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.

Play Maps

In an article in the Child Life Bulletin (CLC, Winter 2014), Play Maps and Life Lines: New and Borrowed Techniques for Crossing Cultural and Generational Divides (Vilas, 2014), I explored expressive arts activities that bring families together.

When we think of family closeness, perhaps play is not the first modality that comes to mind. However, play is a universal language. All adults played at some point in their childhoods. With this in mind, play maps are a great way to revisit our childhood play memories and celebrate those of our children and parents. It is a wonderful activity to do in person, as well as a multi-generational activity to do via video chat with your parents and kids together. The technique is borrowed from other disciplines (McLaughlin, 2010; Gregg, 2002) and I tweaked the activity to fit the needs of child life specialists working with children facing issues of loss and illness. The goal of the technique is to connect families with inner resources of coping and hope through heightened awareness of past joys and obstacles. An equally important goal is empowering connection, understanding, and empathy between family members through conversation about similarities and differences in memories of play and life experiences.

The play map is an expressive art activity designed to connect children and adults with pleasurable memories of play. It reminds the child of past joys as well, helping them imagine present and future times of happiness. When done in tandem with a caregiver, it builds shared appreciation between adult and child. If your child is too young to draw representational art, or has a physical disability that prohibits them from drawing, they can still act as an art director and tell you what to draw.

Materials

• Paper

• Pencil/Pen

• Crayons/Markers/Water color pencils/Paint

Instructions

Setting the Stage

Gather your materials, and set up a comfortable and inviting space to draw. A kitchen or dining room table work well, but you can also gather in whatever living space is most comfortable. You might want to set the mood by having some music in the background. If you are able to connect in your parent(s) via a video chat or phone call, by all means bring them into your shared space to participate.

Drawing Together

Ask your child(ren) to draw a map of a place where they like to play, showing the place, toys, types of play and people involved. They can draw a place representing outdoors or inside, or one of each. It can be an arial view, a floor plan, or any view that they choose. There is no right or wrong way to make a play map. Perhaps show them a simple sample of a map that you draw on the spot, because that will show them that it doesn’t have to be fancy and doesn’t require any special artistic ability.

While they are drawing, you do the same, thinking about childhood memories of places you played, people you played with, and the type of play you most enjoyed.

Show and Tell

When you are all done, compare your maps and share memories and details about games, rules, toys & playmates. You might want to videotape each person’s share out. I treasure this video of my mom reminiscing about ice skating on Penny’s pond.

How are your maps different and how are they the same? What did you learn about one another that you didn’t know before?

I wish you enjoyable conversations and discoveries about one another. Please share any feedback about your experience in the comment section of my blog, or email me at debvilasconsult@gmail.com. I would love to see your play maps!

Thank you to Ngawang, Brianna, Joyce, Kim, and Elyse for allowing me to include your 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.

Well, when it comes to coping with uncertainty and isolation, we all have different ways of self soothing. My husband likes to watch the news, but I find my anxiety ratchets up considerably when I hear statistics about numbers of coronavirus cases and upsetting information about the financial challenges in our midst, especially in the evening before I go to sleep. It occurred to me yesterday how it might be helpful for us all to:

  1. Reflect upon our coping mechanisms – what helps us? What upsets us? Knowing what triggers our anxiety, worry, or sadness is a vital step to being able to protect ourselves and self soothe. You might wish to journal about this, create some art expressing your preferred method of coping, or even a 3-D loose parts representation of your hope and resilience.
  2. Explore the coping preferences of your family members and friends. Whether you are all at home together, or you live separately, it is a good thing to know what your family and friends need to feel safe and calm at this time, especially if it is very different than how you cope. The only way to know is to ask.
  3. In accordance with what information your loved ones share, make a concerted effort to self edit when you speak to others. When you are in conversation with someone on the phone or online, instead of launching automatically into virus-speak, ask them how they want the conversation to go. This isn’t meant to make COVID 19 talk taboo, but we all need a break at some point during the day from the constant barrage of news.
  4. Tell loved ones what your favorite method of coping is, and what is a challenge for you. Sharing coping strategies can ignite great ideas in others. As far as challenges go, I asked one friend to not discuss financial news with me. I told another that I am avoiding the news in general, and that I would appreciate it if we didn’t discuss the news when we speak.

What Role Will You Take?

Another way to approach this issue is to ask yourself, what role do I wish to play in this adventure?

  1. Newscaster: If you are keyed into the latest breaking news, you might be able to be a trusted source of information for your loved ones. They can ask you for the latest updates. But do your best to leave any dramatic flare aside, and to set aside a time to share, rather than shouting out every news banner that appears on your screen
  2. Advice Giver: This is one of my favorite roles! Can you tell? Haha. This is fine when it comes to blogging, but when a friend needs a little empathy, jumping in with advice could make them feel overwhelmed and invisible. Your friends and family might appreciate it greatly if you ask them, “Do you need advice or empathy right now?”
  3. Listener: A good listener may hold back on advice, but the role is still an active one. You can express caring in so many ways as a good listener. Here is a link to a brief handout on active listening skills.
  4. Comedian: Some people are blessed with a great sense of humor. Jokes, quips, memes, and funny videos are appreciated by most. A good laugh is great for your immune system!
  5. Worrier: You might be tempted to share all of your worries with people. Instead, consider creating and decorating worry jars from empty jam jars. Whenever you have a worry about something outside of your control, write it on a slip of paper and put it in your “Big Worries!” jar. When you have a worry that you can do something about, put it in your “To Do Worry” jar. Then, when you have the energy and time, address the manageable worries with action.
  6. Expert: Do you have a specific skill that may be helpful to others? For example, many people, especially the elderly, may need tech advice and expertise during this time of isolation.
  7. Volunteer: In the same vein, where are your expertise, energy, and hands most needed? How can you serve your community at this time? You might want to reach out to a school, a religious community, a shelter, or a food pantry.
  8. A Good Neighbor: If you are going to the store, ask a neighbor if they need anything. If you have neighbors or friends far away who live alone, check in on them. Ask them what they need.
  9. Little Light: It doesn’t take any expertise at all to shine the light on people’s strengths, helping them see their own hope and resilience. Whenever you are in contact with anyone, look for opportunities to be the light in the darkness, and encourage them to light their own candle for themselves and others.

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.

Loose Parts

Some of the best “toys” are what we call “loose parts”, stuff you have lying around the house or in your recycle bin. Kids love to create, and cardboard boxes, toilet paper rolls, string, wood, paper, popsicle sticks, cotton balls, yarn, chopsticks, tape, glue, cloth, q-tips, pipe cleaners, art materials, any recyclable item, shoe boxes ….etc. are all inventions waiting to be imagined. You can put out materials without any direction, or you can give your children prompts such as “Make your own 3-D version of a corona virus”, or “Build something that would make this world a better place, either reality-based or make believe.” Once they get started, projects may morph into other ideas.

Kids Need to Move Their Bodies

Kids need to move their bodies every day. If you are able to take them outside to run, climb, and jump, that is terrific. But if you are stuck inside, children can do jumping jacks, push ups against a wall, with feet or hands, and other exercises to release pent up energy. Make exercise a part of their daily routine, and everyone will be the better for it.

Playing with Grandparents

Many of you may be concerned about your parents, and checking in with them via video chat can be good for the whole family. Play maps (see article within this publication) are a great connecting activity to do via video chat that can spark many shared stories. All you need is plain paper, pens, pencils, crayons or markers, and your childhood memories. Draw a map of your indoor play space from childhood, and then your outdoor play space, filling in all the play activities you recall from your childhood years. Have your child do the same, and your parent too. Maybe play some favorite music in the background while you all draw. Then share all the stories behind your drawings. You might be surprised what you have in common, and what play activities you’ve never talked about. Consider video taping the activity to save these wonderful memories.

Indoor Forts

Kids love to build forts and hide in them. A bedsheet or table cloth can turn furniture into a fort. Children can have a picnic, read, play, and even sleep in their fort for a change in routine.

Medical Play

Kids young and old enjoy playing about things they are trying to understand or are worried about. If you have a medical play kit at home, bring it out with some dolls or stuffed animals, and encourage your children to create a doctor’s office or a vet clinic. If you can, add real life medical items, like gauze, pill bottles, syringes. Give them a pencil and pad to write down doctor notes on. This activity gives children the chance to ask questions about the coronavirus. Try your best to answer questions honestly and simply. Try not to direct or interrupt their play, as they know exactly what they need to play out.

Sensory Play

Sensory play is great for toddlers and preschoolers, but it is also soothing for older kids and adults. It can be as simple as a bin of soapy water with straws, leggos, and bath toys. Shaving cream, sand, making homemade play dough, and finger painting with pudding (and then eating it) are a few other examples of sensory play. Pinterest has many additional ideas and instructions.

Old Fashioned Games

Perhaps you will get some ideas from the play map activity from your parents.There are a ton of old fashioned games that children have played over the generations that don’t need props or toys. Hide and Seek, clapping games, pretend play, guessing games, and charades are some examples. If you play these games with your children, allow them to take the lead as much as possible. They may make up their own rules, which is great for their imagination.

String Games

All you need is some string or shoe laces, and you can teach your child some great string games and stories. There are a ton to learn on youtube, and maybe your parents have a few up their sleeves as well.

Worry Dolls

Use loose parts and art materials to create personal worry dolls. Children can tell these dolls their worries and the dolls will do the worrying while you child sleeps, so that s/he doesn’t have to. another activity to release worries involves making a play dough volcano, writing down worries on scraps of paper, placing the inside the volcano, and exploding it. There are plenty of volcano recipes on the internet.

Board Games

Many of us have great childhood memories of playing board games and card games. If you have a few decks of cards, your kids can use youtube to learn a new (old) game such as Spit, War, Canasta or Pinochle. Building upon the loose parts concept, consider having your kids create their own board game and then play it with one another. The cooperative spirit of making a game can bolster sibling connection.

Minimize Screen time

The last thought I want to leave with you is this. This time, although stressful, may have a silver lining. It may be the jumpstart your kids need to get off of their devices, and into their imaginations. Encourage healthy limits on the amount of screen time your youngsters partake in. Involve them in your daily chores of cooking and cleaning, and play, play, play!

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. 

My Self-Care Regimen

1. When I awake and fall asleep, I practice gratitude, going over those things, large and small, that I am grateful for. Sometimes I am noting the most basic things, that I have running water and food for the day. Gratitude is an antidote to fear.
2. I pray every morning in the shower. I specifically practice loving-kindness meditation, which gets me centered in a feeling of usefulness and connection with the larger world. I want to give a shout out to agnostics and atheists here – sometimes secular meditation can have some of the same benefits as prayer.
3. I play tug of war with my dog each morning before taking her on a mile and a half walk around the Reservoir in Central Park. 
4. I read daily devotional readings, only a paragraph or two each, before I practice meditation for ten minutes, in a quiet place, breathing deeply.
5. I journal. Writing clears my brain.
6. I see a therapist – I hadn’t done this in years, but when my anxiety went up several notches recently, I knew it was time for a “tune-up”. 
7. I am finding myself searching for a spiritual community, trying out different places of worship as I do not belong to one now. I have found that many places of worship offer candlelit prayer services in the evenings.
8. I am trying to reach for my creativity and sense of humor. Sending funny memes to friends, making jokes about us all being in the same boat (not a CRUISE SHIP!!), and singing my favorite songs out loud while washing my hands, even in public, helps. The Phantom of the Opera and Bruce Springsteen are my muses as of late. The song, “This Little Light of Mine” is also a goody.
9. I am spending as much time as possible with good friends and loved ones. 
10. I watch stupid TV, the Batchelor and Survivor are great for mindless escapism.
11. I practice restorative yoga and yoga nidra, which not only recallibrates my nervous system but also helps me fall asleep. 

Child Life Activities

Now, these are things that may seem simple. But we child lifers have additional secret weapons. Consider these added activities:


1. Beads of courage. Why the heck shouldn’t we create our own beads of stressors and coping strategies, making an interwoven chain of our challenges and our strengths? A visit to a local bead store can set you along this path.
2. Make and throw some toilet paper targets. Getting your feelings out of your body and laughing are two great side effects of toilet paper targets. Just hang a large piece of chart paper on your bathroom wall or outside where you can make a mess. Draw all the things on it that are making your anxious. Then, take huge wads of TP, dip them in water, DON’T wring them out and chuck them with all your might at the paper.
3. Make a volcano out of play dough.. Put all your worries inside it. Blast off!
4. Purchase a worry eater.
5. Use loose parts to create your version of the coronavirus. Do this with your team at work or with your family.
6. Make up funny handwashing songs. Have a contest between you and your colleagues and friends. 
7. Make your own cloth face masks and decorate them in creative and wild ways. 

Other Considerations

1. If you haven’t considered therapy, now is a great time to do so.

2. Think about whether anti-anxiety medication might be helpful for you. Speak to a mental health provider about psychopharm help if needed. 

3. Try to limit your exposure to social media. Or at least choose a certain time of day to check in rather than ingesting a constant stream.

4. Use screentime to your advantage by downloading some great apps, such as: Calm, Insight Timer, Breethe, Headspace, Anxiety Relief, and iChill.


I would like to invite each and every one of you to take a photo of your own self-care activity and share it on a reply to this blog. I think that it would really help us shine a light on our collective courage. 


Be Well. Be Safe and Shine your Light!

What Am I Good At? Building Self Esteem through Play at Camp Klicek in the Czech Republic

Time to Explore:

The long days of summer, with the sun rising at 6:30 AM and setting close to 10:00 PM, lend themselves to unhurried, lengthy swatches of time. These hours can hold many opportunities for children and adults to engage in unfamiliar activities and discover new skills. Time for free play and exploration is a commodity during our workaday, technology-filled lives, but Camp Klicek in Malejovice, Czech Republic provides exactly this to children and families affected by illness and loss.

In the photo above, two seven-year-old boys get their hands on a saw, as they break down a tree branch in preparation for the campfire that all the campers will enjoy. Besides being fun, the boys are building their muscles and coordination, getting some great proprioceptive feedback, practicing cooperation and self regulation, not to mention problem solving. Their self esteem gets a healthy boost as they accomplish something new and contribute the the camp community. These are some of the attributes of spontaneous play that adults should take note of as we consider the developmental, social and emotional needs of all children

Structured Games

Sometimes structured games can lend themselves to learning through play that is so much fun that kids forget that they are learning. On this day, the campers were divided into three teams, and each team had four tasks to compete. They had to find a way to measure a liter of liquid, a kilo of sand, the length of a meter, and the span of a minute, all without the use of measuring devices. The camp was alive with children gathering sticks, pouring water, scooping sand into sacks and counting out loud and in their heads, as the teams competed to see who could get the closest to the actual measurement.

Group Play

On another day, volunteers from the Accace Corporation brought a day of activities to the campers. In the morning, they set up tables in the summer garden and mess tent, including paper arts and crafts, flower pot decorating, a drink mixing table with great recipes for virgin mojitos, margaritas and pina coladas, and a beauty salon station with face, body, and nail painting. Kids explored their artistic sides and wore their art with pride.

In the afternoon, the company volunteers set up an activity course in the forest, replicating what is entailed in working for a big company. My favorite station was the accounting department, where the employee had to take a fist-full of invoices and chase after the client to whack them with the papers to make them pay their bills!

And the other one I loved was a station where kids were taught the art of communication. They were told that communication is the lynchpin of success, and in order to practice communication skills, they had to stand on one side of an easel and describe a picture to their coworker on the other side, who had to paint of draw what that person was describing. It was a tough but very fun challenge for the kids.

In yet another station, the children ran through the forrest balancing cups of coffee they had made for their boss, trying to get to their boss’s office to sign power of attorney documents without spilling a drop.

Sharing Skills With Others

Many of the campers had their own skills to share and teach. Here are several of them, starting with an 18-year-old who made up a rap song on the spot.

One 14-year-old camper had a lot of skills, including bugle playing, fire breathing (So sad I didn’t get that on film!!), and archery. Here he is teaching another teen how to shoot a bow and arrow.

This young magician taught us all how to get a 100 Crown bill out from under a beer bottle without touching the money or the beer.

This artist created a virtual masterpiece depicting several scenes on one ceramic pot.

And even the youngest of the campers showed their talents. Whether it was my lunch-mate practicing his English, or a shy kid joining in on a new ly introduced American game of “Happy Salmon”, the kids never ceased to amaze me with their willingness to take risks, learn and share. I watched with admiration as this 6-year-old moved with the utmost patience and precision in a game of pick up sticks.

Nothing raises kids up to their potential the way play does. You can see the pride glowing as their self esteem grows by the second. And I feel so blessed to witness and participate in this play at Camp Klicek! Happy Summer!

Klicek Hospice Summer Camp: Kinderspiel Czech Style

fullsizeoutput_44d6

drawing by Markéta Královcová

A Diverse Community

My second stint as a volunteer at Camp Klicek in Malejovice, Czech Republic was as joyful and soul-filling as my time there last year.  The camp is special in many ways, but there are several unique facets that really stand out in my mind.  First, campers are encouraged to invite family and friends, and most campers have at least one sibling, parent, cousin or grandparent accompanying them. Most participants have been affected by an illness, developmental delay, death of a family member, poverty, racism, or incarceration. The campers range in age from one year to twenty-one (higher if you count the adults!) and come from such diverse backgrounds and situations that they form a very unlikely community of intersectionality.  This two-week summer camp brings together these widely varied individuals to partake in an environment steeped in nature, nutrition, community, and simplicity.

The Context of Nature

Children sleep in towering teepees and smaller tents constructed in a field behind the main house, a 100-year-old converted schoolhouse equipped with wheelchair access, hospital beds, and three working kitchens. The field harbors an orchard and several gardens that produce fruit and vegetables for meals and flowers that adorn each table in the mess tent. At breakfast, preserves made from this year’s crop of strawberries smother daily fresh bread from the bakery, accompanying homemade porridge with gingerbread crumble. Every meal is taken outside, and all campers gather several times a day for large group activities.

Real Play

The lengthy summer days, temperate climate, and loose structure of the day leave ample opportunity for the simple kinds of play that seem to be disappearing in today’s wave of technology. Campers are asked to turn in their cellphones each day, and are encouraged to find what they enjoy and make the most of each day. Whenever I offered to help out in the kitchen, I was instead encouraged to “Go play with the children. That is a better use of your time.” And so I too was free to enjoy the spontaneous kind of play that forms the building blocks of childhood.

Here are some examples:

Hand Games

I taught the kids how to play “Butcher Make the Meat Red”, a hand game where one player attempts to slap his opponent’s hands while the other player evades pain. They taught me how to play a finger counting game. Thumb wrestling and criss cross (patty cake) needed no translation.

Rough & Tumble Play

Kids don’t always get a chance to engage in gross motor rough housing play. Here they had plenty of opportunities for this without adult interference.

Feats of endurance:

Kids spontaneously tested their own strength and cheered one another on. Football (Soccer in America) and a Camp Klicek version of baseball (involving knocking over cans and running bases) are also popular.

Loose Parts Play

The children chose names for their teams (there were three teams for chores and competitions), and then found loose parts in nature to depict their team name. The foundation has an ocean theme running through it, which is hard to explain for a land-locked country. But the teams were encouraged to include this theme of being at sea in their chosen names. Here are the results.

“Rats from Below the Deck”

Mussel and Green Psychodogs

Nails on the Sea”

Forrests and Fields

There were many opportunities to walk and play in the neighboring forrest and fields, gathering campfire wood, building fairy houses, and searching for buried treasure.

Imaginative Play

Last but not least, the younger children explored toys, dressed up in princess garb, and played with music.

This smörgåsbord of play is a perfect real world representation of the lovely parting gift I received from Jiri and Marketa Kralovec upon my last day at camp: a print of Pieter Bruegel’s 16th century painting of Kinderspiele.

I came home filled to the brim with fresh air, incredible food, and most of all, play and excellent company. Thank you Camp Klicek!

Stay tuned for my next blog, where I continue to share camp photos and stories.

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………

 

 

 

 

 

 

 

 

Wonder

IMG_5357

 

“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.

The Children of Chanov and Lidice

download

During my recent travels to the Czech Republic, I had the opportunity to learn about two populations that I knew little or nothing about: the children of Lidice and the children of Chanov. Our hosts, Jiri & Marketa Kralovec of the Klicek Foundation, arranged a day long outing to honor one group and to serve the other.

A few days prior, Marketa had given me a book

that told the story of the massacre of an entire village during World War II. It is a chilling and heartbreaking narrative of the fates of 82 children between the ages of 1 to 16. In response to the assassination of Reich Protector Reinhard Heydrich in 1942, the Nazis sought retribution by shooting all the men of Lidice (aged 15 and up), transporting the women to concentration camps, and murdering the children en mass by gassing them in a truck. Not even the dead were spared, their graves looted along with everyone’s homes and businesses, before the Nazis burned everything to the ground.

We arrived at the historical site of Lidice, the midday sun unrelenting in the early Spring heatwave. We made our way over rolling green lawns to the memorial (Pamatnik Lidice) that overlooks the expanse of land where the village once lay. No book could have prepared me for the impact of the life-sized collection of sculptures embodying the 82 murdered children. I stood before them and wept for these children and all those murdered during the Holocaust. I wept at the cruelty of human beings. I wept for the legacy that lives on in the DNA of my life partner, his parents having survived Auschwitz at the tender ages of 12 and 15. They could have been these children. In some ways, they were.

The artist Marie Uchytilová created the memorial in the 1990’s, but died before she was able to complete the sculptures. Jiri described paying a visit to their friend, Marie, during her selfless work. The haunting presence of the children’s likenesses in the fading light cast shadows as they drank tea and chatted late into the night. “She informed us that she often spoke to the children as she crafted their images,” Jiri said. “And she tried to find out everything she could about each one, so that she could truly fashion their souls.”

IMG_2947

 

f5c474d245289b6f6d_4100892861_1175d9dc3a_b

We left the children and walked in silence back to the van.  We traveled on, stopping for a tour of the pediatric ward of a hospital before moving on to the last leg of our journey. We had little idea of what awaited us as we drove north west to Most in Bohemia and the Chanov housing estate. Of course Marketa had told us about our upcoming visit. Borivoj, (all names of patients and children have been changed to protect their privacy) a brain cancer survivor, had attended the Klicek  summer camp as an ill teen. Marketa and Jiri stayed in touch with Borivoj and his family, visiting them occasionally over the years. On one such visit, Marketa took notice of the many children of the neighborhood, hanging out with seemingly little to do. She was moved by their plight, and vowed to return to set up an afternoon of play on a monthly basis.

“No one goes there,” she said as she prepared food for our day’s journey. “It is the poorest and most dangerous part of the Czech Republic. If people do go there, it is to make themselves feel better, handing out candy and toys, and getting back in their cars, not really just being with the children or connecting with them.” As Marketa described the situation, I thought of the untouchables in India.

According to Wikipedia, “[t]he Chánov housing is these days perceived by many Czechs as among the worst examples of ghettoization of the Czech Romany population and has been described as “the housing estate of horror”, “a hygienic time bomb”, “a black stain” and the “Czech Bronx”. The Roma tenants of Chanov fare dreadfully in today’s Czech Republic, relegated to institutionalized country-wide discrimination, racism, marginalization and poverty. The Roma are largely unemployed.  94% of the people have only a primary education, if that.  38% of the population are children under the age of 15. 

Word of our coming had spread, and over 60 of these children and their parents greeted us as our van pulled up in front of the Chanov school, skirted by an astroturf football field. The children gathered eagerly and Marketa divided them into two groups, challenging them to a contest.

“All right!” she coached them. “Let’s see who has better English, the boys or the girls!” I was the designated judge, and the girls surrounded me eagerly. “My name is Anuska,” piped up one girl sporting polka dot shorts and a bright pink t-shirt emblazoned with the head of a blue giraffe. “What is your name?”  “What color are your eyes?” “One, two three…”  Other girls chimed in, counting up to fifteen with pride. “How old are you?” asked another. Then, they all started to sing, “Head and shoulders, knees and toes, knees and toes!”

The boys jockeyed for attention, keen to tease and one up one another in the process. “My name is…” began one, and several interrupted to shout him down with their own introductions. They jabbed and pushed one another, joking and laughing and even yanking down one boy’s shorts as they showed off their skills. Definitely a different energy than the girls!

Capitalizing on the bit if English they knew (way more than my Czech, I might add!)  I asked the children to show me some of their games, awkwardly pantomiming patty cake. After humoring me by joining in, the girls broke into a much more  intricate version, clapping their hands in a fast paced rhythm that left me in the dust. Then the kids introduced me to the game Baba (If I am spelling that right). Figuring out the rules was easy, as they ran up to me, tapped me none to gently on the back, yelled “Baba!” with great enthusiasm, and ran away from me. Oh, the Czech version of tag – I get it! In fact, there are many games that translate across cultures.

The children eventually broke off into smaller groups, some to draw on the parking lot with colored chalk that Marketa had brought, and some to start up a game of soccer. The play specialist volunteers set up a makeshift hair salon, brushing the girls’ hair and styling both boys and girls alike using many mini rubber bands.

Several children showed us their dancing skills, and my colleague, Marifer Busqueta from Mexico City, engaged them in a few Latina moves.

IMG_3054

One group of boys made their way to a large sand pit at the edge of the football field. They dragged over two box springs, the rusty inner workings of mattresses, piling them up to act as a springboard for their acrobatics. And so the real show of the day began. The boys, singly and in pairs, ran pell mell at the springs and leapt upon them, catapulting themselves into the air in arching flips and tumbles. They showed no fear, but my heart beat fast and hard in my chest as they flew past me, landing triumphantly in the sand. I couldn’t help but think of the framed photograph hanging in my bedroom back home of children in a 1980’s South Bronx  performing similar feats of daring.

IMG_3043

 

IMG_3249.JPG

Towards the end of the day, Jiri Jr. corralled the kids into the cement bleachers to pose for a group photo.  There was homemade gingerbread for all, and one child split her treat in half to share with Marifer, before enjoying the sliver left over for her. We spent 4 hours altogether with the kids, before collapsing exhausted into the van and heading home to the comforts of Malejovice. Hot running water and electricity would greet us, although no such luxury awaited the children of Chanov. The joy of a day of cross-cultural play with wonderful kids lay juxtaposed in my mind with thoughts of children in historical and current contexts. When hate and racism allow us marginalize, ghettoize, and incarcerate a segment of any population, keeping them from sharing in the most basic of human rights (employment, access to medical care, decent living conditions and education), how far are we from enacting the fate of the children of Lidice upon our own children?

Medical Play: Modeling Empathy for your Child

file_000

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.

file_001