One magical thing I see while working in health care is the love story. Each and every child who encounters a diagnosis or illness spawns a collection of love stories around them. The stories come spontaneously from parents, siblings, friends, nurses, doctors, community, and peers. It all happens organically and sometimes it happens without notice. Babies cling to their parents when they ache; parents cling to their children when they worry. And the acknowledgement of mortality can stun us into living in the present moment–a miraculous gift. With the onset of an illness or injury, a series of love stories begin in earnest around every child as we all seem to fall in love again.
It may be innate, I think it’s impossible to stop these love stories from unfolding when a child is ill.
A physician colleague once pointed out to me that only two things bring you to the doctor: one, anxiety about an illness (or wanting to prevent one) and two, pain. With children, when either (anxiety or pain) are present, a love story erupts around them. Immediately and passionately, those who care for children and witness their lives will work tirelessly to ease pain and suffering. In it, their love unfolds.
I’ve just realized a love story is always a part of the history of present illness.
Recently a friend shared with me a new, life-threatening diagnosis his child had received. He invited me into a Facebook Group designed for his family to track their journey and chronicle their experiences, support their son, and coordinate their efforts. The Facebook group is primarily authored and updated by the boy’s mother.
For the last 50 some days I’ve been reading a near daily update on their boy’s medical condition, their month-plus stay in the hospital, and their family experience of their son’s illness: the days of isolation in the hospital, the homecomings, the re-admissions, the remarkable intimacy between a parent and child, the weighted worry, and the hope that comes with each brilliant step towards cure. But more than anything, stronger than any medical detail documented, this family journals their love. I’ve come to see the Facebook Group as a beautiful love story. A mother’s and father’s love, a love for their son’s present and his future, a love for God, a love for community, a love for family, and a love for the return of routine.
Witnessing this incredible family embrace their son and love one another is changing the way I think about doctoring and how I think about my own life as a parent. I’m exceptionally fortunate to read their love story and have the opportunity to think and pray for them every single day.
Every illness, a love story.
It is in this way that I believe social tools and networks are transforming our experience of illness, of parenting, of doctoring, of caregiving, of loving, and of living our lives. Like my patients’ stories, this love story has changed mine. And it is these challenges and illnesses that indeed provide us wisdom while ultimately making us much stronger:
For journaling love stories during a time of illness, consider starting not only a Facebook Group but also a CaringBridge site for a loved one.
-Wendy Sue Swanson is a pediatrician who blogs at Seattle Mama Doc.