I used to reference riding the short bus to make fun of myself, or tease others, or to express frustration with their choices and actions. It’s not the only ableist insensitivity I’m ashamed of in my life.

My child rides a short bus. The strongest people in my life ride a short bus. They ride it every day, into a world made for everyone but them. This environment doesn’t understand their tubes, prepare roads for their amazing minds, accommodate their wheels and equipment and seizures.

They push into a space meticulously designed for typically abled people, and keep coming back, hungry for the chance, working for growth, cherishing the community.

Suddenly, my insensitivity isn’t funny any more. Nobody works harder than my Lulu. She celebrates school. She stomps into speech therapy seven times a week. She pushes her tongue around unfamiliar sounds, and mashes words together in ingenious ways, just to make her little soul known. She gets frustrated when all her effort still can’t make her words work.

She spent her first year and a half trying to tell us things weren’t ok. She screamed nearly constantly. She got sick frequently. Despite being in the doctor’s office every 1-2 weeks, and being diagnosed as failure to thrive, her physicians never got beyond trying to calm her frightened parents.

So, smart girl stopped eating one day. It forced us to take her to the hospital. The initial admission for dehydration turned into a two week stay – including a surgery to put in her feeding tube. Months later, we got the results of her genetic testing.

She’s missing 9 genes, and it turns out, that has an impact on how she develops. We don’t have the benefit of knowing exactly how, though, because she was the first case her geneticist is aware of missing this exact segment of DNA code. Only three of the genes are even studied and known for how they work in the body and development.

My daughter Lulu doesn’t look like me. She doesn’t look like anyone. She doesn’t look like her differently organized genetics, or like a child who can’t eat and requires a feeding tube.

But all the things she doesn’t look like are there, burrowed in her skin and bones and cells. My genetics and courage. Her dad’s genetics and silliness. The inability to eat. The extra hard work to learn to speak. The struggle to orient herself in loud, chaotic situations. The seizures. The indomitable resilience.

Disability can dog the most typically presenting people. There are struggles – physical, emotional, mental – that don’t have the pitiful grace to hang on our outsides. They don’t make themselves known without observation and empathy.

It’s a blessing and curse. People don’t place unfair limitations on the invisibly disabled. But, they also don’t provide understanding.

Once, I wrote a piece about Lulu riding the short bus to special needs school. I included a photo of her marching toward her beloved bus. A woman angrily responded, “It’s a toddler getting on the bus for preschool. That’s the bus toddlers ride. Don’t act like you know when you don’t.”