In 2022, I took Kay to see a gastroenterologist for the first time. When the doctor entered the room, Kay was asleep on my shoulder, and the doctor hadn’t yet seen her face. As they began reviewing Kay’s chart, they asked if Kay had Down syndrome.
I said yes, of course, I completely understand that it’s an important part of her medical history and something that must be verified. But it was the next comment that froze me. The doctor said, “I wasn’t sure because I haven’t seen her face yet.”
I’ll never forget that moment.
Individuals like Kay, who have disabilities that can be seen before they’re understood, are often judged immediately by those differences. Their worth, their abilities, and even their personalities can be sized up before anyone takes the time to truly know them. That one comment, though not meant to be cruel, cut deep because it reminded me how easily people look at her diagnosis before they see her humanity.
At the time, Kay was still very young, and I was still learning how to find my voice as her advocate. I didn’t speak up. I didn’t know when or how to. And honestly, I didn’t think we’d ever need to see that specialist again.
Fast forward to this year, we found ourselves needing a gastroenterologist once more. When I called to schedule an appointment, I specifically requested that Kay be seen by a different provider, explaining why. The office made a note and told me the manager would reach out.
The next morning, the manager called, and from the very first words out of her mouth, I could tell she was irritated to be making that call. She asked what was said, even though she should have already known. When I re-explained, her tone grew sharp. She told me that if the doctor’s words had bothered me so badly, I should have said something back then. She went on to say she didn’t personally find the comment offensive and that the doctor was “a very nice person” who would never say anything hurtful.
I tried to calmly explain, again, why the comment had stayed with me for so long and why families like mine are sensitive to these moments. I told her that I know I have the right to fire a provider from Kay’s care team and that I was simply asking for another doctor.
She coldly replied that while I did have that right, we would no longer be welcome at their practice if I did.
I was stunned.
I hung up shaking, trying to hold back tears, knowing how limited pediatric specialists are in Las Vegas. I felt trapped between two impossible options, keeping Kay from the care she needed or returning to a doctor whose words had left a lasting mark.
About an hour later, my phone rang again. It was the doctor herself.
She sounded shaken and emotional. Through tears, she apologized, sincerely, humbly, and without defensiveness. She told me she never meant to offend me and was heartbroken to know that her words had hurt me enough to still linger years later. She said she’d love another chance to see us, to make it right, and to provide Kay the care she deserves, but she would also fully understand if we chose to move on. She even said she’d sign off on a transfer to another provider if that was what I wanted.
She also apologized for how I was treated by the manager, even though she had no control over that.
That phone call changed everything.
I told her how much I appreciated her reaching out personally and how much her genuine apology meant. I asked for time to think, and after reflecting, I decided to give her another chance. Not because the comment didn’t hurt, it did. But because she listened, she learned, and she cared enough to own her mistake.
Next month, Kay will see this provider again.
This experience reminded me of something I think we can all take to heart, mistakes happen, but what defines a person is how they respond once they realize they’ve hurt someone.
Kindness and compassion go a long way, especially when it comes to families like mine who are simply doing their best to navigate a world that doesn’t always understand.
If there’s one thing I’ve learned, it’s that advocacy doesn’t always mean confrontation, sometimes it means having hard conversations, and sometimes it means offering grace when it’s earned.