My mom and me

How Being My Mom’s Caregiver Led to Life-Changing Surgery for Cerebral Palsy

I’ll never forget my mom’s reaction the first time she saw me walk. I’d walked since I was five years old, but as I approached 40, my gait was drastically different due to a life-changing surgery. I’d just had selective dorsal rhizotomy (SDR), a procedure that removed the spasticity caused by cerebral palsy. While we waited for the elevator to open, my mom’s eyes welled up when she said: “I’m sorry I didn’t know.”

Standing there stunned, clutching my walker, I hugged, reassured mom, trying to hold back my own tears. I cried realizing the beauty in the moment — the fact that she had this thought, the ability to express it to me. As Alzheimer’s invaded my mom’s brain, she was having a much harder time understanding things, she was frequently at a loss for words, and when she tried to speak, she often didn’t make sense. My mom raised eleven children without driving a car or using a computer. I am her youngest child, the only one born with a disability.

We’d never really discussed my cerebral palsy or how it affected either of us. When I saw the pain in her eyes as she apologized for not knowing about SDR, I knew what I had to do: pay it forward, share my SDR story far and wide! I didn’t want adults and children with CP or their parents — to stumble upon this surgery on Facebook like me. I discovered SDR when I entered a caregiver contest in a desperate attempt to help my mom. I wasn’t looking for something to help my disability. My love for mom led me to the surgery that would change my life.

I believe knowledge is power, and my goal was to give the CP community this game-changing information. If my story helped one person or one parent like my mom, who feels they didn’t do the best for her child, it would be worth it. On July 29, 2014, (four months to the day of my surgery), The Huffington Post published my article: “SDR: Life-Changing Surgery for Cerebral Palsy.” What happened next is truly amazing! In the four years since I shared my story, I’ve been featured in the news, my work has been re-published, referenced on various CP blogs and websites. I’ve heard from so many people — in the U.S. and around the world — about how my article changed their life or their child’s life. I mentor potential candidates, answer (non-medical) questions whenever someone is considering the surgery.

SDR led me to a greater purpose. I’m a disability/SDR advocate raising awareness for cerebral palsy on my blog, and my advocacy work is changing the world’s perception of people with CP.

My mom helped people her entire life. As her daughter and one of her primary caregivers, I’m proud to carry the torch of keeping both the tradition of giving — and, her memory — alive. My mom died tragically (she was killed under the care of a South Florida nursing home) on January 30, 2017, one day before what would have been her 88th birthday.

My mom at age 19

I’m an author, a cerebral palsy advocate, and a writer. I’m also the host of the CP Conversations podast. https://nicoleluongo.com

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