American Action Fund for Blind Children and Adults
Future Reflections Winter 2026 BEGINNINGS
The Day I Lost My Daughter
by Penny Duffy
From the Editor: Burrowing through an archive of old emails recently, I came across a message from Penny Duffy. As many readers of Future Reflections are aware, Penny was a longtime member of the NOPBC board and a passionate advocate for blind children and their families. Tragically, we lost Penny to cancer in the fall of 2023. This post shows that she was thinking about our blind children even as her health failed. Here is Penny’s email:
From: Penny Duffy
Sent: Thursday, July 6, 2023, 11:57 p.m.
To: Deborah Kent Stein
Subject: An idea for a Future Reflections Article
Hi Debbie,
I hope you make it safely back from convention. I am so bummed I could not be at convention this year. My health just wouldn’t allow it. I am so overjoyed that my now adult child was able to go.
At the end of June, I was inspired to write a Facebook post. It just came out. I thought it might make a good article, but maybe not. It needs to be polished a bit, and it needs an intro. The first line sort of sounds like Abby died. But in reality I did not lose her. I don’t know—let me know. I will share it exactly as I posted it.
Here is the post Penny sent me.
Thirteen years ago, I lost my six-year-old daughter in Animal Kingdom. She was found quickly, but she got lost because she couldn’t see my sister.
Thirteen years ago, I brought my daughter to LensCrafters, thinking she needed glasses. The optician said, “She is acting like she is blind.”
Thirteen years ago, we confirmed she had the genetic condition that runs in my family and causes blindness, Leber hereditary optic neuropathy (LHON). Within a few weeks we confirmed that she was blind with limited peripheral vision.
My daughter learned Braille. She learned how to use a long white cane. Later on, she learned to ski, and then to ski race!
My daughter showed that she is a compassionate and caring human. She worked hard. Hard! Society doesn’t make it easy to be blind.
We learned about the education my daughter would need. I met lots of amazing moms. Yes, there were dads, too, but lots of moms! They showed me their battle scars and shared their lessons.
I learned that my daughter needed to be the driver of her own life. She wasn’t going to learn Braille unless she wanted to learn it. She wasn’t going to embrace technology unless she wanted to use it. She wasn’t going to use the cane unless she wanted to travel independently. All I could do was connect us to other blind people and learn from their lessons.
I connected my daughter to blind peers and blind adults. I tried to make sure she had no shame in growing up to be a blind woman. Cane to the front. Be proud!
My daughter grew up to be a regular teenager who also ski raced. She just finished her first year of college, with a double major and double minor. She is living more than a thousand miles away from home, in a city she doesn’t know. She just jumped on public transportation on her own to hang outside of a concert she didn’t have tickets to. She left with an armful of friendship bracelets and a huge smile. I couldn’t be more proud!
None of this is remarkable. Blind people do stuff like that every day, but none of that seemed possible thirteen years ago.
So, I tell that scared mom from thirteen years ago, “It’s going to all work out. She has this. Your little girl is going to be just fine.”
I am just a hack mom. Every right turn I made was due to the lessons I learned from another mom. My daughter’s achievements are her own, and I am so proud of the smart, strong blind woman she has grown up to be.
So, my advice is to be a hack mom. Surround yourself with battle-strong moms. Accept that you won’t ever completely understand your child’s experience, and that’s okay! Surround her with blind people she can learn from.
I don’t take credit for my daughter’s achievements. It’s an honor to be her hack mom!