Conversation, Naturally
Sharon Perfetti
Executive Director, Cool Kids Campaign, Towson, Maryland
By Val Walker
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
Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.
Keep up with Val at www.HearteningResources.com