Cooperative Play in Nature at Camp Klicek, Czech Republic

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

 

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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

 

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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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Velvet Revolution Remembered

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November 17, 2017 marked the 28th anniversary of the Velvet Revolution, when  Czech citizens rose up against communism and succeeded in toppling the regime, foretelling the coming dissolution of the USSR. This date is no coincidence, as it echoes a previous moment in history, when the Nazis responded to students’ protests by closing all Czech universities, killing 9 students and imprisoning 1200 in concentration camps.

On the national holiday, the Kralovecs and I joined the throngs at Wenceslas Square in Prague to remember and celebrate the arrival of freedom and democracy  to their country. A large stage with a giant screen broadcast live music and political speeches. When we first arrived, yards away a news crew interviewed one candidate for the presidency, surrounding him with bright camera lights and microphones.

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Booths lined the street, some displaying candles in red glass jars, and ribbons in Czech red white and blue, others offering political information. One encouraged passers by to sign a petition calling a stop to the hunger strike of a man protesting the current president running again for office. People feel that his life is more important than the foolishness of the current president.

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The self sacrifice is reminiscent of a student’s martyrdom in 1969.  Jan Palach set himself on fire at Wenceslas Square after the Soviet Union invaded his native Czechoslovakia to crush the reforms of Alexander Dubcek’s government.  The actions of people who sacrifice themselves in order to awaken awareness and resistance against oppression are as disturbing as they are inspiring. Why should this have to happen in order for people to wake up and resist?

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We headed to Narodni Trida, the place where the protestors and police clashed on the fateful day. Entering a building where an exhibit of enlarged photos of the revolution hung in the lobby, I noticed a father explaining one photo to his small son.

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The photos told the story of the revolutionaries, who were students for the most part. They carried signs calling for freedom. One showed students with raised and open hands. A banner read “Our hands are empty!” indicating their lack of weapons. Apparently the wording for “We have sticks in our hands” is very similar to their statement, and the authorities later lied in the press, reporting that the students were inciting violence. In fact, it was a peaceful demonstration and many students handed or threw flowers to the police in riot gear, who responded with violence.

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Outside the building a sea of glowing red candles and flowers surrounded the edifice. Citizens young and old  approached the flickering monument to add their own candle or flowers. Small children crouched at the edges, observing the firelight while they braved the cold night.

 

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A marching band made its way up the middle of the street along the trolley tracks and stopped beneath a balcony to accompany a singer whose voice silenced the crowd. She sang a rendition of a song performed from the same balcony during the protest, and I could see that many people were moved to tears by her words. Even though I don’t speak Czech, I too felt a stirring and energy that seemed synergistic with the crowd’s mood.

I  had many questions for Jiri  and Marketa about what they recall from that day in 1989. They explained that their role was a small one, handing out pamphlets and showing up for the protests. The people of Prague were mostly open to the ideas of change and democracy, but the citizens in rural areas were more closed to the revolutionary ideas and less willing to risk protesting Communism. Well known actors took up the cause to travel in groups from village to village to impart the message of freedom and facilitate change. It makes me think of what evil can do in the face of no action at all, and it was the many risks that people took, large and small, that brought about tremendous change.

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We drove home watching the television broadcast of the Memory of the Nation Awards broadcast from an elegant theater on the Square and streamed on Jiri’s smartphone. A dear friend of the Kralovecs, Father Frantisek Lizna, was one of three recipients. The nation celebrated the Jesuit priest for his service to the country in taking a stance against Communism that landed him in jail, and for a life of service to those in need. I had met him on one of my previous visits, and I recall his kind, open and playful nature. Indeed,  jokes and banter peppered his acceptance speech, and he exuded humor and lightness even in this formal environment.

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Funny enough, we found out later that we all appeared on the national Czech news prime time that night, as the news cameras caught us unaware in the crowd. I felt extraordinarily blessed to stand witness to the history of this place and to share in the personal memories of my revolutionary friends. As we headed home through the dark and foggy roads to the village of Malejovice, I thought about how the students proclaimed that in unity there is strength, despite the authorities’ attempts to separate the workers from the educated classes in order to tamp down knowledge and resistance. I think of our own country and how coming together may be the only way to survive and thrive as a true democracy.

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Whose Woods These Are

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I awoke to my first snow of the season dusting the rooftops, fence posts and trees of Malejovice. The woods called to me and so I donned hiking boots and set out over the fields to the forest. The snow sifted quietly, the mud of the unpaved road sucked at my feet and the utter silence filled my heart.

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Arriving in the forest felt like entering the haunts of Hansel and Gretel.  I stepped past the trickling brook and into the peace of the sheltering pine trees. The pine needles cushioned my steps and the trilling of birds and patter of melting snow the only sounds. I passed a fallen tree, it’s root system an earthy sculpture.  Pine cones and balsam branches decorated the forest floor.  Mossy tree stumps stirred memories of nature walks with my dad when I was very young. He used to point them out to me and tell me that they were fairy castles.

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I stood still and closed my eyes and listened. The first poem that I learned and memorized at age seven welled up from within.
“Whose Woods these are
I think I know.
His house is in the village though.
He will not mind me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sounds the sweep
Of easy wind and downy flake.
The woods are lovely dark and deep.
But I have promised to keep
And mikes to go before I sleep
And miles to go before I sleep.”
Robert Frost

Indeed I knew that friends and breakfast awaited. I reluctantly left the silence of the woods and headed back to the warmth of Malejovice over fields glistening in the melting snow.

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Over the River And through the Woods to the Czech Republic I Go

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I greatly anticipated my fourth visit to collaborate with the Klicek Foundation in the Czech Republic. The cold weather brings to mind the song from my childhood of traveling via horse and sleigh through the woods to grandmother’s house. For me, it meant taking a new route flying to Prague via a stop over in Zurich, which provided me with my first glimpse ever of the majestic Swiss Alps. I had no idea they covered such an expanse.

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Our adventures began immediately, as Jiri and Marketa Kralovec included me in some important errands along the way from Prague to their home in the small village of Malejovice.  The Klicek Foundation has secured a plot of land close to the Motol Hospital, on which they will build a new hostel for parents of sick children visiting Prague for specialized medical care. Our assignment for the day was to measure the distance between several trees and a wall, so that an engineer could design the parking lot to meet the requirements of the environmental council.

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And so, armed with measuring tape and a clipboard, we gathered the necessary measurements. We then wound through the city, making stops at two publishing companies and an electronics store, where we gained sustenance in a lovely cafe to tide us over before the hour long trip home to the village.

Molly the dog and the many cats greeted us, and there was hot homemade soup waiting on the stove and a crackling fire in the green ceramic fireplace. Having missed a night’s sleep on the plane, I was happy to fall into bed in the dark country night, and I slept deeply without remembering my dreams until rising early for a full day’s work the next morning.

The first scheduled event was a gathering of three schools that are housed in one building in Prague. There are two secondary schools, one for nursing and one for social work, and a college of nursing. The students came together in a chapel at the school of nursing Jana Paula 11, and we presented a workshop on the value of play and the psychosocial needs of children in hospitals. The room was jam packed with young people, and the more interactive we got, the more engaged they became.

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Following this seminar, I accompanied Jiri and Marketa to a city council meeting where they advocated for permission to build upon the plot. There are many steps to take before they can announce the council’s approval and begin fundraising for their project. A well known actor, David Vavra,  who also happens to be an architect, is designing the building.

Following a challenging meeting, we headed over to the famous Old Town Square, to the medieval building that houses the Skautsky Institute. There we hosted a gathering of hospital play specialists that also included the medical director of a hospital on the northern border, a book publisher, and a British law student studying abroad at the Charles University. We discussed the challenges facing the profession, many of which involved issues of racism regarding the care of Roma families. The thorough marginalization of the Roma leads to trust issues between the families and the staff. The play specialists often feel overwhelmed by the intersectionality of the many societal factors that impact the lives of Roma families.  They feel helpless in the face of such poverty and hopelessness.

The law student, of Roma heritage, adopted by a British family, is researching the educational inequities and racism that Roma children face in Europe. He hopes to champion their cause as he progresses in his profession. He had connected with me after reading my blog about the children of Chanov — such a small world after all

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Child Life & Nursing: Practicing pediatric psychosocial support in Novy Jicin

 

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My recent visit to the Czech Republic, sponsored by the Klicek Foundation, included a return to the Mendelova Nursing School in Novy Jicin. This time, Maria Fernanda Busqueta Mendoza joined us from Mexico, and 50 students participated in our seminar, making it a great opportunity for global learning and a multicultural exchange of ideas. As you can see from the first photograph, the students were a lively bunch, and they eagerly participated in the highly interactive time we spent together. Jiri Kralovec served as our interpreter and his son, Jiri, touted  by Foto Video Magazine as this year’s hottest photographer on Instagram, documented our learning. Most of the photos below are his work.

Jiri and his wife, Marketa, started us off by sharing information about  the importance of play for hospitalized children and the history of their efforts to bring hospital play to the Czech Republic.  It has been a slow, uphill battle to change the hierarchal and disempowering bureaucracy of their medical system.  I followed with an introduction to the field of Child Life, the role of child life specialists in hospitals, and the possibilities for collaboration with nurses. I spoke about the role of play and community in the healing process, before moving on to some illustrative activities.

Sharing our own memories of play is one way to deepen our appreciation for the role of play in our lives and in the lives of children. I asked the class to think about their own childhood memories, using their five senses — what do they remember about their play environment? Did play occur inside or outdoors, or both? Were they playing alone, or with others? Did they play with toys, loose parts, or their imaginations? Are there sounds, smells, tastes or textures associated with their memories? What feelings are evoked in sharing them? The students paired up and took turns both sharing and listening to one another.

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Armed wth a deeper awareness of the value of play, the students were now ready to learn a bit about how to make procedures less frightening for children. I have always wanted to use role play as a way to demonstrate all the things that can go wrong during a procedure, and how minor changes can make things easier for medical staff, children, and caregivers. I took this opportunity and asked for volunteers. One young man played the patient. We instructed him to lie down and asked three others to pin him down to the table, much like medical personnel are likely to do when a child receives an IV. We demonstrated how the very act of being forced into a prone position increases one’s sense of vulnerability and loss of control.

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Add to that several adults talking at once, loudly over any protests you might make, telling you to stay still, not to cry, to be a big boy, not to look…. and you get the picture. Chaos, stress and shame accumulate to make for a disastrous experience for all.

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But there are some simple things that nurses can do, either alone or in partnership with play specialists, to change the outcomes of such procedures. It doesn’t mean that the child won’t cry, but it is more likely that the child won’t suffer emotional trauma, will return to baseline quicker, and the nurses can feel more successful and less like they are causing the child undue suffering.

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With these tips in mind, the students enacted a better case scenario, where the parent has a supportive role in positioning the child for comfort. The child is upright and held in a calming hug, rather than being restrained on the table. The child is given some choices, such as which hand to try first for the IV (the non dominant hand is preferable), and whether to watch the procedure or use a toy or book for distraction.

  • Electing one person to be the voice in the room,
  • encouraging the child to breathe deeply and slowly,
  • narrating each step of what the child will feel,
  • explaining how a tiny plastic catheter, not the IV needle, remains in the child’s hand to deliver medicine,
  • staying away from comparative or shaming statements,
  • and showing empathy

are all ways to provide psychosocial support, making the experience less traumatizing and painful for the child.  Accumulated painful and traumatic medical experiences can make children phobic and avoidant of medical care.

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We also spoke about non-pharmacological pain prevention and reduction. The interactive component of our lecture surely made our important information memorable. The action and laughter surely made more of an impression than a power point! We all reflected together about  how even adult patients can benefit from choices, information and empathy.

Back to the topic of play, we explored ways for the nurses to instill playful interactions into their communication with pediatric patients. Rapport building and distraction through the use of hand games is one way that they can put a child at ease. I demonstrated several hand games, and asked them to show me some of theirs as well.

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Our time with these wonderful students ended all too soon. We posed outside of the school for a photo with some of the Klicek Foundation hospital play specialists before heading to the historic square down the street. Around every corner of this country is a beautiful scene, no matter where you are!

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Restoring my Soul: Recipe for Self Care in The Czech Republic

 

 

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We all need time to restore our energy and feed our spirits. It is not an easy task during the workaday world of most of our lives. For anyone in the service professions, self care is a necessity, not an option. As a professor teaching Child Life graduate students, my calendar revolves around the academic year, and by the time the end of May rolls around, I am usually quite exhausted and spent. An invitation to teach in the Czech Republic came at a very good moment for me  – after graduation and at a beautiful time of year.

Recipe Ingredients:

Knowing what to expect

The recipe for filling my well was a simple one, but I could not have done it without the friendship and nurturing of the Kralovec family. Marketa graciously and painstakingly created a hand written and illustrated book telling the tale of all we would be doing together in the next two weeks. The guide was especially helpful in letting me know what to expect, as we traversed the country and visited Poland and Austria.

A Warm Welcome

But the whirlwind began with a gentle, warm welcome back to Malejovice, the home of the Kralovec family and the Klicek Foundation Hospice. My third excursion from New York City to the Czech Republic felt like returning to the home of my soul. Marketka, their daughter and a highly skilled artist, documented my arrival by depicting the short emotional distance between our two homes. What’s an ocean anyway when like minds and hearts connect?

Bright and cozy bed linens and wild flowers from their garden greeted me in the guest room. The sounds of the birds sifted in with a gentle breeze through the open window.

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Wonderful Home Cooked Meals

Each meal was prepared from local ingredients and cooked with love. The eggs from their chickens (rescued from terrible conditions in a chicken mill), fresh herbs from their garden, homemade soup, duck with dumplings and sauerkraut, fresh bread and danishes, black tea and local beer…….. my palate fairly exploded from the goodness of it all. The family would not allow me to wash a plate or rise for a napkin. The nurturing wasn’t just about the food, but the care with which they served it.

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Four Legged and Winged Friends

Animals are therapy, and a wide variety of animals inhabit the pastures surrounding the 100 year old schoolhouse. Each morning began with a chorus of birds at about 4 AM, followed by the harsh and comical braying of Donkey (his name is Donkey) at 7 AM. The sheep served as the snooze alarm, sounding off a few moments after Donkey. Mollie the dog was the night time alarm system,  and the chickens cooed and clucked whenever we approached them. The cats draped themselves over windowsills and plant boxes and moseyed up and down the driveway throughout the day.

 

Nature

Nature is what grounds us and reminds us of the cycle of life, our smallness, and the beauty of creation. The surrounding forests of Malejovice, the wild flowers and rolling hills and pastures, the lush ponds and hidden villages of the country………  all served to quiet my gerbil wheel mind.

Solitude

I get plenty of time alone teaching online from my apartment, but there is something different about being alone with nature in wide open space. Nothing to distract me from the sun, breeze, scents and light.

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Wonderful People

Solitude is always best when you return from your walk to a household filled with joy, love, laughter, and music. The time spent with these people, and all the people we met on our travels, energized me and acted as a balm to my tired soul. Thank you. Thank you. Thank you – and these words will never be enough to convey my gratitude.

Instructions:

Repeat whenever able.

 

Building Bridges Instead of Walls – Teaching & Learning in Mexico City

 

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One week post-election, I found myself bound for Mexico City, ready to teach and learn alongside my adventure colleague, Maria Busqueta. Marifer, (as I call her) hosted me in her home town, where she is a child life specialist, psychologist and educator. It was a whirlwind couple of days, as we visited the General de la Raza Hospital, learned about the Ayudarme a Sonreir ante el Cancer Foundation, The Vuela Foundation, taught a class on play techniques for adolescents, and attended a two-day conference on palliative care. Phew!

My first impressions of Mexico City and Marifer’s neighborhood: Unexpectedly cold and wet. Lovely hills rising up from the urban center. Cypress trees in plenty and Bougainvillea in bright, fuscea explosions amongst the trees and spilling down high stone retaining walls. Hilly, winding roads with speed bumps everywhere instead of stop signs. Heavy and erratic traffic. Cold mornings and nights. Marifer’s house has many levels to it, all encased in gingerbread auburn ceramic tiles. Like my home, the kitchen and living room are on the upper level, with bedrooms below. Marifer’s jaunty beagle, Duncan, lords over the front yard and threatens escape with each coming and going of a human being through the iron gate. Marifer’s mother cooks for us several times a day, filling me with homestyle Mexican fare. It is mere moments before I feel like family.

We are up bright and early my first full day there, ready to pay a visit to the Hospital Raza. Lisette Garcia Urenda, the founder of the Ayudarme a Sonreir ante el Cancer Foundation (which translates as “We help you smile after cancer”), is hosting us, and we meet her outside of the largest and oldest public hospital in all of Mexico. The sidewalks surrounding the building team with merchants hawking their wares, everything from pork roasting in a cauldron to magazines and fruit. We weave past the stalls and in through the back emergency entrance to the hospital. As we enter the foyer, several pediatric cancer patients and their families are exiting the hospital, bundled up for discharge and eager to be home. But they stop to hug, kiss and chat with Lisette. They shake our hands and offer “mucho gusto” as Lisette introduces us.

It is clear that the children and their caregivers adore Lisette. And it is easy to see why – she is all brightness, high energy and love. One teenage boy jokes for me to take him back to the United States with him. The younger children glance at us shyly.

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There are three events planned for the day, two presentations to patients and a therapeutic art activity to be conducted on the inpatient ward. The foundation grants wishes for pediatric cancer patients, and families have gathered to witness Lisette’s presentation of a wish to a young girl. They sit in tiny, child-sized plastic chairs around the parameter of an open roofed waiting area. The children sport face masks, bald heads, hats, and winter coats with good reason. It is cold.

The child is brought to the center of the room, and Lisette introduces her to everyone. I am regretting in the moment that I don’t understood more Spanish, but it seems that she is telling them how well the girl is doing post bone marrow transplant. With great flourish, Lisette hands the girl a large present. The child opens it with excitement and beams at its contents, an “alien” doll that  is apparently quite the rage. It’s hard not to note what a child with cancer might have in common with the toy. Both are bald; both might need to be isolated because of threatening germs in a hostile environment; both may need to be fed through a tube in the stomach. And, any child who has such a diagnosis may often feel like a misunderstood species hovering over the more typical lives of healthy peers.

The child hugs Lisette. The onlookers clap, and I wonder if they are envious of her.  Lisette explains to me that most of them will have a wish granted at some point, so that no child feels left out. Later, the child’s mother is crying in the hallway, sharing bad news with her social worker. Her daughter has relapsed. The bone marrow transplant didn’t take.

Lisette says that many of these children die, and that in order to do her work, she must get lots of therapy and continually study and obtain higher degrees. This is why she is a current student of Marifer’s. She does the work because when her father-in-law died, he told her that she must work for the forgotten children. She says that many of these children don’t have electricity in their homes.

The next planned event is the presentation of a natural hair wig made from five individual donations of hair. The recipient is a six-year-old girl. She is very shy and quiet. We are in a hall outside of the infusion clinic. The floors are buckled and seams of cement overflow the protruding tile. I wonder if this is from an earthquake. Nurses wear white and institutional green uniforms, donning plastic nursing caps in the same colors. I feel like I have stepped back into the 1950’s, except for the fact that they are all taking photos on their cell phones as Lisette presents the wig to the child.

Lisette speaks with the girl for quite some time. She reassures her that she needn’t speak if she doesn’t wish to, that they can communicate with their eyes. Lisette tells the child about the beauty of her heart, that the wig is just an accessory, that her beauty is not dependent on whether or not she has hair.

You must say to yourself every day in the mirror: “I am beautiful!”

The child tries on the wig and looks in a mirror provided by Lisette. Everyone poses for photos with her. In the end, her mother repacks the wig carefully in the box, and they are on their way.

Lisette leads us through a chaotic and crowded hallway to a packed elevator that carries us to the inpatient  pediatric oncology unit. In the hallway between two separate wings (one designated for solid tumors, the other for liquid), is a small but well equipped playroom. Siblings and patients mingle at child-sized tables. There are floor to ceiling shelves laden with cause and effect toys, a toy hospital, dollhouse, action figures (“for boys” says the playroom coordinator), blocks, puzzles, games and art materials. There is a large dollhouse in a corner, a kitchen play set, and several large bookcases overflowing with books. Lisette’s foundation supplies the  DVD lending library. One child sits with an adult working on a puzzle. Another plays with the dollhouse. A mothers group meets in the waiting room next door. The only thing I feel is missing is a medical play corner and sensory play materials. A flatscreen tv plays a Disney movie overhead.

Lisette has plans for an expressive arts activity. She brings us to the liquid tumor wing, into a room with six beds. Five children between the ages of two and fourteen seem excited to see Lissette and very open to our visit. The six-year-old boy is talkative and funny. After some quipping back and forth, Lisette hands out crayons and art paper to the children with a body outline on it.  But before she can begin to explain the instructions, the two year-old’s mother leaves the room, and the toddler begins to cry loudly and  inconsolably . She sits in her cage-like crib, crying desperately, reaching both arms up as if asking her absent mother to pick her up. Either that, or she is imploring the Gods to bring her mother back!

Lisette approaches with kind words, but the toddler is having none of it. She screams louder. Lisette offers her crayons and a “Frozen” coloring book. The child cries “No!” and turns away. Lisette is unperturbed. Using the surroundings, she jumps quickly into a bit of improv. The room has been newly decorated with a brightly colored mural on all four walls, ceiling to floor. It is a nature and farm scene. Near the girl’s bed, close to the floor, a mother duck swims with her three ducklings on a bright blue pond. Lisette launches into a conversation with the ducklings, turning her back on the toddler, lessening the child’s stranger anxiety by ceasing direct eye contact. She engages everyone in the room in asking the names of the ducks. She suggests the proffered names, and the little girl shakes her head in protest at each one. But she has stopped wailing and is watching Lissette intently. Lisette blocks the child’s view of the mother duck and tells a tale of the ducklings searching for their mother. She reassures the girl that her mommy will always return. We all sing the song “Five Little Ducks”. Lisette offers the coloring book again, asking, “May I put it on your bed?” The child accepts and begins to color.

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Lisette conducts the art activity with success. She speaks to the children about the variety of emotions we all have. She says they will play a coloring game based on a game called “Basta!” (enough). She takes turns calling out emotions, and each time they must grab a crayon and color within the body outline to represent where and how much of that emotion they have until Lisette yells, “Basta!” Lisette is very lively and whips the kids up into a coloring frenzy. She begins with the emotions of fear, anger, and sadness, and ends with love and joy. I am sitting with the toddler, who is methodically drawing many tiny, blue circles on each page of her coloring book, while she listens and glances at the other children. She watches closely as a nurse enters the room and approaches the six-year-old. The boy grins and says, “It’s good that you are here. My IV is backing up.” The nurse adjusts his IV, then moves over to the toddler, preparing medicine in a syringe without a needle. The toddler opens her mouth complacently to receive it without complaint.

The fourteen-year-old has gone for a walk. I had noticed when I entered the room that she didn’t appear physically ill. She has all of her hair, and is not connected to an IV. She wore a contented, cheerful expression while she chatted on her cell phone. Soon, it is time for us to move on. The teen has returned to her bed. We all pose for photos. All the children except the toddler smile. She still appears a bit somber.  I am the first to leave the room, and the teen’s caregiver follows me and grabs my arm in the hallway. She asks if I understand Spanish and begins to pour out a story to me that even with my broken Spanish, I can piece together. She is not the teen’s mother, but her aunt.

Two weeks prior, she, her two sisters and family members were traveling by car in a caravan. There was a horrible crash. The teen’s mother and father were killed. Her brother lies in critical condition in the ICU. Although the teen was unharmed, the tests she underwent at the hospital revealed that she has cancer. She had only just learned of her parents’ deaths the day before. I struggle to match that news with the image of the calm, smiling teen I’d met. Was she in shock? Denial? Is it her Faith in action?

The aunt shows me photos on her phone of her family, as well as a video about a teen whose mother dies. She says she is a Jehovah’s Witness and believes that we will all see our loved ones again after death. I tell her that I will carry her family in my heart.  I think about how much good healthcare in hospitals involves helping patients and families to tell their stories. This seems true in every country I visit. And in every country thus far, families don’t hesitate to share their stories with a stranger. Perhaps it is easier to tell a stranger. But it is more than that. This woman, and others I have met, seem compelled to share their narratives, as if we couldn’t stop them if we tried.

Leaving the hospital, I am sad, exhausted and hopeful in equal measures. Lisette’s work makes a mark. Listening makes a difference. The children won’t be forgotten by us. Shared stories tear down cultural walls.

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Driving the Camel: Installment #15

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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.

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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.

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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.  

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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.

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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.