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August is a busy month for my family. Both of my kids have birthdays this month, one day apart. My daughter, Emerson, is turning 4, and my son, Ellis, will be 1. This year, we’re celebrating them together with a Neverland-themed party. Birthdays and holidays are like my Super Bowl,…

The morning started like any other. We woke up to our 3-year-old daughter, Emerson, bouncing on the bed, body-slamming us, and laughing, while our 11-month-old son, Ellis, was in his bassinet, babbling and smacking his aquarium toy until it turned on. Time to start the day. I tried to sneak…

There is a word that has governed our family for 16 years: structure. With a child diagnosed with Prader-Willi syndrome, that is something we strive for — set mealtimes, routines, a scaffolding that keeps my son Jake’s world legible and his anxiety at bay. So when we left home…

My husband, Jamie, and I have developed a constantly evolving system to plan for the week ahead. Standing in the kitchen with multiple calendars open, we map out the week’s schedules and logistics. We do a pretty good job. Bonus points if we can coordinate appointments around the same time…

We’ve adopted a family motto: “Run your own race.” Both of our kiddos experience global developmental delay due to Prader-Willi syndrome, so my husband, Jamie, and I learned very quickly that we had to adjust expectations when it came to the typical milestone charts and timing. In…

Four years ago, my husband, Jamie, and I had never heard of Prader-Willi syndrome (PWS). We didn’t know it existed. And we certainly didn’t know that an email received at 10 p.m. on a Tuesday in late September would be the start of the most beautiful, challenging, and life-changing…

It was 6:47 a.m. when our son Jake, who has Prader-Willi syndrome (PWS), asked for the eighth time, “When are we leaving for our weekend vacation to Colorado?” The trip was three days away, and I gave the same answer I’d provided seven times before: “We are leaving on…

Summer always used to sound so simple to me. It meant slower mornings, later bedtimes, popsicles on the porch, and playing outside until the sun went down. Now that I’m the parent of a child with Prader-Willi syndrome (PWS), summer isn’t so much this idyllic setting, but rather a…

There is a corner of my yard that quietly tells the story of four generations. The peonies blooming there started in my great-grandmother’s garden. When she passed, my grandmother replanted them in her backyard. When she was gone, I knew I wanted them in my yard. Every May, those same…

Caregiving for someone with Prader-Willi syndrome (PWS) is a role that often requires extraordinary commitment, consistency, and compassion. Much of this work happens quietly, behind the scenes, and without recognition. Yet it is some of the most important work that gets done each day. When I think about…