It is a gift

I marvel at Little Bug every day, but have been more so recently as the anniversary of his diagnosis has come. I know I have neglected this blog, but I needed some space to appreciate from a distance this gift. Granted a year ago, this was not a gift in any sense of the words. This was a cruel joke that knocked me on my ass and took my breath away. It paralyzed us with fear and tortured us mentally.

I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.

He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.

When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.

Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.

This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.

And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.

To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.

My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.

I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.