I’ve become much more aware recently about the widening gap between Hannah’s ability and other children her age. When the MDCP nurse asked me if she follows commands and understands what we say, I just shook my head.
There is just ONE command that Hannah recognizes and will respond to. “Uppies.” If I say “do you want uppies?” a few times, she will actually get excited and put her arms up. OMG, does my heart soar when she does this! This is the only interaction she really does with us where we know she understands us. Anything else, well, she doesn’t seem to either understand or respond to.
I was reading Melissa’s latest post about Kyle, a little boy with Hannah’s disease who is just a month older than her.
But still, he’s like a baby who’s not growing up. He should be running all over the place, playing on the grass with his brother and sister, or toddling through the house in footie jammies. Instead, at 14 months old he’s still stuck in his exersaucer watching everyone else have fun. It’s incredibly heart-breaking, but I’m determined to get him going.
I could have written this point, word for word.
It is almost like Hannah is stuck in a perpetual time warp that keeps her at the 6- to 9-month old level developmentally. She is trying so hard, and she really doesn’t know any different, which I thank god for. She can’t go from a lying to sitting position or really crawl to where she wants to go (she gets winded within a few feet).
But then, every once in a while, she will spark with something just so “advanced” for her, like her walker. That just blows us away!
For me, I think the hardest thing is not knowing *if* she will learn certain skills, such as understanding communication or really moving (like crawling or walking on her own). Even though I LOVE sharing about the skills and advancements she does make, there are just so many that she hasn’t hit yet or just doesn’t seem to get. That’s why I relish and want to scream to the world about the ones she does make.
I do wonder… will she ever be able to call me “Mama?”
She’s already calling you Mama in her heart.
I love that picture of her napping. So sweet.
I am sure that hearing her say Mama would be extraordinary music to your ears and I hope that it possible. I also know that when you look at her and she smiles you feel that same tug in your heart that others feel when they hear the words.
.-= Petula´s last blog ..Inside my head =-.
and we love hearing about all the progress that she does make!!! I know it’s the not-knowing that is hard, but I know that even if you were told that she wouldn’t do certain things you’d never stop trying to help her be the best Hannah that she can be. That’s what matters- she’s the best that she can be. I love that pic of her napping too, btw.
I think she says mama in so many ways…when she won’t go to sleep without you holding her, when she will smile and respond to uppies, but I do hope she can say it out loud for both of you.
Have you tried any baby sign language? I know her issues aren’t as simple as this, and probably you’ve already tried this excessively, but maybe she can learn some signs that will let you know if she can communicate or not?