CPN | Words, Stories and What Courageous Parents have to Say to the Rest of Us.

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Words, Stories and What Courageous Parents have to Say to the Rest of Us.



I absolutely positively adore the public radio program and podcast “On Being, with Krista Tippet” and have recommended it to everyone I meet: parents, siblings, friends, colleagues, strangers. For me, it has become a cornerstone of my spiritual practice, literally. And I deeply appreciate Krista Tippet’s accompanying book Becoming Wise whose passages I have been re-reading these past few months. Through her podcast and book, Krista Tippet is teaching me a lot about what Courageous Parents Network is actually, and in some instances, unwittingly, doing and how we can do it even better.

A central piece of what Courageous Parents Network does is help parents of children with life-threatening illness tell their stories. This we know! It takes courage to tell the story. Telling the family’s story is healing for the parents. And hearing another family’s story is illuminating and reassuring for other parents who are caring for seriously ill children. So it’s a Win-Win. But I am going to go out on a limb and say that these Courageous Parents stories aren’t just for affected families. I believe they are meaningful to ALL OF US. The themes that emerge in the stories that parents tell are universal to the human experience of tending and caring and loving another person, of fearing we may break apart in the face of loss, of determination to be courageous and to survive and thrive, and, at the end, to be able to say, “I did the best I could.” Who amongst us doesn’t want to be able to say, “I did the best I could.” Who amongst us doesn’t want to be courageous?

When I talk to parents and invite them to share their story of their child and family, they give me their stories in words. Krista Tippet has reminded me that words matter. And not simply because they can hurt, which is how we are taught as children that they matter. They matter because they are the building blocks of stories. Poets string words together to create art, art that as the poet Marie Howe says, is “adequate to experience.” And the courageous parents I speak with do the best they can to use their words to describe their experiences, experiences that are unnatural, exceptional, difficult, and extreme. The words don’t always feel up to the task. These humble parents may feel like they are bumbling along, but I see how there is an innate artfulness to how they are telling the story, just as there is a special artfulness to caring for a seriously ill, medically complex child.

It is our job at Courageous Parents Network to help parents capture their story in words that illustrate their unknowing artfulness. This is a sacred job. And Krista is teaching me that we must use thoughtful words to ask thoughtful questions. Krista calls them ‘generous questions’ that open the space and elicit generous answers.

Here are four words I intend to use going forward in conversation with the courageous parents we speak with:

  • What do you yearn for? We hear the words Hope and Wish a fair amount. Yearn feels different.
  • When you think of the journey you took or are taking with your child, what are the moments that shimmer(ed)? The poet Elizabeth Alexander talks about “language that shimmers, individual words with power.” I am applying that to moments that shimmered.
  • What is your experience with sorrow? We don’t hear this word very often. It feels different that suffering, more emotional, less physical.
  • What acts of kindness have others showed you on this journey? Honestly, could there be anything more important to a parent than acts of kindness from others?

These four words embedded in these questions apply to all of us, not just parents of seriously ill children. What do you yearn for? What are the shimmering moments in your life? Where have you known sorrow? Who has shown you kindness?

I hope you will take some time to think on these questions for yourself, and also to listen to the words and stories of the courageous parents in our network. I am confident you will find yourself in relationship with these parents and that they will help you reflect upon your own experience in this life, what the poet Mary Oliver  calls your “one wild and precious life.”

Watch: Courageous Parents Videos

Listen: Courageous Parents Podcasts