One of the most difficult things about Ethan's diagnosis for me is knowing that there is nothing that I can do to change it. I can't cure it, I can't even make it a little better; and as a parent, that is really challenging to accept.
Recently, I have been doing some soul searching and trying to find more ways that I can be involved with the Foundation Fighting Blindness. Not just in raising money for the important research that they do but also raising awareness. Raising awareness of this amazing foundation and all that they do for the visually impaired community. Also, raising awareness of the visually impaired community.
I did a project in college where I went out into the community and acted as a blind individual. I wore dark sunglasses and kept my eyes closed. My sister accompanied me on this trip. We went to the grocery store and to McDonald's. Something that really surprised me was how unaware people are. I was shoved, bumped into, and had the door slammed in my face. No one seemed to notice that I was "visually impaired" and if they did, they didn't seem to care. When we visited McDonald's, the cashier noticed that I was "blind" and something very interesting transpired, he talked to my sister the entire time!! He never said one word to me, and he was even asking questions about me like "is she going to get a guide dog?". It was a surprising to me that just because I couldn't see, he automatically assumed I couldn't speak for myself. I think that this opens up an important perspective, something to really think about. It gave me some insight into what blind/visually impaired (and other disabled individuals) deal with on a daily basis. We need to be more aware of those around us, and aware of the way that we are treating people.
I've been making phone calls for our local Cincinnati Vision Walk trying to gather support for the walk. Once again, people never cease to amaze me in their lack of interest in helping others. I have been pushed aside, lied to, and hung up on! I took a break from it for a week or so because I was really starting to lose heart. I prayed about it, and I returned to it this week. The response I received this week was slightly overwhelming! The first person I called actually gave me the time of day, they listened to what I had to offer and then they agreed to make a charitable donation. It reminded me why we are doing this....
We are doing this for our son. We are doing this because there is simply nothing else we can do for him. THIS, is how we FIGHT. We make people aware that every person matters, sighted or not, hearing or not, physically able or not. We raise money to support research that might some day save our sons vision! We grow one heck of a support system for our son and our family to get us through this messy life. We give our son a vision, because we can't give him his sight.
Please hear me when I say, we must be kind to everyone. We must be willing to listen, even if we don't have time. You taking the time to listen to someone's story may be just what they need to get them through the next day or the next week.
"Be devoted to one another in love. Honor one another above yourselves." Romans 12:9-10
Facebook is not my favorite internet pastime; however, it has opened up a lot of opportunities for us to become connected with other people/organizations that can help us navigate these waters. Something very interesting that I came across most recently was this travel company called TravelEyes. It is a company that organizes trips around the world for sighted and blind travelers. The travelers are paired together with someone different each day on their trip. It was founded by Amar Latif, a blind man whose dream was to travel the world. He created this company so that blind people would realize that where there is a will, there is a way.
I encourage you to visit his Facebook page and see the great work that he is doing for blind AND sighted individuals! https://m.facebook.com/TraveleyesLtd/
We will definitely keep this on our radar, as this could help Ethan enjoy travel as he gets older and his vision declines.