Saskatchewan·First Person

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

When Heather Maurer found out her daughter had a condition that would render her blind by her late teens or adulthood, she was seized with fear and uncertainty.

I didn't know any children who were blind before my daughter was born

Heather Maurer hugs her two daughters, including eight-and-a-half-month-old Addie, right, who has a rare condition called aniridia. (Submitted by Heather Maurer)

This First Person piece is by Heather Maurer, a wife, mother and teacher in Regina. For more information about CBC's First Person stories, please see the FAQ.

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.

Heather Maurer says she became concerned about her baby's vision when she began noticed her dark eyes were consistently roaming and dancing, and not settling on objects. (Submitted by Heather Maurer)

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.

Heather Maurer's husband snapped this family selfie on a boat. (Submitted by Heather Maurer)

Through our grief, my husband and I began to learn more. In those first five days of becoming aware of my daughter's condition, we read about the braille alphabet, current adaptive technology, health-care specialists and aniridia.

The most comforting lesson was about others who were visually impaired but continued to lead full lives. We learned that there is life on the other side of diagnoses and conditions — a life where we hadn't lost a future for our daughter but had gained an "aniridic" family we've gained connection with online,  a new identity and a beautiful new perspective.

In the future, the onus will be on my daughter to advocate for herself and to educate others. She might get tired of teaching people about her condition, just as my husband and I may get tired of it.

Right now, Addie has an infectious, squeaky laugh and the cutest little smile that breaks out when her sister laughs, or when she gets a nose kiss or a side tickle. 

In the future, this little girl may be someone's sole encounter with a person with a visual impairment and therefore it is crucial for the experience to be positive. It will be a heavy burden to carry, but hopefully she will learn how to carry it with grace and that same smile we see and enjoy every day.

Maybe your child will be in my daughter's class one day, and you'll hear about how she always needs to sit in the front row or how she always prefers her back to the window so the light isn't shining directly into her sensitive eyes. Maybe you'll see a girl who looks just like a typical child, but she is pushing a white cane to indicate that the shadows on the sidewalk aren't holes and that the shiny glare from the sunlight isn't wet and slippery.

She probably won't change your life like she has changed ours, but she might give you pause. And you might remember my daughter's story.

Heather Maurer's daughters play together. (Submitted by Heather Maurer)

I hope you encourage questions from your children rather than shush them away. I hope you're not afraid to speak to me about my daughter's condition. I hope you see her for her smile or her abilities, not for her lack of eyesight.

When my daughter would fuss as a newborn, my elder daughter would coo, "It's OK, sweetie, I'm right here. Your sister's right here."

I hope my daughter hears that message — now and into the future — encouraging and rooting for her, whatever her choices may be. Because we're all right here. We're always right here.


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ABOUT THE AUTHOR

Heather Maurer

Freelance contributor

Heather Maurer lives in Regina and is a wife, mother, teacher and a lifelong learner.

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