17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating. His parents keep their kitchen pantry locked up to prevent him from consuming dangerous amounts of food in search for the satisfaction that will never come. As his mom Jessica Patay relates in the episode, it’s the ultimate combination because Prader -Willi syndrome also causes obsessive behaviors and a slow metabolism. In their home, food is no joke.
Jessica shares her view on cyclical grief in special needs parenthood, as well as things she has learned and gained from her challenges with Ryan.
One of those gains is the community and nonprofit organization We Are Brave Together, which offers workshops, support groups, and retreats for special needs moms. Jessica has put her heart into spreading the message that we are not alone.
As a social butterfly, Jessica Patay has always adored having supportive girlfriends in her life. She would often orchestrate girl-getaways with her friends and have a wonderful time.
In 2017, she decided it was time to put this passion to work and create a space for the group of women who arguably need friendship and breaks from “real life” more than any other group—special needs moms.
It was then that she created the nonprofit organization We Are Brave Together. Her mission with WABT is a noble one that I just love—to spread the message that in our special needs journeys, we are not alone.
From workshops, to support groups, to retreats, the Southern Californian is spreading love to parents that she can really relate with.
Because Jessica herself is a special needs mom.
Jessica’s 17-year-old son Ryan was born with Prader-Willi syndrome, a rare genetic disorder that prevents satiety (the feeling of fullness after eating). She and her family keep their kitchen pantry and refrigerator locked up to prevent him from consuming dangerous amounts of food in search for the satisfaction that will never come.
As she explained, it’s the ultimate combination because Prader-Willi syndrome also causes obsessive behaviors and a slow metabolism. In their home, food is no joke.
Jessica, her husband Chris, and their two other teenage children have made some huge sacrifices to keep Ryan stable and to avoid stressful situations.
After making a huge scene at a restaurant while waiting for his food to come, they decided restaurants were no longer an option for their family. They also arrange for someone to watch Ryan while the rest of the family go on limited vacations, and to parties where the food is unguarded. They’ve done a lot to keep things moving smoothly, but Jessica said they feel like they, “still walk on eggshells to an extent.”
Despite these huge challenges, Jessica has gained a lot.
She’s been able to let go of a life-long struggle with perfectionism, for one thing. She eloquently explained:
“Having a child with special needs just shifts your perspective and priorities and your sense of purpose.”
I just love that. Although this kind of shift is often resisted, the sooner we release the futile struggle to control our lives, the more we can ride with the punches and find joy.
But my all-time favorite moment was when I asked Jessica what she would say to her younger self—the one with a brand-new baby and a daunting diagnosis.
“You're going to be fine. You are so much stronger than you think. And you will get to the place of being grateful, even though it's really hard.”
Don’t you love that?
“You are so much stronger than you think.”
When I was going through my first miscarriage and I thought my heart would literally break, my older sister would tell me this again and again. While going through that miscarriage and now later in life as more heartbreaks and tough days have come, I have her voice in my head. “You are so strong. You are so strong. You are stronger than you know.”
It’s made all the difference.
What an empowering affirmation! How life-altering!
It’s so easy (and natural) to feel weak and incapable when life is full of pain and questions. Our strength is much more apparent after we have had time and space from a huge challenge.
17 years after Ryan was born and diagnosed with PWS, Jessica recognizes strength within herself that she didn’t realize was there before.
She is so strong. And so are you!
I also love the second part of that mini pep talk Jessica would give her younger self.
“You will get to the place of being grateful, even though it’s really hard.”
Being grateful during tragedies and challenges can feel nearly impossible. And yet, it brings so much peace and joy that is otherwise unachievable. Our gratitude isn’t an attempt at ignoring and minimizing our grief and pain, but the recognition of the light that is also present. As Anna Stanfield said an earlier episode, gratitude and grief can coexist—we don’t have to choose between the two juxtaposed emotions.
I’ll be totally honest; gratitude is something I really struggle to maintain when I’m tired. Tired of pain, tired of questions, tired of trying. But even the feeblest attempt to find the light amidst the darkness makes it all feel more doable. It’s energizing! And acknowledging both the good and the bad is refreshingly honest. It’s feeling your truth soul deep.
And so, as Jessica so wisely sums up:
“Crisis teaches us you can't control anything at all except your thoughts, your words, your actions, or how we respond to crisis or hard things.”
It’s so true.