Announcing NeuroJourney a comprehensive anticipatory guidance resource for families and clinicians caring for children with Severe Neurological Impairment. A 3-year collaboration of physician specialists and experienced parents, NeuroJourney explains the effects of SNI on the central nervous system and other bodily systems. This material is complemented with perspectives from parents and clinicians on the social and emotional experiences, emphasizing the importance of family well-being. The palliative voice is infused throughout. There are audio tracks of everything, for those who would prefer to listen than read.
Navigating Therapies When Your Child has a Rare and Fatal Disease – Parents of children with progressive neurological conditions often have a tolerate-hate relationship with PT and OT. With some heart-breaking detail, Kim, mother of Lucas, describes the evolution of her relationship with her son’s physical therapy exercises and her expectations for his ‘progress’ as he works so so so so hard. As his abilities decline, these expectations must shift, all in pursuit of loving care.
An Unexpected Message Six Years Later. Whether the clinical encounter is part of a meaningful, ongoing relationship or a short one-time event, the ‘connection’ with a clinician can be a lasting one for parents that they imbue with meaning, especially when the child dies. This blog post by mom Sophia about a letter she received six years later, from a pediatrician who saw her daughter only briefly, reminds us of just how impactful that human connection can be and how it is never too late to say so.
My Epic Self-Care Fail and What I Learned from It: Because taking a bath or burning some candles is Not Impactful Self Care.
CPN’s new Sibling-Blogger-in-Residence: Connor – With a brave and open heart, 22-year old Connor Graver introduces himself and sets the scene for how he will be writing and sharing on the CPN blog the impact his sister Lauren’s cancer had on him . . . and how he has learned to ride the waves.
Feeding children living with serious illness and medical complexity usually becomes a minefield for parents. The emotional toll can be enormous. CPN’s recording of an hour with pediatric psychologist Dr. Dana Bakula and experienced mom Nicole Crump is filled with practical tips for and sophisticated validation of parents in this situation. It covers most facets of feeding and, as one parent who attended the session said, “far exceeds what most conversation about feeding issues ever explore.”
How Food Brought Joy to My Daughter Even When She Could No Longer Eat. You have got to read how she falls in love with cooking and eating out, even when she can no longer feed by mouth … and the lessons this brings to her courageous mom Jessica.
September in the Time of Grief. Mom Kim describes what it like to shepherd and support her sad and confused 5-year old daughter Sophia following the death of Sophia’s little brother Lucas. Back-to-School is a triggering milestone for most grieving parents and Kim’s description of feeling haunted will resonate with so many of us.
Mom Jeanette, mother of Frankie Jr: This video from our interview with parents Jeanette and Frankie, standing at their son Frankie Jr’s bedside, captures the feisty Momma-bear/pitbull attitude of parents of medically complex children. Jeanette describes how she goes deep on researching her son’s symptoms and considering the pros and cons of tests and potential treatments, whether they apply to her son, and whether insurance would consider the procedure/treatment Reasonable. She tells the story of how she had to pressure a doctor to run a swallow study test because of her conviction that her son was aspirating.
In their interview about the 21 years with their son Frankie, mom Jeanette talks about how CPN has been ‘like a therapist’ for her husband Frank. This description validates the CPN model – no burden to talk or share; just to listen to parents ‘like you’ and see that you are not alone.
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.