Lately, Iāve 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 heās upset, frustrated, or lacking words. I think to myself, āI see you.ā
We recently took our annual trip across the state to see some of Eddieās medical specialists. These are doctors heās had relationships with for most of his life. These people āseeā 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.
Eddieās 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 arenāt nervous because, after almost 12 years of this, surprises are hard to come by. Heās been diagnosed many times. Mostly accurately, but sometimes very inaccurately. Weāve 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 werenāt ready for or tears for information we already knew but were afraid to accept. Itās been awhile since I left a doctorās office with tears in my eyes, but it happened again this year. It wasnāt something said to or about Eddieā¦it was something said to and about us.
As I finished packing up Eddieās things following an hour-long visit, his neurologist said something very surprising to me. He simply said, āItās a lot of work isnāt it?ā Thatās it. Just that one short phrase. At first, it seemed so odd I didnāt understand what he meant. I said, āYou mean coming to this appointment? Or, helping Eddie? Orā¦?ā He said, āAll of it.ā
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 āseeingā Eddie and hoping others āseeā him that we never notice when people āseeā us. Itās hard to accept that honest regard for being a special needs parent, but sometimes itās 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. Iām not staring or watching because I feel pity or sadness. Iām watching because I seeā¦and I know. Itās a lot of work, isnāt it?