Celebrating My Grandsons on Usher Syndrome Awareness Day

Fran and John Hickmott with grandsons Ethan (front right) and Gavin at Devil’s Glen Country Club in Ontario, Canada in 2010.

As I struggled to accept the diagnosis, I wondered how my daughter and son-in-law would ever tell my sweet grandsons about their condition. I was shocked when I learned they had started talking about it right away and my immediate thought was to protect them. My daughter explained that she believed understanding their condition early on would help them face the world with confidence and without shame. I knew my grandsons were already comfortable with what being deaf meant, and she felt that giving them the right language and tools would help them get comfortable with the term deafblind and continue to advocate for themselves as their vision changed.

My role as a grandmother to Ethan and Gavin has been one of love, support, and learning. I’ve been there to witness their incredible strength and watch them excel despite their struggles. We were there for many of their medical milestones, including when they received their first cochlear implants. When we visited, we joined their appointments in Miami, New Brunswick and Toronto, and watched them grow stronger through speech and physical therapy. Their lives were filled with doctors’ visits, but we saw how their parents worked to balance their appointments with fun. And each visit trip gave us a chance to have a new adventure with them. We took them to sugar woods, museums, and to visit Grampy’s retired Navy ship. They never complained about their many appointments, and in turn, their resilience taught us about owning your journey with confidence.

I’ll never forget the time Gavin, at four or five years old, stood on his chair in a fast-food restaurant and proudly explained how his cochlear implant worked to the people behind us. The boys’ ability to find humor and confidence in their situation was a constant inspiration. He finished his explanation by telling them, “If mama is yelling at me, I just flick it off and I hear nuffin’.”

On one of our excursions, Grampy started singing “Hit the Road Jack.” Ethan listened for a moment, then asked, “Why would Jack hit the road?” He laughed after I explained the expression, and we all sang and sang. They loved it. Another time, at breakfast, I noticed Gavin’s cereal bowl was close to the edge of the table. I said, “Be careful, don’t upset your bowl.” Ethan looked at me and said, “Nanny, bowls don’t get upset, people get upset.” These two moments taught us a valuable lesson. The boys were still learning to understand language through their cochlear implants, and these experiences were vital. We were not just having fun; we were actively helping them connect what they heard to the wider world.

Fran and John Hickmott with grandsons Ethan (left) and Gavin (right) in 2018 in Mississauga, Ontario.

It was amazing to see my grandsons’ pictures on billboards in Times Square as part of the Usher Syndrome Society’s “Every Second Counts” campaign in 2024. Then to see their portraits again this year, actually on Usher Syndrome Awareness Day in 2025, was absolutely incredible. I can only imagine the immense amount of work that must have gone into getting that kind of visibility in such an iconic location on the actual day. To als watch my grandsons’ willingness to be vulnerable and share their experiences in the Sense Stories videos shows me how strong and resilient they are. Knowing that they and their parents are part of these powerful awareness campaigns makes me very proud.

I am also proud to be able to be part of raising awareness myself. My hometown of Quispamsis was the first municipal council in Canada to recognize the day in 2018. Other towns in my community now recognize Usher Syndrome Awareness Day in their council meetings. My letter to the premier of New Brunswick resulted in the provincial proclamation of Usher Syndrome Awareness Day in 2024, and again in 2025 proclamation. I want to continue to do what I can to advocate for my grandsons and for all families affected by this condition.