Resilience

Wonders of The World: Hope & Resilience Amidst a Pandemic

~ Deb Vilas ~ Leave a comment
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.

Wonder

~ Deb Vilas ~ 3 Comments

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

–Natalie Merchant

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

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

 

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

 

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

 

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