A special contribution by guest blogger Rebecca Krylow.
From the start, Joey has had his own way of doing things — and his own timing, too. Every milestone he’s reached has come with a mix of patience, perseverance, and a whole lot of pride.
We used to wonder if he would ever walk. He did, just shy of his second birthday. Now, years later, he’s preparing to run a mile in his first Special Olympics track meet.
We used to wonder if he’d ever learn to read. Today, he can’t get enough of books — devouring them one after another, often checking out the maximum number allowed at our local library.
Joey has grown into a confident, funny, and self-assured young man who knows who he is — and embraces it. He understands that he has PWS, but it doesn’t define him. His confidence shines through in everything he does, propelling him from one challenge to the next and reminding us that the possibilities are always greater than we imagine.
Finding Strength in the Journey
When I think about who’s helped me most on this PWS journey, the answer is simple: Joey has.
Watching him grow, develop, and mature reminds me every day what a blessing he is. Of course, supportive family and friends have played a huge part, too — helping us grow into our identities as parents and as a family. And Joey’s therapists and coaches have been transformative.
There have been moments that tested my endurance — like the battles with insurance companies over growth hormone. It would be so easy to give up, to not call back, to not stay on hold for what feels like hours. But each time I fight through it and win, I feel like a superhero. It’s a reminder of the tenacity this journey builds in you.
Words for New Parents
If your child has just been diagnosed with PWS, you might be feeling a sense of loss or grief — and that’s okay. Sit with those feelings. Feel them. But soon, when you’re ready, you’ll begin to see the incredible ways your child will change you. Parenting always transforms you, but parenting a child with special needs is different. It molds you into someone stronger, more empathetic, and more resilient than you could have imagined. And someday, you’ll look back and be thankful for that transformation.
Hope, Gratitude, and Life Lessons
What gives me hope for the future? Having a front-row seat to Joey’s life. Watching him thrive and continuing to learn from the incredible PWS community reminds me every day how unique and special this journey is.
I’m thankful for the joy and perspective Joey brings to our family. He’s taught us to be true to ourselves — to like what we like, even if it’s unpopular. He’s curious and willing to try new things. And yes, he genuinely loves brussels sprouts!
If there’s one big life lesson I’ve learned, it’s that this too shall pass. Every hard moment, every triumph, every quiet victory — they all pass. So be present. Enjoy the moment, or, when it’s tough, reflect and learn from it.
Seeing What Can Be
Joey has made me tougher, sharper, and stronger. He’s made me into the mother I am today. You can’t predict the challenges or the victories — no one has a crystal ball. But with time comes growth. And most of all, with time comes hope.
