Today's blog post is written by my husband. It was an email he sent me and I immediately wrote him back and said, that's the next blog post!
Read below:
I was thinking about Kiefer. Through some miracle of sperm meeting egg, he developed a superpower. We think of gene abnormalities as being something negative. Many superheros go through a genetic mutation to become 'super-powered'. The Hulk, Spiderman, etc.
That's what happened to Kiefer. His superpower is kindness, endless capacity for love, giving without any need for reciprocity, and the ability to bond people together. He is pure innocence. He calls out language injustice ("language!"), heals broken days ("hug?"), and brings people together ("will you be with me forever?").
It's not that he won't be able to have a productive, happy, adulthood...it's that we and others will judge him with our lens. It is not he that's at the disadvantage, it's us. We cannot understand his level of happiness and his desire to be around us. He is more content than anyone I know. He asks for almost nothing, he's happy with the smallest of gestures. The question is not 'will Kiefer have a fulfilling adulthood?' the question should be "how can I be more happy and content like Kiefer?"
I love him. I love all his little quirks. "Fun fact!", "Can I ask a question?", "Did you know...". He's a walking encyclopedia of information and misinformation. He's an interesting person and it's a privilege if you get to know him.
The issues that I have with Kiefer, I've discovered, are actually my issues. I sometimes lack patience, not because of him, because of everything else that is going on. I sometimes get frustrated when he spills or gags. Then I think, "really?? You're frustrated that his seizures made him spill milk? You're frustrated his condition gives him a strong gag reflex?" My lack of empathy surprises me and shames me.
We still have to raise him to be respectful of social norms. He needs to learn to be patient when he wants to share a fun fact. He has to learn to be appropriate in a world where appropriateness is a nuance, based on calculating many factors to get it right (who's in the room, how close a friend/relation they are, what are the feelings and beliefs of the people in the room...)
As neurotypical people, our brains interpret so much of this virtually instantaneously allowing us to tailor our content to the audience.
With Kiefer, it's just innocence. "I like Maive. I'm going to hug and kiss her and I'm going to buy her a diamond. Because I like her and that's what people do."
My pledge is to try and be better. Understand that the issues, mostly, are mine. That I'm tired. I miss my wife. I'm stressed about life stuff. The other kids get it and I need to do better. Kiefer is teaching me how to do better.
I love you and I love us. We are going to be great, all of us.
❤❤
