…what would it be?
I have a ton of answers if I really think about. But at the same time, do I really want those things to change.
I could wish about changing our finances. Where I’m living. My extreme shyness, which I’m told is probably not shyness at all but a social anxiety disorder. Health for family members. My weight. How disconnected I am from friends. The fact that I’m a picky eater.
But honestly, first thought goes to changing our youngest son’s diagnosis. I would take those years of therapies away for him in an instant. The hurdles he is going to (and will) overcome. The ignorance he’s going to face because people can’t see that he’ll just have different abilities, not disabilities, that are unlike most other children.
He’s my 1 in 1,000,000, actually my 1 in a 1,000,000,000,000 if you want to more specific. And really, it’s even a higher number than that. There are 7 billion people in this world and there are only 7 children/adults that have ever had Noah’s exact mutation that they’ve been able to test since finding the gene in 2004. 7. He’s definitely a rare and special boy. But, he would be all that without CHARGE. He is a one and only.
I hear a lot of people say they wouldn’t change things. It makes them a better person. A better mother. But maybe I’m selfish because I would change it for him. In an instant. Faster than anyone could blink their eyes. I understand this path is filled with highs higher than highs and it teaches you so much about life, strength, determination, etc. but I would like to think I could learn these lessons without my son having to bare the brunt of it. He’s got little shoulders.
But then I think, it is who he is so who am I to want to change him? He’ll always have the biggest bluest eyes with the cutest little grin. His laugh is everything that is great in this world.
But if I could remove some of his struggles I certainly would.
I don’t ever want him to feel isolated and alone or only feel like he is the boy who has CHARGE. I want him to feel like part of the whole world, not just this one little piece that he happens to belong to. I don’t want him to be defined by the way he was born. I want him to defined by his actions, his character, and his abilities. So yes, I would make some of the changes that would get in the way for those things to happen.