Blogs & Poems
As my dad always says “I have words…”
From my spiritual reflections to the day to day tasks – words come flooding out!
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My Child Is in Hospice: A Parent’s Perspective on Pediatric Hospice Care
Read more: My Child Is in Hospice: A Parent’s Perspective on Pediatric Hospice CareFive years ago, if you had mentioned hospice, I would have thought of an elderly person who no longer wanted to “fight” a disease or simply someone reaching the end of life because of old age. I imagined a long process where they were cared for in comfort until they passed away. Three years ago,…
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One in a Million: Life Inside Paige’s Bucket
Read more: One in a Million: Life Inside Paige’s BucketAs a child, I did so many wonderful things — road trips, visiting friends in their homes, sleepovers, big vacations. These were the experiences I always imagined I would share with my own children. My husband, who is from another country, dreamed of going back one day and spending long stretches of time there. Before…
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One in a Million: The Energy You Don’t See (ATP1A3 Explained Simply)
Read more: One in a Million: The Energy You Don’t See (ATP1A3 Explained Simply)As I write and share more about Paige—g-tube formula, parenting a medically complex child, and training a service dog—I’m realizing that many of you have very little idea what Paige’s life is actually like day to day. Paige’s diagnosis is complicated. It’s the kind where you might see a picture of her and think, “Wow,…