Last night, we had our big fundraiser for the year, Black Ties & Blindfolds. It was a great success. We raised funds for research for cures to these blinding retinal degenerative diseases and everyone who came seemed to have a great time!
I'll always remember the night for one thing. A wonderful young woman with a similar disease to my son came to me and said that she wished her mother had handled her disease like I handle my son's. I immediately wanted to hug her and fix all the things that needed fixing, past and present.
You see, it wasn't that long ago that children grew up with these diseases and had very little hope and very little help. Unfortunately, parents were told by doctors to prepare their children for a world of disability. Schools didn't have to do a thing to accommodate students. As a matter of fact, they could send these kids to 'special ed' even though their visual impairment had no bearing on their intelligence. I watched my super smart, engineer brother grow up with no help. The most he had was my mom talking to his teachers and making sure he was in the front of the class so he could see the board. By the grace of God, he successfully finished college and really did become a very successful engineer. Back then, my mom taught him strength. Her basic message was that he will have to suck it up and work harder than everyone else to succeed. He did!
Today, there is so much more help. I started the same way for my son... Suck it up... He did that very well. Then I finally got the message from awesome vision teachers and friends I've met through Foundation Fighting Blindness that he doesn't have to just suck it up. There are so many tools out there that will help him succeed. Now, my son and I seem to be on a mission together. We educate, fundraise for cures, and we make sure he is his own advocate. He's got to learn to ask for what he needs. People are absolutely willing to work with him. With my brother, they didn't have to. He often hid his visual impairment. With my son, it's the law and he announces it to his classes so the teachers and kids know and understand.
It's a whole new world. So, for those who grew up before all the ADA rules were put in place, I would say, "I'm so sorry that you had to grow up in that environment." BUT also, look at how much stronger you are as a result!
My role as a mother is to embrace my son, for all his abilities, to show him that this disease is not going to hold him back, to make sure he succeeds in whatever he wants to do, to keep him positive, to teach him how adversity will only make him stronger, and most of all to love him.
So, when this young woman came to me and said what she said, I felt a little glad that maybe I'm doing an okay job with my son, but I also ached for all the kids who grow up feeling like they've just been dealt this bad hand of cards and are left to handle it.
I hope to use MOMS for Sight for this very reason. We're not just here for our kids but we have to help all parents see what resources are out there to help so that no child ever has to feel the need to 'suck up' their visual impairment again. It's just too hard for kids to do that...and today it's no longer necessary.