When someone you care about is coping with a difficult diagnosis, grieving the loss of a loved one, or undergoing a significant transition, it can be difficult to know how best to support them. Two families and one child life specialist from Lurie Children’s share their perspectives on the gestures and messages that may deliver a meaningful impact in the wake of a trauma.
Scott and Pammy Kramer’s daughter, Maddie, was a happy, brilliant 2.5 year old girl when she was diagnosed with a rare form of cancer on her spinal cord.
“We were vacuumed into a bubble of terror,” Scott says.
Maddie underwent emergency surgery to remove the tumor, completed physical therapy and began an aggressive year-long chemo protocol. For eight months, she lived cancer-free, but unfortunately, the disease recurred. She passed away on January 4, 2018.
As the Kramers mourned the loss of Maddie, a member of their clergy offered a piece of advice that Scott likes to pass on to others: “Follow the lead of the mourner.”
When talking to a bereaved family or a family in the midst of a difficult time, “be present,” Scott suggests. “Start slow and let the parent lead. Whether it’s a short conversation or a parent opens the door, take their lead. Wait to see if the door has opened,” Scott says. “Did they share a Facebook post? Tell a story? Mention the child? If so, gently go where that opening in the conversation takes you.”
Kerri Crawford, a child life specialist at Lurie Children’s, also finds this approach to be helpful. “It’s important not to project your feelings on a family, but respect where they are in the process,” she says. One way to open a conversation is, “I am thinking of your family, and want to support you in whatever way you need.”
Melissa Muniz and Phillip Rodriguez have three children—Phillip, 10, Ivan, 7, and Ruby, 5. Ever since Phillip and Ivan were both diagnosed with Duchenne muscular dystrophy in 2016 and 2017, respectively, the couple has found themselves adapting to a new life: one that is mostly planned around regular visits to Lurie Children’s, which is 40 miles from their home. Every week, the boys receive an infusion of a drug that aims to slow the progression of their disease, and undergo physical and occupational therapies to maintain strength.
Melissa and her husband often feel overwhelmed with the demands of caring for their two children with a serious illness, as well as parenting their five-year-old. Vague messages of support, however well-intentioned, can sometimes compound feelings of isolation and helplessness. “Instead of ‘Call me if you need help,’ it would be more helpful to hear, ‘Melissa, I’m off Wednesday. Let me come over.’ Otherwise, I feel like I’m bothering you.”
Scott agrees. “When the world flips upside down, you don’t need to ask someone if they need help,” he says. “We appreciated it when people even just acted: friends and family who showed up with meals, restaurant gift cards and care packages with food that will last. We never would’ve asked for those things, but they made life easier.” That said, when fulfilling a promise to help is not realistic, even simple messages can be special. “We had friends who would even just send a text message saying, “thinking of you – love you,” Pammy says. Even little acts of support can go a long way.
It’s important to uphold routines in the wake of a trauma. One way to support a family is to help carry out the specific tasks of their ordinary routines, Kerri says. “Ask if you can help with providing childcare, giving rides to and from school, delivering food, picking up mail, feeding pets, watering plants.”
To be mindful of a family’s emotional state, it may even help to offer straightforward instructions for seemingly innocuous gestures, like sympathy cards, for example. “You can say to the family, ‘Please know you can open these if you want, but you do not have to,’” Kerri says.
Additionally, an ordinary question like “How are you?” may suddenly feel daunting to someone who is grieving or struggling. “One question you get a lot of during and after a trauma is, ‘How are you?’ That can be so hard to answer,” Scott says. “A nice twist is ‘How are you doing today?’”
Some positive messages – such as “You’re strong” or “You will get through this” – can not only sound clichéd to someone who is experiencing a trauma, but may also feel dismissive of the gravity of a situation, Kerri says.
Melissa, who is spiritual, prayed when her sons were diagnosed with Duchenne muscular dystrophy. “Prayer is personal and an outlet to cope for myself,” she says. “People would sometimes say to me, ‘God only gives you what you can handle.’ I found that to be a vague statement. A better approach would be, ‘Let’s say a prayer together,’ or ‘I placed a prayer for you at my church.’”
Rather than urging a family to find a silver lining, “just listen without offering advice,” Kerri says. “Listening creates a sense of safety in a scary time.”
When Maddie was first diagnosed with cancer, Scott says he and his wife were essentially inaccessible to the outside world. “We had only one focus: Maddie,” he says. They found it increasingly hard to communicate with their friends and family as well and as regularly as they were used to doing. When they did communicate, whether via text or blog, it was always a relief when the recipients would help ensure that other family and friends received those updates as well.
Melissa felt as though the world was collapsing on her as she went through the unique grieving process of coming to terms with her sons’ serious illness. Although she copes, her family’s resources and time are now stretched thin as they provide the best quality of life to Phillip and Ivan during their treatment.
Recently, the family enjoyed a break from reality when the Make-A-Wish Foundation granted the boys’ respective wishes to visit the Disney Parks and meet a WWE wrestler. The experiences were unforgettable, Melissa says—but it was a volunteer from Make-A-Wish who had an even more lasting impact on her entire family.
“She just went above and beyond for the boys,” Melissa says. “She offered encouragement and support to them and made sure our whole family was OK. She went from being a total stranger to a lifelong friend to us.”
Melissa suggests getting involved with a cause as a volunteer to support families you may not know. “One person can make all the difference.”
“People need support,” Kerri says. “It’s important that their friends and family do not shy away because they are afraid of doing or saying the wrong thing. When in doubt, just listen.”