Listening to Nora: NP Katie’s moving piece about how adolescent Nora, in treatment for cancer, asked for The Truth, and how hearing and honoring this request provided Katie the direction she needed to give Nora the care she deserved.
If I’d Had a Crystal Ball, What Would I Have Done?: No one on the outside can see how much beauty and joy there is for us parents on the inside of our lives with our children. It is a knowing and a seeing that only comes with the living and the loving. Mom Jessica captures this so perfectly and poignantly in this piece. “I wouldn’t have asked to parent a child with a terminal disease; but had I known what I was in for, I would have begged to parent Dalia.”
Mom Robin, mother of David. Robin is both a nurse, a mother, and a passionate advocate for palliative care. She wrote the recently published book Living Well with a Serious Illness. Born of her experience with her son following the relapse of his leukemia as a teenager, Robin cares especially about tending to the spiritual needs of adolescents living with illness.
The spiritual needs of children living with illness and their caregiving parents can be overlooked or unexplored, deepening the sense of isolation and anxiety. This Guide to Spirituality and Caregiving in Serious Illness is designed to help anchor and gently direct caregivers forward.
You may have noticed that Courageous Parents Network has been interviewing and more frequently featuring BIPOC parents and clinician. And while the perspective of a parent or a clinician is purely that – the perspective of a unique individual in a moment in time, based on their individual experience and values – we are intentionally asking these BIPOC individuals to speak to their experience, if any, with unconscious bias in medicine.
Featured this month are the new voices of parents Sarita and Kareem Edwards, whose fifth child, son Elijah, was diagnosed in utero with Trisomy 18. Elijah is now six years old; and Arika Patneaude, MSW, LICSW the Director of Bioethics and Palliative Care at Seattle Children’s Hospital and an advocate for health equity in medicine.
These two particular videos – one from the Edwards, one from Ms. Patneaude – can be seen as talking to each other about how unconscious biases show up in the medical setting. For the Edwards, they felt the bias both in terms of their son’s diagnosis and their race.
Watch Sarita and Kareem: “I shouldn’t have to start flashing all these badges in order for you to respond.”
Watch Arika Patneaude: “As clinicians we may not even recognize that we’re treating these two families differently.”
New for you this month are several items worthy of your time to read, watch and share. These words and the emotional landscape they describe will likely linger in your mind’s eye and remind you that you are not alone and that we each have incredible capacity to endure and create something beautiful alongside suffering.
The Endurance We Didn’t Choose: An avid runner, mom Kim describes the role that running played in helping her cope during Lucas’ illness journey and now in grief following his death from Leigh Syndrome. Most striking for me is the connection Kim makes between the stamina of the runner and her sweet boy’s stamina as his mitochondrial disease drained more and more from him.
The Nursing Dilemma: Mom Jessica’s piece about the impact of homecare nurses, in scarce supply, on her family’s ability to keep Dalia comfortable and happy at home for eight years; and the unique relationship between those nurses and the family. “Several years into our relationship with one of our most dependable, competent nurses…someone to whom I literally trusted my daughter’s life, I realized I didn’t even know her last name.”
Our son’s funeral: Mom Ashley’s intimate account of her family’s decision to give baby Viggo a home funeral and what and who it took to make that happen. This includes bringing Viggo’s body home from the hospital for several days, the participation of Viggo’s older siblings and their friends, and then the private journey to the crematory.
Standing in the Gap: Dr. Khaliah Johnson’s essay on her commitment to pediatric palliative care for all families, especially families of color and those in the margins.
Mom April, mother of Jackson who had Krabbe Disease. This conversation with April slayed me, I think especially because of how April’s protective love for her only child radiates through everything she says. April talks about how the progression of his disease impacted her decisions about his care, the road to DNR, wanting to be taken seriously as Jackson’s advocate as a Black mother, and her quiet wish to become more herself again in time.
It’s Summer: CPN’s Travel Booklet for families of medically complex children includes practical and comprehensive tips and suggestions for venturing forth. Produced with Brades’ Place.