When my child was diagnosed with cancer at five weeks old, I struggled with finding those peers connections. There was a variety of reasons for this – the inability to leave my child because of an emergency, lack of support groups available, etc – but one of these reasons was the social dynamics of a support group just seemed exhausting and filled with pressure. The last thing I needed was to go to a place (or at least what I imagined it would be) where I’d experience other parent’s pain (just adding onto my own) and feel on display as I shared my own (this is especially funny now, as I often speak publically about my experiences).
I was not alone in these concerns. I’ve talked to other parents who have struggled with the same, or additional issues, including not wanting to go back to the hospital environment (many hospitals have graciously tried to host these support groups) which brings an emotional memory load on its own.
In an effort to do something different Keaton’s Child Cancer Alliance began hosting parent-only events that are smaller, allowing for conversation, but with a lighthearted enjoyable, even therapeutic activity. These often take the shape of Paint Nights for Moms at Chicago Fire Pizza. I’ve had the honor of leading many of them. I’m an amateur painter by hobby, but we are not there for an art class. I lead it, because I’m not scared of what they will say. I’m not bothered by the stories. I’ve been there, or least somewhere near there. We all are there more for the joy of the act of painting, no matter the finished product, and to be around others who get it.
During these events, the mood can range from comfortable quiet as the parents sit and can breathe, to friendly social as they talk about kids, tv shows or a book they’ve read, but most often it turns to sharing and asking questions. At one event a mother “newer” to childhood cancer was asking questions about how to work with hospitals and what to expect. Another was asking about the transition of her child going into school, with all the trauma and medical problems that cancer brought them.
In these small groups of other parents, we can actually laugh about stuff that seems weird or insensitive to others like the horrors of “chemo diapers” (the extra toxic diapers of babies who just got their dose of chemotherapy) and exchange tips for things that only we deal with like how to get the shy and socially awkward, but caring oncologist to open up (it’s to talk about skiing). It’s comforting and therapeutic, and not just because of the painting.
KCCA is planning more paint nights in the future, as well as many other opportunities to bring parents together. This connecting on a more casual yet private setting is deeply important for the healing and strength of parents trying to love, support, manage, and care for an entire family going through a horrible season of life. ~ Jennifer Armitage, Keaton’s Child Cancer Alliance Family Support, a.k.a. “Asher’s Mom.”
“Thank you for providing us with the opportunity to express ourselves where we feel understood.” ~ Maricsa, Abby’s Mother
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