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Finding My Voice to Advocate for My Daughter With Down Syndrome

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“Hazel, how was school today?” I recently asked my 4-year-old daughter on our ride home. “Great!” she said. “What is one thing you did today?” I then asked. “Played,” she replied. “What did you play?” I continued. “I played kitchen, blocks, going sleeping, coloring,” she then answered. “That sounds like fun!” I told her. Then I paused for a moment as I pondered this conversation, smiled to myself, and continued driving home.

Several days later, I still think about this exchange and smile. Hazel’s language is still developing, but she has discovered her voice.

In my previous essay published on The Mighty, I shared the joys of raising my daughter, Hazel, who has Down syndrome. I discussed how Hazel’s diagnosis — and the doctors’ appointments, therapy sessions, and developmental delays that often accompany this diagnosis — are simply a part of our family’s day-to-day life. My husband and I celebrate Hazel’s achievements daily because we are her parents and we are proud to see her own pride in her accomplishments. We love her enthusiasm for books and music, her creativity in her art and her play, her desire to make friends wherever she goes, her happiness at going to school and seeing her friends, and her love for her family and her home.

Because Hazel is our only child, my husband and I know how to parent in only one way. We love our child unconditionally. We care for her needs. We do all we can to ensure the best life for Hazel. But as she gets older and understands more about the world, I am aware that this world is less compassionate toward and less understanding of Hazel and the needs that accompany her Down syndrome diagnosis. So I have come to realize that my job as her mother must grow and develop to ensure that I continue to provide the best life for her. That also means I must find my voice: to educate, to inform, to shout my daughter’s worth at every stage of her life, to become the advocate she deserves.

So how does someone who prefers the written word find her voice?

She reads.

She educates herself.

She finds inspiration in the mothers and fathers who are strong advocates for their children. She understands that advocacy is not a one-size-fits-all model, but appears in a variety of shapes and sizes.

She pushes herself in small ways at first, and then pushes a little more until her voice is heard.

That is my commitment to myself and to Hazel. To find my voice and use it to become her best advocate.

At the age of 4, my daughter has found her voice. I must now find mine.

Originally published: October 14, 2020
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