As I took a jog through my neighborhood, I saw a young mother and son walking by and smiled at them. I was taken aback that they didn’t even look at me. That’s when I realized I lacked my babe magnet who was at home with her dad.
I’ve gotten used to and even expect the looks that any mother gets when out with her child, but many times my looks are just a few seconds longer. Sometimes they are followed by the typical, “What a cute baby!” then at times I get the “Oh, she’s sleeping!” or even more, the “What’s wrong with her eyes?”. At first it broke my heart every time someone thought my very awake baby was asleep or when they asked me about her eyes. I wasn’t at peace with my precious baby’s unique look, the unknowns, my fears of her under anesthesia, her first day of kindergarten, bullying in middle school, if it meant more than just her appearance.
Now my little one is 2 and I have a toolbox of my go-to’s that I’d like to share. I am so proud of her special look and have come to appreciate how memorable she is. Just this week there were two times that what I thought was a complete stranger, said, “Oh, that’s M-! I remember her from storytime a couple months ago” or “I met you at Trader Joes last fall.”
But we still do get some interesting responses from strangers, so when someone needs a response, here’s my approach:
I try to model responses that would make an older version of my child comfortable and ones that she could even keep in her tool belt as she gets older and begins to answer questions of her own. I know that the peace I have with her BPES might flounder as she grows and new challenges emerge, but for now I have found that my little girl is more than perfect in my eyes and I am grateful for all she has taught me about BPES and about life.
-Written by Anela, a mother of a 2 year old with BPES
*This blog is a place for the BPES community to share their stories, challenges, fears, and celebrations. I know that this first post might simplify some struggles many have faced so I hope to expand the conversation with many different perspectives. If you would like to share your story please contact us! Also, please comment if you have other responses that have worked well for you! -Anela
I’ve gotten used to and even expect the looks that any mother gets when out with her child, but many times my looks are just a few seconds longer. Sometimes they are followed by the typical, “What a cute baby!” then at times I get the “Oh, she’s sleeping!” or even more, the “What’s wrong with her eyes?”. At first it broke my heart every time someone thought my very awake baby was asleep or when they asked me about her eyes. I wasn’t at peace with my precious baby’s unique look, the unknowns, my fears of her under anesthesia, her first day of kindergarten, bullying in middle school, if it meant more than just her appearance.
Now my little one is 2 and I have a toolbox of my go-to’s that I’d like to share. I am so proud of her special look and have come to appreciate how memorable she is. Just this week there were two times that what I thought was a complete stranger, said, “Oh, that’s M-! I remember her from storytime a couple months ago” or “I met you at Trader Joes last fall.”
But we still do get some interesting responses from strangers, so when someone needs a response, here’s my approach:
- If I can tell the person doesn’t really want a thorough explanation, which boy do I have one, I smile and say, “She was born with little eyelids, she can see just fine.” Then walk away.
- If it’s a person I know I’ll see again like the checker at the grocery store, I start with the initial response, then “her smaller eyelids are caused by a genetic syndrome that surprised us too. It’s called BPES.”
- If it’s a kid at a park, I’ve realized that it’s usually the most concerned and sweet ones that care about her eyes. I reassure the child and the caretaker with a smile and go with my initial response. Then I ask if they have any questions and answer honestly “yep, she’ll probably have surgery someday” “it makes her special just like your curly hair makes you special” “don’t worry, she can see all she needs to play at the park just like you!”.
I try to model responses that would make an older version of my child comfortable and ones that she could even keep in her tool belt as she gets older and begins to answer questions of her own. I know that the peace I have with her BPES might flounder as she grows and new challenges emerge, but for now I have found that my little girl is more than perfect in my eyes and I am grateful for all she has taught me about BPES and about life.
-Written by Anela, a mother of a 2 year old with BPES
*This blog is a place for the BPES community to share their stories, challenges, fears, and celebrations. I know that this first post might simplify some struggles many have faced so I hope to expand the conversation with many different perspectives. If you would like to share your story please contact us! Also, please comment if you have other responses that have worked well for you! -Anela
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