He's More Than His Eyes
I guess I think about Sky’s blindness a lot. Particularly after visits with his therapy team or after a trip to Portland to see the doctor—it’s hard not to. I ride the rollercoaster of “he’s doing great! Look at him cruise a long!” then drop into a milestone-spiral thinking of how “behind” he is.
Last week I went to a professional training in Portland, so Sky came with me and hung out with my mother-in-law while I was at class. I was there as Professional Mandi, and I just got to be a PT in a room with other healing women and got to talk about my toddler with others who had kids. At the end of the first day, I realized that I hadn’t thought of him as blind or in reference to any disability at all for the full day. I showed a classmate the photo his Mamo sent me at lunch without any worry about needing to explain his glasses or tell her that he’s blind.
He was just my kid.
I was just his proud mom.
I don’t know what is normal in this world of parenting. We’re making it up as we go (as I’m pretty sure most do...) and we’re figuring out what parenting looks like when you have a child with special needs. We’re even having to figure out our language—I’ve read that “special needs” is actually a term that a lot of people in the disability community don’t embrace, but at this moment it feels like a helpful term for me. I know Sky is more than his eyes, yet a focus on his vision has steered the course of our lives for the past 15 months.
So let me tell you about my toddler.
He kills me with his laugh. He’s really into nose-honking at the moment. Last night I would press his nose and say “honk” and he would go into a fit of laughter. I mean throw his head back, deep belly laughter. It went on for five or ten minutes and had me nearly in tears!
He’ll quickly crawl back and forth between long patches of sunlight on the wood floor in the evenings, or just spin full circles on his bum.
He cruises around and around the kitchen island, listening to the different sounds as he feels the colanders versus the metal bowls or the wood bowls.
And he crawls back and forth across the deck—almost like he’s counting how many paces it is edge to edge. He sees the edge coming*, slows down, and either reaches gently over the edge with his hand or abruptly turns his back to it. He’s testing his boundaries. (And his mother’s anxiety...)
He still is cautious about walking. He’ll walk holding onto our hands but is not quite interested yet in taking a step on his own. Who can blame him? I trust he’ll get there. We’ve seen him be more brave the past few weeks cruising back and forth along walls and closed doors, rounding corners like he’s mapping out the house in his mind. He probably is. He was “late” to crawling too and now I’m struggling to keep up with him on all fours! I’m confident walking will be the same way soon enough.
We’ll call this a good week or two for me. He’s doing his thing, on his own timeline, but I’m having a good week. I’m seeing him for all that he is. I’m seeing his abilities and not just where he’s “behind.”
I’m not worrying about when he’ll get the next milestone. If there’s one for laughter, he’s blown way past it. Smiles—check. Eating—absolutely! If there’s one for learning to press his nose into my finger to make get me to make a funny sound, he’s got that one down too.
Honk.
*Reminder that vision is a spectrum! Yes, he’s blind, but he can see. We’re just not sure how much until he can tell us. 😉
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