My daughter's visual impairment taught me to see past my fear of the unknown

CBC

30th May 2022

My daughter's visual impairment taught me to see past my fear of the unknown

This First Person piece is by Heather Maurer, a wife, mother and teacher in Regina.

When I first found out my eight-month-old daughter, Addie, had a condition that would render her blind by her late teens or adulthood, I was seized with fear and uncertainty.

I wondered how my life and my family's lives would change, and I felt sad that the beautiful child in my arms could face additional challenges in a world that's not designed for her. It's not that I pictured her life being sad and lonely; it was that I couldn't picture what her life would look like at all having never met a child who was blind.

It would have been easy to get lost in the fear and uncertainty, to be consumed by the permanence of a situation. But I refused to believe that I, my daughter, or the rest of my family could be anything except "OK."

My daughter is rare; 1 in 50,000 to 100,000 to be exact. She has a condition called aniridia, which means that she has almost no irises (the coloured part that surrounds the pupil). The secondary conditions associated with aniridia will likely lead to blindness later in her life.

When she was born, the nurses in the maternity ward commented on her dark eyes and I immediately told them what I had heard for as long as I can remember: that I was my Granny's "black-haired, black-eyed girl." It looked like I was blessed with my own black-haired, black-eyed girl as well. My family and our medical team had no idea that her eyes were structurally different from any other eye we had ever seen.

It wasn't until she was six weeks old that she finally opened her eyes a bit more often. I noticed her dark eyes were consistently roaming and dancing. They didn't seem to settle on or track any objects, and there was no indication that she was looking at my face, even though this is something that most babies can start to do as early as two weeks.

When she was eight weeks old, I decided to finally lean into the concerns I had been suppressing. I searched Google for "blind 2-month old video" and "newborn vision." After finding little relevant information, I searched "only iris, no pupil." Up popped pages and pages about aniridia. I now understand that I was mistaken and she actually has a minimal iris and what looks like an enlarged pupil.

I knew immediately that I had identified her condition and that we needed to prepare for a life with a daughter who is visually impaired.

Thinking back, I find it difficult to identify the fear and uncertainty I felt at that time. Those feelings are driven by ignorance — not knowing any better because I've never had a reason to know any better and they consumed me.

I wanted to throw my hands in the air and say, "I can't do this." But I had been teaching my eldest daughter that if we learn more about the things that scare us, they aren't so scary anymore. We can get over our fears by learning more about what makes us fearful.

https://www.cbc.ca/news/canada/saskatchewan/first-person-visual-impairment-new-perspective-1.6468948