My mom, my advocate

When I was two and a half years old, my mom took me to the hospital because I was running an extremely high fever. The following weeks were nothing but hell on her. I got worse, fell into a coma, and was not expected to live. I had spinal meningitis. The bad kind. The doctors told mom: “Don’t get hopeful. Don’t expect her to survive. And if she does, she’s going to be a brain-dead vegetable in a wheelchair for the rest of her life.”

After a week, I came out of the coma. Testing ensued, including three horrid spinal taps, but eventually these doctors deduced that: “nothing is wrong with her but her hearing.” The fever had burned so hot that it destroyed the nerves that send auditory signals to the brain. I could not hear in my left ear, and the right was a profound loss.

Mom took me home. The disease had also made me forget how to walk, so she began to teach me. She got a big orange yoga ball and taught me to walk again. “So much for that wheelchair you’re supposed to be living in,” she’d say. And that’s how she always was.

Mom was the one who got me hearing aids, who insisted I be in regular classrooms not special needs rooms, who made me see I was just like any other kid. She was the one who marched into Mrs. Bressflaur’s first grade classroom and demanded I be allowed to sit in the front, not mandated to the back of the room because I was “too deaf to learn.” Mom bailed me out of the “teacher is peeing with the microphone on so let’s all listen to him and laugh” fiasco in fourth. And every time my phonic ear “accidentally” broke, she’d be right in there to make sure I had a new one and my education went uninterrupted.

When I saw my first glimpse of sign-language, mom was the one who learned it and then taught me. And when I realized that the Kansas School for the Deaf existed, she was the one who talked dad into letting me attend. When I had to go back to Lawrence High School for my senior year, mom got the school district to hire the best interpreter we could find, and flew her in from Oregon.

These days, I’m pretty self-reliant. Everything I saw mom do for me when I was young, I do for myself now. I stand up for myself, I advocate for what I need, and I fight for the things I’m denied and shouldn’t have been. I’m a strong, independent personality, because of mom. And these days, sometimes, she’ll start helping me out and I’ll remind her I’m not two anymore, and she’ll laugh and lets me do things my way. But I often wonder what kind of person I would be now, if I hadn’t had my mom.

Who influenced your life and your experiences with hearing loss?

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3 thoughts on “My mom, my advocate

  1. Amazing story, I didn’t know all that about you. But now I do 🙂 And your mom is amazing! 🙂 Unlike her, my parents didn’t quite know what to do with me, but I was already hard-headed lol.

  2. Good stuff, Sarah! I’ll write about my experience growing up soon, but I might just copy and paste your first few paragraphs as it’s so similar! 😉

  3. Sarah, what a great story! Knowing you and your mom personally makes me admire you both even more… Minda Nelson with the KC HLAA chapter has had the biggest impact on my hearing loss journey. God placed her as my next door neighbor for a reason: to teach and model how to advocate for what I need.

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