By Laura Will
Reprinted with permission from www.Knowrare.com
It was 3am, and I could not sleep. We had just been told that our 4-month-old son’s brain had “folded wrong” in utero, a rare condition called polymicrogyria, PMG for short. In absolute turmoil over this life altering condition, I picked up my phone to scour the internet for anything that might help. Coming across the “PMG Awareness Organization” website, I found a link to a page called “Newly diagnosed?” There it was, my lifeline – paragraph after paragraph of words written by a prophetic parent for me and all other parents in the initial post-diagnosis vortex. The page validated all the emotions, acknowledged that this is going to be hard, and explained how to find support. Then I read, “You will truly understand what it means to not take a single moment, a single smile, a giggle, one bite of food, or a single step for granted,” and I rolled my eyes in disbelief. I thought whoever had written those words was sure to be obnoxiously optimistic, or sugar coating this journey a bit much for my liking. Now, two years later, I rescind my eye roll.
Joy Is A Discipline
Shannon Sedgwick Davis, a human rights attorney and philanthropist whose work leads her to routinely witness human tragedy says, “joy is a discipline.” I take her wise words one step further: joy is a discipline of gratitude. Caring for a chronically ill child can be emotionally perilous. We, as rare parents, know that sorrow naturally slips into moments of joy. With gratitude we gain control. The sorrow may still be there, but we can accentuate the joy. Research supports this claim. Independent of all personality traits, gratitude is a primary predictor of well-being and improved interpersonal relationships (1).
In the dark days and sleepless nights after our son’s diagnosis, both my husband and I (in different ways and at different times) were flailing around in our grief. There was a new distance between us as we focused any positive energy we could each muster on keeping our children well. It is no mystery to me why having a chronically ill child often strains marriages to a breaking point. Thankfully, research substantiates the idea that emotionally focused interventions can improve marital outcomes (2). At our lowest low point, my husband and I started a nightly ritual of gratitude.
Daily Ritual of Gratitude
Each night we shared with each other five things we were grateful for that day. We were grateful for a smile, a cup of coffee, or three hours of consecutive sleep. We were grateful for the other person in simple and subtle ways. We also voiced what we were grateful for in ourselves. Honestly, this act of sharing gratitude felt forced at first, but it was undeniably good. It was a powerful practice that temporarily calmed our pain, and with time has truly evolved the way I perceive and experience my husband, my children, and my day-to-day life. Thanks to intentionally practicing gratitude, the emotional connection between my husband and I that had been buried in grief was rediscovered.
The act of giving thanks is an integral part of various religious and cultural rituals. Cody Stevens, president of the PMG Awareness Organization, explains that his family is a “praying family.” He notes, “our peace and patience comes from praying.” In a recent interview with me, Cody explained that he feels gratitude on “different levels and in different places throughout the journey.” He is grateful to have an organization to connect with and support other families. He is grateful to the doctors that are applying time to treatment and research. And lastly, he and his wife Joan explained that their family’s health scares help shake them from the “day-to-day hustle and bustle,” and remind them to “embrace the opportunity to play with [their] son now.”
The inevitability of illness and death can certainly spark fear and anticipatory grief; however, research has validated that both near-death experiences and chronic illness can be a powerful gateway to gratitude (3). The reminder of mortality can bring our awareness more deeply into the present moment. If today might be the last, nothing is mundane. The saturation of each sensation gets turned up. We realize time is a precious commodity, and perhaps we feel more alive. Just like sorrow, fear and grief are permanent residents in our house. But there is also this – the sweet smell of raisin bread toasting, my toddler’s brow furrowed in concentration, and his new-found ability to pass a toy from his right hand to his left hand and back. He does it now, shuddering and spastic, and perfectly completes the task. He then looks up at me, eyes wide and gleaming, silently saying with his smile, “Did you see that Mom? Pretty great, right?”
I take none of it for granted.
ABOUT RARE RESILIENCY:
Rare Resiliency is a monthly column written and/or curated by Laura Will. This column has been reprinted with permission from Know Rare explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy. KnowRare connects people living with a rare disease to clinical trials. KnowRare was founded by Nina Wachsman and Jake Wachsman.
(1) Wood, A. M., Joseph, S., & Maltby, J. (2009). Gratitude predicts psychological well-being above the Big Five facets. Personality and Individual differences, 46(4), 443-447.
(2) Cloutier PF, Manion IG, Walker JG, Johnson SM. Emotionally focused interventions for couples with chronically ill children: a 2-year follow-up. J Marital Fam Ther. 2002 Oct;28(4):391-8.
(3) Frias, A., Watkins, P. C., Webber, A. C., & Froh, J. J. (2011). Death and gratitude: Death reflection enhances gratitude. The Journal of Positive Psychology, 6(2), 154-162.