I get it.
I hate that my daughter will need so much surgery. I hate that she has had so much surgery. I hate that my kids are all familiar with hospitals and ambulances. I hate that she cannot call out to me or come to me in the middle of the night if she has a nightmare or if she is sick or just afraid. I hate that going to the park or anywhere means steeling for the possibility of unfriendly encounters. I hate that we have to plan around wheelchair accessibility and I hate how admitting how much of a limitation that is. I hate that I can't just hire a babysitter and go out. I hate that everything is harder for her. Everything. Even breathing.
Some days, I want to hate Apert syndrome.
We don't like to say that, as parents. It feels like a betrayal.
It isn't fair. You are allowed to hate diseases and injuries. You can hate cancer. You can hate broken bones. You can hate pneumonia or diabetes. But syndromes are different. It is easy to think of it as something that happened to my kid. Something she didn't deserve, like a disease. But it isn't.
Apert syndrome is not all of who she is, but it is part of who she is. It is literally written into her DNA. And some days, it is hard to love that part because that part hurts.
But it isn't all bad. You will never meet a happier kid than my Sarah. I love her wide open eyes. I love her creativity, as she figures out alternatives. I love her moxie. I love her perseverance. I love her sweetness and her joy. When people are unhappy around her, she blows them kisses. I love her huge contagious smile.
My heart is softer and that can hurt, but it is good. My other kids are more likely to be empathetic and dependable, or so the research on sibling of kids with disabilities says.
Sarah can't walk or talk. We took her to an indoor playground today. She doesn't want help, so she was scooting around on her own. She scooted right up to kids, without regard for age, gender, or race, and signed friend. The kids didn't generally understand, but many of them smiled anyway so she was communicating effectively. That is really cool. She is really cool.
Apert syndrome had a hand in some of that. Sarah did all of that.
Everyone has those parts. The parts that make your life a little bit harder. The parts that hurt sometimes. The parts that shape you and your interaction with the world. In some ways, these are the parts that make you you.