What Am I Good At? Building Self Esteem through Play at Camp Klicek in the Czech Republic

Time to Explore:

The long days of summer, with the sun rising at 6:30 AM and setting close to 10:00 PM, lend themselves to unhurried, lengthy swatches of time. These hours can hold many opportunities for children and adults to engage in unfamiliar activities and discover new skills. Time for free play and exploration is a commodity during our workaday, technology-filled lives, but Camp Klicek in Malejovice, Czech Republic provides exactly this to children and families affected by illness and loss.

In the photo above, two seven-year-old boys get their hands on a saw, as they break down a tree branch in preparation for the campfire that all the campers will enjoy. Besides being fun, the boys are building their muscles and coordination, getting some great proprioceptive feedback, practicing cooperation and self regulation, not to mention problem solving. Their self esteem gets a healthy boost as they accomplish something new and contribute the the camp community. These are some of the attributes of spontaneous play that adults should take note of as we consider the developmental, social and emotional needs of all children

Structured Games

Sometimes structured games can lend themselves to learning through play that is so much fun that kids forget that they are learning. On this day, the campers were divided into three teams, and each team had four tasks to compete. They had to find a way to measure a liter of liquid, a kilo of sand, the length of a meter, and the span of a minute, all without the use of measuring devices. The camp was alive with children gathering sticks, pouring water, scooping sand into sacks and counting out loud and in their heads, as the teams competed to see who could get the closest to the actual measurement.

Group Play

On another day, volunteers from the Accace Corporation brought a day of activities to the campers. In the morning, they set up tables in the summer garden and mess tent, including paper arts and crafts, flower pot decorating, a drink mixing table with great recipes for virgin mojitos, margaritas and pina coladas, and a beauty salon station with face, body, and nail painting. Kids explored their artistic sides and wore their art with pride.

In the afternoon, the company volunteers set up an activity course in the forest, replicating what is entailed in working for a big company. My favorite station was the accounting department, where the employee had to take a fist-full of invoices and chase after the client to whack them with the papers to make them pay their bills!

And the other one I loved was a station where kids were taught the art of communication. They were told that communication is the lynchpin of success, and in order to practice communication skills, they had to stand on one side of an easel and describe a picture to their coworker on the other side, who had to paint of draw what that person was describing. It was a tough but very fun challenge for the kids.

In yet another station, the children ran through the forrest balancing cups of coffee they had made for their boss, trying to get to their boss’s office to sign power of attorney documents without spilling a drop.

Sharing Skills With Others

Many of the campers had their own skills to share and teach. Here are several of them, starting with an 18-year-old who made up a rap song on the spot.

One 14-year-old camper had a lot of skills, including bugle playing, fire breathing (So sad I didn’t get that on film!!), and archery. Here he is teaching another teen how to shoot a bow and arrow.

This young magician taught us all how to get a 100 Crown bill out from under a beer bottle without touching the money or the beer.

This artist created a virtual masterpiece depicting several scenes on one ceramic pot.

And even the youngest of the campers showed their talents. Whether it was my lunch-mate practicing his English, or a shy kid joining in on a new ly introduced American game of “Happy Salmon”, the kids never ceased to amaze me with their willingness to take risks, learn and share. I watched with admiration as this 6-year-old moved with the utmost patience and precision in a game of pick up sticks.

Nothing raises kids up to their potential the way play does. You can see the pride glowing as their self esteem grows by the second. And I feel so blessed to witness and participate in this play at Camp Klicek! Happy Summer!

Klicek Hospice Summer Camp: Kinderspiel Czech Style


drawing by Markéta Královcová

A Diverse Community

My second stint as a volunteer at Camp Klicek in Malejovice, Czech Republic was as joyful and soul-filling as my time there last year.  The camp is special in many ways, but there are several unique facets that really stand out in my mind.  First, campers are encouraged to invite family and friends, and most campers have at least one sibling, parent, cousin or grandparent accompanying them. Most participants have been affected by an illness, developmental delay, death of a family member, poverty, racism, or incarceration. The campers range in age from one year to twenty-one (higher if you count the adults!) and come from such diverse backgrounds and situations that they form a very unlikely community of intersectionality.  This two-week summer camp brings together these widely varied individuals to partake in an environment steeped in nature, nutrition, community, and simplicity.

The Context of Nature

Children sleep in towering teepees and smaller tents constructed in a field behind the main house, a 100-year-old converted schoolhouse equipped with wheelchair access, hospital beds, and three working kitchens. The field harbors an orchard and several gardens that produce fruit and vegetables for meals and flowers that adorn each table in the mess tent. At breakfast, preserves made from this year’s crop of strawberries smother daily fresh bread from the bakery, accompanying homemade porridge with gingerbread crumble. Every meal is taken outside, and all campers gather several times a day for large group activities.

Real Play

The lengthy summer days, temperate climate, and loose structure of the day leave ample opportunity for the simple kinds of play that seem to be disappearing in today’s wave of technology. Campers are asked to turn in their cellphones each day, and are encouraged to find what they enjoy and make the most of each day. Whenever I offered to help out in the kitchen, I was instead encouraged to “Go play with the children. That is a better use of your time.” And so I too was free to enjoy the spontaneous kind of play that forms the building blocks of childhood.

Here are some examples:

Hand Games

I taught the kids how to play “Butcher Make the Meat Red”, a hand game where one player attempts to slap his opponent’s hands while the other player evades pain. They taught me how to play a finger counting game. Thumb wrestling and criss cross (patty cake) needed no translation.

Rough & Tumble Play

Kids don’t always get a chance to engage in gross motor rough housing play. Here they had plenty of opportunities for this without adult interference.

Feats of endurance:

Kids spontaneously tested their own strength and cheered one another on. Football (Soccer in America) and a Camp Klicek version of baseball (involving knocking over cans and running bases) are also popular.

Loose Parts Play

The children chose names for their teams (there were three teams for chores and competitions), and then found loose parts in nature to depict their team name. The foundation has an ocean theme running through it, which is hard to explain for a land-locked country. But the teams were encouraged to include this theme of being at sea in their chosen names. Here are the results.

“Rats from Below the Deck”

Mussel and Green Psychodogs

Nails on the Sea”

Forrests and Fields

There were many opportunities to walk and play in the neighboring forrest and fields, gathering campfire wood, building fairy houses, and searching for buried treasure.

Imaginative Play

Last but not least, the younger children explored toys, dressed up in princess garb, and played with music.

This smörgåsbord of play is a perfect real world representation of the lovely parting gift I received from Jiri and Marketa Kralovec upon my last day at camp: a print of Pieter Bruegel’s 16th century painting of Kinderspiele.

I came home filled to the brim with fresh air, incredible food, and most of all, play and excellent company. Thank you Camp Klicek!

Stay tuned for my next blog, where I continue to share camp photos and stories.

The Knot in Your Throat: Love, Death & Resurrection

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.

thalia mask

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………












“Doctors have come from distant cities just to see me. Stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders of God’s own creation. And as far as they see they can offer no explanation… Oh I believe Fate smiled at Destiny. Laughed as she came to my cradle. Know this child will be able. Laughed as my body she lifted. Know this child will be gifted. With love, with patience and with faith she’ll make her way.”

–Natalie Merchant

I am not sure of when it was that I first heard Natalie Merchant’s song “Wonder”, but each time I do hear it, it resonates deeply with me and I feel incredibly witnessed and uplifted.

In the early morning hours of my birth, the doctor gravely informed my parents that he had little hope for my survival. He actually discouraged my mother from naming me, in a misguided effort to help her accept the inevitable. I was born with a rare genetic skin disorder, Congenital Ichthyosiform Erythroderma (CIE). I made my first appearance on earth encased in a collodian membrane  – a tight outer layer resembling plastic wrap, looking as my father loves to say, like a “shiny red sausage”. The doctors didn’t know what to make of me. They had no name for my symptoms, no explanation for my appearance. But their worry about my skin’s ability to provide a sufficiently protective barrier led them to believe that I would not survive.


I spent one month alone in the hospital, as doctors searched high and low for a diagnosis. Parental visits were discouraged. They finally suggested that my parents seek an answer at a larger children’s hospital. My parents held me for the very first time in the back seat of the car, as their friends drove them the hour and a half to New York City. Another month passed before I was discharged, still without a diagnosis. The hospital cautioned my parents that the road ahead would be a rough one, and they highly recommended that my family employ a full-time nurse to see to my complicated needs. My mother balked at this. “I’m her mother,” she said. “I am the only nurse she needs.”


My diagnosis came soon after, when Dr. Charles Sheard, a dermatologist in Stamford, CT, observed that I appeared to have the same symptoms as one other patient he had read about in some obscure medical journal. Dr. Sheard took me on as a regular patient, seeing me once a week for the first year of my life, then monthly, and as I continued to grow and develop, annually throughout my teen years. He never charged my parents a dime. Although I suffered some complications and hospitalizations during childhood, my health stabilized and I have grown to live a full and rich life with few limitations. When dermatologists examine me, they remark at the seemingly mild case of ichthyosis I have, compared to other patients whose condition hugely impacted their development, mobility, and appearance.


I did, however, struggle with post-hospital trauma in the form of sleep disturbances, sensory issues, and severe separation anxiety. Then came the bullying in school. But I had several resilience factors at play in my life. I grew up listening to my parents tell me stories of my early health challenges, referring to me as a survivor and a fighter. My mother too was a fighter and fierce advocate for my medical and emotional needs throughout my growing years.  It should come as no surprise that I became a child life specialist as an adult, advocating for the emotional and developmental needs of children facing illness in hospitals and their communities.  Natalie Merchant’s song “Wonder” reminds me of the miracle of my birth and life, how I surprised the naysayers, and how my mother saw the possibilities and joy in my birth and life more than the dire prognosis.
To learn more about the many forms of icthyosis, check out the Foundation for Icthyosis and Related Skin Types.

The Children of Chanov and Lidice


During my recent travels to the Czech Republic, I had the opportunity to learn about two populations that I knew little or nothing about: the children of Lidice and the children of Chanov. Our hosts, Jiri & Marketa Kralovec of the Klicek Foundation, arranged a day long outing to honor one group and to serve the other.

A few days prior, Marketa had given me a book

that told the story of the massacre of an entire village during World War II. It is a chilling and heartbreaking narrative of the fates of 82 children between the ages of 1 to 16. In response to the assassination of Reich Protector Reinhard Heydrich in 1942, the Nazis sought retribution by shooting all the men of Lidice (aged 15 and up), transporting the women to concentration camps, and murdering the children en mass by gassing them in a truck. Not even the dead were spared, their graves looted along with everyone’s homes and businesses, before the Nazis burned everything to the ground.

We arrived at the historical site of Lidice, the midday sun unrelenting in the early Spring heatwave. We made our way over rolling green lawns to the memorial (Pamatnik Lidice) that overlooks the expanse of land where the village once lay. No book could have prepared me for the impact of the life-sized collection of sculptures embodying the 82 murdered children. I stood before them and wept for these children and all those murdered during the Holocaust. I wept at the cruelty of human beings. I wept for the legacy that lives on in the DNA of my life partner, his parents having survived Auschwitz at the tender ages of 12 and 15. They could have been these children. In some ways, they were.

The artist Marie Uchytilová created the memorial in the 1990’s, but died before she was able to complete the sculptures. Jiri described paying a visit to their friend, Marie, during her selfless work. The haunting presence of the children’s likenesses in the fading light cast shadows as they drank tea and chatted late into the night. “She informed us that she often spoke to the children as she crafted their images,” Jiri said. “And she tried to find out everything she could about each one, so that she could truly fashion their souls.”




We left the children and walked in silence back to the van.  We traveled on, stopping for a tour of the pediatric ward of a hospital before moving on to the last leg of our journey. We had little idea of what awaited us as we drove north west to Most in Bohemia and the Chanov housing estate. Of course Marketa had told us about our upcoming visit. Borivoj, (all names of patients and children have been changed to protect their privacy) a brain cancer survivor, had attended the Klicek  summer camp as an ill teen. Marketa and Jiri stayed in touch with Borivoj and his family, visiting them occasionally over the years. On one such visit, Marketa took notice of the many children of the neighborhood, hanging out with seemingly little to do. She was moved by their plight, and vowed to return to set up an afternoon of play on a monthly basis.

“No one goes there,” she said as she prepared food for our day’s journey. “It is the poorest and most dangerous part of the Czech Republic. If people do go there, it is to make themselves feel better, handing out candy and toys, and getting back in their cars, not really just being with the children or connecting with them.” As Marketa described the situation, I thought of the untouchables in India.

According to Wikipedia, “[t]he Chánov housing is these days perceived by many Czechs as among the worst examples of ghettoization of the Czech Romany population and has been described as “the housing estate of horror”, “a hygienic time bomb”, “a black stain” and the “Czech Bronx”. The Roma tenants of Chanov fare dreadfully in today’s Czech Republic, relegated to institutionalized country-wide discrimination, racism, marginalization and poverty. The Roma are largely unemployed.  94% of the people have only a primary education, if that.  38% of the population are children under the age of 15. 

Word of our coming had spread, and over 60 of these children and their parents greeted us as our van pulled up in front of the Chanov school, skirted by an astroturf football field. The children gathered eagerly and Marketa divided them into two groups, challenging them to a contest.

“All right!” she coached them. “Let’s see who has better English, the boys or the girls!” I was the designated judge, and the girls surrounded me eagerly. “My name is Anuska,” piped up one girl sporting polka dot shorts and a bright pink t-shirt emblazoned with the head of a blue giraffe. “What is your name?”  “What color are your eyes?” “One, two three…”  Other girls chimed in, counting up to fifteen with pride. “How old are you?” asked another. Then, they all started to sing, “Head and shoulders, knees and toes, knees and toes!”

The boys jockeyed for attention, keen to tease and one up one another in the process. “My name is…” began one, and several interrupted to shout him down with their own introductions. They jabbed and pushed one another, joking and laughing and even yanking down one boy’s shorts as they showed off their skills. Definitely a different energy than the girls!

Capitalizing on the bit if English they knew (way more than my Czech, I might add!)  I asked the children to show me some of their games, awkwardly pantomiming patty cake. After humoring me by joining in, the girls broke into a much more  intricate version, clapping their hands in a fast paced rhythm that left me in the dust. Then the kids introduced me to the game Baba (If I am spelling that right). Figuring out the rules was easy, as they ran up to me, tapped me none to gently on the back, yelled “Baba!” with great enthusiasm, and ran away from me. Oh, the Czech version of tag – I get it! In fact, there are many games that translate across cultures.

The children eventually broke off into smaller groups, some to draw on the parking lot with colored chalk that Marketa had brought, and some to start up a game of soccer. The play specialist volunteers set up a makeshift hair salon, brushing the girls’ hair and styling both boys and girls alike using many mini rubber bands.

Several children showed us their dancing skills, and my colleague, Marifer Busqueta from Mexico City, engaged them in a few Latina moves.


One group of boys made their way to a large sand pit at the edge of the football field. They dragged over two box springs, the rusty inner workings of mattresses, piling them up to act as a springboard for their acrobatics. And so the real show of the day began. The boys, singly and in pairs, ran pell mell at the springs and leapt upon them, catapulting themselves into the air in arching flips and tumbles. They showed no fear, but my heart beat fast and hard in my chest as they flew past me, landing triumphantly in the sand. I couldn’t help but think of the framed photograph hanging in my bedroom back home of children in a 1980’s South Bronx  performing similar feats of daring.




Towards the end of the day, Jiri Jr. corralled the kids into the cement bleachers to pose for a group photo.  There was homemade gingerbread for all, and one child split her treat in half to share with Marifer, before enjoying the sliver left over for her. We spent 4 hours altogether with the kids, before collapsing exhausted into the van and heading home to the comforts of Malejovice. Hot running water and electricity would greet us, although no such luxury awaited the children of Chanov. The joy of a day of cross-cultural play with wonderful kids lay juxtaposed in my mind with thoughts of children in historical and current contexts. When hate and racism allow us marginalize, ghettoize, and incarcerate a segment of any population, keeping them from sharing in the most basic of human rights (employment, access to medical care, decent living conditions and education), how far are we from enacting the fate of the children of Lidice upon our own children?

Medical Play: Modeling Empathy for your Child


Colleague and friend, Teresa Schoell, is a child life specialist in upstate New York. She is featured in  “That’s Child Life!” , a video published by the Child  Life Council. She is also, first and foremost, a mother to Malcolm. She posted this story on FaceBook today, and with her permission (and Malcolm’s), I wanted to share it with all of you.

I just finished performing surgery on one of Malcolm’s beloved stuffies (a gift from the dear Justinn Walker). Apparently, JC the Lobster was quite anxious about the procedure, hiding in Malcolm’s arms while I threaded my needle.

“I’m scared it’s going to hurt,” came JC’s voice (with a marked similarity to Malcolm’s falsetto).

Then I heard Malcolm’s reassuring voice “Don’t worry, JC, we’ll give you sleep medicine so you don’t feel anything. Would a hug help you feel brave?”

A few hugs and and some invisible anesthesia later, the lobster was open on my table (prepped and draped in the usual sterile fashion….which is to say, laying on a couch cushion on my lap) Today’s procedure was to repair the distal fracture to the bendy wire in the patient’s left antenna, which supports movement and pose-ability.

Under general anesthesia I opened and peeled back the fabric, revealing the damaged wire. The sharp wire bits were realigned and repaired use med-surg duct tape, reinserted into the fabric, and sealed with a running subcuticular suture (sewed on the inside for a near-invisible scar). Procedure complete in 15 minutes with minimal stuffing loss. Patient resting comfortably.


I commend how Teresa invested in Malcolm’s powers of imagination and attachment by treating JC the Lobster with the respect one would give a live patient. When parents take their child’s attachments and emotional needs seriously, they model empathy, the glue that holds our society together.


The Child Life Maker Movement: Loose Parts Impacting Healthcare


What happens when you cross a child life specialist with loose parts? Creativity, to say the very least. Specialists have been using loose parts to make the medical world more accessible and friendly for children and families since the beginning of our profession. They combine medical supplies (tubing, gauze, rubber gloves) and household items (paper towel rolls, pipe cleaners, paper clips, felt) to create everything from customized dolls that reflect a child’s medical situation, to a glove-o-phone to help children pass breathing tests. Simple and complex inventions have aided children in making meaning out of their medical experiences.



Now, with the Maker Movement, child life specialists have invaluable opportunities to join brains with other disciplines seeking to improve patient experience and speed recovery.   Bank Street College Child Life alumnae Jon Luongo and Kelly Segar, and children’s book author Anastasia Higginbotham rolled up their sleeves to join the Maker Faire at The New York Hall of Science this past weekend. They joined nurses, doctors, medical technicians and fellow inventors in the Health Maker tent on this brisk and cloudy autumn day.

As children and caregivers meandered through the exhibits, .the specialists shared information about how to make pediatric hospital stays more manageable, less stressful, and more fun. As Jon demonstrated the glove-o-phone, kids jumped at the unexpectedly loud honk it made.



Exclamations of “Ewww gross!” were followed by attentive curiosity as Jon explained the purpose of the vial of “blood soup” on the table.



Families spontaneously grabbed colorful neon strings and engaged in string play, a simple game that crosses generations, culture and language around the world.


Kelly demonstrated her Barium Bear, “Barry”, developed to support children receiving barium enemas and scans. She used simple circuitry that she learned from a Hospital Play Specialist in Japan to illuminate the pretend scan.



At nearby tables, radiation techs and doctors showcased how legos can be used to build mini MRI, CT-Scan, and linear accelerator machines. When they are doll sized, they aren’t quite so scary. And when children aren’t as frightened, doctors can administer less anesthesia to their tiny patients, a win-win for everyone.


Did you know that a A three-D printer can be used to make prosthetic hands for children who have lost theirs to birth defects, disease or accidents? And for a fraction of the cost of traditional prosthetics. And they aren’t just your run of the mill hands either. They are superhero hands! As I observed a three-D printer humming away at one exhibit, I wondered about what kind of mind came up with the idea of this machine. And then who had the amazing idea about the possible application of it in the medical world?


Wonderful ideas start somewhere, and when we encourage children to explore and create, even in the medical environment, we are investing in their healing and in their future. The Maker Faire was an extraordinary celebration of the possibilities of the human brain. From low-tech to high-tech, creative minds came together in the Health Lab tent to hack medical problems and make the healing process more fun. If you want to get your maker on, I encourage you to find maker spaces near you Challenge your child life staff to a loose parts contest at the next departmental meeting. Jumpstart a health maker group in your hospital and invite staff from throughout the institution to collaborate. And don’t forget your best assets. Find every opportunity to include children in creative problem solving with loose parts. In and out of the healthcare field, children and adults all benefit when we connect with what Eleanor Duckworth called “wonderful ideas.”













Driving the Camel: Installment #15


Heading South

We arrived at the beach house, where Marianne and her family had returned for the weekend. We gathered around the kitchen table telling stories of our adventures, but I already felt removed from the day’s events.  My thoughts turned inward as I anticipated saying goodbye to Garth. I knew that when the iced tea was gone, that Garth would be driving back to Clair and his farm, and that I may never see him again.

When the time came, I dragged my feet as I walked him out to his car.

“You know I wouldn’t have taken just anyone caving,” Garth said.

“Yeah, you said you hadn’t done it in a long time, What made you say yes to me?”

“It was just something about your voice,” he answered. “I liked your voice and your spirit.”

He surprised me with a hug so hard that I thought I might break in two.

As he drove off down the beach road, I thought about the many types of love we experience, if we are lucky, throughout our lives. The depth of feelings generated by  the unexpected connection forged with Garth was not unlike some of the strong emotional currents I have often felt with children passing through my care in hospitals. I’ve often wondered if it’s just me. Do I fall in love a thousand times too easily? Or do others feel the pangs and elation that I do when my spirit resonates with someone else’s, stranger or friend, child or adult?

One thing for sure, it was not easy to part with such a wonderful new friend and to leave the beauty and peace of Lang’s Beach.  But leave I did. Matt and his family awaited me in Christchurch and Naomi waited in Kaikoura. Naomi had been another guide on our kayaking trip. She’d since visited us in New York, and now it was time to check out her stomping grounds on the South Island. Then, hard to imagine now, I would be heading home.

The plot twist for this leg of my  journey was all my bad. I managed to miss my plane by misreading my itinerary. As Marianne and her husband drove me to the airport, I figured out the mistake. My heart sped up as I realized that there was no way in hell I was going to make my plane. Marianne pulled up across the street from the terminal and popped the trunk. Our goodbye was hasty as I grabbed my suitcase and futilely ran across the street and through the glass doors, trying to breathe deeply and slowly to calm myself down.

The ticket agent smiled at me as I struggled with my suitcases and my passport.

“Don’t worry, you can just hop on the next plane in an hour.”

“How much will that cost?” I asked warily.

“Nothing. This isn’t a problem,” she answered.

And much to my amazement and relief,  it wasn’t. Catching the next departure, I settled into a window seat on the small commuter plane. It was a short flight through bright afternoon skies,  the South Island rising up to greet me as the plane touched down in Christchurch. A shuttle bus gave me a glimpse of the city as it made multiple stops on the way to  the hotel, a sleek, modern box not too far from the airport. I splurged on room service for dinner and then sank gratefully into the clean sheets, setting my phone alarm for early the next morning.  

The ringtone of Natalie Merchant’s Wonder wafted into my consciousness at 7am. I was so excited to see Matt, and I also wanted to make sure that I had time to eat breakfast and write in my journal. A few hours later, as I waited for  in the lobby, I wondered what it would be like to hang out with him and Helen. Would we click the way we had out on the Strait? Would it be awkward? How much time could they spend with me and how much time would I be alone? I assumed they were busy people between work and having two kids. That relentless anxiety of being on my own crept in, smudging over the recent accomplishments of  my alone time at Lang’s Beach.

But all worries evaporated when I saw Matt. I hugged him unabashedly and our friendship commenced right where it had left off six years ago.

Matt’s mother-in-law and his twin eleven month-old daughters awaited us in the car. We toured Christchurch, stopping at the makeshift temporary church that the diocese erected when the 2011 earthquake rendered the original Christ Church uninhabitable. 185 People died in the second deadliest earthquake in the country’s history, and the city had far from recovered. The devastation of the city was heartbreaking. Two years following the earthquake of 2011 and there were still many empty lots filled with rubble and ruined buildings gaping in despair. Matt said it will take twenty years to rebuild.




We ate lunch in Lyttelton before we followed the winding road to a sweet, small town on the coast. The neighbor’s cottage abutted  Matt and Helen’s property on a quiet country road flanked by horse meadows and a dune- fringed beach. The cottage overlooked an enchanting garden, fully equipped with a tub and a fire pit underneath for outdoor bathing.


Worries about being lonely were unfounded and quickly soothed. The cottage provided the perfect balance of privacy and proximity to Matt and Helen’s cozy home.  A routine quickly formed – tea and cereal in the garden, accompanied by birdsong, and the occasional squawk from the neighboring rooster. I meditated and journaled before skyping in with Mark. Then, I would close up the cabin and trot around the corner to Matt and Helen’s house, hitching open the quaint latched gate to their yard, and ruffling their dog’s ears as I passed her on the porch.  


Over the week, I enjoyed witnessing the rhythm of their family life. They had a brilliant schedule for the twins, with Matt taking on the lion’s share of parenting while Helen worked as an administrator at the airport. The presence of Helen’s mom made it possible for Matt to spirit me away for some outdoors sightseeing, which was such an unexpected treat for me.. Matt had some adventures lined up  for us and we discussed the possibilities over dinner that first night. We settled on plans for more cave exploration and a day trip to Arthur’s Pass in the South Andes Mountains.

Our drive out to the mountains gave us plenty of time to catch up on each other’s lives and get to know one another better. Much like this New Zealand adventure, my camping trip on the Johnstone Strait in British Columbia with Matt had been an amalgamation of firsts for me: first attempt at ocean kayaking, first camping trip, first vacation with a friend without Mark along. Like a younger version of Garth, Matt was a skilled guide accustomed to amateurs. He knew how to meet me at my skill level and scaffold me to higher performance and more endurance. His patience, kindness, and sense of humor boosted me out of my comfort zone, and I was able to withstand eight-hour paddles in rough water. In a few short days, I went from tentative paddling in a double kayak to coasting solo on the wake of a giant cruise ship, yelling “Yeehah!”


During my cancer treatment, I’d recalled my initial fears of that adventure and how I had faced them with Matt’s support. The memory of how far I had come, the confidence in my body, and the strength that I developed on that kayaking trip, all became a reminder for me as I faced scary firsts in treatment. I told myself repeatedly that I could face the unknown and do scary things with the right support. Meeting up with Matt on the other side of the world now, after surviving cancer, felt like coming  full circle. Our conversations on the mountain drive gave me the opportunity to thank him for all he’d done for me back on the Strait and explain how it reverberated throughout my medical experience.

A panoramic view of mountains, foothills, and clouds surrounded us, as we pulled into the parking lot adjacent to the cave trailhead.  I grabbed my gear and headed to the public bathroom to change into appropriate caving apparel. Matt had supplied headlamps, neoprene gloves and booties, fleece leggings, long underwear and “jumpers,” waterproof outer gear, and woolen hats. As I pulled on my layers, I thought about the trust I placed in him to keep me safe, first on the Strait, and now entering into an underground cavern. I had trusted the doctors at the hospital as well, as I followed the dark pathway of their many-layered regimens for ridding my body of cancer. Garth came to mind too, and how he’d met my trust with so much appreciation, respect and humor.  A synergy between vulnerability, trust and risk taking unfolded before me in all of these experiences. The Universe was asking me to do my part, while supplying all the necessary support in order to make all things possible. I strapped on my headlamp and headed out to meet my next adventure.


Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.

Driving the Camel: Installment #14



When my feet finally touched the ground, I shouted “I did it!”

“Yes you did!” said Garth.

I heard clapping and cheering behind me. I looked up to see four young people standing just outside the cave’s entrance. I waved to them and one yelled out, “I caught it all on film!” While Garth tramped back up the hill to retrieve the ropes, I chatted with the photographer and her friends, and exchanged e-mail addresses so that they could send me the photos.


“Can you take a photo of us,” the photographer asked me.  She set up the shot, handed me her camera, and joined her friends at the mouth of the cave.

“We are training for a Christian mission abroad,” she said as I gave back her camera.”

“That’s so exciting. I’ll be going on a mission myself in a few weeks, a medical mission to help kids in the Middle East.”

“If you don’t mind, we’d like to pray for you.”

“Sure,” I said, as I turned to leave. “And I will say a prayer for you guys.”

“No, we meant now. Can we gather now and lay our hands on you in prayer?”

I was a bit taken aback, but thought, what the heck? It couldn’t hurt.

I nodded and they surrounded me. They placed their hands on my shoulders and head. The young photographer led the prayer.

“May God bless you and keep you, filling you with strength and courage to do his work. May you be safe and secure in your mission to help those in need”.

I felt myself tearing up as the power of their words and touch moved through me. My father is a minister and I grew up with the comfort of his hand on my forehead and his prayers each night. As strange as this odd encounter with young missionaries seemed, it felt familiar and safe. I was happy to carry their prayers and good will with me.

Garth and I met up back at the car. I reached into my purse for my wallet. We’d negotiated a price for our first expedition, and I wanted to pay him for his time today.

Garth held up his hand. “ No way,” he said. “Yesterday you had a “C” price rating. Today, you’re an “F”

“I don’t get it,” I said.

“Yesterday, you were a ‘c’  for client. Today, “you’re an ‘f’ for friend. No charge.”

I put my wallet away.

“So, what was your favorite part today?” I asked him.  “Was it when I was dangling there like a Christmas ornament?”

“Nope,” he said. “It was when you were terrified and you did it anyway.”

I smiled as I took that in, holding tight to the strength that he mirrored back to me. I felt nourished by Garth’s words and the missionaries’ prayers. I contemplated the kindness present in the world as we bounced along the rutted dirt road and turned back onto the main thoroughfare.

Like Garth had done for me, I’d had the honor of witnessing and supporting children facing some pretty scary things. Playing with children facing illness and treatment, the unfathomable became more manageable. A child came to mind who I’d worked with years ago, a war refugee from Bosnia, his family facing a different kind of war when their son was diagnosed with cancer. Five year-old Serge and his family had traveled a great distance and suffered many hardships before his medical diagnosis. Caught in the midst of the Bosnian war in the mid-1990s and forced to flee from their home, the family lost possessions, their livelihood, and many friends and family members. While refugees in their own country, Ivan and Hana discovered a lump in their son’s left foot. The doctors in Belgrade diagnosed it as an invasive, cancerous tumor. As a physician, Ivan knew that his son needed aggressive treatment. He managed to obtain refugee status in the United States, and he, his wife, Hana, Serge, and his ten year-old brother, Davud, found their way to New York City and the hospital where I worked.

I searched for ways to connect with this family. A friend gave me some great advice.

“Learn a few common phrases in his language,” said Petar. “It will make him feel more at home, and show the family that you care.”

I couldn’t imagine being able to pronounce their language with any accuracy and I told him as much.

“It doesn’t matter,” said Petar. “It’s the trying that counts.”

He  taught me how to say hello and goodbye, and how to ask, “How are you today?” and “What would you like to play with?” These may have been only a handful of phrases, but when I haltingly mispronounced them, Serge would smile, laugh, and answer me in rapid Serbo-Croatian.

One day, Serge and I played Yahtzee Jr. in the clinic, while he received his chemotherapy. His mother sat close by reading and chatting with me. Yahtzee is a game that requires little or no spoken language and we played easily together, enjoying the clack and roll of the dice. Hana and I conversed in English, and soon, a cross expression appeared on Serge’s face. I could tell something bothered him and assumed that it was my lack of complete attention. I encouraged Hana to ask Serge what was wrong and an animated conversation ensued between them as I sat holding my dice.


“He is angry with you because he knows you speak his language and he wants to know why you insist on speaking English with me,” Hana explained.

I asked Hana to translate for me and dove in.

“Oh, I get it, Serge! I asked how you are and what you’d like to play with in Serbo-Croatian. It must feel like I am leaving you out when I speak English with your mom.”

Serge nodded, so I continued.

“I only know how to say a few things in your language because a friend taught me. So, I have to speak English the rest of the time. But I will try harder not to leave you out of the conversation. And maybe you can teach me how to say a few more things in your language.”

Serge grinned at me and shook his dice.

“You are ready to get back to the game,” I said and followed his lead.

I admired Serge’s strong sense of self and was not surprised when Ivan shared a story of his son’s experience in the Belgrade hospital that exemplified his spirit. The Serbian hospital had strict visiting hours and Ivan and Hana were not allowed to spend nights at their son’s bedside. When Ivan arrived early one morning, the nurse on duty reported that she had caught Serge attempting to leave the hospital the previous night. Serge had limped into an elevator and would have been long gone if not for the nurse’s quick actions.

Ivan approached his son and put his arm around his son’s small shoulders. “What do you think you were doing last night?”

“My foot hurt. I don’t like it here, so I was going home.”

  “Home,” his father repeated. “And how do you think you were going to get there?”

“I was going to take a taxi. I know my address,” he said.

Ivan continued his excavation. “Hmm, yes you do, but let me ask you this. How were you going to pay for the taxi?”

  “Well, you would have paid for it when I got there of course!” Serge said.


  Ivan told this story with pride and I enjoyed hearing his narrative of Serge’s resilience. The whole family embraced a positive attitude towards their son’s illness and their lives in general. When devastating medical news arrived, that Serge’s foot required an amputation, they remained calm and open with their son about the impending amputation. Entering Serge’s inpatient room the day before surgery, I found a helium Garfield the Cat balloon. Ivan had removed Garfield’s left foot, a playful and creative action that indicated their willingness to discussing the amputation with their children.

This is a tribute to Serge’s adaptability and determined attitude, and his parents’ ability to value these strengths and to act accordingly. Many parents avoid speaking with their children about imminent frightening procedures. They believe that the way to protect their child from upsetting experiences is to avoid the topic at all costs. The downside of secrecy is that these children wake up with pain and changes in their bodies, and simultaneously encounter a loss of trust in their support system. For many children, this can be as devastating and irrevocable as the loss of a limb.

As I would with Serge, child life specialists routinely use their knowledge about child development to appropriately prepare children for procedures. We partner with parents to tell kids what they will see, hear, feel, smell, and taste, because children experience their surroundings through the five senses. We calibrate our language to match the developmental age of the child, and we continually assess how the child is responding to and coping with the information. Just like adults, some kids want to know a lot of details; some do not. But all children feel safer when they know what to expect and who will be there to support them.


On that day, my goal was to prepare Serge and his family for surgery through the use of play. Speaking to children through the language of play makes every topic less scary and provides opportunities for them to roll up their sleeves and take charge of their medical experiences. Interactive play deepens the learning and gives the child opportunities to construct their own understanding and interpretation of the events they are facing. It also gives them a safe venue to ask questions and express concerns. Play empowers children to evolve from passive recipients of medical care to active participants in their own healing.

I explained my motives and plan to them. Serge and his brother, Davud, joined me in donning surgical garb, gowns, gloves, hats, masks, and booties.

“This is the patient,” I said, pointing to the doll, “and he needs his left foot amputated. We are going to give him anesthesia and perform the surgery right here.”

As I spoke, his mother  cleared a place for the doll on Serge’s rolling bedside table, removing his lunch tray and set it on the windowsill.

Without my asking, Davud leapt in to interpret for his brother, so I continued. “You guys can be whoever you want: the surgeon, the nurse, the parent. And you can tell me who I should be, as well. It’s also okay to just watch if you want.”

“I’ll be the surgeon,” Davud immediately stated.  

Uncharacteristically, Serge hung back.

“You can watch Davud start, and jump in at any time you want,” I said. “Now, since this doll doesn’t have a face or clothes, I thought we might begin by decorating him.”

I handed the boys a bin of markers.

“I’m wondering how this guy is feeling and what kind of expression you should put on his face.”

Davud turned to Serge to get his opinion. Serge piped in in rapid Serbo-Croatian.

“Serge says that the patient is scared, so I think he needs a sad face.”

He busied himself with decorating the doll.

With my guidance, Davud enacted the steps of preparing the doll for surgery, checking the patient’s ID, marking the foot to be removed, and administering the anesthesia through a mask. I explained the difference between regular and anesthetized sleep, and at my encouragement, Davud playfully shouted in the doll’s ear to make sure that he was indeed asleep. By this point, Serge began to reach for the medical implements, offering his brother suggestions. When it came time to actually amputate the doll’s foot, the boys worked together to manipulate the scissors, remove the stuffing, thread the needle, and sew and bandage the wound.


Many adults struggle with the idea of broaching medical topics with children. But what is awkward and frightening for adults may not be so for children. Kids play freely and happily when given permission, suitable tools, and an encouraging atmosphere. During the pretend surgery, Davud and Serge were animated, interactive, present, and curious. After Serge’s initial hesitance, the boys became deeply immersed in the activity, asking questions about the surgery and what would come afterwards. Their father and I took turns answering their questions, with Ivan’s medical background filling in gaps in my information. When I asked Serge what he would like to do with the doll’s amputated foot, he suggested wrapping it in tissue paper and placing it in a box for safekeeping. I provided the box and tissues, and Serge and Davud went about this task with quiet reverence.

Those boys and their parents are forever in my heart, and I picture them, bent over that doll, whenever I teach a child life student how to prepare a child for an amputation using play.



Dear newcomers to my blog,

Driving the Camel is a memoir that I am publishing as a serial on this blog. It follows my adventures as a child life specialist during a transformative year of my life when I battled breast cancer and travelled the world. It includes reflections on my past work as a child life specialist, my personal life and stories of the wonderful people I met on my travels. You can find previous chapters in the side menu categories (or scroll down on mobile devices) under “Driving the Camel: Adventures of a Child Life Specialist.


Driving the Camel: Installment #12



 Alpacas and Chooks

The house where Garth and Clair had recently retired  perched on top of a gentle hill, their farmland spreading out below. Cattle chewed grass by the side of a pond surrounded by cattails and high grass. As we pulled into the unpaved driveway, a black lab with a greying muzzle wiggled in delight as she approached the car. A great blue heron  perched on their well pump. It didn’t ruffle a feather as we passed it. Three alpacas peered at us from behind a fence. I turned to Garth.

“Are you sure Clair won’t mind being surprised by an unannounced guest?” I asked.

“Clair loves guests!” he bellowed. I wondered if she really did, or if Garth might be a bit clueless about the stress that unexpected guests can put on a wife. But the moment I stepped into their home, I could see he was far from clueless. Continue reading