Glue & Ballast

I am wondering how many people out there are feeling a bit broken these days. Whether you are parents, teachers, child life specialists, essential workers, or caregivers, whether you live alone or navigate relationships and conflicting needs at home amidst the pandemic, are there times when you feel — well — certainly not at your best?

Monday was a day like that for me. I was following my typical morning routine that involves prayer online with the Church of the Heavenly Rest. I settled onto my couch and lit a candle while my laptop booted up. I signed into my email and clicked on the Zoom link for the video connection …… and all I got was an ERROR message. Thank God I was quickly able to find a workaround. I dialed in with my phone while I reached out via email to Lucas, the program organizer at the church, and simultaneously tried another browser. I was into the service in a minute or two. You would think that I might feel accomplished at this feat of multitasking, but here is the thing. Even though I was functioning and problem solving in real time, I was also bawling my eyes out, with all the unleashed vigor of a toddler.

And I cried so hard that there was no way I could turn on my video or microphone once I got into the service. I think I scared my dog too.

Since the pandemic began, I have only missed one service, and that was for a medical appointment. Amidst the tears yesterday, I was struck by how dependent I’ve become on the routine and comfort that morning prayer provides me: the reverend Matt’s steady, soothing and cheerful presence, the stalwart group of parishioners, who, like me, show up every day, helping one another carry our collective burdens and celebrate our joys. The predictability of the liturgy.

In that brief moment of disconnect, I felt panic at the thought of not being able to join in the service. The panic was followed by a crushing wave of grief, all out of proportion to the situation, but greatly indicative of the accumulated losses of these past 5 months.

The misery of the moment didn’t dissipate. It sucked and pulled at me like quicksand for most of the day. It wasn’t until late afternoon that the despair began to lift. But I can see the seeds of recovery planted throughout the day, some even in the midst of my emotional tornado. The kindness and speed with which Lucas responded to my distress. A chat with a friend midday. In the early evening, another daily ritual, FaceTiming my parents. Our conversations are as predictable as liturgy – we share the highlights of the day, whether or not my folks went for a drive to their local farm, or my dad went for a walk. We ask one another what we are having for dinner, I ask what wildlife they’ve seen, and my dad tells me a bad joke that he saw on the internet and memorized just for me. My mom busts my dad’s chops for hogging the phone, and then joyously exclaims, “There you are!” when he turns the phone her way so that she can see me.

These conversations are the glue and ballast that hold me together.

But there’s more to it. After I wished my parents a good evening, a friend called me and asked if I could spare some time to listen to her about the hard day she’d had. While I listened, nursing a cup of tea, I remembered what Matt had said earlier that day, that when people are struggling, they don’t always need advice. Sometimes, the listening, the gentle witnessing, and just asking the right questions is the way to go, so that our loved ones can access the answers within themselves.

Later in the evening, the phone rang again. This time, it was a child life colleague seeking some support as she prepared for a radio interview. After we discussed her plan of action, she went on to share some great stories of how she has been using Loose Parts to help hospitalized children make meaning out of their medical experiences. When I hung up the phone from these conversations, the change in my mood was nothing short of remarkable. How could it be, that during such a low day, when I felt so beaten down and miserable, the universe could make such good use of me? If loose parts are what children need to make sense of their suffering, it seems that encounters with others, be they friends, colleagues, family or strangers, can serve as our loose parts. Our mutual conversations and witnessing can bring solace, perhaps a shift in perspective, and sometimes even an answer or two. The amazing part is that we don’t have to be at our best to show up and make a difference.

I have a porcelain angel who has knelt in a state of constant prayer on my bedside table since I was a small girl. She is somewhat worse for wear, battered, stained and the tips of her wings broke off years ago. But she brings me comfort every night.

It’s not just how others shore us up when we stumble. It is how even in our brokenness, we can be the glue and ballast for others, and in doing so, burgeon our own healing and open our hearts to the presence of a love beyond our understanding in the midst of our suffering.

For your listening enjoyment, click on the link below.

Blackbird by the Beatles

Wonders of The World: Hope & Resilience Amidst a Pandemic

Camp Klicek, Malejovice, Czech Republic

Playing at a Distance

As a consultant working with the child life team of Sabara Children’s Hospital in Sao Paulo, Brazil, I am so grateful to be in close contact with them during the COVID19 crisis. I meet regularly with the clinicians online to discuss their work with children and families (currently they are working at a distance, as they are sheltering in place). In order to support their challenging work during the pandemic, we have spent the last several sessions together participating in creative arts activities, such as the ones I have been blogging about. Today, we did one of my favorites, Wonders of the World, adapted from Rebecca Carmen’s Helping kids heal: 75 Activities to help children recover from trauma and loss. As we play together via What’sApp, the team benefits from the parallel process of participating in a relaxing, inspiring activity which they can then bring to the children and families in their care.

Shizuoka University, Japan

Activity Instructions

Introduction:

The Wonders of the World activity is meant to instill hope and resilience in children and adults who may have difficulty picturing their lives beyond the walls of sheltering in place. It has been used with hospitalized and traumatized children and teens for the same reasons. Sometimes it is hard to imagine our lives beyond the present situation. It can be a challenge for us to move our bodies when we are leading a more sedentary existence. This activity is a great way to get us up, moving, and interacting physically when we do a life-sized body tracing. More conversation and joy tend to occur when we do it on the larger scale, but it still has therapeutic value and is enjoyable when done on a smaller scale with the outline of a body on drawing paper.

I have conducted this activity with nurses, hospital play specialists, social workers, psychologists, hospital administrators, and children in the Czech Republic and Japan. Thank you to the Czech and Japanese students and professionals in the photos.

Materials

  • Drawing paper with body outline (Links to an external site.) or butcher paper on which to trace your body, should you decide to do this with a friend or relative. Participants can also be invited to draw their own body outline on a piece of paper.
  • Pencil/Pen
  • Crayons/Markers/Watercolor pencils/Paint

Instructions:

You can use the body outline provided, or on large butcher paper, whiteboard (or sidewalk chalk if you want to do it outside!), have someone trace your body. The body tracing can be done lying on the floor/ground or standing against a wall.

Tokyo, Japan

Decorate the body outline with facial features and clothes.

Imagine your life in the future outside the pandemic quarantine. Then draw/paint the following items on the outline or anywhere on the paper that seems appropriate:

  • What you want your eyes to see in the future
  • What you want your ears to hear in the future
  • What you want your nose to smell in the future
  • What you want your mouth to taste in the future
  • What you want your heart to feel in the future
  • What you want your hands to do or make in the future
  • Where you want your feet to take you in the future

Activity Tip

  • Consider playing music in the background to accompany drawing (kid’s choice), maybe a childhood favorite.
  • If a participant is reluctant because they feel they cannot draw, encourage them to pretend they are an artist.
Jess in Sao Paulo, Brazil

Reflections

The sharing out is one of the best parts of this activity, both during the artwork and after.

Today, Jess shared: “When I imagine what could happen, I think of my friends all at the bar – so here we all are hanging out at the bar. I am missing my muay thai. The classes were in the middle of the process of my self perfection. I want to go to the beach and the sand and to smell the smell of the beach. The wave represents things coming and going.”

Dora in Sao Paulo, Brazil

Dora shared: “I put different colors for different feelings and senses. I want to be in nature, because when we go out now, it is just buildings and concrete. I want to hear the wind in the palm tree. I am listening to music a lot. It helps make the days more light. Here is a bird singing. I would like to hear news about a cure for COVID, so I put medicine here. I want to see landscapes, the Christ the Redeemer in Rio, because my best friend lives there and I won’t be able to be there now.

I want to smell the wet ground after rain. I would like to eat the cheesy bread of my grandma, a very special recipe. I would like to feel myself with all things that make me feel safe. We aren’t in a safe context right now. I want to touch things and people and hugs, touching things without fear. My feet want to go to the sea and the sand, and I also put paths to different routes and ways to walk without fear and with freedom.”

Leandro in Sao Paulo, Brazil

Leandro shared: “I think like a kid. At first I was doing philosophy, and it was too hard to think of big ways to change the world because I am so tired. But then, I tried smaller concrete things, and it was easier. I would like to be in nature now and to eat vegan cheese bread and good coffee.

My feet are on the beach between the water and the sand. My hands hold an electric guitar because that is what I want to hear. My eyes want to see the forrest and to smell the forrest – the trees and the green.

My heart is a yin yang because I want to feel good things, but I understand that it doesn’t happen every time. I understand the balance of the good and the bad. “

Thank you, Team Sabara, for doing such great work all the time. You inspire me.

Family Connection in Hard Times: Play Maps

Sheltering in Place

Welcome to the new normal, at least for now. In this time of forced seclusion due to COVID19, nuclear families are spending more time together than ever before. Parents are juggling so much – keeping their family safe from infection, their own work, profound stress if they aren’t working, their children’s schooling, their worries about vulnerable and elderly family members, and everyone’s myriad of coping mechanisms – some functional, some less so. We are all doing the best that we can, and sometimes it just doesn’t feel like we are doing a great job. But, hopefully, we have compassion for ourselves and one another, and we forgive ourselves when we lose it. Then we regather, and keep putting one foot in front of the other.

There may be some silver lining for many families though. Perhaps there are moments of unexpected joy and closeness. Maybe we are putting down our devices and grabbing moments to play games, read aloud, enjoy nature, watch movies, cook together, or just to snuggle. In this vein, I want to share some of my all time favorite family activities over my next several blogs , They were designed for child life specialists to do with hospitalized children and families, but they are perfect for family fun at home. They are all affordable, need minimal supplies, are simple and guaranteed to spark fun and connection. The one I will focus on today is called Play Maps.

This Little Light of Mine

To Look or not to Look: That is the Question

In times of uncertainty, when there is so much out of our control, one of the things that is within our control is how we show up for others. And how we show up for others often has a lot to do with how we show up for ourselves. Since my posting last week, my self care regimen has taken on a whole new look — prayer and yoga are now online rather than in person. Each day I have decisions to make about how I spend my time, who I am in contact with via phone and video conference, and how I interact with others.

Child life specialists are trained to acknowledge and respect the many and varied coping mechanisms of children and families in hospitals. We are trained to assess, respond to, and expand these coping skills. For example, some children like to watch when they are undergoing an iv insertion. Others would prefer to close their eyes, blow bubbles, or search for items in an I Spy book. Some children want to know every detail about their diagnosis and treatment, while others prefer to skip the details.

Kids at Home? Staying Sane Through the Power of Play

School Closings

During this time of the coronavirus, school closings are causing tremendous stress for all parents, especially working parents whose child care options are limited or nonexistent. While your children are at home, providing a wide range of play activities will help ratchet down anxiety, promote healthy expression of feelings, and it might even be a unique opportunity to strengthen your relationship and attachment to one another. As a child life specialist, I have spent my career in hospitals helping children and families play as part of the family-centered care approach to healing. Today, I am going to share some ideas for keeping your children calm, happy, and occupied.

Self-Care as an Antidote to Coronavirus Anxiety

When The Caregiver Needs Help


We are all facing personal and professional fears regarding the coronavirus. Everywhere we turn, we are saturated by information, much of it needed, some unnecessary, some sought, some dropped in our laps without our consent. As a dear friend said to me today, there is a lot of noise but not a lot of guidance. We are doing our best to stay calm so that we can care for the children and families in our midst, as well as for our own families. 


The question is, what do we do to calm our own nerves, so that we don’t unwittingly increase anxiety around us? How do we keep from contributing to the growing hysteria, while still remaining prepared and logical? A piece of the answer lies in self-care.

Self-care is certainly something that child life specialists know a lot about. But sometimes we need to remind ourselves to reach for it, especially in times of challenge.  I want to share with you all what I am doing for myself, and then list some added suggestions that might be helpful to you. 

Home Away from Home

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How often is it in life that we truly feel at home in a place other than our own home? What are the ingredients that allow us to feel comfortable in our own skin, undefended, and at ease?

I seem to have stumbled upon many of these intangibles as I return for the seventh time in five years to the Czech Republic. Ostensibly I come here for work – collaborating with the Klicek Foundation to grow hospital play work in their country. We travel to various cities and venues, giving lectures to students and professionals of medicine, nursing, social work, psychology, and play work about the philosophy and logistics of providing humane, family-centered care to children and families facing medical treatment. I join them in the summertime to volunteer in their hospice summer camp.  But what happens here is so much more than work.

With each visit comes an immersion in the Czech culture, and more specifically, the culture of the family who sponsor my visits. In between travel and lectures, we gather at their hospice and home in the tiny village of Malejovice, about 40 kilometers southeast of Prague in the Bohemian countryside. Here in a century old schoolhouse on a small farm (replete with donkey, sheep, chickens, many cats and a dog), the Kralovitzes welcome children and families who seek respite and comfort from lives affected by illness, disability, and loss. It is not a hospice in the way most of us would imagine. It is neither a medical facility nor a place where children go to die. Rather, it is a retreat where individual children or the whole family can relax in a natural environment, receiving nurturing in the form of companionship, a warm and caring listening ear, opportunities for play and exploration of the surrounding fields, forrests, orchards and gardens, and astoundingly good and healthy food. One falls asleep to the quiet darkness of the countryside and awakens to the bray of the donkey. It is, quite simply, magic.

Daily outings to local farmers and vendors, for cabbage, potatoes, apples, bread, butter and other essentials are interspersed with visits to hospitalized children and home visits to grieving families in neighboring towns and cities. No trip seems too far if someone can be served. This past weekend, my hosts drove a six hour round trip journey so that a teen could enjoy a visit to the hospice following a hospital discharge post heart- transplant.

Over the past five years, I have joined the family in celebration of the anniversary of the Velvet Revolution, decorated Christmas gingerbread cookies, accompanied them to church, fetched water with them from a natural spring, traveled with a theater troop visiting holy places throughout the country, played with Roma children in their neighborhood, and viewed many monuments such as the sculpture memorializing  the children of Lidice, murdered during World War II,  and the sculpture honoring Jan Palach, the young man who set himself on fire in martyrdom in Wenceslas Square during the Velvet Revolution. We have traveled to the far corners of the Republic, and visited neighboring Poland and Austria. With each visit, Marketa draws up a map and schedule to help orient me. 

We have explored curriculum, translated documents, done voiceovers for video, co-presented at global conferences, met with political leaders, and have appeared on local Czech TV.  We have driven countless hours in cars, vans and their iconic 1950’s bus, stopping for never-ending errands and house calls.  We have shared life stories, played music, laughed and cried (Well — I’VE cried!) and sat talking by the fireplace late into the night. 

And so perhaps this is the secret ingredient, the simple yet rare experience of being included in everyday family life while pursuing a shared vision, that ill children and families everywhere might feel witnessed and safe. What we wish for them is what I end up experiencing in a profound way.

The Knot in Your Throat: Love, Death & Resurrection

Thalia self portrait

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

Flashback — 1998 —

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

thalia mask

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

 

 

 

 

 

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

 

 

 

 

 

 

 

 

Kenya Child Life Program Spotlight Continues: Liz Kabuthi

 

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Liz Kabuthi prepares children for surgery using a book of photos

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

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

Sustainable Child Life Services in Kenya

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

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

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Jayne Kamau

 WHAT INSPIRED YOU TO BE A CHILD LIFE SPECIALIST?

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