When my first daughter, Ava, was born profoundly deaf, my husband Jeff and I thought it was a fluke. Then Stella was born two and a half years later with the same condition. We realized it was likely genetic, but doctors had no answers for us. We were living at a base in Anchorage, Alaska, at the time, because Jeff was an Air Force captain and fighter pilot. On Nov. 16, 2010, he had to go in for a nighttime training session. I had some other wives over and was coloring their hair, and the girls were tucked in and sleeping. That’s when Jeff’s F-22 Raptor malfunctioned, cutting off his oxygen supply. His jet crashed into a snow-covered valley between two mountains. Ava was 5, and Stella was only 2 when Jeff died. Three months later, we moved to Avon and bought a house within walking distance of my sister. Slowly, we got used to our new life. It was 2013 when I finally discovered the cause of the girls’ hearing loss — a rare genetic condition called Usher Syndrome that also affects balance and leads to severe vision problems. I founded the nonprofit Sisters for Sight with the goal of raising awareness and research money. I also found love again with Nick Sweetnich. Our baby boy Vincent was born in September
» After Ava was born and we found out she was completely deaf, we were really sad about it, probably for about two days, before something clicked. This is what we’ve been given. I just jumped into research and enrolled myself in a sign language class. That was our main form of communication for her first year. She was a really happy baby.
» There are days that I feel overwhelmed about what their future could be like, and scared for them, and sad for them. I thought deafness was the end of the world when we first found out. Usher Syndrome was a curve ball I was not expecting. I think, Oh my gosh, my sweet girls. For them to go blind…. We don’t know when it’s going to happen. Some people lose their sight faster, some slower.
» Sisters for Sight is therapeutic. It’s a way for me to feel like I’m doing something proactive. Right now I just have to slowly prepare them. They don’t know the scary side of everything. We deal with things as they come up, as it’s appropriate for their age. 
» The girls have had eight surgeries between them. A woman who has cochlear implants gave me really good advice. She told me to have a lot of patience. It’s exhausting when you’re first learning to hear, just from the amount you have to concentrate. Nowadays, I even forget that they have them on. The girls are completely deaf, but their speech is excellent.
» The girls adore Nick. We found love again. They call him their “Earth Daddy.” When he came into the picture, I saw such a difference in Ava, who was having a really hard time. It was like a weight was lifted off her shoulders. I just really saw her coming back to life.  
» You never know the strength you have until you have no other options left. Such is life. Everyone has a story.