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.