The Philadelphia Flower Show is an annual event that heralds the coming of Spring. This Winter weary woman who hadn’t attended in decades, was eager to immerse in beauty. Little did I know that it would go far beyond the blossoms and butterflies that lent their color and wonder. I was offered the opportunity to volunteer at a table for Sara’s Smiles. A few friends were already on board with it, and although I had limited knowledge of the purpose of the organization, I did some research and then leapt into it, wings spread. Greeted with hugs by Jennifer Kogen Burke and Alison Kogen Feldman and draped with a bright feather boa, the better to attract attention of passersby, I was given a brief run down of what our delightful task would be. We were to invite folks to sign cards with inspiring messages for children in hospitals up and down the East Coast of the United States who were living with cancer. Vividly hued markers and cloud shaped cards were scattered across the tables. By the time I left the convention center, my feet were tired, but my heart was light.
This activity was in honor and memory of Sara Burke who had passed in 2008 after courageously facing the disease with the support of her loving family and friends. Jennifer is her mother and Alison, her aunt who continue to champion the cause of bringing as much joy as possible to other families who are in the same situation that they unexpectedly found themselves in.
I had the pleasure of interviewing Jennifer afterward.
Please share some background on Sara’ Smiles.
Sara’s Smiles began before Sara was even discharged from the hospital in 2008. As we were approaching the end of her treatment, we began to talk about doing something to give back to CHOP (Children’s Hospital of Philadelphia). It was our home away from home for seven months and almost every person there- no matter what their role- had a special place in our hearts. When Sara had been declared “in remission,” the staff would tell her that she should celebrate with a party. Sara would always add, “and a fundraiser!”
That enthusiastic response was typical for Sara. Every day in the hospital, she would want to know what was on tap in the fun department. We filled every waking moment (and many nights) with arts and crafts, games, and activities. The staff always loved to come to our room because it was decorated with messages of love, artwork, and party lights.
We also searched out any and all resources available to us during treatment. For instance, “Chemo Angels” provided Sara with secret Santa-type pen pals who would send messages and small gifts. “Super Sibs” supported her siblings at home, reminding them that they were special too. Small pick-me-ups like these made a big difference in our days.
We came to realize early on that not everyone took this approach to their stay in the hospital. Some people just couldn’t imagine having fun in the hospital. Others didn’t have a support system nearby or at all. Many were just too overwhelmed to even know what to do. This quickly became our focus. We wanted to reach out a hand to others in helping to create a warmer, more personal, more fun, and thus more empowered experience for children diagnosed with cancer as well as their families.
When she passed, what helped your family continue on as you did?
First and foremost, the support of our family, friends, and community helped keep us afloat. Knowing that Sara was aware of how much she was loved gives us tremendous peace of mind. Although there is a great deal of pain, we are fortunate to have that peace. Our family, friends, and community continue to be there for us and that supportive circle continues to grow. It’s not any particular act of kindness that has helped, just the knowledge that people are there, that they are trying to understand, and that they are willing to do whatever is necessary. The hard part is never knowing what is necessary on our end. It’s always easier to help others than to help ourselves. Identifying our own needs is surprisingly difficult
Developing Sara’s Smiles also helps us to continue on. It is the best way we know how to honor Sara’s memory and a piece of Sara’s spirit is in everything we do. Our mission is very “Sara” and we know that she would heartily approve of our mission to help others find joy in each day. The ability to focus on Sara’s Smiles diverts our attention from our own pain to helping alleviate the pain of others. It’s important to use our experience to make it better for those walking in our footsteps.
What can people do who feel uncomfortable being around those who are grieving, especially around the illness and death of a child?
It is tough to help those who feel uncomfortable around those who are grieving and/or dealing with illness because each and every person who is coping has unique needs and responds differently to the efforts of others. Some are very private, others are an open book, and some just don’t even know what to ask for or how to deal with being the focus of attention. Emotions run the gamut as do responses to what may seem like simple statements and/or offers. The most important thing is to just let the friend/relative/community member that you are cheering them on. Offering concrete services such as driving siblings to practices, shopping for groceries, or offering to take a walk if and when needed with the “coper” is always better than saying “let me know if there’s anything I can do.”
There is no reason to feel uncomfortable around someone coping with illness or death. That someone is human and needs to know that people care. A simple note or phone call can accomplish that. Silence can make a loud statement. Avoiding the subject or remaining silent can feel like abandonment at a time of need. It is better to reach out than to do nothing at all.
How does Sara live on in the work that you do?
We feel strongly that a piece of Sara’s spirit is part of everything we do. Despite the variety of grueling circumstances that each day brought during Sara’s illness, Sara was looking to have fun. Every morning she woke up wanting to know what was on tap for the day ahead. Sara crammed in as much joy as possible, regardless of her disabilities, treatments, or setbacks. We took advantage of every opportunity we had to keep her spirits buoyed. As a result, we have many happy memories on which to look back. We want others to have that same experience. It is important for both the patients and their families.
Are there particularly moving stories to share about what you have seen since the organization has begun?
This is a difficult question because the story of Sara’s Smiles is somewhat open-ended. Currently, we deliver our kits to the hospitals who, in turn, distribute them to patients as they are admitted to the oncology floor. We rarely have the opportunity to see patients respond in person. We have heard many personal stories at events we’ve attended though. It feels good to be able to offer a ray of hope to someone who has been plunged into what feels like a different universe.
Hearing the diagnosis of cancer can simultaneously feel like a swift punch to the stomach and landing on mars. Cancer is a new world with its own rules, terminology, and landscape. It helps to have someone aid in navigating the new, and frequently scary, terrain. There is beauty along the journey, it’s just found in different places than we’re used to looking.
In your wildest dreams, what would you like to see happen?
In our wildest dreams, we would like to see every pediatric oncology patient receive a Sara’s Smiles Inspiration Kit, take advantage of the resources on our website, and know that they are connected to a caring community, despite their physical isolation. We want every child to feel empowered, find happiness, and know that they are loved and not alone.
How can people be of support to Sara’s Smiles?
There are several ways that people can be of support to Sara’s Smiles. The most important thing anyone can do is share our website, www.saras-smiles.org, with others. It offers a comprehensive list of valuable resources such as games and activities, strategies to manage pain and stress, glossaries of oncological terms, and ways to connect with others with similar diagnoses.
People can also host or participate in an Inspiration Station. Sara’s Smiles provides hosts of Inspiration Stations with cloud-shaped Inspiration Cards to be filled in by volunteers. The Inspiration Cards are crammed with colorful, uplifting words, phrases, and pictures. The cards offer an extra measure of love and support to the patients and families who receive them. They can also be used to add a spot of cheer to the walls of a child’s room. Inspiration Cards act as a constant reminder of the strength that lies within each child and the unbroken, loving connection to a community that cares about them.Donations, of course, are always a method of supporting Sara’s Smiles. Contributions fund the packaging and delivery of Inspiration Kits to children diagnosed with cancer. Our kits provide a sampling of the resources found on our website. They contain items that help families to stay organized, entertained, connected with others, and to explore creative ways to encourage smiles. We believe that engaging children not only brightens their spirits, but empowers them as well. Currently, Inspiration Kits are delivered to children receiving treatment at fourteen hospitals in six states and we hope to significantly expand our reach over time. Kits can also be delivered, free of charge, to children who are diagnosed with cancer but receiving treatment at hospitals other than those with whom we are partnered.
Jennifer, Edie and Alison at the Sara’s Smiles table at the Philadelphia Flower Show