In today's podcast, Jason and Elizabeth spoke with Jennifer Siedman and Blyth Taylor Lord about an amazing community called the Courageous Parents Network. The two met through their shared experience of caring for and then losing a child with a life-limiting disease, but as Blyth stated so eloquently, "There are many parents that we meet, and we all have empathy and feel connected with each other. There are the parents where you feel an immediate connection that isn't just about a shared experience, but it's about instinctively knowing that that you and this other parent relate to this unique experience in the same way."
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Blyth had already started the network when she interviewed Jennifer to come on board, and the two felt an instant connection. "Courageous Parents Network is about sharing the essential elements of understanding, coping, grieving and healing that we absorbed over the time of [our daughter] Cameron's and [our nephew's] Haydn's illness and beyond," writes Blyth on CPN's magnificent website. For Jennifer, working with Courageous Parents Network is "fueled by the same care and consideration that [she] gave to [her son] Benjamin when he was alive — those same deep sort of feelings."
The conversation in today's podcast was a deep one and touched on palliative care, bereavement, grief, friendship and sustenance through connection, but it was so profound and inspiring that this writer is hard put to convey its power in words. Anyone visiting here should just listen to it.
Blyth and Jennifer's stories and their work with The Courageous Parents Network are examples of what we mean when we say that there is both grit and grace in caregiving. Your mind and heart will be opened and expanded listening to this hour of clear and frank discussion about life and death and everything in between.
Jennifer and Blyth's Bios:
Shortly after her second child, Ben, was diagnosed with Sanfilippo Syndrome, a lysosomal storage disorder, Jennifer Siedman and her husband formed Ben's Dream: the Sanfilippo Research Foundation. For the past seventeen years, Jennifer has worked with researchers, patient advocacy groups and foundations worldwide to fund and advance gene therapy for the disease that is now in clinical trials in the U.S., Spain and Australia. Sadly, these efforts did not come to fruition in time for Ben, who passed away in 2014.
In addition to her numerous awards and recognitions for her work, Jennifer has been advocating for educational programs for special needs children and has been a development coordinator, director and consultant for several advocacy non-profits. She became part of the Courageous Parents Network family through her palliative care doctor when she and her husband agreed to share their story and the impact of palliative care in Ben's care in a CPN video.
She is a mother of three -- Noah, Ben and Isabelle -- and lives in Massachusetts with their much beloved Newfie, Truman.
The genesis of Courageous Parents Network is in the cumulative experience of bereaved parent and pediatric palliative care advocate Blyth Lord. Following her daughter Cameron's death in 2001 from Tay-Sachs, Blyth began offering her perspective on the needs of families caring for children with life-threatening illness and how providers can best meet these needs. Blyth represented the parent perspective on panels and in workshops with pediatric residents and specialists. She drew on more than twenty years of experience as a television producer to produce an award-winning film with the American Academy of Pediatrics to help train doctors in how to work with families from the time of diagnosis through the end of life. She also produced an educational film about parenting children with life-limiting illness.
Blyth serves on the board of National Tay-Sachs and Allied Disease Association, where she helps oversee the family support services, and on the board of a bereaved parent support group with The Children's Room. She is co-chair of the Parent Working Group for the American Academy of Pediatrics' Section on Hospice and Palliative Medicine.
Blyth is mom to three daughters -- Taylor, Cameron and Eliza. She and her husband Charlie reside in Massachusetts.
Purchase < $100
Jennifer: Men's White Tee-Shirts and Snaps (listen to podcast for details!)
Blyth: A bean bag chair dubbed "Cameron's Throne"
Follow the Child by Sasha Langton-Gilks
Jennifer: Benjamin, my son
Blyth: Cameron, my daughter, and Laura Basili, the grief counselor who helped and sustained my husband and me. Courageous Parents Network encourages families to get counseling, and offers videos about grief, coping and processing with psychologist Nancy Frumer Styron on our website.