Rather A Privilege

Taking two children to a store doesn’t seem like a big deal. However, Nathan is five ears old and Wesley is sixteen but cognitively closer to a three-year old. He has autism. Genetics are strong, though, and like his mother he loves to go shopping.

We pulled in to the lot of Target and I turned around to see that Wesley managed to take off both his socks and shoes. I glanced out my window and saw families just jump out of the car and go in. For a moment I envied the simplicity of their lives. I envied the fact that they probably did not even know the ability to go easily into the store was something to be envied.

I put Wesley’s socks and shoes back on. His feet are deformed and socks do not go on easily so it took a few minutes. I made sure his sippy cup and two extra bottles of Pediasure were in my purse. I grabbed the IPad with the most charge to ensure it wouldn’t die while in the store for that could be catastrophic. I checked that everything had straps and clips to tie to the cart as to not injure anyone from flying objects. Wesley often throws items when he is no longer in need of them. Sometimes he throws them to get your attention because he cannot speak. A simple solution to him can be painful for the one getting hit in the head with a full cup.

I unstrapped his seat belt which has a special safety device to prevent him from unbuckling himself. Wesley’s brain often takes time to process what is occurring so he rarely gets right out of the car. He has to sit and look around and wait until he understands what we are doing. Life with Wesley requires patience and I don’t mind waiting. Forcing him to move faster only stresses him out in a way I do not understand.

Finally, we stood outside the car and I looked toward the entrance. It might as well have been a mile away because one million things could happen between where I was and where we needed to be. Wesley might decide he wants to go home. He might want to sit down in the middle of the parking lot and not move until he is ready. He may have a melt down for reasons I will never know. All the while I will have to keep Nathan safe both from cars and Wesley’s “enthusiastic pats”.

As I began to feel overwhelmed and I had not even reached the store yet I remembered all the times I held him in the Pediatric Intensive Care Unit unsure if he was going to live or die. I thought about the time when he was only one year old and was connected to so many monitors I did not even know what some of them were tracking. He would cry every time I tried to lay him down. I sat in the rocking chair of the hospital most of the night trying with all my strength to stay awake to keep holding him. Eventually I relented and knew sleep would not be defeated. So I placed him in the crib and crawled in next to him. The next morning the nurse came in to find me curled up asleep.  She exclaimed “In all my years here I have never seen this.” I did what I needed to so that he always knew I was near.

In my heart’s mind I see the faces of dear friends who had to bury their children. I live in a world where children die at a disproportionate rate than most people’s experience. I know those parents would give anything to take 30 minutes to get from the car  in the parking lot to Target. They would give up an appendage to have to put their child’s shoes on for the fourth time before ten o’clock in the morning. I recall standing in a funeral home to offer my sympathy to a mother and father as their child laid in a tiny casket. I remember my heart breaking that they even make caskets that small and that my friends needed to buy one. From their perspective, I am sure, these are not minor inconveniences. Rather, they are privileges.

Standing in the parking lot I gaze at Wesley and I hear myself whisper, “Thank you Jesus.”