What happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone?

In this episode, Amanda Griffith-Atkins and I tackle this tough reality. We share notes from this community from all the feelings that come up around leaving our child alone in this world to the many questions we have about planning for their care once we’re gone. We don’t have all the answers, but we do try to leave you with a few hopeful thoughts by the end of this episode. And if nothing else, you can know that you are not alone in your fears and uncertainty.



Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.

Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Use my mejo to have a record of all of our child’s medical records and documents in one place.

Use this free Medical Summary Sheet to give other caregivers a quick overview of your child’s health updates.

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Access the transcript on the website here.

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Podden och tillhörande omslagsbild på den här sidan tillhör Madeline Cheney. Innehållet i podden är skapat av Madeline Cheney och inte av, eller tillsammans med, Poddtoppen.