left for New York City.  The friend is clearly distraught and tearful. I say, “I can almost imagine what it must be like seeing you off, not knowing if and when she’ll ever see you agin., feeling helpless to do anything for you.”

“Yeah, and how do you think I feel?!” she retorts. “A million miles away from home, alone, facing death.”

A small gash appears in my heart.  “Are you facing death?” I ask.

“Well, when I came here they said that without treatment, I’d be dead in four months. Then they said that with treatment … well, they said that even if my tumor responds to treatment that I only have 30% chance anyway.”

“Do your friends know this?”  I am wondering how she is coping, who she is leaning on.

“Well, I told them all that I was dying right away.” Thalia smiles gleefully. “And you should have seen all the attention I got!”

I note that amongst all of the pictures, I see none of her father. She explains that she has drawings of him. She hands me a sketch pad. “I’ll show you my dirty picture first.” She turns the pages to a pastel drawing of a graceful, naked woman. A pencil drawing of a woman in lingerie, a handcuff dangling from her finger. And two drawings of her father,  profiles of him relaxing with music, with one shoe off,  and another at the beach. sporting long, curly hair and a hairy pot-belly.

 

There is a self-portrait entitled Mirror Image, August 1997. A slightly wary version of Thalia in pencil, braid intact, tilts her head to the left,  her eyes trained to the right at her own image in the mirror. I don’t notice any trace of the long scar from her initial surgery that presently runs along the left side of her neck, and so I ask, “Were you ill yet when you drew this?”

It’s as if she knows what I am asking. “My head was turned — see — no scar.”

We pour over many more drawings, each with a story to tell. The museum walk continues when Thalia holds out a large, heavy ring. It is silver with a jade stone. “This was given to me by a friend of my mother’s a long time ago. When I think of this ring, I think about my whole life, the mistakes I’ve made, the things I’ve learned from them. You know, when I came to the hospital, I really changed. I am not the same person I was before. And three days after I got here, the ring broke. It was so strong that a train could run over it. But look, I can’t wear it anymore.”

The last thing she digs out of her bag is a handful of three Greek audio cassettes. I ask her if she wants me to borrow them and listen to them at home. “Not exactly,” she answers and pulls a cassette player out with a flourish. She cues up a song for me and plugs me in. She translates for me as the music sears my eardrums.

“It’s like this. When there is a knot in your throat, and the ceiling is spinning, you feel your tummy is going to be ripped open. This is love, and it is death and resurrection combined, and it goes on and on and on.”

That hour spent with Thalia so many years ago serves as a permanent beacon in my work and life. Her humor, honesty, wisdom, and bravery continue to inspire me. She reached out to me on FaceBook when she turned thirty, and we remembered and laughed together, musing about the horror of that year, and the hope.  She returned to Greece after treatment and now makes a living designing and creating jewelry, clothes and wedding dresses.  She developed the building blocks of these skills while in the hospital. She was the kid who used her radiation face mask as a display model for homemade earrings and necklaces. She could turn torture into beauty – and she still does.

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Thalia was married this past week to her soulmate at a castle in Italy. Here she is in the wedding dress that she created, in the life that she resurrected.

 

 

 

 

 

You can visit her Etsy shop and purchase her amazingly original designs at https://www.etsy.com/shop/THAGartDESIGN/items and follow her on FaceBook at https://m.facebook.com/ThagArtDesign/ and https://m.facebook.com/bloomingmusejewellery and her Instagram accounts are Thag.Art.Design and blooming_muse_jewellery. She models all of her works of art. Note the ring in the lower right-hand photo………

 

 

 

 

 

 

 

 

Undo Racism Every Day: Exclusive Interview with Children’s Author Anastasia Higginbotham

~ debvilasconsult ~ Leave a comment

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ANASTASIA HIGGINBOTHAM has written a courageous children’s book that seeks to dismantle institutionalized racism and white supremacy, one conversation and action at a time. Not My Idea: A Book About Whiteness  challenges adults to face their own discomfort and biases in order to validate the truths that children intuit. In this exclusive interview, Anastasia discusses her process of expanding her world view and becoming a disruptor of the very best kind.

Deb: “What prompted you to write this important book?”

My answer is a who and a what. Who inspired me were Black women: Noleca Anderson Radway, Brooklyn Free School Executive Director; Reverend angel Kyodo williams, Zen priest and co-author of Radical Dharma: Talking Race, Love, and Liberation; and Anyanwu Uwa, The Human Root Co-Founder and Executive Director. Noleca made me see white power in action and in myself; Rev. Angel dared me to connect with my deepest conditioning into whiteness and grow from a place of heartbreak; Anyanwu insisted I view myself as worthy. What inspired me is everything that the Black Lives Matter movement shows us about state-sanctioned murders of Black women, men, trans people and kids by police, plus no accountability for those crimes and new ones committed against the BLM activists themselves. Continue reading →

Kenya Child Life Program Spotlight Continues: Liz Kabuthi

~ debvilasconsult ~ 1 Comment

 

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Liz Kabuthi prepares children for surgery using a book of photos

Last week, I spotlighted the work of Child Life Specialist Jayne Kamau at the Sallie Test Pediatric Centre at Moi Teaching and Referral Hospital in Kenya. This sustainable Child Life program is one of a kind in East Africa. The Child Life staff and founder Morgan Livingstone are especially proud  this year to be working with Courtney Moreland of  Child Life United to offer child life practicums in Kenya.

This week, we hear from Liz Kabuthi, who I had the pleasure of meeting when she represented her country as a delegate at the Child Life Council International Summit on Pediatric Psychosocial Care in 2014. Her reflections on her child life journey and work are deeply moving, and give us a glimpse at how this profession influences and betters our lives even outside of the actual hospital work. Continue reading →

Sustainable Child Life Services in Kenya

~ debvilasconsult ~ 3 Comments

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The Sally Test Pediatric Centre in Kenya is proud to have the first sustainable child life program in East Africa. By sustainable, I mean that rather than mission-based services that come and go, it is staffed by citizens of Kenya who have obtained child life certification through the Association of Child Life Professionals (ACLP). Morgan Livingstone of Toronto, Canada, saw the need of such services and has worked tirelessly over the years to train and support the staff at Sally Test.

Over the next several blogs I am spotlighting the work of the child life specialists in Kenya. The team has faced many challenges in becoming child life specialists, and they are doing extraordinary work to humanize medical treatment for children and families in their care. A special thank you to Morgan Livingstone and the Sally Test Child Life team for taking the time to answer my interview questions and send along great photos.

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Jayne Kamau

 WHAT INSPIRED YOU TO BE A CHILD LIFE SPECIALIST?

I had worked in pediatrics unit as a social worker and was so comfortable and passionate with the children and their families. I had not heard about the Child Life profession until when Morgan Livingstone (CCLS Canada) came to Kenya for a one day workshop and introduced the concept of Child Life. An interest was triggered there and then and my mind and heart were in agreement that this profession though new to me was what I wanted to do. I started doing my own research about the profession and what qualification was needed to become a certified child life specialist.  So when the program was set up in our hospital and people were called for interview, I was among the very first to apply and now here I am. Continue reading →

Cooperative Play in Nature at Camp Klicek, Czech Republic

~ debvilasconsult ~ 1 Comment

the volunteers!

Photo credit: Jiří Královec

(Thanks to Jiří Královec for many of the photos! The best ones are his and noted beneath each photo. The rest are my amateur work.)

At Camp Klicek in the Czech Republic, a place where children and adults affected by illness and loss gather, activities run the gamut from a tiddlywinks tournament to bussing campers to a Shakespearean play.  The Accace Corporation provides tax advice to the foundation during the year, but they look forward to visiting the camp in person to have fun with the children and families each summer. This July, a fabulous group of volunteers  arrived with a day full of activities to engage us all. Their choices promoted creativity and cooperation amongst the campers, and nature threaded its way through the day’s activities. The volunteers brought their A game to the endeavor – with wonderful materials and activities – but more than anything, they brought their hearts. Continue reading →

Making Hospitals More Hospitable with The Tongue Depressor Challenge

~ debvilasconsult ~ 2 Comments

 

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My colleague, child life specialist Jon Luongo, is one of the most playful professionals that I have the pleasure of knowing. He taught me all about the “tongue depressor challenge”, which is described in detail in our co-authored chapter in the Handbook of Medical Play Therapy and Child Life.  Below is a brief introduction to the activity by Jon:

I encourage the doctors to tap into their imaginative playfulness to complete what I call the ‘tongue depressor challenge.’ The task is to co-construct a teaching tool alongside a patient to explain a part of the body, a particular medical condition, or piece of medical hardware. The challenge for doctor and patient is to use at least one tongue depressor in their design; like a single LEGO brick in a set of construction toys, the tongue depressor represents a humble piece of medical paraphernalia with limitless creative building potential.

 

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As with many great ideas, I borrowed Jon’s and tweaked it a bit. This past July, I brought the activity with me to the Klicek Foundation Summer Camp in Malejovice, Czech Republic. Camp directors Jiri and Marketa Královcovi graciously allowed me to lead the campers in a slight variation on Jon’s theme. Continue reading →

Children Ponder Good & Evil at Camp Klicek

~ debvilasconsult ~ Leave a comment

 

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We are all capable of good and evil.  People do bad things – sometimes they make mistakes that cause harm unwittingly. Sometimes they hurt others purposefully. Sometimes, doing nothing causes more pain for others than we can possibly imagine. At Camp Klicek in Malejovice, Czech Republic, founders Jiri and Marketa Královcovi make room for children to discuss and think about tough issues. They want kids in their care to be more than followers and simplistic thinkers, to see the humanity in everyone and the possibility that although conflict might be inevitable when a large group of people gather, people can make mistakes and still not be bad people.

And so, on one bright summer morning, following a hearty breakfast of porridge, bread, tomatoes, peppers, tea and hot carob with milk, the adults at camp led the children in an activity that reverberated throughout the week. The children gathered in small groups by age bracket. Some sat in the meadow, some under the mess tent, others in the courtyard. With adult guidance, they contemplated these questions:

  • What are bad or evils things?
  • Why do people do them?
  • What can be done about it?

The children took the assignment seriously, taking notes and including the voices of all. I moved amongst the groups, catching a snippet here and there from a kind translator. The children mentioned everything from the past and present atrocities of the world to the more mundane, including genocide, torture, terrorism and bullying on their lists. The youngest camper, when asked why people do bad things, answered, “Because they don’t love each other.”

At the end of the small group conversations, each group reported out to the whole camp, as we sat in the shade of the mess tent and processed together. The discussions were the scaffolding for the real fun. The next step of this activity involved each group choosing one of their examples, writing a play script to demonstrate the concept, and videotaping the enactment. The kids were deeply involved in this process throughout the day, and that night, they set up an outdoor theater in the courtyard, complete with a movie screen, the moon shining down upon us, and homemade apple strudel made from the summer apples, the Klicek version of popcorn. We smacked our lips and licked our fingers as we watched the completed movies, along with some movies created in past years.

My favorite play depicted two different families heading off to summer camp.  One family had no luggage or sleeping bags, just the clothes on their backs. The mother handed her children 10 crowns apiece and kissed them goodbye. The other family stood in front of a Mercedes Benz with their fancy clothes, belongings, cell phones, and the mother dolling out hundreds of crowns to each child. The scenario played out with the rich kids arriving at camp, immediately making fun of the poor kids, an act of kindness when one of them falls down and the other helps them up, and all of the kids ending up playing a game of football (soccer in the US) together.

A simple message, but one not lost on any of us. The campers did indeed come from a variety of backgrounds, and would probably not be interacting at school or in social circles outside of this camp environment. When I think of acts of evil, I think about how we create separation by dehumanizing people who we label as “other.” It is harder to keep these stereotypes and misconceptions in place when we wake, sing, break bread, play, and rest our heads together in the same teepee. I saw many acts of kindness each day between campers, whether it was an older child helping another child navigate steep steps, the hard work of the volunteers in our kitchen, or folks pitching in to help a teen search for her lost eyeglasses.

The thoughtful planning applied to activities that built community astounded me. Along with a mess kit and clothes, the camp packing list asked each child and adult to bring a glass jar with a lid to camp. The campers decorated these jars with their names and artwork, and hung them by ribbons on the branch of a low tree in the meadow behind the house. They left messages of appreciation in each jar, to adults and kids alike throughout the weeks. At the end of camp, they each took their jar with them, with strict instructions to hold off on opening it until they had arrived home. Marketa said that this is a concrete way to further the bonds created at camp. “Some of these children are isolated because of their illnesses. These jars and their notes are a lifeline for them throughout the year.”

My jar sits on my desk at home and reminds me of the generosity of spirit that children share so willingly. I can see why these campers return year after year to the meadow, the tree and the love.

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Camp Klicek: A Dose of Nature and the Universal Language of Play

~ debvilasconsult ~ 1 Comment

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I remember the endless swath of time that summer brought when I was a young child. Unstructured free time in nature, with neighborhood kids, and my family. I also played alone, exploring the back roads on my bike and the woods on foot. At the age of seven, I would be gone for hours, playing in brooks, creating forts under the shelter of giant boulders, climbing trees, making up stories in my head, and writing poetry.

These days, we are hard put to find children at play in this kind of open-ended, unsupervised milieu. Their play is planned, highly structured by adults, and often close-ended. When left to their own devices, kids often choose tablets, smart phones and video games as their go to. Child life specialists and hospital play specialists know the value of deep, open-ended play that encourages self-expression, exploration, self-regulation, social development, and problem solving. My friends at the Klicek Foundation in the Czech Republic provide these play opportunities at their summer camp for children and families affected by illness and loss. This year, they invited me to partake in a unique camp experience, and I immersed myself in the healing environment of Camp Klicek, which has been in operation since 1992.

 

Children after a long-term therapy (and sometimes even patients under treatment, if their health allows it) take part in the camp, as well as their friends, siblings, parents and pets. Several bereaved families come too.

Our camp activities began as an attempt to offer a two-week stay in beautiful natural surrounding also to those children who couldn’t participate in a “normal” summer camp. We have always tried to create a friendly, open-hearted and open-minded atmosphere in our camps, and we hope that the camp program gives its participants enough opportunities to have fun, to do some useful work, to talk about things that are important to them, to simply be with friends.

The camp games and plays (mostly non-competitive) follow the make-believe story of a man who decided to spend some time with nature and is thus confronted with new situations and thoughts and starts to meditate on his own life and on the civilization he lives in.

Children live in big Indian “tee-pee” tents which are able to accommodate up to six inhabitants and have a fireplace inside.

Since 2000, we organize our camps on a meadow just behind the respite hospice building at Malejovice – thanks to this, children whose condition requires special attention can also participate in the camp program, backed by the safe environment of our house.

 

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Indeed, I found myself amidst a remarkable mix of campers and staff, a combination of people and circumstances that is hard to imagine anywhere else. The youngest camper was seven years of age, the oldest, twenty. The children’s diagnoses differed significantly, as did their abilities, disabilities, ethnic and socio-economic backgrounds. There were children undergoing treatment, survivors of serious illness, siblings, friends, parents, and bereaved parents who had lost a child. The camp leaders, Jiri and Marketa, are purposeful in their choice to bring children and adults together where they might not otherwise interact in larger society. Watching connections form between the campers and staff of varied backgrounds was a blessing on so many levels.

The focus of our days involved living in nature, eating good, healthy food, exploring tough topics such as “What is evil?” and “How can we make the hospital experience more pleasant?”, and above all, building community. The virtual lack of technology at camp was so refreshing. I felt myself detoxing from my smartphone addiction as I wrapped myself in nature, old fashioned, simple play, and grand company.

Many friends have asked me what it was like for me to be surrounded by children who spoke Czech. Did I learn any Czech? How did I communicate with them? Well, I was immersed in a foreign language – of that there is no doubt. Most children spoke no more than a few words or phrases in English, and my Czech is abysmal. But the children understand more English than they speak, and play is a universal language.  The children’s welcoming of me was profound, inviting me into play, making me feel immediately part of the group. “Frisbee?” “Will you play?” “Come play football.” “Ping pong?” “Draw.” Once engaged in a game or project, there was much good will and laughter as we all tried our best to communicate.

I too, grew my Czech vocabulary one word and gesture at a time. I made it my goal over the week to learn everyone’s name – a challenging feat with names that were not familiar to me.  But with each name and greeting, I could see the rapport growing, the shy kids responding, the teens warming. Some of my favorite moments were when I would board the 1970’s retro bus for a field trip, and a kid would smile at me and pat the seat beside them to show they’d been saving it for me. Or that wonderful moment, when the quietest camper, one who spent much time alone and looked down or sideways rather than meeting your gaze, took my hand as I stepped off the bus and walked quietly with me to our destination.

It’s the small stuff, really.

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Children berry picking on a picnic in Czech countryside

 

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Klicek Foundation cofounder Marketa leading us in a trivia game in the camp’s mess tent, where we ate all of our meals.

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In my next several posts, I will dive deeper into some of the activities we did, the games we played, the lessons I learned.

 

Child Life Cooperative: Learning One Child At a Time

~ debvilasconsult ~ 2 Comments

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This week we welcome Allie Jones, the founder of the Child Life Cooperative- a website and podcast with the mission to advance the child life profession by learning through reflection, uniting for support and equipping students. Follow on Instagram or email at allie@childlifecooperative.com. I invited her to share a story about her work with you all.  Take it away, Allie

 

Deb may not remember this, but when I began my very first child life job I desperately reached out to her for help. The job I had been dreaming about turned out to be a job that I dreaded going to each day. I am pretty convinced that I developed a reputation on the commuter train as being “the girl that was always crying” before and after work in the city. 

Within a short week of starting a one-person child life program, I quickly got the sense that child life was an unwanted and misunderstood service. The rehabilitation hospital wanted a person who would organize fun activities for the therapists to do with the patients during therapy. Staffs’ expectation was that this person would then stand off to the side—no talking, no co-treating. In their minds, child life was a party planner and recreational therapist. And if I tried to advocate and educate staff of more appropriate ways to utilize child life, then I would be at risk of being fired. On my first day as I shared ideas of how to develop the child life program, a behavioral therapist looked at me square in the eyes and said, “just do what they tell you to do. Tread lightly, Allie, or else…”

I felt intimidated. I felt overwhelmed. I felt defeated. And, I felt utterly alone.

I decided to email Deb Vilas, someone who I had never met, but whose name continued to pop up in child life forums and articles. I wanted to see if she had any advice on how to proceed in such a discouraging job.

Deb encouraged me, providing alternative approaches I could try. She reminded me to gently educate and model for staff what child life truly was. She pointed me towards focusing on connecting with the patients personally and spurred me towards pressing onward with confidence and conviction.

Which I did. And to be honest, every day was a battle.

Not only were the expectations of party planning incredibly taxing and difficult to carry out as a one-person program, my patient population also proved to be a challenge. Many of my patients were from the inner city and had come to the rehabilitation hospital due to injuries related to gang violence.

One patient, we will call him “Devon”, is a young man I will never forget.

I met Devon one afternoon during rounds. He had just been admitted and I could hear him shouting and swearing down the hall.

I heard staff whisper, “he is 16 and was shot 6 times trying to steal a car. This will be fun, won’t it?”

I knocked. “Devon? I am Allie, my job is to—“

“Hey, you know what? I don’t care. Go f*** yourself.”

“Alrighty, then. Good talk. Until tomorrow, Devon.”

I didn’t feel it was the time to keep pressing at that moment with Devon. Instead, I tried to break down his walls by showing up at his room every. single. day. The kid was going to be here until further notice, so I figured I had some time to connect with him.

And so. Every. Single. Day. I kept at it.

Day 2.

“Hey, Devon. Allie, here.”

“Get out. Go f*** yourself.”

Day 3.

“Devon, I just got this new video game and—“

“Would you shut up? Leave!”

Fast forward to approximately 15 days later.

“Hey, Devon.”

“Allie, right? Word is you have some McDonald’s gift cards you give out to kids and can take them across the street after therapy is over.”

That was true. I actually received training in order to be able to take kids on outings.

Yet, hearing him actually initiate made me speechless at first.

“I like hot fudge sundaes,” Devon continued.

Finally, I responded, “I do, too. Let’s go get you one.”

From that day forward I sat in disbelief as I saw D’s walls slowly start to come down.We began a weekly ritual of going across the street to McDonald’s. And boy, it must have been a sight to watch us even try to get there! Devon was paralyzed from the neck down and was cruising in an extremely heavy and finicky power wheelchair. I was the lanky young-looking girl who would try to push said power wheelchair when it would malfunction!

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But we would make it. And we would sit and actually talk. Devon began to open up to me about the life he lived from foster home to foster home. He shared with me the loneliness and abandonment he faced that pushed him to join a gang, his only sense of “family” and “belonging”.

Devon came to our hospital as a raging, angry, bitter and violent teenager. Yet he transformed into a gentle, kind and respectful young man. He even befriended another patient, a young 5-year-old girl who had a diagnosis of selective mutism. Yet Devon swore that she would talk to him. Sometimes when Devon was upset, he would have the nurse cover his face with his blanket so he could shut out the world. And then, this little 5-year-old friend would wheel up to him, rip off his blanket and smile at him. They would talk for hours. A true picture of “the lion” and “the lamb”.

Though the child life job description never seemed to get better at that hospital and the staff continued to be resistant, no matter what, meeting Devon and the relationship that budded made all the tearful train rides worth it. I wouldn’t have changed a thing.

Choosing to zero in on each individual patient ended up giving my work so much meaning and fulfillment, even if it didn’t feel like it at the time and even if I was still expected to solely plan parties. Because those patients didn’t just need a Halloween party or a fun game to play during therapy, they needed a child life specialist.

So for all of you who may be in a job that you hate, or be longing for a different opportunity, take a minute to look around and try to find your “Devon”. It will be worth it.

Continue reading →