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Blog

Families and clinicians reflect on the lived experience of caring for children with a serious medical condition.

Featured Posts

Should vs. Want: Guiding Insights from a Palliative Care Clinician

Should vs. Want: Guiding Insights from a Palliative Care Clinician

A rare disease mother reflects on palliative care, grief, caregiving, and making authentic end-of-life decisions for a medically complex child.

The Zetetic Parent

The Zetetic Parent

A philosophy lesson on caregiver anxiety, doom scrolling, and learning to live with uncertainty through curiosity, presence, and openness.

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Letters to Heaven

Letters to Heaven

Happy Courageous Mother’s Day

Happy Courageous Mother’s Day

Sharing What I Once Hid: Social Media as Connection in Complex Motherhood

Sharing What I Once Hid: Social Media as Connection in Complex Motherhood

More Love Than I Could Plan For: Family Planning with Rare Disease

More Love Than I Could Plan For: Family Planning with Rare Disease

The Good Parent

The Good Parent

Diagnosis Day: What I Felt, But Could Not Name

Diagnosis Day: What I Felt, But Could Not Name

Supporting Siblings Through Loss: Remembering My Sister Heidi

Supporting Siblings Through Loss: Remembering My Sister Heidi

What the Annual Report Cannot Capture: The Story of One Family’s Network

What the Annual Report Cannot Capture: The Story of One Family’s Network

Learning Her Again; A Mother’s Understanding of Baseline

Learning Her Again; A Mother’s Understanding of Baseline

Period Power

Rare Disease Day

Rare Disease Day

Altered by Love

Altered by Love

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