You're not supposed to have infinite patience when you are seven. You're not supposed to have an in-depth understanding of autism and disability and how it can affect a family. You're not supposed to quietly take a back seat when things get hard for us...for her...for you.
You're supposed to be selfish. Not the mean kind of selfish, but the childlike kind of selfish where you put yourself first because you're a kid and that's okay.
You're supposed to exist in a bubble, for at least a little bit longer, and you're supposed to have no idea that there is a world outside of that bubble. Your bubble should be full of play dates and birthday parties and school functions.
You're supposed to demand attention, and scream that things aren't fair, sometimes.
Did you know I've been noticing how you watch my face for reactions every time your sister has a moment? We'll call it a 'moment' because this is about you and you know exactly what I mean. You glance at me looking for signs of frustration', or tears and your sweet brown eyes are, for a moment, afraid of what you'll see. We're soul mates, you and me, because I know if you saw those things in my eyes your heart would drop and you would come to me and do anything to take those feelings from me. And you know I'd do the same for you.
I want you to know those feelings aren't always bad. When you're older you'll understand more about this. It's okay to feel frustrated and sad, sometimes. I know you want to protect me, but I promise I'm just fine. Your sister feels these things much of the time, too, you know. She just doesn't show it the way you and I do. Sometimes she uses aggression or anger to show us she is sad or scared or confused. She is never really angry at me, or you. She is just afraid. It's my job to make her feel safe and when the thought of this gets to be a bit too much, I sometimes get sad or even cry a little, and this helps me cope. It's a good thing. This must be so confusing for you. I wish it wasn't something you had to learn right now.
I know you get angry at her, sometimes, too. For all the patience you've shown, there are times when it becomes too much for you, ,too.
You have your moments, you do. Like when she destroyed the American Girl set it took you hours to arrange. You made tiny cardboard tables and chairs complete with tiny, colorful napkins from tissue paper that day. I watched as you arranged your dolls as if they were having coffee and discussing a great book. Was the dark-haired doll supposed to be you? Was the blonde, your baby sister? Do you imagine growing up and having coffee dates just like that with your sister, your best friend? I bet you do.
I dream of that for you.
Most of the time you play so well. You translate rules and confusing social norms for her as if you're her interpreter, and I guess in some ways you are.
You go into bed with her when she can't fall asleep and you even watch her 'baby shows' as you call them, but I think you secretly like them, too.
Just yesterday, you offered your tooth fairy money to help buy her the Fisher Price Zoo she found in a catalogue. She's going to work on earning it, without the aid of your five dollars, and you know what, the day she earns that toy, you'll have earned something, too. A date with mom and dad and a special treat, too. It will be something so special and out of the blue to make you smile. Maybe some new doll clothes. I can't wait to see your face. I wish it could be so much more.
Your sister gets a sticker for her chart when she falls asleep in her own bed, or puts on her own pajamas, among other things. And you watch as her version of doing these things involves much support from us. We slide her pajama top over her head and praise her for helping pull it down. We lay her clothes out in the morning and hug and kiss her for letting us put them on her without a fight. Meanwhile, you've dressed yourself, made your breakfast and are sitting patiently, waiting for a chance to talk with us about what the day might bring. And those are the good mornings.
My chest hurts as I type this. My eyes full of tears because you are so amazing and you have given up so much of what is rightfully yours.
You deserve more kisses and more snuggle time. You deserve more bedtime stories and more times when someone helps you pull your pajamas over your head and pours your cereal. You deserve to be cranky, and frustrated and most of all you deserve to never worry, because it's my job to do that.
Sweet Grace. I Love You. I'm so proud of you. I wish it was easier for you. I'm Sorry.
Grace and Kate's mom. (Shanell)