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?”
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