Say I couldn't talk. And my hands didn't work for sign language. Oh. And don't forget that my body's neurology likes to get cranky.
But I have one way to communicate clearly. Eyes.
Piercing eye contact meaning yes. Anything else means no. Especially looking at my belly button.
Say you don't know how to talk to me. But it's your job to figure out how smart I am to determine my education plan. But you call it some PC term-cognition-so I don't get offended. And you throw a lot of technical terms at me so I get dizzy and don't remember to act smart.
Or is it that you're not fluent in my language? It's not easy to phrase Every Single Question into yes and know. Trust me. I know. Perhaps you don't know about my neurology's misfire. The ones where I need to be asked to make eye contact when I've hit the animal you've requested. Not taking my first hit as my answer.
Or maybe my Mom is wrong. Maybe-just like in everything else in my body-my brain is damaged by Rett Syndrome. Maybe I am twelve months old cognitively. In which case you won't be teaching me colors and shapes and letters. You'll be teaching me mommy and daddy and pants. If so, I promise to be bored. And ignore you.
Because unlike everything else
my smarts work fine
Oh honey. You are a good mama, I just know it. You don't know how to be anything else. This post proves it.
ReplyDeletePowerful words colored with a deep sense of understanding.
ReplyDeleteI'm sorry for the frustration you must both feel in trying to make yourselves understood. But you keep teaching that little girl "YES" in a world of "no," just as you are, and she will THRIVE. Keep advocating, mothering, praying, and passing on your incredible strength. Eyes are powerful communicators.
ReplyDeleteBut you both communicate love - and that is the most important thing:)
ReplyDeleteYou are a loving, caring mom and you are lucky to have each other. I read up on Retts Syndrome and am in awe of what you are doing for your daughter. Thanks for sharing from your heart.
ReplyDelete*sniffs* just beautiful.
ReplyDeleteSounds like you were meant to find each other :)
She's such a sweet girl. <3 You're just the right mother for her, too.
ReplyDeleteThat eye contact is so so so important. I never knew how much until my little guy. You have the power of eternal thinking well above the rest of us. I have now lost mine since he can finally communicate with his mouth. You are doing an amazing job keep up the great work. By the way she is so beautiful.
ReplyDeleteThat was beautiful. Truly and utterly beautiful. You are the best Mum.
ReplyDeleteYou've said things in that post that go way beyond their intention.
Very powerful.
Big hugs for you both.
Leanne (Deep Fried Fruit)
PS I would like to make that my blog post of the week. Hope that is ok.
ReplyDelete