From the moment I learned my son Jay had Down syndrome, I felt a shift; An immediate realization that life would be different. What I didn’t realize was how much of that difference would come from fighting for him to be seen the way I see him. Advocacy is both a privilege and a weight. It is an honor to stand up for my child, to push for inclusion and to make sure the world sees his worth. However, it is also exhausting, and the hardest part? Figuring out how to keep going without losing myself in the process.
The Daily Battle: Seeing What Others Don’t
I fight for Jay every single day for the support he needs in school, the opportunities he deserves, and for people to take the time to understand him. I see his brilliance, his joy and his determination but sometimes, I feel like I’m the only one who does. That is exhausting. The weight of always being the one—the one who explains, the one who pushes, the one who fights—feels heavy and some days, I wonder if I’m strong enough to keep carrying it.
The Cost of Carrying the Weight Alone
Advocacy isn’t just emails and meetings. It’s a full-body, full-mind, full-heart commitment. It means lying awake at night replaying conversations, wondering if I said the right thing. It means questioning myself constantly. Am I doing enough? Am I doing too much? Am I even making a difference? It means sacrificing sleep, personal time, and emotional well-being. I lost pieces of myself in this fight. Some days, I still feel lost because when your entire world revolves around protecting someone else, it’s easy to forget to protect yourself too.
The Reality of Resilience: Strength Is Not Endless
We talk about resilience like it’s an endless supply of grit and determination, but that’s not true. Resilience isn’t about carrying the weight alone—it’s about knowing when to set it down for a moment. It’s about giving ourselves permission to breathe, to take a step back, to rest and to be something other than "the fighter" because prioritizing self-care isn’t selfish, it’s survival.
How We Keep Going: Advocacy with Boundaries
Change doesn’t happen overnight. This fight is a long game...a series of small steps, a constant push forward and we cannot do it alone. We need our people—our friends, our partners, our fellow parents who understand. We need to give ourselves permission to pause, take a step back and refill our own cups because an exhausted advocate is not an effective one. We need to celebrate the small victories. Every step forward counts. Every conversation that shifts a mindset. Every barrier removed. Every time our child is seen for who they truly are. It all matters.
We Are More Than the Fight
Advocacy is part of who I am but it is not all that I am. I am Jay’s mom and I am his advocate. But I am also Katelyn, and I owe it to both of us to take care of that person too. Whatever your fight—if you are exhausted, frustrated, and feeling lost—know this: You are not alone. And you deserve the same care, the same grace, and the same belief in yourself that you give to your child every single day.
Keep going. But don’t forget to take care of you, too.
Bio: Katelyn S. Herrygers is a Connector, Speaker, Advocate, Storyteller, and Strategic Marketing Consultant who helps inspire audiences to rethink systems, embrace diverse abilities, and foster real change. As a mother to a child with Down syndrome, Katie’s journey has transformed her perspective on education, accessibility, and the power of advocacy. She is dedicated to helping individuals and organizations turn challenges into opportunities. Learn more at www.katelynshae.com
