Reflections on Disability Parenting - Birthdays

There’s a unique kind of grief that comes with raising a child with a disability. It’s not about who they are or who they could have been, it’s about the struggle. It’s about watching them fight, every single day, to do things that come easily to others. It’s the ache of watching their incredible brain work so hard to move a body that doesn’t always cooperate. It’s the quiet heartbreak of feeling how much they want, how much they try, and how much the world isn’t always built with them in mind.

But on the other side of that grief, past the frustration, the fatigue, and the moments that feel impossibly heavy is something else. A soul deep, hard-won joy. A joy so pure it knocks the wind out of you. It’s the kind of joy most people never get to know. The kind that rushes in the moment your child does something the world said they never would. It’s sacred. It’s everything. And it makes every single hard thing worth it.

Bennett is turning nine (NINE!!!) this week and birthdays, like so many things, look different for us. There are no big parties. No sleepovers. No classmates clamoring to come over. And even though he is deeply loved, even though he is known and celebrated in the most meaningful ways, it can still feel a little lonely. Birthdays are tender reminders of the space between the life we imagined and the one we live.

But then I look at him. And I remember how much beauty lives in this space.

Bennett, who loves baseball and belly laughing. Who has THE BEST James Dean wavy hair. Who would happily people-watch for hours and grin at strangers until they’re wrapped around his finger. Who is obsessed with dogs. Who is wildly funny and knows exactly how to get a room laughing. Who is loud, silly, curious, stubborn, smart, and endlessly sweet. Who fills our days with noise and light and meaning.

There is no one like him.

Each year on his birthday, I feel this wave of gratitude. For the people who have stayed in our corner—for nine years now—through every high, every low, every quiet in-between. For the friends who have shown up again and again. For the therapists and teachers who have cheered with us over every hard-won milestone. For the strangers who became family because they saw him and stayed.

This year, we’ll keep it simple. Some baseball. Some ice cream. A few of his favorite people.

Happy 9th birthday, Bennett. You are my heart. You are my joy. And you are, forever, my favorite “wolf puppy.”