FACING A LINGERING WINTER

BY VANESSA B. IRA

Crazy, isn't it? There we were, facing the new decade, the '20s, with renewed hope and excitement for the future. Then out of nowhere and in a matter of a few weeks, the entire world – virtually every country in it, every citizen of those nations, every industry, every type of employment, every day-to-day activity – was ushered into a place of uncomfortable uncertainty.

It was March in the United States when COVID-19 lockdowns were first put in place. Spring was all set to make its presence felt, yet no one noticed. Instead, the dissonant chords of Winter were still being heard all around. People were advised to stay indoors and step out only to buy essential goods while keeping a safe distance from others. Students had to continue their education from home base, as were most parents for work, if they still had their jobs. Majority of businesses were shuttered then shattered, and so on and so forth. Many have called this situation we've found ourselves in "surreal."

As of our publication date, COVID-19 deaths in the country were well over 68,000. For the most part, Americans have complied with the Coronavirus Guidelines for America, doing their share to "flatten the curve" in their own states. But at the same time, following six weeks of lockdown, many others are now getting antsy about staying indoors for much longer, keeping their businesses closed for much longer, even wearing masks in public for much longer. Whichever side of the fence they belong to, whether it be "stay home" or "venture out like before," these people have one thing in common. Many of them aren't feeling as secure about the future as they were pre-COVID-19. They'll soon just have to find ways to make positive things happen to reach a place of security.

If this scenario sounds all too familiar to members of the special needs community, it's because facing uncertainty is something its members have been exposed to, used to, and often times learned to thrive in most of their days. A line from an email marketing piece paying tribute to the disability community caught my eye recently: "The world is beginning to understand you now."

As a long-time editor for EP Magazine, I am fortunate to have read hundreds of articles about families and their caregivers touched by special needs – along with the healthcare professionals, educators, and advocacy groups who support them. What has always impressed me is the ability of so many of these individuals or families to live glass-half-full lives. To name just a few we've covered, there's the father of two children with Pompe, a rare genetic disease, who refused to give in to the statistics of the disease's short life expectancy. He fought hard to discover a cure alongside scientists and researchers; as a result, today, John Crowley's son Patrick is in his early twenties while his daughter, Megan, 23, has graduated from the University of Notre Dame. Then there's our monthly editorial contributor, Christina Llanes Mabalot, whose aniridia has left her visually impaired from birth. She attended mainstream schools from kindergarten up to the time she received her college degree, always finding creative ways to keep pace with her sighted classmates. She once founded her own school for the blind, got married, has raised two accomplished children, and runs her household like any sighted person would – while holding down a full-time job these days.

Every now and then, EP Magazine will also cover uplifting stories about Special Olympics' athletes who have lived up to the organization's motto, "Let me win, but if I cannot win, let me be brave in the attempt." This isn't your average pep talk, but one tempered with respect for both the unexpected and the right attitude to tackle the desired outcome anyway.

Aside from such awe-inspiring pieces covered by EP, I can look to the story of my own mother, an independent spirit who loved to explore bookstores and cultural centers in town, all days of the week. In her sixties, an accident left her in a wheelchair and unable to partake of her "old life." So Mom built a new one right in her own library: aside from immersing herself in reading her collection of books and continuing to write books, she picked up the paintbrush and began to create watercolor "gratitude greeting cards" which she gifted to loved-ones. While she still enjoyed the outside life on occasion, she embraced her new world with gusto.

Emily Perl Kingsley famously penned the classic essay "Welcome to Holland" in 1987. Emily is the mother of Jason, who has Down syndrome. Of her unique experience as parent of a child with special needs, Emily wrote, "After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.' 'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'" The author proceeds to highlight Holland's own beauty, "less flashy" than Italy, "But after you've been there for a while and you catch your breath, you look around... and you begin to notice Holland has windmills... and Holland has tulips. Holland even has Rembrandts." She concludes, "…if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland."

So the entire world has changed drastically in just a few short weeks. Many say our way of life may have been altered for good and there will be greater challenges along the way. EP Magazine, like the rest of the world, has itself learned to adapt. In place of our annual mobility-themed issue in May, we have just completed this COVID-19-themed issue to help guide our communities through these devastatingly tough times.

This issue is dedicated to all the frontline health workers who have been risking their own lives so that others who've caught the virus may survive. It is also dedicated to all the brave families touched by special needs who have graced our pages for nearly half a century. From them others can pick up a lesson or two about moving on and discovering new worlds.

The special needs community has known these life lessons forever, and now, so does everyone living through this historic pandemic. Adapt. Reinvent. Thrive. Out of difficult and unforeseen situations, other opportunities are waiting to happen. Mizuta Masahide, a seventeenth-century Japanese poet and samurai, gave us all a view we can, and must, learn to love.

 "Barn's burnt down — now I can see the moon."

ABOUT THE AUTHOR: Vanessa B. Ira has been a member of the EP (Exceptional Parent) family for half of the magazine's almost-50 years of publication. She is currently its Managing Editor.