Home Together: Caring for Your Medically Complex Child
The Burden of Care: Love Inside Heavy Things
The Weight Unseen There are many phrases we use half-heartedly. Phrases we don’t fully understand, yet use to describe feelings or situations we ourselves have never truly experienced. It’s not until we witness someone living out that phrase that we begin to understand what it really means. To me, that phrase is the burden of […]
The Dreams That Taught Me to See Her
How learning to see differently changed everything. Ever since I was a child, I’ve had vivid dreams. Sometimes they are nightmares, sometimes they feel like blessings—often depending on what’s happening in my life at the time. After Paige was born, my dreams began to change. And I wanted to share how they’ve changed, in hopes […]
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 […]
Home Together with a G-Tube Baby: Learning the Infinity Pump
Bringing a medically complex child home can feel like a second hospital discharge with a newborn all over again. You’re learning things that you never thought you’d have to learn, you’re sometimes confused, and very often overwhelmed. In this blog I will try and alk you through the basics of gtube care at home using […]