Some moments may seem ordinary (like worn-out shoes), but to our family, they mean everything.
When our daughter was born, her prognosis wasn't good. HIE, uncontrollable seizures, an emergency transfer, and a long NICU stay. We were terrified.
But even in those early days, we kept catching glimpses of the resilient child she would become.
Like when she pulled out her NG-tube to show us she was ready to eat on her own, and later removed her oxygen tube as if to say, "I'm ready to go home."
When we finally got the okay to leave the hospital, life became a cycle of fear, endless medications, and uncertainty. And when she developed infantile spasms (IS), a diagnosis we didn't even know to fear, until we entered the world of rare disorders, we weren't sure how much more she, or we, could take.
Yet hope stayed with us, because two things never changed: our love for her, and her ability to fight every battle with a smile.
Now, with IS behind us, we've been able to focus on helping her navigate life with her ultimate diagnosis of cerebral palsy (CP).
Thanks to her hard work and an incredible team, she's doing things her medical chart once suggested were impossible.
She is the definition of resilience.
Back in the early days, when the news kept getting worse, I tried to cope by calling her future accommodations "Custom Needs" and playfully called her "bougie."
But three years in, I've realized something: for many, the term "special needs" carries the same weight it did for me as a kid struggling with executive functioning - heavy, patronizing, and often misused.
At best, it feels minimizing. At worst, it's become a pejorative.
"Custom Needs" isn't a one-to-one replacement. It's a middle ground between the patronizing tone of "special needs" and the unrealistic idea that differences don't affect daily life.
"Custom" acknowledges our reality while honoring identity.
It gives "special" its power back.
Because people are special. Needs are custom.
I want to build something I can proudly pass down to my daughter - a language and community that reflects her strength, her identity, and her joy. That's why we created Custom Needs apparel.
If this resonates with you, you're welcome here.