Finding Joy in the Journey — Paige Rivard

Last Friday’s lockdown at my son’s high school brought the kind of phone call no parent wants to receive. My 16-year-old son, Jake, who’s living with Prader-Willi syndrome (PWS), called to tell me he was outside by the football field in an equipment garage, and they were under lockdown…

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…

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…

When you open a can of soda, you might not give much thought to the little aluminum tab you pull up. For most people, it’s just a piece of metal, tossed away without a second thought. But for our family — and especially for my son living with Prader-Willi…

February has two different meanings for our family. On one hand, it’s the month of roses, chocolates, cards, and heart-shaped everything. On the other, it’s Rare Disease Awareness Month, culminating in Rare Disease Day on Feb. 28. It’s a time when families like ours, who are living with…

On Jan. 1, our 15-year-old son, Jake, walked off a plane from Los Angeles, having traveled entirely on his own for the first time. As he came through the gate with his backpack and a beaming smile, a wave of emotion washed over me — pride, relief, joy, and most…