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A Mother’s Steely Portraits of Her Daughter’s Life with Down Syndrome

A Mother’s Steely Portraits of Her Daughter’s Life with Down Syndrome

by External Article | Aug 18, 2021 | Art, Caring for a Child, Long Term Caregiving | 0 comments

For as long as Grevenitis can remember, being in public with Lulu has brought about a less welcome form of attention. Lulu was born with trisomy 21, or Down syndrome, the most common chromosomal anomaly diagnosed in the United States; the condition, which affects...
What I never knew about my mother

What I never knew about my mother

by External Article | Oct 21, 2019 | After Caregiving, Care Work Library, Caring for a Parent, Caring for a Sibling, Long Term Caregiving | 0 comments

Soon we will mark the five year anniversary of my mother’s death. Soon it will be five years since I became the primary caregiver of my loving and fabulous brother Paul, a 47-year old man with Down syndrome. In this time, I have grieved my mother twice. I have grieved...
Gone, not forgotten: sister reflects on her brother’s institutionalized life

Gone, not forgotten: sister reflects on her brother’s institutionalized life

by External Article | Mar 15, 2019 | Care Work Library, Caring for a Sibling, Long Term Caregiving | 0 comments

Bill was born in 1956 with Down syndrome. When he was 2½, my parents took him to what was then known as the Ontario Hospital School at Smiths Falls. We visited him every month as a family, but he never came home again. My parents, and thousands of others like them,...

You’re More than the Name for What You Have.

by Guest Author | Sep 7, 2014 | Caregiver Stories | 1 comment

[title text=”by Gerry Arango, author of What Would Nola Do? What My Mother Taught Me about Showing Up, Being Present and the Art of Caregiving”] My friend James says he’s brain damaged. I say he has a traumatic brain injury. I hear a big difference, which...

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