Rx when Parenting a Child with a Chronic Condition
Heavy Doses of Compassion
A dear friend from ages past texted me that his son, who just graduated from high school, has cancer. My heart broke open in a millisecond. I was standing in a Sunday morning line for coffee. The news about his son stopped me cold. Life is so unfair. I couldn’t stop shaking my head in disbelief. The poor barista thought I was complaining about the service.
I met Tom when we were 17 on a school program to the United Nations. I like to joke that he was on the bus of smart Canadians and I somehow sneaked into the program. To apply to the program I wrote an essay about the former UN Secretary Dag Hammarskjöld, with a quote I found in a library book. I’m fairly certain that I was the only one in my town who applied. Now I find it interesting that the chosen quote conjures up the timeless suffering of mothers (of which I still have written out in my neat teenage handwriting). For a whole week we visited New York City, the UN, and went to the top of the World Trade Center for a view of Lady Liberty. The towers no longer exist, of course, and yet they will always be tied in some small measure to that adolescent flirtation, the ideals of humanitarian efforts, and the fragility of life.
Dag Hammarskjöld, 1953
It is said that the tears of one mother are the tears of all and the glory of one man is the glory of all men…
We now are parents and professionals living full lives in different countries marked by the trials and triumphs of being mere humans—we share the main headlines that might fit in a text message or over an occasional phone call. He’s a school principal. I’m a psychologist. He has boys. I have girls. And I wholeheartedly share in his current optimism: his son has a highly curable form of cancer.
I don’t want to offer up a cliché but I will: Perhaps there are few comparable experiences that collect the kind of battle wounds like the scars you get from child rearing. At the same time, there is nothing like the joy and pride that arise in the smallest of moments in watching your children thrive. You never think your heart can crack open wider and then it just does. It’s that very vulnerability that exposes us to the abyss that is human suffering. Deep love. Deep pain.
A child’s cancer diagnosis is a shot to the heart.
I sat with my cup of my tea thinking about Tom and his son when I saw a family stroll in. They pushed a daughter, now a young adult, in a wheelchair. I wondered about her. A spinal injury? A congenital condition? Hard to say. Her hair was neatly brushed. She wore a shimmering cherry lipstick. It was carefully and lovingly applied. I was overcome with emotion.
I began to count.
In my mind I lined up a dozen random parents I know in my community. How many had a child with a chronic or serious illness or condition? I summoned up a list of their children’s conditions: anxiety, addiction, ADD, autism spectrum, clinical depression, cerebral palsy, a congenital heart condition, kidney disease, and post concussion syndrome, including two deaths due to chronic childhood illnesses. That our community has been spared a youth suicide or fatal car accident or death by gun violence seems—statistically—a stroke of luck. I included myself in the line up of parents. We have a daughter with potentially lethal food allergies. Sophie is now 21 and has not outgrown them. I’m only mildly relieved that her boyfriend is an EMT.
How many of these parents suffer quietly with the plight of their child’s condition, or keep to themselves for the sake of privacy, or simply are heads down with caregiving that others don’t even know to reach out? I also imagine parents in other communities who don’t have the privilege of a well-resourced school system or medical access or aren’t able to rally funds for research or costs of care. The bottom line is that more needs to be done for families to foster the kind of resilience that may be needed for a long haul. Two colleagues (Lorraine Hobbs and Kimberly Arthur) and I recently published a journal article about the need to support parents with children with chronic conditions: The Role of Compassion and Mindfulness in Building Parental Resilience When Caring for Children With Chronic Conditions: A Conceptual Model. (Please read and share it. E-Book here.)
Cousineau, Hobbs & Arthur, 2019
…both mindfulness and compassion have significant potential to support this process of working through adversity and finding ways to develop inner resources to cultivate acceptance, find meaning in the context of complex parenting challenges, and respond to the child and oneself with kindness in the face of persistent stressors associated with children’s chronic conditions.
A Silent Suffering
We couldn’t write about our personal experiences in this kind of academic platform yet our hearts were totally in it. We have children with various conditions requiring different levels of care and attention. So we try to walk the talk and wrote the article. Here’s why:
Parenting a child with an illness or disability is very common yet remains a silent plight for many.
Close to 20% of parents have a child with a chronic condition or disability, which is defined as any condition that has lasted or is expected to last for at least 12 months. Personally, I think this is an underestimate due to under reporting and stigma. But let’s just say that 1 in 5 parents/families has a child with some sort of chronic affliction. (There are 83M families in the US and 15M single mothers.) Assume for the sake of my argument that you are in a room full of parents. The next time you are in a meeting at work or a school PTA meeting, or at a place of worship, or on a commuter train imagine that for every 4 seats the 5th seat has a parent facing a difficult illness challenge with a child—no matter the age of a child. Imagine yourself in his or her shoes.
One memory that comes to mind is when my daughter Sophie was three years old and at preschool. She took a cracker out of a snack jar. Apparently another child with sticky peanut butter fingers had also done so. Her face blew up like a balloon immediately. The EMTs were called. She chugged some liquid Benadryl. She recovered. The school eventually became “peanut/nut free” to the chagrin of other parents. It was a common battle cry across American schools: “Why should my child give up his PB&J?” “That’s the only thing he eats and he has the right to have peanut butter.” “Why should my kid starve?” Parents of the afflicted child would counter, “This could be a life or death situation. Surely you can see that?” “You’d rather see a child risk her life than to find something else for your kid to eat?” “Try carrots instead.”
Later the solution in the elementary school was to separate the food allergy kids from the others at lunch time, leaving Sophie at a table all by herself. She became a pariah, a social outcast. The social stigma was an unintended consequence, of course. And it was unacceptable.
Then guess what happened? God bless the children to find solutions that parents or administrators can’t see. Her friends began to sit with her. Over time they became little vigilantes monitoring who had what in their lunch boxes. The girls made sure their parents knew about Sophie’s food allergies for birthday parties and sports events. They educated themselves. They watched the Epi-pen injection video and practiced puncturing an orange with a plastic model pen. Although we were all in a state of anticipatory anxiety, organically we cultivated a “community watch.” Eventually, we all relaxed. When a local 15-year old girl died from anaphylaxis after a severe allergic reaction just days before her 16th birthday, despite the family’s careful precautions, the threat became all too real once again. (See Project Abbie at Harvard.)
Compassionate Action
My daughter’s situation may not compare to the plight of others. A food allergy is an episodic condition that is largely reliant on prevention and avoidance, yet can have a fatal outcome. Yet that’s not my point. Millions of parents are managing some sort of childhood condition every single day. Of course, the medical conditions and potential outcomes vary among children: Children may be hospitalized for depression or suicidal ideation, or suffer a physical illness or condition; or a child may be contending with developmental delays, mobility issues, aggressive outbursts, or chronic pain. There are IEPs and accommodations, specialists, and regular medical monitoring, and concerns about independent living in adulthood. It can be all consuming at times.
What is common is the persistent fear and distress felt by a mom, dad or caregiver. Whenever a child needs specialized care or attention, there is a slow wear-and-tear in the fabric of parenting. An unraveling may occur in parallel with a kind of constant mending, in attempts to emotionally or pragmatically hold it together. There is also the mental “code switching” between taking care of a child’s current needs and the anticipation or planning for the future “what ifs.” It’s hard to be present when the mind is in a ricochet of tending tasks. Let’s not forget that many parents inevitably put their personal needs and goals on hold and may also be economically impacted. Even the most optimistic or well-resourced parents will find themselves in moments of despair or panic. That’s the only natural response.
What I love about compassion-focused approaches to parenting is the recognition that biologically we are wired to protect and ward off threat. That basic understanding can begin to shift how we communicate and respond. I can’t blame the pro-PB&J parents. They want their children to have what they need to survive. They aren’t thinking about the other tribe of parents who also want their children to survive by avoiding PB&J at all costs. Our perspective narrows when we are threatened. The single focus is on survival. The emotions that drive defensive behavior include anger, anxiety, fear, or disgust. As I wrote in my last post, Lead with Love, when we notice which emotion regulation systems are activated (threat, thrive, care/connect), we can begin to respond to life’s experiences in more beneficial and grounded ways. We can respond in a more balanced way. This is where mindfulness and compassion comes in.
The approach we proposed in the article emphasizes relational compassion and self-compassion. All too often the sole or primary focus is on child medical outcomes rather than parental resilience. This is understandable but to use another cliché—the one about the oxygen mask on a flight—we have to help the caregivers put on the oxygen mask first. The point in our article is we believe that cultivation of safety, connection, and caring is essential in any communication, intervention, or resource created to support parents when caring for a child with a chronic condition. This helps to get parents out of the constant threat/survival mode and offer relief from the exhaustion that can come from empathy fatigue, persistent uncertainty, constant caregiving, or social isolation. This means growing both inner strengths and outer strengths.
We consider the mindfulness and compassion skills as a way to “bounce forward” rather than “bounce back”—because life will never revert to a previous way of parenting. Resilience is inherently about caring, connection and community. It also requires a kind of deep knowing that we all belong to one another. In this way we are responsible for the welfare of the collective “we.” Parenting is hard under optimal circumstances. No family is immune from threat, loss, or disappointment. It can take some emotional courage to turn toward what is difficult and reach out to a family in helpful ways—especially when vulnerable children face challenges. The default is to respect privacy, or not impose, or keep a safe distance, or drop off casseroles. I get it. But we also have to stretch ourselves and connect with parents. We don’t know what we don’t know.
Take the risk: Ask them.
How may I be of help? Is there something specific I can do? What is important for us to know? Is it Ok if I check in every once in a while? We are here for you.
Interested in more? Watch this beautiful Ted Talk. Heather Lanier tells her story of having a daughter with Wolf-Hirschhorn syndrome, a genetic condition that results in developmental delays.
My colleague and friend Susan Pollak, EdD, just published a beautiful book called Self Compassion for Parents: Nurture Your Child By Caring for Yourself (The Guilford Press, 2019). What’s on the cover? Two slices of PB&J! That got me hooked. She wrote it for every parent, of course, who deals with the ordinary and extraordinary challenges of parenting. I particularly love the “Fierce Compassion” meditation and “Soothing Touch in the Heat of the Moment.” I highly recommend it.
Photo by Thais Morais on Unsplash
