Posts tagged Batch2
Conversation, Naturally
Sharon Perfetti   Executive Director, Cool Kids Campaign, Towson, Maryland

Sharon Perfetti

Executive Director, Cool Kids Campaign, Towson, Maryland

Sharon believes conversation is critical to the health of family life when a child is battling cancer. She has helped to create a comforting, friendly center for families to drop in and talk freely. Sharon is the executive director and one of the co-founders of the Cool Kids Campaign, a nonprofit dedicated to improving the quality of life for children with cancer, and to bringing families together.

According to Sharon, families facing childhood cancer spend an average of two years battling the illness, consuming an enormous part of a young child's development, and impacting the development of their siblings as well. Parents carry the burden of not only fighting for their child's recovery, but also of keeping family life as normal as possible. Sharon believes in the importance of creating a space for parents to connect and talk in a relaxed, comforting environment, while staff provide services for the children.

Her inspiration to co-found Cool Kids sprang from leading a community effort of thousands of volunteers to build Annie’s Playground in Fallston, MD, to memorialize her friend’s daughter, Annie Cumpston, and other children who had died too soon.

Now soaring past their 10th anniversary, the Cool Kids Campaign serves hundreds of families in the Towson, MD, area, operating a learning/tutoring center for children undergoing cancer treatments, as well as offering support groups for their siblings.  Cool Kids provides 250 care packages annually, a newsletter, a drop-in center for families, and organizes many fundraising events.

As Executive Director of the Cool Kids Campaign for children with cancer, how vital is the role of conversation in your mission?

Sharon:  Conversation is critical to the health of family life—especially when we have a child with cancer. From the first day we opened our doors, it was clear to me those parents needed face-to-face conversations with each other. They were eager to talk.

Through conversation, in a natural way, parents could develop trusting relationships with each other so they could think out loud, problem-solve or just vent. And beyond the frightening medical aspects to consider, there were logistical, financial and educational needs, as if the emotional toll wasn’t big enough. “How can I manage my child’s time away from school during the long term treatment?” “How can I handle the needs of my other children during these months or years of treatment?” “What will happen if the prognosis gets even worse?”

How did you create an environment conducive to parents starting conversations with each other?  Did you provide support groups or classes, or offer counseling sessions?

Sharon: We just gave people the space and the level of comfort they needed, putting them at ease, and they started talking naturally. We take care of the children while parents kick back and just talk.

As important as support groups, counseling and other resources are for parents, we focus more on providing play activities for the children, or tutoring the children, meeting the needs of the children first. But as parents sit together, watching their children playing and learning, just relaxing, they casually chat and develop solid connections. By allowing the parents some respite from their burdens, they feel free enough to open up and talk about whatever is on their minds. Basically, we give them a break, so they can enjoy the simple pleasures of hanging out with other parents. We don’t steer them into a particular conversation or topic—they just finally have the time and place to talk, creating strong bonds. I’ve observed how this organic, drop-in process is effective for sharing even the most painful feelings and situations, as some parents face anticipatory grief during the palliative care for their child.

Sharon, what do you think is really going on when parents are talking to other parents of children coping with cancer?

Sharon:  First of all, parents are not looking for someone to solve their problems. They want empathy, reassurance, understanding, and certainly kindness. All this comes from a good conversation with another parent going through similar hardships. The magic happens when conversation flows naturally, and the parents are surprised by what comes up—a new perspective, a sense of normalcy, a good laugh, a sudden revelation.

Once again, here are the ingredients to creating conversations:  Welcoming people heartily, freeing them up by caring for their children for a while, letting them sit back and watch their children play and learn, letting them have another parent right next to them to turn to—and then-- let the conversation begin!

What personally motivated you to become an advocate for conversation for the families at Cool Kids?

Sharon:  It all started before I worked with the Cool Kids Campaign, when I was volunteering for Annie’s Playground as their general coordinator. Annie’s Playground is a memorial playground for dozens of local children who have died, many of them from cancer. I mostly worked from my home in those early years of building the playground, and family members who I had never met came knocking at my door to drop off checks for the equipment needed for the memorial sites. Quite spontaneously, parents and family members would start sharing their memories of the children—they needed to talk, and of course, nothing could be more profound than the death of a child. As they opened up to me with their stories, I would invite them to sit down in my living room, and they often talked for an hour or two. From so many conversations during those years, I learned the power of listening, and that even if we can never fix something broken or lost in our lives, we can at least share what we’ve learned and what we’ve loved. So, a few years later, when the Cool Kids programs developed, I was very much aware that we needed a homelike environment for families to talk.

Personally speaking, the whole conversation experience with these families has guided me to teach my own children, now ages 21, 18, and 16, the importance of in-person conversation and good listening. Even in our digital age, there are just too many things in life that can’t be fixed, and we need to be able to talk with each other even when we don’t have the answers. When we can’t get the job we want, or the cure we want, or the results we want, at least we still can enjoy our relationships.

Are there new media projects developing from all the conversations over the years between the parents, and with you and your staff?

Sharon:  We're working on a booklet called You Are Not Alone, a result of the many, many conversations we've had about how families can reach out to each other. Also, from my years with Annie’s Playground and with Cool Kids, witnessing how healing it is to continue our stories about our loved ones after a death, I've created a tribute site, The Stories Between. It’s designed to memorialize loved ones with our stories, videos, and music. It's a free service for anyone anywhere who'd like to create pages for their loved ones.

Thanks so much for your time and thoughts, Sharon.  It's rewarding to hear how much you've worked towards reclaiming the role of conversation in the lives of your families—and in your own life.

Resources, Further Reading:

The Stories Between,  www.thestoriesbetween.com

Cool Kids Campaign, Towson, MD, www.coolkidscampaign.org

Annie's Playground, Fallston, MD, www.anniesplayground.net

in which you washed my hair in the kitchen sink

When I was five, I wouldn’t let a single person near my hair. My mother had to go out and buy me an expensive bristle brush designed for sensitive scalps. She gave me a peek at it in the car as we drove home. “It’s a magic brush,” she told me. “A magitch brush,” my dad would correct with a wink.

 Still, hair-brushing time always filled me with dread. In a sudden burst of toddler witticism, I compared the process to airplanes flying into the back of my head. My mother and my nanny Marcy had to get creative. In a particularly successful method, I would wrap my arms around the hairbrusher in question and holler into her shirt as she teased out the snarls. In another approach, I would flip my head upside down and stand with the blood rushing to the tips of my ears as my tangles were torn apart. My dad lacked the courage to even try. On the mornings he was in charge of my hair, he spent half an hour gingerly skimming the brush somewhere over my head, leaving a knot hidden at the nape of my neck.

 My mother lost her hair twice. Every morning, she would wake up to another nest on her pillow, her hope to be spared shattered like broken eggshells. I was too young to grasp the gravity of this grief. I wrote her a poem as a peace offering, and then cut off my own hair to my shoulders three times. And while she fretted over her scarves, I admired them. She picked the most beautiful colors: blue with white-lined diamonds, swirls of autumn painted with the browns and reds of dying leaves, lilac stained with deep purples.

 When her hair grew back the first time, it arrived in curls. My mother taught herself to tame it with her hair dryer and various brushes, the scariest of which I dubbed the Red Brush. On weekday mornings in the winter, I would wake up to a pitch black sky and the distant croak of crows. I’d burrow under my blankets, listening to the sound of running water from down the hall. The house was dark but for the soft light from the bathroom, and it was a comfort knowing someone else was up, that she would soon raise the heat, flick on the lights, and sing me awake. It was a comfort knowing that my mother was standing in front of the steamy mirror, wrapped in a towel and curling her bangs, playing with her hair until cancer skulked away, defeated.

 I taught myself to braid after she died. She had showed me the basics – three pieces, weave under, over, under again – but I had never mastered it on my own. Even ponytails were beyond my ability. I spent ages in front of the mirror each morning, screaming in frustration. I worked at it until my scalp groaned in pain. Caring about the inconsequential was my means of survival. But now when I pull at my hair, I don’t worry about it being perfect. Instead, I remember the way my mother twirled her finger around the wisps of my hair when she told me that she loved the way they curled.

 On those mornings when we were running late and my hair was in no state to make its daily appearance, my mother would wash it in the kitchen sink. She’d rest a towel behind my neck and tell me to lean back, the tips of my hair dangling near the drain. I can still feel her fingers on my head as they traced rhythmic circles from one side to the other. I can still hear the squeak of air as she squeezed the shampoo bottle and made fireworks of soap bubbles float around us.

Anna McLoud Gibbs is a freshman at Harvard College. She has not yet declared a major. She is from Ipswich, Massachusetts.

Scabs

Your scabs are elegant because they are outward signs of you mending and regenerating, creating soft new skin without even thinking about it. While you’re busy being angry about your inability to finish a task for work or dreading calling  someone back, while you’re regretting the choice you made last month, without even knowing it, you’re subconsciously reconstructing yourself, and your ‘big’ worries are trivialities compared to your body’s own constant maintenance of what is vital, what keeps you alive.

I’m not going to tell you to find someone to hold your hand even when it’s callused or scabbed. You’ve already been told that, and that doesn’t mean it always goes well, or will provide what you need. Instead, I’m going to tell you to learn to respect your own scabs, to find elegance and utility in the way your calluses grip your coffee mug. To not think twice before wearing shorts when there are chain grease stripes, scabs and bruises on your legs.

It’s far too easy to fear someone else’s split-second judgment about your scars or calluses or the shape of your muscles. But, while someone else may shake your hand for five seconds, you wear and carry it always. You are the one who watches your

fingers nimbly hop the keys of your keyboard as you type, lift the spoon in your breakfast each morning, and gently comb out your hair each night. As you work to modify yourself with your mind, recall that your body is doing the same, and respect it. Respect your scabs.

Annie Harvieux is a senior at Harvard College, where she is an English major.