Three times since Eddie was born I have been asked to participate on a “parent panel.” This is a great experience to share with other parents our story from the moment Eddie was born until where we are today. I can honestly say I was a pillar of strength twice and a sobbing mess once. Admittedly, the time I cried the whole time (which wasn’t pretty), I was 7 months pregnant with my youngest. I have no idea why I even agreed to share on that occasion.
The last time I was on a “parent panel,” I was asked by other parents how we handle stranger’s questions and stares in relation to our son. I’m sure we all find ourselves daily subjected to questions, comments, and stares that we have to deal with. This was particularly true for us when Eddie was in the toddler stage. He wasn’t talking, walking, or looking at anybody that tried to interact with him. Because nobody could pinpoint what exactly was “up with that kid,” they simply stared and wondered.
My answer to how I deal with these situations was simply that it varies depending on my mood or how my day is going. I have often thought the next person that said, “He is SO sleepy,” may be the victim of my building frustration. I wanted to have t-shirts made for Eddie that said, “I’m not sleepy…I’m just blind.” I longed for the day he could use a cane so at least people would know “what was up with that kid.”
Ultimately, I tried to stay positive. Days I felt like it, I would educate strangers that seemed interested and days I didn’t, I simply said, “Yes, he is SO sleepy.” I’ve heard of other parents carrying business cards of their child’s condition with a website to find more information. I thought this was great because you don’t have to share your child’s life story, but you are educating your community, which your child will benefit from as they get older. One day when I am organized, I plan to make up such cards for Eddie.
I’ve found the greatest way to share about Eddie is with other children. Kids are so curious and they aren’t afraid to ask questions. One child recently asked when I was going to take Eddie to the doctor to get his eyes fixed. (Like we just hadn’t made time in the last six years.) Through talking to him about Eddie and that he would always be blind but that was OK, I was educating his friends and his parents.
Simply put, I try to realize I always have a bigger audience then just one person and how I portray Eddie will be how others see him as well. It is best for strangers to remember that blind children do exist and are highly capable; instead of remembering the child’s crazy mother who yelled at them in the supermarket.