A celebration of breakthroughs, mine and my parents’
Values I learned as a child have served me throughout my life
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where I’m supposed to be. But there are times when I miss my mom and dad and wish we lived closer to each other.
So it’s such a treat when I get to host them at my house. I grocery shop for things I know they’ll like, I have my friends help me clean the house, and I plan one or two special outings for us to do together.
My brothers and I are also keenly aware that whenever our parents come to visit any of us, they don’t like to sit still and relax, so we try to have a short list of projects for them to do, to keep them occupied. This time, I had some framed pictures to hang, weeds to whack in the yard, and paint touch-ups on the door frames that I regularly run into with my wheelchair.
Mom baked scones, gave me a shower, and introduced me to her latest favorite TV show; Dad checked the oil in my van, tweaked some modifications to my new wheelchair, and solved a crossword puzzle with me. At this time in our lives, I find that I have a strangely natural and seamless relationship with them as my parents, caregivers, and friends, and I understand how extraordinary that must be.
Challenges and successes
Connie Chandler with her parents, Peter and Diana. (Courtesy of Connie Chandler)
August is SMA Awareness Month, and the theme for Spirit Week was “Breakthroughs Begin With You.” I like the multilayered significance of the phrase: celebrating the remarkable scientific breakthroughs for research and treatments, advocating for continuing social and political breakthroughs, and recognizing the valuable role and responsibility that SMA patients and caregivers have in making these breakthroughs happen.
But this month, I’ve been thinking more about the breakthroughs in my personal life. When I was a kid with SMA in the ’80s, there was no expectation that I’d walk independently or build muscular strength. So the strength my parents encouraged me to focus on and exercise was in my faith and my character.
Becoming articulate, creative, responsible, gracious, and independent did not come naturally to me! I had to learn the importance of doing hard things, focusing on what is possible, laying down my pride, and looking past myself to see the needs of others. These are lessons that I learned from my parents as I grew up.
When I was diagnosed with SMA at 18 months old, the daunting challenge before them could have caused my parents to give up, despair, and walk away. But their breakthrough was in the realization that this challenge could be an invitation to a new journey of adventure, heartache, and — maybe even possibly — a deeper joy than they’d ever known.
In their own lives, they’ve faithfully demonstrated to me how to celebrate life and what is true, to have dreams and work hard to pursue them, and see the good and the hard times I’ve faced as opportunities to grow wiser, love deeper, and trust God more. It’s because of them that I’ve had many breakthroughs in my attitude and perspectives about my own worth, my disability, and my relationships. And those breakthroughs continue to enrich and expand the possibilities for positive change in myself and in the world.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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