One of the things that I thought I would miss out on was the ability to be a parent. I wasn't worried so much about how I would be a mom but instead what I thought I would be taking away from a child. I started imagining future conversations with a child asking me "why do I have the blind mommy?" Instead of looking at how a visual impairment could benefit a child I looked at the lack. I didn't look at the alternative where being blind could help teach a child about compassion, empathy, patience, perseverance and self-belief. Yes kids can be discouraged at times but this isn't a phenomenon that is isolated to families where a parent is disabled.
I did a Google search to see if I could find any information on the subject especially from the perspective of a child. Guess what, I did. I found an article written by Julie Reid discussing her experience. Not only did she have one visually impaired parent but both of her parents were. Her parents were able to have three kids, maintain a family, and have careers. She did say that at times she was frustrated especially as a teen having to describe landmarks to her parents on family trips. When asked if she would like to have seen what her kids looked like Etta Reid (Julie's mother) responded I'd like to have seen you,' my mother says, 'but it's not as important as people think'. Her father (Fred) in the article stresses the importance of getting to know someone over getting hung up on their appearance.
Over the past year of my Stargardt's journey I have met (via the internet) several women who are mothers living with the disease. I featured artist Yvonne Felix in a previous post. She was able to see the faces of her children clearer with ALIVIOS eSight Eyeware glasses. I recently found another Stargardtian (I think I just made up a word) Heidi Pearce who just wrote a book titled Mother Love about raising children and being visually impaired. I'm not exactly sure that I will be a mother myself one day that's still up for debate. I'm fortunate to have come up across these stories that show me that I can turn my impossible cant's into possible cans.
Read Julie Reid's full article here:A Childhood With Blind Parents
Buy Heidi Pearce's book Mother Love here
Check out my previous post featuring Yvonne Felix - Artist Yvonne Felix Thriving With Stargardt's