By: Jenna Carter
Updated: Jan. 7, 2016
Originally Published: Jan. 16, 2013
I found myself standing in a line with about thirty others, absorbing the insights of experts discussing running. Since I am deaf, I couldn’t hear a word they said; instead, I focused on their shoes. After that, it was time to practice. I ran laps around the track, down various paths, sidewalks, and even the beach, pushing myself to keep moving forward.
In the beginning, it was grueling. I was in my first trimester of pregnancy, out of shape, and carrying extra weight. My lungs had endured at least a pack of cigarettes daily for two decades. It was undeniably tough, and I won’t pretend otherwise.
Raising a child with a disability feels quite similar to learning how to run. We gather to hear countless people share their advice, much of which may not resonate with our unique experience. They speak from their perspectives, and only fragments of their advice truly apply to our situations.
Then we start the journey: we advocate tirelessly for our children, learn the language of disabilities, express our thoughts through blogs and conversations, and experience the emotional rollercoaster of joy and despair. We cry—especially when someone at the grocery store refers to our little star in an offensive way.
We sift through our own memories, recalling past moments that now seem inappropriate. Did I really say I was having a “special” day? Did I chuckle at jokes that demeaned others? Did I find humor in misguided comments about Down syndrome?
The truth is, we want to give up sometimes. We don’t want to be the guardians of political correctness, nor do we want to confront a professional who refers to our child with disdain. But despite our feelings, we push forward, motivated by our love for our kids. If we don’t stand up for them, who will?
Eventually, things become easier. We grow stronger and more knowledgeable. We master the acronyms and build friendships with others in the field. We realize we’re not alone in this journey. Our breathing becomes steadier, and we learn to pace ourselves.
Attending meetings, we encounter new parents, fresh faces in the running community, and we feel grateful for the progress we’ve made. But the memories of our struggles linger, reminding us of the early days when we felt overwhelmed and out of breath.
New challenges arise, and we stumble again, facing prejudice and discrimination anew. The skeptical lady at the IEP meeting dismisses our child’s abilities, rolling her eyes. Another therapist reassures me that “Down syndrome kids are always delayed, so don’t worry.” Just what I want for my child—being judged and compared to a standard of normalcy.
It’s frustrating, and we hit a wall, wanting to stop and give up. But then, from deep within, we find a source of strength. We get some rest, grab our coffee, and push forward, discovering that it really does get easier.
As we improve, we’re able to support others on their journeys too. We encourage them, show them they’re not alone, and remind them that their struggles are valid. The day comes when someone calls us a poster child for acceptance, and we can’t help but laugh.
We laugh until tears stream down our faces, a tribute to the countless hours spent grappling with our own imperfections and missteps. None of us are perfect; yet, we’re all in this together, striving and caring for our children.
It isn’t merely a race; it’s a relay—a passing of knowledge and strength from one generation of parents to the next. Together, we navigate this journey, fueled by love for our kids.
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