Crying, Caring & Contemplating

Volume 53

I broke down in tears yesterday at the auto body shop. Major problems with our new van, and I just couldn’t handle any more problem-solving. My cup runneth, I guess. Way, way over.

I’m not proud of this, but I’m also not at all surprised. Like many of you perhaps, my caregiver “to do” list has become too long. Our 25-year-old son lives “on his own” away from our family home; however, he still requires an extraordinary amount of organizing, managing, overseeing, assisting, supporting, teaching and trouble-shooting. I’m not easily overwhelmed, but I’m certainly overwhelmed right now. Caregiving is constant and complicated. Most days, I rise to the challenge. Last Friday wasn’t one of them.

This experience reminded me of how important professional caregivers are to special families like mine. Ever since Andrew was a toddler, we’ve relied on assistance from a myriad of amazing women (and men) to help us keep all the plates spinning. These wonderful people have provided reliable and responsible support over many years, lending hands and hearts to help us help each other. At various times along this journey, we all need help to lighten our loads. The village it takes to raise our families is filled with friends, relatives, neighbors, and professional caregivers who are committed to assisting us in whatever ways we need. I don’t want to think of where we’d be without them.

Last week, the US Olympic and Paralympic Committee announced its 34 Paralympic swimmers would have to share one personal care attendant (PCA). Because of increased restrictions due to Covid19, no others would be permitted to assist athletes with disabilities, including a deaf/blind swimmer who resigned from Team USA in protest. The Committee apparently deems golfers’ caddies and equestrians’ horse groomers to be “essential personnel.” Not PCAs though, which is simply unconscionable. This decision fails to acknowledge the vital role PCAs play in supporting and assisting people with disabilities to achieve and excel — and even at times to just get through the day. Sadly, it illustrates a lack of understanding and a lack of appreciation for this vital support and service. I expect more from people in power.

Here’s hoping that Becca Meyers’ heartbreaking resignation achieves its intended impact. “I know I have to step up and say enough is enough,” she said in a recent media interview. “I have to do something to force change.” This makes me want to cry again. How about you?

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One person can make a difference, and everyone should try.

– JFK

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Ripple effect.

Becca Meyers shows how even just one person can raise awareness and create meaningful change in the world. So do these folks:

• Olivia Brouhard, an Ohio teen who advocated for more accessible bathrooms at the Columbus Zoo;

• Michele Reeves, who created a Missouri-based ice cream shop that’s delicious AND inclusive;

• Megan Gray, who developed a technology to help people with epilepsy drive more safely; and

• Three high school students in Richmond, Virginia, who founded a nonprofit that has built and donated 500 free wheelchair ramps for individuals in need.

What can you and the young adults in your life do to make a difference? Do you know of someone whose contributions should be profiled here? Please let me know.

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Wisdom beyond his years.

Sam Berns touched the lives of so many people before he died in 2014. In this TedTalk, delivered shortly before his death, Sam shares beautiful insights on happiness and a life well-lived. Clearly wise beyond his years, Sam reminds us that “being brave isn’t supposed to be easy.” What an incredible young man. Ponder away.

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Another Normal is a newsletter dedicated to helping families with disabilities bloom and thrive.

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