The other morning I woke up with my 7-year-old in bed with me (which happens sometimes) and we were listening to Eddie down the hall. He typically wakes up and immediately turns on his bedside radio, which is how we know he’s up. As we lay there quietly, my daughter started peppering me with questions about her brother who is blind.
CC asked, “Mom, why does Eddie like to listen to the radio?”
I replied, “It’s a little bit like when you binge watch “Monsters High” on Netflix. He enjoys listening to music, and he can do it all day long.”
CC said, “But he doesn’t listen to just music, sometimes he listens to people talking.”
I explained that he likes the sound of some voices, and also might be interested in what they’re talking about. Then, the questions got harder.
CC said, “Mom, how is Eddie going to learn math and reading?”
I said, “It’s hard for him, because his brain works different than ours.”
CC followed up with, “Right, cause he’s not just blind. Blind kids think learning braille is really easy.”
I started tearing up as she really began developing a “concept” for Eddie and all the unique components that make him different from her.
CC then said, “So, if his brain works different, is that why he says “Gum, please, OK!” instead of just “yeah” when you ask him if he wants a piece of gum?”
“Yes,” I said.
“Is that why he doesn’t talk very much, too? Why he doesn’t say things like “can’t” and “don’t?” Cause his brain is different?” CC asked.
“Yes,” I said, because it was all I could manage to say as I tried not to cry.
Finally, CC said, “If he was just blind, he’d probably just talk like the rest of us.”
I quietly nodded as she found herself comprehending the truth we, too, had to understand in year’s past as Eddie’s developmental delays only grew in scope. I again found myself grieving inside the loss of not a sighted child, but the loss of the child I once thought was “only blind.”
It’s amazing how many different times and how many different things we must grieve when we have children with special needs. On this particular day, I couldn’t help feeling sad, but I was also grateful that CC was developing an understanding of what makes Eddie “tick” and was so matter-of-fact about it. The more she understands him, the more love they can share with each other, which is why I was able to catch them playing together the other day.
Eddie and CC used to be like oil and water. He couldn’t stand to be in a room with her, and her feelings were hurt regularly because of it. Recently, I found them playing a game together in the living room that had them both giggling and Eddie asking for “more, please” over and over again. Many things make him different, but there are so many more things that make him the same.