Ep. 101 When Your Child Has a Life-Limiting Illness with Blyth Lord

Learn how Blyth Lord coped with the illness and death of her young daughter and went on to create the Courageous Parents Network.

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Blyth LordIn this episode I share an interview with Blyth Lord whose daughter Cameron died before the age of two of Tay-Sachs disease, a rare genetic disorder. She describes how she coped with her grief and established a non-profit to help other parents who are caring for children with life-limiting illness.

Learn more at www.CourageousParentsNetwork.org

 

ANNOUNCEMENT:

An Evening withDr. Ira Byock

On the evening of August 21st I’ll share a conversation with hospice and palliative care physician Dr. Ira Byock about the 20th Anniversary of his groundbreaking book Dying Well. Join us for this LIVE event where you will be able to chat with Dr. Byock and ask questions about his books and his work. Let’s show our gratitude for his dedication to improving the way we care for people at the end of life. Learn more and register here. (It’s free and you’ll receive the replay if you can’t join us on the 21st.)

Patreonbecome2xThis podcast is supported through the generous donations of “patrons” who chip in $1 or $2 per month to help cover the costs of production. A HUGE thank you to all of you who are helping out! Our next Hospice Happy Hour will take place on Friday August 25th (you’ll receive all the information by email.) If you’d like to become a donor go to Patreon.com/eolu to learn more!

I chose to share today’s interview because of the very recent death of Charlie Gard, an 11-month old boy in England with a rare, inherited mitochondrial disease. His terminal condition sparked a controversy that spread around the world when the hospital providing his care proposed that Charlie’s life support be terminated. Even the Pope and President Trump weighed in on the issue that went to a high court to decide little Charlie’s fate. Ultimately his parents yielded to the court’s decision and Charlie died on Friday July 28th.

This heartbreaking story points out how nearly impossible it can be for parents to make life-and-death decisions for their children. In this interview my guest Blyth Lord experienced a similar tragic situation when her baby daughter was diagnosed with Tay-Sachs disease, a rare genetic disorder. Blyth shares how she coped with the diagnosis and the remaining months of her daughter’s life, as well as her subsequent grief.

Blyth went on to found the Courageous Parents Network and to contribute to the Pediatric Starter Kit for the Conversation Project. You’ll learn:

  • What factors are most helpful to families coping with the devastating loss of a child.
  • The benefits of Pediatric Palliative Care from a parent’s perspective.
  • How the Courageous Parents Network is offering support to parents caring for terminally ill children.
  • How the Pediatric Starter Kit from The Conversation Project is helping parents have important conversations with their ill children.

Blyth Lord is the founder and Executive Director of Courageous Parents Network, a nonprofit focused on improving the experience of parents caring for children with life-limiting illness through education, advocacy and parent-to-parent support. Blyth is also the Executive Director of the Cameron and Hayden Lord Foundation, a small family grant-making foundation whose mission is to advance pediatric palliative care in the United States, as well as fund research of therapies for lysosomal storage diseases. Blyth’s daughter, Cameron, and nephew, Hayden, died of Tay-Sachs disease in 2001. In the years following, Blyth has promoted the needs of families caring for children with serious illness and how providers can best meet these needs. Blyth is also co-chair of the Parent Advisory Group for the AAP’s Section on Hospice and Palliative Medicine.

Blyth sits on the board of National Tay-Sachs and Allied Disease and on the board of The Children’s Room, a bereavement support program for young families who have lost parents/siblings/children.

Websites: http://courageousparentsnetwork.org

                http://theconversationproject.org

Tune in next week for another episode and until then ….

Face Your Fear.                     BE Ready.                    Love Your Life.

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Ep. 92 Suicide: Surviving the Aftermath: Part 8

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 8: The Fire Ceremony

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suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

This episode consists of:

  • What I’ve learned about my Dad through my investigations
  • The “Tapestry Dream” that changed how I saw everything in my life
  • The hard lessons I learned through hospice work
  • How I recognized that Dad had been my silent partner through all of my grief journey including writing the book What Really Matters
  • The Fire Ceremony: A ritual for healing my Dad’s trauma and my own
  • The song The Sun is Shining for You by Gia (used by permission)
  • Closing comments about this podcast and farewell
  • A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

Highest blessings and deepest love to you!

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.

Ep. 91 Suicide: Surviving the Aftermath: Part 7

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 7: Omaha Beach

omahabeach

suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

This episode consists of:

  • Exploring Dad’s memorabilia from World War II
  • How indigenous cultures hear the stories of their warriors in order to share in their pain
  • My travels to Iceland and Normandy to retrace Dad’s steps in World War II
  • What I learned about the pain of war on my journey
  • A healing dream about my Dad
  • A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.

Ep. 90 Suicide: Surviving the Aftermath: Part 6

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 6: The Purple Heart

purpleheart

suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

This episode consists of:

  • How hospice work help me get “unstuck” on my grief journey
  • How I uncovered my anger at my Dad and my need to forgive him for taking his life
  • The “secret” my Aunt Lena told me about Dad and World War II
  • What I learned from psychiatrist Dr. Jeff Black who treats war veterans for trauma and “soul loss”
  • The RAIN formula from Jack Kornfeld for healing trauma:
    • Recognize the effect the trauma has had on your life
    • Acknowledge and accept the pain you are experiencing
    • Investigate the patterns
    • Non-attachment to the “story” of the trauma
  • Poem: “Griefwork”
  • A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.

Ep. 89 Suicide: Surviving the Aftermath: Part 5

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 5: Guns

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suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

timemagThis episode consists of:
-Dad’s passion for guns and hunting

-A Time Magazine Article from July 1989 about Death by Gun

-Statistics on suicide deaths by guns and gun ownership in the U.S.

Suicide statistics in Wyoming

-Poem: “Shattered” 

-A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.

Ep. 88 Suicide: Surviving the Aftermath: Part 4

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 4: The Bicycle

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suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

This episode consists of:

  • Dad’s difficult childhood
  • How Adverse Childhood Experiences are associated with suicide in adulthood
  • Low self-esteem as a factor in Dad’s death
  • The ongoing guilt experienced by suicide survivors over missed clues
  • An excerpt from my story: “Two Souls in cognito” 
  • A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.

Ep. 87 Suicide: Surviving the Aftermath: Part 3

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes. Part 1: The Phone Call If you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available […]

Suicideblog_

The story of my long journey of healing after my father’s suicide death – told in a series of 8 episodes.

Part 3: Tough Times

toughtimes


suicide lifelineIf you are currently experiencing a crisis or feeling hopeless please know that you are not alone. Call the National Suicide Prevention Lifeline for free and confidential support available 24/7 for people in distress:

1-800-273-8255

or Text HELLO to 741-741.

This episode consists of:

  • The stigma attached to suicide
  • When friends fail to offer support after a suicide death
  • Financial stress as a factor for suicide in older men
  • Why helping doesn’t always require words
  • The song “Without You” by Gia 
  • A message of hope for those grieving a suicide and for anyone who might be considering suicide at this time:

Please don’t give up. There is light in the darkness, there is love for you, there is grace. I have survived and I am here to spread hope.

karen-signature

Please call 1-800-273-8255 for help if you are thinking about suicide.

Click here to talk with someone now.

suicideLogo-with-ribbon

Subscribe to this podcast on iTunes: https://itunes.apple.com/us/podcast/end-of-life-university/id1033282990

Sign up here for the End-of-Life University mailing list. Visit the EOLU website.