By Natasha Mercer, Finley's mom

Finley is a little boy with Usher 1F who lives with his parents in Newfoundland, Canada.

Don’t make the house too quiet when he naps, or you will get him used to sleeping in complete silence, then he will never sleep. This was a different type of parenting advice than the typical “sleep when the baby sleeps.” It was the type of parenting advice that made sense, the kind that came from experienced parents, the ones that truly knew what they were talking about. We expected blonde hair, blue eyes, lots of nursery rhymes and even more books. When Finley was in utero, we vowed we would read books to him constantly. We were dedicated to giving him the best opportunity to grow and develop into the smartest little boy - a boy who wanted to learn and thrive for nothing short of excellence. 

When we got the news that Finley was deaf, my mother’s intuition kicked into overdrive. I had a gut feeling that there was more to it. Months later, I was proven right and now here we are. Finley’s dad was speechless, motionless, sick to his stomach, and had a mixture of feelings, like guilt. He questioned why him? Why Finley? What’s next? What have we ever done to deserve this? We all want what is best for our children. We want happy, healthy and normal. We didn’t expect the countless hours of driving to and from appointments. We didn’t expect 60,000 KM a year. We didn’t expect the 25 physicians/ specialists/ therapists. We both work busy schedules. Our days off and vacation days are spent at doctors’ offices, but now more than ever we are dedicated to helping Finley take advantage of every resource that we can get our hands on.

There was no family history of genetic mutations, no history of deafness, blindness, nothing. No one expected this journey. But that is common with Usher Syndrome - you don’t expect it until it is you, your baby, your grandchild, your best friend. We had no idea what Usher Syndrome was, and now? It is everything we think about, every time we start our car engine, every time Finley looks into our eyes, every time we see babies younger than him walking, when our angel can’t yet stand, we mourn our baby’s future every day; often the sadness consumes us, but Finley is a 16-month-old who is the sweetest, most generous, pleasant child we have ever laid eyes on. His smile would light up a room. He graciously cuddles with everyone. He always shares, even his most favorite snacks; he loves to paint, drive his quad, bake cookies with mommy and daddy, and he loves everything that has wheels. With his cochlear implants, he loves to hear us sing, but more than anything, he thinks it is the funniest thing ever when the smoke detector goes off when daddy is cooking supper. 

A lot of people stare at us, and some will even point when we are out in public, and with his cochlear implant retention devices he is often mistaken for a girl. We always explain that his cochlear implants help him hear like glasses help people see. But truthfully, it is glasses that allow people to see with poor sight, but not blindness - just like hearing aids help people with some hearing loss hear, but not deafness. We have cochlear implants for deafness, so now we need a cure for blindness, for our children, for our family, both present, and future.