Grace’s Journey with KAND
Grace’s diagnosis came before I ever read Welcome to Holland by Emily Perl Kingsley. When I did finally read it, it resonated with me in a way I wasn’t expecting. I understood it… but at the same time, I found myself wishing I didn’t. Because understanding it meant accepting a life I hadn’t planned for.
And even now, years later, I’m still learning what it means to fully accept “Holland.” I’m not there one hundred percent. I don’t know that I ever will be. Our daughter, Grace, was diagnosed with KIF1A Associated Neurological Disorder, a rare and progressive neurological condition that affects her mobility, communication, and so many parts of her daily life.
What followed was a world filled with appointments, therapies, and questions that don’t always have answers. EEGs, MRIs, evaluations, and more follow-ups than I can count. Days that feel heavy, and moments that feel overwhelming. But this story is not just about a diagnosis. It’s about Grace.
Grace, who loves music, dancing, school, and being outside. Grace, who has a strength and spirit that cannot be measured by what she can or cannot do. Grace, who continues to teach me more about resilience, patience, and love than I ever thought possible.
This space was created to share our journey, honestly and openly. Not just the strength and resilience, but also the hard moments. The fear. The exhaustion. The quiet grief that can exist alongside deep love. Because both can be true at the same time. I created this space to bring awareness to KIF1A, but also to create connection. If you are a parent, caregiver, or family member walking a similar path, I want you to know you are not alone. This is a place where the hard parts can be spoken. Where the small victories are celebrated. Where strength and vulnerability can exist together. We didn’t choose this path. But we are learning to walk it. And in our own way, we are learning to live in Holland.
We are here to listen, share, and support our community. Reach out for collaboration, research inquiries, or simply to say hello.
Email: info@learningtoliveinholland.com