My Misguided Quest For Normalcy
It's fitting that I'm writing this article after the day we had today. Today, my son was cleared to eat food! He hasn't been allowed to eat food since he was 4 weeks old, and he is almost 13 months old, now. When he was born, we discovered that he aspirated everything he tried to swallow, and so he underwent surgery to have a feeding button placed in his stomach. Since then, we have hooked a tube to his button, and a machine pumped his formula into his stomach.
But, now, he is OK to eat pureed food! I cried as I watched him swallow on the x-ray. I watched him use all of his face muscles to move the food to the back of his throat and swallow it while protecting his airways. It was beautiful; simply stunning. I'm so proud of all the progress he has made.
When the doctors told us he would need a feeding tube last June, I was hysterical. I was angry, and annoyed, and beyond depressed. I just wanted my son to be normal, you know? Normal. I wanted him to be accepted. His little hand was already going to separate him from his peers, and I was afraid if he had to keep the tube long term, it would just be another obstacle to “normal.” I was afraid to see him in pain, and I was afraid of his future.
But I was new to the special needs world. I thought these things were game changers. I thought they would make him different.
They do. They do make him different. And special. And amazing. And strong. But, they aren't HIM. My little man is not his feeding tube. He's not his little hand. He's not his repaired heart or his cystic kidney. He is just Jackson! But, he's not normal … because no one is normal. There actually isn't a normal.
There's no perfect human being that we hold ourselves up to and say, “Dang. So close.” Everyone is different, and everyone is insecure about something.
I was looking for his normal, in the beginning. I was planning the ways he could be active in sports, and I was researching which schools had the smallest class sizes so that the teachers would be able to pay more attention to him, and I was breaking my back to figure out how to help him learn to swallow so we could get rid of the button. It was mentally and emotionally exhausting.
However, I still do all of those things, but that's because I want him to be the best version of himself he can be. I want him to be comfortable and confident with his hand and to know he can do whatever he wants, as long as he gives it everything he has. I want him to know that no matter if he is tube fed for the rest of his life, it doesn't matter. His body is getting the nutrition it needs to live, and that is what's important.
He isn't normal. He's my special, brave, and funny little boy, who is fascinated by fans and Mickey Mouse, and who grins his big, cheesy smile when his dad or I get him out of his crib in the morning. He is amazing, and absolutely not normal. I would never, ever trade him for someone's version of normal.