I founded Courageous Parents Network to empower, support and guide parents and families going through the incredibly difficult journey of caring for a child, or children, with a very serious illness. Along the way, the Network also became a resource for pediatric providers who are eager to learn from your experience.
Over the past six years, we have grown CPN’s library of resources to address topics that families wrestle with.
Every parent we have talked with or heard from – their story stays with us. So there are always more topics and resources in the pipeline, to address the needs we’re hearing about.
We try so hard to be thoughtful about the family experience in all of its shapes and sizes. We try to be careful in how we deliver resources.
We know we can’t really fix anything, but at least, we hope, we can help you think clearly and feel stronger, more confident.
We anticipate a lot, because we are parents who have been there ourselves, and we are advised by pediatric providers who have worked closely with families.
But now COVID-19 – this surreal moment where everything is disrupted, upturned, so much is unknown. No one has been here before.
For the first time since CPN started, I have no words. So I turn to the words and wisdom of writer and philosopher-poet John O’Donohue (1956-2007) whose book of blessings TO BLESS THE SPACE BETWEEN US contains gems for many of life’s moments, including those that are most difficult. There has never been a better time, for me at least, to pull it out. I have found this blessing for courage to be especially helpful and I hope it helps you also. Thank you John O’Donohue.
Blessing for Courage by John O’Donohue
When the light around lessens
And your thoughts darken until
Your body feels fear turn
Cold as a stone inside,
When you find yourself bereft
Of any belief in yourself
And all you unknowingly
Leaned on has fallen,
When one voice commands
Your whole heart,
And it is raven dark,
Steady yourself and see
That it is your own thinking
That darkens your world.
Search and you will find
A diamond-thought of light,
Know that you are not alone,
And that this darkness has purpose;
Gradually it will school your eyes,
To find the one gift your life requires
Hidden within this night-corner.
Invoke the learning
Of every suffering
You have suffered.
Close your eyes.
Gather all the kindling
About your heart
To create one spark
That is all you need
To nourish the flame
That will cleanse the dark
Of its weight of festered fear.
A new confidence will come alive
To urge you towards higher ground
Where your imagination
will learn to engage difficulty
As its most rewarding threshold!
My instinct now is to go back to the premise on which CPN began – which is that hearing from others who are walking a similar path can be a lifeline. Sharing stories helps us all feel understood. The stories offer ideas and comfort. They promise that even in isolation, you are not and never will be alone.
I invite you to email us your thoughts and stories about what you’re experiencing and struggling with. Please send us a text, voice or video message to firstname.lastname@example.org.
As much as we can, we will turn that around to share with the larger Network and, perhaps, I hope, respond with something that helps.
I suspect, in sharing, you will be helping someone else.
Please know that all of us at CPN are thinking of your child, your family your child’s medical team, you. Stay safe.