Another year has passed since I wrote the captivating piece, “Mr. Eddie Turns Seven.” Sarcasm aside, it is amazing how fast the time goes. I’m sure we all feel ourselves racing against the clock in our personal lives, but that feeling grows ten-fold when you have a child with a disability.
As another year passes, we find ourselves celebrating the successes, of course, but also terrified at how big the list has gotten of the goals yet to be met. Another year forward means another year lost towards “catching up” with peers. When he was a baby and I was told that Eddie has Optic Nerve Hypoplasia, I was also told that Eddie would likely “catch up” by the time he was seven. This is a very optimistic opinion that I clung to, and is true for some children with his diagnosis, however hasn’t been true for Eddie.
Within the last few years, it has sunk in that Eddie will not be a typically developing child. He cannot be compared to the “norm” in his age group, and likely will never be compared to the “norm” as an adult. Understanding that, and truly accepting that, has given me freedom to embrace who he is and will likely be.
Yes, Eddie is eight, and he isn’t playing little league. He isn’t riding bikes. He isn’t reading. However, that isn’t bothering me because I’m no longer waiting for him to “catch up.” I’m simply very excited that he IS using his long white cane. He IS communicating. He IS looking for braille in every book he can find. He IS absolutely adorable. Like I’ve said before, I’m choosing to focus on the things that he IS and accepting the things that he isn’t.
I realize that every day we can’t be so optimistic, and there will be moments when I long for a future he was never meant to have, but I don’t wallow there. Instead, I continue to push him to get more “IS” in his life. I know that I have to accept 8-year-old Eddie for who he is to support him in whatever goals he can accomplish, and to provide him with the absolutely best resources I can find.
This year, I was celebrating his eighth birthday without him. I was attending the AFB Leadership Conference in Chicago, which in the end is because of him and for him. At this conference, I learned a multitude of things that will help me as a mom and also as a teacher of the visually impaired. I’m taking back knowledge that simply can’t be achieved without the face-time provided by true leaders at this conference.
Even though I missed having face-time with Eddie at his birthday breakfast, he was taken care of by his dad and sisters. They decorated for a king and I’m sure the girls helped open every last one of his presents. I talked to Eddie on the phone and sang him “Happy Birthday.” He replied with, “Yes! Birthday today! Yay!” Then I got to hear his unique and unmatched laughter that simply makes me happy. “Yes!” Eddie is 8, and I’m as grateful for him now as I was at the day of his birth.