Even when things aren’t perfect, there is still joy
I am humbled by the responsibility of representing the differently abled
I’m a firm believer that life should be celebrated. I love decorating the house for holidays, birthdays, the first or last day of school, and anything else that provides my family with an excuse to get excited about life. It helps to break the monotony of our weekly routine and teach our children to take ownership of and to have pride in their efforts. It also teaches them to celebrate other members of the family.
Yet some annual celebrations have been bittersweet this year because my Friedreich’s ataxia (FA) has progressed and demanded additional mobility adaptations.
Sometime around last Christmas, I made peace with the idea of depending on a wheelchair in public. I still use my walker around the house for two reasons: Firstly, I want to maintain my remaining abilities and circulatory, muscle, and emotional health by walking when it feels safe to do so; secondly, my house isn’t yet modified to accommodate full-time wheelchair use.
Being in a wheelchair in public has been both comforting and hard. I like feeling safe from falling, and I’m now able to devote most of my energy to being present, talking with friends, enjoying activities, and more, rather than walking with extreme concentration and fear.
I am humbled by the responsibility of representing the differently abled population in my circle of influence when I’m out and about, with or without my children. I feel a strong conviction and sense of purpose to not only normalize mobility disabilities, but to do so in a way that makes people see that joy can still be found, even when circumstances aren’t exactly perfect.
May is a busy time of the year for most, particularly for parents of school-aged children. Last weekend, I experienced a few firsts, which generally prompt careful consideration and introspective reflection.
My daughter, Collins, celebrated her eighth birthday by hosting three sweet little friends for a slumber party. It was jam-packed with swimming, pizza, giggles, dancing, tumbling on the trampoline, Harry Potter movies, s’mores, nail polish, presents, and more. While we know the families of her friends well and have hung out outside of school many times, one of the girls had never been to our house before.
She had a few questions about my various mobility modifications, such as the grab rails, back-door ramps, and my outdoor walker. She was very respectful and kind with her questioning and responded to my answers with “That’s so cool” and “That makes sense.” It was such a lovely opportunity to normalize my disability, and I enjoyed being around Collins and her friends.
The next day, Collins had two dance recitals. I was a little sad to have to sit in my wheelchair and watch the girls being active and performing with their friends, which was something I used to love doing. Nevertheless, I loved seeing her enjoy the moment, and I celebrated how hard she’d been working on her routine.
After the busyness of Friday and Saturday, it was refreshing to spend Sunday morning at church and then swimming, grilling, and playing at home with my family, including our parents.
This week is their final week of school, and I’m sure that summer will be full of other firsts. I know that some of these firsts will go smoothly while others will be hard. But it’ll all be an opportunity to learn. With that in mind, bring on the summer!
“God is the one who causes us to hope for good things. I pray that God will bless you very much. I pray that he will cause you to be happy and to have peace in your minds. He will do this because you believe in him. As a result, God’s Holy Spirit will make you strong with his power, so that you hope even more certainly.” — Romans 15:13
Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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