These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio

ONCE UPON A GENE - EPISODE 203
These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio

Rare disease parents, Kim Gilsdorf and Daniel DeFabio, join me for a deeply emotional and thought-provoking conversation about grief. They both lost their sons, both named Lucas and they've shared much of the same rare disease journey with countless moments of emotions, challenges and unexpected moments of strength. We'll discuss their grief, exploring how they've managed to hold onto anger and tenderness simultaneously. We'll also talk about the complexities of supporting those who are grieving and how the term "ritualized chronic compassion" plays a role in their healing. 

EPISODE HIGHLIGHTS

When it comes to the death of a child, how can contradictory feelings co-exist post-death?
Positive feelings and negative feelings take turns, one giving way to another. Being a parent after you've lost a child is both beauty and terror. The hardest part is accepting where you are. There's a sense of relief no longer having the burden of care-giving, but that comes with a feeling of betraying your child because the price you paid for not doing the work is not having your child anymore, which is an unbearable price to pay. 

In the context of grief and parents who have lost a child, how have you navigated and managed your anger and held onto tenderness?
Anger is looked at as a negative emotion we shouldn't have, but the feeling is just like any other feeling and is sometimes a necessary, healthy response. Considering the purpose of each emotion, acknowledge and make space for it, followed by the work of each. Tenderness helps me to listen intentionally where anger acts as an energy. You can't just be angry or stay in a state of anger, but anger can fuel advocacy and drive your actions for good. While it's tempting to place blame, it helps to resist taking anger into blame, acknowledging that sometimes there's not a reason for things happening and there's no one or nothing to blame. Safety is an illusion and the absence of safety, we can be so angry, but what we can give our children and ourselves is tenderness. It's a great paradox, being in the face of injustice, having the response of being tender and angry. 

What do you want to leave grieving parents with?
Grief starts for many on diagnosis day and ritualized chronic compassion can start then, even if death isn't on the horizon. Sadness isn't scary when you stay present in grief, because when you make time for it, with sadness comes love. 


LINKS AND RESOURCES MENTIONED
Grief
https://grief.com/
Healing through the Dark Emotions: The Wisdom of Grief, Fear, and Despair
https://www.amazon.com/Healing-Through-Dark-Emotions-Despair/dp/1590301013
We Need to Ritualize Chronic Compassion - August 26, 2023
https://www.rarediseasefilmfestival.com/blog
Kimberly Gilsdorf on CPN
https://courageousparentsnetwork.org/blog/author/kimberly-gilsdorf/
Daniel DeFabio on CPN
https://courageousparentsnetwork.org/blog/author/daniel-defabio/
The Disorder Channel
https://www.thedisordercollection.com/
Dante Labs
https://us.dantelabs.com/

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