A Seeing Eye, a Listening Ear: In Honor of Usher Syndrome Awareness Day

The beloved children’s television host Mister Rogers once said,

“The gifts we treasure most over the years are often small and simple. In easy times and tough times, what seems to matter most is the way we show those nearest us that we’ve been listening to their needs, to their joys, and to their challenges.”

Indeed, the essence of life seems always to come down to the small and simple things, to the things we often don’t think about, the things we take for granted, the things we forget are gifted to us as human beings: our ability to see and hear, taste and smell, walk and breathe.

I am gently reminded of such gifts each time I play hide-and-seek with my three-year-old niece, Emma, who was diagnosed with Usher Syndrome (type 2A) – the most common genetic cause of combined deafness and blindness – two years ago. Hiding together while her older sister counts to ten, she mimics my “shhh”, only to let out a squeal, revealing our location and screaming in delight at the sight of her sister. Equally delighted by the sound of music, Emma is a natural entertainer, grabbing her microphone and eliciting howls of laughter with her wild dance moves. How precious the gifts of sight and sound truly are.

Usher Syndrome Coalition

And yet, in a world that dangles unending distractions before us, shifting our attention away from the beauty and miracles that exist in mundane living, we all too often take these gifts for granted – forgetting to marvel at the sight of a cloud-dusted sky, or the sound of a singing bird.

For those with Usher Syndrome, each sight and sound is a miracle, something to savor and treasure; a gift that asks nothing but to be beheld. But for the rest of us, the gifts of sight and sound endow us with a responsibility – a responsibility to utilize these gifts wholly and deliberately, to create opportunities that allow us to exercise them not just for our own benefit, but for that of others. Indeed, turning our eyes and ears to others – by acknowledging, listening, and being fully present with them – can be one of the greatest exercises of those very gifts.

Turning again to the words of Mister Rogers,

“More and more I’ve come to understand that listening is one of the most important things we can do for one another. Whether the other be an adult or child, our engagement in listening to who that person is can often be our greatest gift. Whether that person is speaking or playing or dancing, building or singing or painting, if we care, we can listen.”

As we approach the third annual global Usher Syndrome Awareness Day on September 16th, a day uniting all affected families that precedes the autumnal equinox, it is my hope that we might honor all Usher patients by using our seeing eyes and hearing ears knowingly and purposefully; to relish the ability to hear and see; to help “the other” by listening – truly listening.

Usher Syndrome Awareness Day

After all, the goal of Usher Syndrome Awareness Day is not only to raise awareness and money for research aimed at finding a cure, but to create opportunities for the stories of the affected to be heard – so that we might be able to listen to “their needs, to their joys, and to their challenges.”

As for Emma, her story, at three years old, is one filled with many joys. She just became an older sister to a baby brother in July; she started preschool in August; she will be a flower girl at her uncle’s wedding at the end of this month; she is quite the talker and the most expressive child I think I’ve ever met – “no way!” she exclaims, opening her mouth in disbelief. She sings and dances, and loves the outdoors, working alongside her daddy in the yard.

Emma is one of many children and adults with Usher Syndrome, all with their own joys and hopes, challenges and needs. As we prepare to “Own the Equinox” on September 16, let us turn to them and to their stories, with a seeing eye and listening ear:

Stories from the Ush Blog

’My Vision is Like Looking Through a Straw’” –BBC News

Blind-deaf Golfer Gets Second Place at Provincial Championships” –Ottawa Community News

’It Changed All My Preconceptions’: Meet the Boys Living with Usher Syndrome and Defying Darkness” –SBS

Coeur D’Alene’s Own ‘Rambo’” –Idaho Statesman

Parents of Vision-Impaired Child Want to Help Others” –Fox45

Ottawa Boy Raising Funds, Awareness for His Rare Genetic Disorder” –The Times

Local Family Living and Learning with Usher Syndrome” –South Coast Today

Luke Dower, Brother of Kemsley Teenager Alice Costen, is Jumping out of Plane in Aid of Ushers Syndrome Charity Molly Watt Trust” –Kent Online

Usher Syndrome Awareness Day
Emma, her brother Henry, and sister Annabeth
If you feel so inclined, please consider sharing this post and/or making a donation to the Usher Syndrome Coalition, founded in 2008 to help raise awareness and accelerate research. Thank you!
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This piece was also published on the Usher Syndrome Coalition blog.
You can read more about Emma’s story here.

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