The Ripple Effects of Mindfulness and Meditation

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Remaining calm and centered during the holidays

Child Life Mommy

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I recently completed a six-week course of mindfulness and meditation at my children’s  pediatric wellness center. I went into it with some knowledge of the practice and the benefits that it can bring to people, but not really knowing how to incorporate it fully into my life. My ultimate goal was to deepen my learning experience and to also teach it to my family and the children that I work with in my  practice.

The workshop was led by Cory Muscara from the Long Island Center for Mindfulness.  He was incredibly helpful on breaking down the theory, how to practice different types of meditation and how to realistically weave it into your life. He gave us daily homework to practice guided meditation, self-reflect and increase our awareness of the present moment.

All three may sound easy to do, but it was a challenge because our brains are wired to constantly…

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Medical Play: Modeling Empathy for your Child

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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.

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Preventing Pediatric Pain: A Longterm Win Win

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Amy Baxter, MD, the queen bee of pediatric pain prevention

“I believe established medicine is courting a public health disaster, not because of costs or lawsuits or one dumb publication from a scientist gone bad, but because of a national Pavlovian failure of empathy.” — Amy Baxter

Who is Amy?

“Emergency pediatrician Amy Baxter noticed a disconnect in health care: caregivers often cause pain to solve a problem, but for many patients, pain is the problem. While researching the causes and consequences of untreated pain, she invented Buzzy, a bee-shaped device that physiologically takes the sting out of shots using high frequency vibrations and cold. Amy is the director of Emergency Research for Pediatric Emergency Medicine Associates at Children’s Healthcare of Atlanta, Scottish Rite. In the academic world, she is known for creating and validating the BARF nausea scale for children, and an algorithm to measure the timing of child abuse. Honors include a 2011 Medical Design Excellence Award, Georgia Bio Innovative CEO of the Year, and a Wall Street Journal “Idea Person.”” (TEDMED, retrieved November 7, 2016)

In a recent conversation with Dr. Baxter, I asked her about her war on pain, and her appreciation for the field of Child Life.

What are your beliefs about pediatric pain and the need to prevent it?

I take seriously the oath to First Do No Harm.  When iatrogenic procedural pain causes people to fear healthcare later in life, we have done harm.  When we withhold pain management in the trauma bay, we do harm. I have always been suspicious when we do something without pain management to someone small enough to hold down, but we sedate or give analgesics when they’re big enough to fight back.

What do you believe children need most in the medical setting? 

Children need to know they’re safe.  Therefore, parents need to know we’re doing everything we can to make them not hurt.  Something may happen that isn’t comfortable, but kids need to trust that they’ll be warned.  If there isn’t any way to make it more comfortable, they need to know that their care team and parents are all agreeing and supporting what is best for the child. Even very young children know crap happens; what is scary is when the people who keep their world stable are visibly angry, confused or afraid.  Pain isn’t the worst thing that happens, it’s pain when their parents seem unable to protect them. When I fix a nursemaid’s elbow or a patella, I offer analgesics, but let parent and child know I can make them feel better FAST right now but it is going to be uncomfortable for 5 seconds or less.  Or they can wait, but it will still be a little uncomfortable.  Most opt for fast, but that control and honestly let them know I’m thinking about not hurting them first and foremost.

Why is pain prevention important for very young children?

Kids who are persistently afraid of needles have healthcare consequences. They grow up to be adults who don’t get flu shots, or start insulin when they need it, or donate blood.

What motivates you in uphill battles with sensitizing other medical professionals to the necessity of pain control for infants and children? 

I really believe that truth carries its own coercion.  If people who want to heal see the truth of the importance of pain relief, they eventually will align their behaviors with that belief.  No one wants to be an outlier in medicine.  Once one person sees the truth, that pain relief matters, they can’t unsee that.  Eventually the obvious will become apparent to everyone – we can make the entire system work better when we don’t hurt children.

How did you learn about Child Life?

I know this is hard to believe, but I can’t remember not knowing about Child Life.  I’m sure we didn’t have Child Life in pediatrics when I was training, but perhaps because it always seemed such an obvious need when I first began seeing Child Life specialists, perhaps I assumed they always been someplace, just perhaps not in my department.  I carried distraction toys on my stethoscope and in pockets since I began training, it just seemed logical.  My oldest was born my first year of residency, so I had a natural connection to what worked for different ages from the beginning of my training.

Resources for doctors, parents, nurses, and child life specialists

In this TEDMED Talk, Amy speaks to the increase in vaccinations in early childhood, and the impact it has in increasing needle fears later in life.  Visit her  Buzzy website to find out more about the most cost effective way to prevent needle pain in infants and children.
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Child Life Uniting for All Children

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This morning we woke up to a new normal, which includes a stark awareness about the level of bifurcation in our country. Some folks are celebrating the prospect of change  — some are very afraid about what this change might mean for their future. There is no question that we face an enormous task in figuring out how to work for the common good when many of us have differing views of what that good should look like.

I believe that Child Life Specialists are uniquely poised to address this rift. We reach out  from a strength-based, cooperative front, moving forward from a place of deep inquiry, witnessing and advocacy for those in our care. No matter what our political beliefs, we know the value of the developmental interaction approach. We meet the needs of children and families first by asking what their needs are, then by listening and validating, and then by empowering them to find expressive outlets and coping strategies to address these needs. We facilitate children’s inner abilities to make meaning out of their individual path to healing, whatever that may look like. We do all of this while taking into account the child’s developmental needs and the family’s resources and cultural beliefs. These beliefs often conflict with our own, but we consciously choose to serve our patients with kindness and respect, despite our differences. We seek the common denominator of humanity to find common ground to work from.

We also do this, side by side with medical staff, who often see things very differently than we do. We work in an interdisciplinary fashion to cooperate within the system, being positive members of the team while we gently, firmly advocate for some approaches that may be outside the present medical culture. We make mistakes. We stumble and fall. But we learn from them, reflect upon them with bravery, and get up and try again.

So, let us remind ourselves of the tool kit we have right at hand. Our training. Our leadership skills. Our humanity. Our deep desire to serve and make the world better. Let’s make sure that every staff member we work with, every child in our care, every family member, feels safe and respected within the healthcare environment. Let us ask how they feel, listen to what they tell us, and provide witnessing and reassurance that we will do whatever possible to ensure that their safety and comfort, no matter their color, socioeconomic status, country of origin, religion, gender, sexual orientation or family makeup.

A resource: What do we tell the children?

We can do this.

“Peace in my heart brings peace to my family. Peace in my family brings peace to my community. Peace in my community brings peace to my nation. Peace in my nation brings peace to my world. Let there be peace on earth, and let it begin with me.”  (As Spoken at the Sacred Center- Manhattan, NY)

 

And listen to this:

Van Morrison Till we get the healing done

The Child Life Maker Movement: Loose Parts Impacting Healthcare

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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.

 

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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.

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

 

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

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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.

 

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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.

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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?

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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.”

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How We Helped Our Kids Cope with a Pet Loss — Child Life Mommy

He was 13 years old, or at least that was our guess. We rescued our feisty French bulldog, Bugz, 11 years ago and he instantly became a family member. He was there for our milestones of marriage, career change, new home and children. He had some challenging quirks to him caused from an abusive past, […]

via How We Helped Our Kids Cope with a Pet Loss — Child Life Mommy

Doll Ambassadors: Providing Comfort to Kids with Cancer

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Guest Blogger: Rosanna Bernstein – Founder of Bee Brave Buddies

When I had cancer and was going through chemotherapy, a white, curly haired stuffed poodle that one of my daughters gave me sat right on the pillow next to me at all times. I named her Gigi. Just looking at the quirky turned-up smile on this puppy`s face always gave me a feeling of comfort and made me smile.

I was diagnosed with Chronic Myelogenous Leukemia in 1998. I was in treatment for 3 years and was becoming sicker. A trial in its second phase for a new chemotherapy medication, specific for CML, now called Gleevec, was in its early stages at that time.  I was eventually accepted into this trial, and within several months I went into a remission. This chemotherapy was one of the first magic bullets, a medication targeted to treat the specific genetic mutation.  Although I still take a chemotherapy pill each evening, I have been so fortunate to be healthy and in remission to this day.

I was so grateful, that I decided I wanted to help others.

Through the years I have had several businesses: Yummy Gram, a gourmet basket company, Rosanna Hope Designs, a millinery and hand bag design company and Baby Bonbons, an online shop with vintage lace children`s clothing designs and accessories. During this time, I designed many original designs for baby blankets and matching pillows for the Baby Bonbons shop. I have always had a passion for art, beautiful laces and fabrics.

But, puppy Gigi always lurked in the back of my mind. I could still see that funny little face, and I got a warm feeling each time I thought about Gigi. I remember the soothing, inner peace I felt snuggling her. This feeling gave me the idea to combine my love of art and design with my desire to give back.

I combined my love for fabric and my whimsical children’s digital art drawings to design my original three Bee Brave Buddies dolls: Buddy Brave, a superhero doll for boys with magical powers, his twin sister, Bestie Brave, a superhero doll for girls, who is a true new best friend, and Catie Cuddles, a doll dressed in fancy lace who loves to cuddle and snuggle. I hope to use this same art process to design a line of Bee Brave Buddies Adventure books and other gifts for children.

My dolls were designed to become a new best friend to children who are in treatment for cancer or other childhood illnesses and who need a big snuggle and some magical secret powers to be brave. The three dolls are designed with beautiful bald heads. The girl dolls have special words printed on their long leggings: giggle, snuggle, love, dream, brave, cuddle, smile, laugh, hugs, play, dream, hope.

The dolls are also educational. An adult with cancer can use the dolls to explain hair loss and other treatments that children will face. Each doll comes with a matching hat or headband and the superheroes come with silky minky capes. The dolls have very soft plush pillow bodies to hug and love. Each doll comes in Caucasian or African American descent. Our dolls are printed and made in the USA. They are completely washable.

I have personally been giving my dolls to children with cancer since February of 2015. Bee Brave Buddies have been shipped to children across the USA and to several countries. We are excited to announce that we have now received our determination letter from the IRS and we are a 501(c)3 nonprofit. This will allow us to make and deliver dolls to children battling cancer across the country and beyond with your help and support.

 

What can you do to help? 

We are looking for doll ambassadors, an integral part of our team. They are like the generals in our army, helping us make big decisions: They locate hospitals in their area, make child life connections for delivery of dolls, are available for the doll presentations, help secure local press and manage social media regarding their particular hospital. Doll ambassadors also reach out to help us find local contacts to sponsor these boxes of dolls delivered to their local hospitals, either on a one-time basis gift or an ongoing monthly program.

Our new initiative, The Bee Brave Buddies of the Month Club allows a sponsor to send a box of ten dolls per month to a designated hospital. Our Christmas Holiday program encourages families or businesses to celebrate a holiday they will fondly remember, one in which they gave back to others. Our creative doll ambassadors put together teams from family, friends, businesses, corporations, church groups, school groups or sports teams that would like to rally for our cause. These are just a few examples of groups that can help us touch the lives of these children in a very profound way. Our dolls give the children comfort, courage and confidence. These seriously ill children only want to be normal and play! When the child smiles, the caregivers smile, and all of the medical staff smile. It is infectious! Our dolls provide these smiles when the children are hugging and loving them, much like my Gigi puppy provided to me.

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Our mission is to put a Bee Brave Buddy doll in the arms of all children around the world in treatment or recuperation from cancer who need a hug to help these children feel brave and to provide emotional support to children and young adults with cancer and other serious illnesses. Any child battling cancer can receive a free Bee Brave Buddies doll to love.

If you would like to make a difference in the lives of these sweet children, drop by our web site www.beebravebuddies.com to learn more about our nonprofit and please join us today.

Warmly,

Rosanna Hope Bernstein

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Bombings & Shootings & Stabbings, OH MY!

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We all might be feeling on edge these days. I know I am after the bombings in my hometown of NYC this week. But I have coping skills as an adult. How hard must it to be to be a kid and see this stuff on TV? How do we help our children feel safe as we do our best to keep our own fears in check? We know that children need help to process these unfathomable occurrences. The bad news doesn’t just go over their heads, and they will draw their own conclusions and suffer inner fears alone without adult support. The trouble is, what do we do when we don’t know what to say? When we don’t have answers?

Thank goodness, there is some great expert advice out there to guide adults in helping kids process  disasters, both natural and manmade.  Here are some links to get you started.

Discussing Tragic Events in the News

Addressing Extremism

Talking to Children about Shootings

Stay safe out there, and help children in your care to feel safe by monitoring their exposure to news on TV and the internet. Whether you are a parent, caregiver, or if you work in a hospital or school setting, gently encourage adults to keep TV/radio news off in the presence of children, and to be aware of children’s listening ears when discussing events with one another. And then, begin the tough discussions.

 

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.

Driving the Camel: Installment #14

 

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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.

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“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.

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  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.

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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.

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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.