Lessons I’ve learned on my journey of caregiving

If you’d told me 15 years ago, when my son was diagnosed with Prader-Willi syndrome, that I’d one day be fluent in complex medical terminology, juggle multiple therapy schedules, and still find ways to laugh, I probably would’ve raised an eyebrow and reached for another cup of coffee. But here I am, 15 years into this beautiful, exhausting, and love-filled journey of caring for my son, who has two rare genetic disorders.

Those early months were a blur of doctor appointments and tests. I quickly learned that caregiving doesn’t come with a manual, although it should come with unlimited caffeine! There were moments when I felt strong and capable, and others when I cried myself to sleep at night. But I showed up anyway, because that’s what caregivers do.

Being a caregiver is about wearing more hats than I ever thought possible: advocate, master interpreter of healthcare insurance, nurse, teacher, and therapist. It’s also about learning to find small joys amid the hard days, such as celebrating the confidence my son showed when he tried out for a soccer team despite never having played before, or when we go an entire week without a trip to the hospital. The little victories are what matter.

One thing that has saved me multiple times is humor. Sometimes you just have to laugh, like when a medical device malfunctions at the least convenient time, or when you realize that the hospital has better snacks than you do at home. Humor doesn’t erase the challenges, but it does limit their power for a moment. In those moments, laughter feels like oxygen. My son has taught me that laughter and love are the best medicines, and no copay is required.

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Caregiving has changed me in ways I didn’t see coming. It has taught me to slow down and live one moment at a time, and to celebrate even the slightest bit of progress. I’ve also learned the importance of taking care of myself, even when I felt guilty for doing so.

Hope has been the heartbeat of our story. No research measures how far hope can carry us. Hope keeps me fighting for every ounce of progress, even when the odds seem to be against me. It’s what keeps me believing in tomorrow.

November is National Family Caregivers Month, a time to celebrate all of us who care fiercely and love endlessly. I am inspired by the many caregivers I’ve met along this journey. We all face challenges, but those challenges don’t define us. Instead, we’re defined by the strength that we find within them. My son reminds me every day that joy doesn’t depend on perfection; it thrives in the middle of the mess.

So, to every caregiver reading this, take a breath, find a moment of laughter, and hold on to hope. You’re doing something extraordinary, even if it feels ordinary. Someday, when you look back, you’ll realize you weren’t just surviving; you were building something beautiful, one day at a time.

For anyone just starting on their caregiving journey, please know that you’re not alone. It might feel like you’re alone sometimes, but finding others who understand what you’re going through and are willing to listen is priceless. There’s an entire community of people out here who get it. We might not have all the answers, but we do have big hearts and endless resilience. If you’re feeling alone and would like to connect, please leave a message in the comments below.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.