My Child Is in Hospice: A Parent’s Perspective on Pediatric Hospice Care
Five 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, […]
One in a Million: Life Inside Paige’s Bucket
As 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 […]
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, […]
One in a Million: Discovering Paige’s Diagnosis
January 25th, 2023 January 25th, 2023 — three years ago, something happened to my 9-week-old baby girl.I almost lost her in my arms. Paigey—my sweet little girl, who somehow already had sass even as a newborn—was rushed into a Level 1 trauma room at Texas Children’s ER. I didn’t even know this hospital existed. I […]
Unfelt Feelings: What It’s Like Raising a Medically Complex Child
This past week there was a morning I couldn’t keep myself from crying. I was emptying the dishwasher. Every time I looked up at my girl, I felt it—sorrow, worry, fear—all at once. The tears fought, like they always do. I tried to keep moving. I tried to stay busy. But eventually I sat down […]