Seeing Our Child Who Is Blind

Emily Coleman sitting in the car with her husband and son, Eddie, smiling at the camera

Lately, I’ve been watching Eddie with intense interest. Paying attention to the many ways he communicates, verbal and non-verbal. Admiring how he has begun problem-solving to get what he wants. Noticing how his whole body reacts when he’s upset, frustrated, or lacking words. I think to myself, “I see you.”

We recently took our annual trip across the state to see some of Eddie’s medical specialists. These are doctors he’s had relationships with for most of his life. These people “see” him too. They know how to communicate with him and how to calm his anxiety. When performing any kind of exam or procedure, they know how to talk him through it so he can participate instead of having something done to him.

Eddie’s Dad and I have become accustomed to these visits, and we look forward to the one weekend a year we spend traveling with just Eddie. We aren’t nervous because, after almost 12 years of this, surprises are hard to come by. He’s been diagnosed many times. Mostly accurately, but sometimes very inaccurately. We’ve tried many different interventions, some successful and some not. We enter each new appointment with an open mind and a willingness to trust what we hear.

These appointments weren’t always easy, and I often ended up in tears. Tears for new information we weren’t ready for or tears for information we already knew but were afraid to accept. It’s been awhile since I left a doctor’s office with tears in my eyes, but it happened again this year. It wasn’t something said to or about Eddie…it was something said to and about us.

As I finished packing up Eddie’s things following an hour-long visit, his neurologist said something very surprising to me. He simply said, “It’s a lot of work isn’t it?” That’s it. Just that one short phrase. At first, it seemed so odd I didn’t understand what he meant. I said, “You mean coming to this appointment? Or, helping Eddie? Or…?” He said, “All of it.”

When I made it out to the truck and shared what the doctor said with my husband, I immediately began to cry. We spend so much time “seeing” Eddie and hoping others “see” him that we never notice when people “see” us. It’s hard to accept that honest regard for being a special needs parent, but sometimes it’s exactly what we need to hear.

So, for all the other special needs parents I run into at the grocery store, in the mall, or on the street, I see you. I see how much your child means to you. I see what it takes to get them through the day, and I see how hard some days are. I’m not staring or watching because I feel pity or sadness. I’m watching because I see…and I know. It’s a lot of work, isn’t it?

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