I am really tired. Mentally. Physically. Energetically. I am tired of politics and of the pandemic. And while I typically love winter (having grown up in Montreal), I am dreading the arrival of cold weather and short days in this time of Covid (I live in New England). In sum, I feel short on stamina and confidence.
Which has me reflecting on the nature of courage – courage to keep going in the face of uncertainty and to do so with a positive attitude.
I am fortunate because precisely as I start to wobble — head down, spirits wavering – I have been brought up by the courage manifested in the day-to-day practices and attitudes of CPN parents currently caring for children living with serious illness and/or medical complexity. Recent conversations with a few parents on the subject of what makes for a “good day” have highlighted the energy and stamina and mindset parents muster daily when they show up and tend and cope and care. Their vignettes situated in home care moments and in-patient moments have touched me with their poignant specificity. They have also reminded me of that place I lived while Cameron was alive when, although I would not have used the word then, I was, indeed, courageous.
I find myself wishing that I was back in that time where the only things that mattered to me were the things that truly mattered to me; where my focus was solely on the well-being of my loved ones without being distracted by so much of the noise that surrounds and threatens my presence; where I found joy in little victories and the simple moments when nothing was urgent.
I appreciate now that it takes courage to hone in on what really matters and not let one’s attention or energy seep out elsewhere. It takes courage to let the old stuff go and embrace the new. It takes courage to reframe our previous definitions of success and good to fit within the limitations and realities of days and nights caring for a medically complex child. It takes courage to go from being a professional working outside the home to being a parent working full time inside the home being our child’s primary nurse or spending every day in the PICU as an equal with the floor nurses. It takes courage to take joy in a day where ‘fun’ is defined by a car ride that, as a dad shared with me, “gets us looking at something beyond our four walls.” It takes courage, as a mom we talked with last week who has spent 95% of her son’s life in the hospital told us, “to turn away from negativity towards positivity.” It takes courage to make every day count.
For these parents, every day counts because of how they love their children. The poet David Whyte writes:
“Courage is what love looks like when tested by the simple everyday necessities of being alive.”
Precisely when I’m struggling, I am gifted with a conversation with a mom who told me that a good day is when she and her son make granola. That such a small victory makes for a good day is a blessing. And I need more of that these days. I’m hungry for the stories from parents who are currently caring for their children, who tell me where their gems lie and who inspire me to reorient. These children and their parents are teachers precisely when we need such life lessons.
I hope you will join us on Wednesday November 18th (7pm EST; 6pm CST; 5pm MST; 4pm PST) for CPN’s In the Zoom Room live event “What does a good day look like?” where parents will be talking about what a good day means to them and how providers can help reframe to get there. All are welcome and encouraged because we have so much to learn from each other. I know these parents don’t think they’re being courageous, but I know they are. And they remind me of who I want to be again at a time when I can use a good dose of courage.
On the origins of CPN”s name, read here –