BY BLYTH LORD

I’ve been thinking about the word COURAGE and how it presents in parents caring for children living with serious illness. In a recent conversation with the dad of a now-young-adult-living-at-home-with-significant-medical-needs, I was struck by his comment that the encouragement of guy friends about how amazing and strong he was really annoyed him. Of course he was prioritizing and tending to the many needs of his child! Any parent would do the same. That’s what parent love looks like. Sure, the scope of the needs was off the chart compared to that of typical, healthy children, but rising to the occasion isn’t the same as showing strength. We each do what we have to do.

I know this, and I knew it when I named CPN Courageous Parents Network. So what is behind my conviction that these parents are courageous?

This is what I know in this moment, what I have learned and seen from our many conversations with parents in the Network:

Courage is in when parents ask their child’s medical team Why? or Why Not? or What else?

Courage is in when they say, No, we don’t want to pursue that treatment or intervention because we think that while it may extend life, it will also negatively impact quality of that life. It takes a lot of courage to put your child’s physical well-being before your own emotional well-being.

Courage is when they say Yes, we do want to pursue that treatment, despite your recommendation to the contrary, because in our heart we believe it is the right thing to do.

Courage is when they intuit that their child will likely not be the exception.

Courage is when they intuit that their child likely will be the exception.

Courage is in when they express gratitude for small victories on Day 21 of their child being in the PICU.

Courage is in when they acknowledge their needs and isolation and ask for help.

Courage is in when they open their doors to invite the community in.

Courage is in when they sit alone with their fears and their grief.

Courage is in when they feel the joy amidst the sorrow.

Courage is in when they have that good cleansing cry.

I am currently reading The Things They Carried, by Tim O’Brien. As noted on the backcover, it is “a groundbreaking meditation on [the Vietnam] war, memory, imagination and the redemptive power of storytelling.” It is exquisitely written. It almost overwhelms with how thought-provoking it is. I mention it here because there is a chapter, or story, called “Speaking of Courage” in which the character in the story is reflecting on something he was part of in Vietnam. “He wished he could’ve explained some of this. How he had been braver than he ever thought possible, but how he had not been as brave as he wanted to be. The distinction was important.”

Put another way, he did the best he could but his best wasn’t as good as he wanted it to be. Ooff!

At Courageous Parents Network, we know that parents are naturally more courageous than they ever thought possible. And our unwritten, unofficial mission is to help them be as courageous as they want to be be for their precious child and family.

This photo was taken 3 days after Cameron’s diagnosis. I am putting on a very brave face. I had no idea what I was capable of, and I was terrified I wouldn’t be able to do whatever it was I’d be called to do for my family.