Wednesday, September 9, 2015

"Is she going to be okay?"



Between all the appointments and errands and visits, this is probably the question we hear the most. 
"Is she going to be okay?"
And its worth noting that we hear it in equal amounts from family/friends and from strangers. 


From the ones we know and love...
See, even though they've been there for us every step of the way, our friends and family aren't spina bifida experts. They haven't spent hours researching it or sitting in the doctor's offices listening to the specialists. Eliza might be the only person they know with spina bifida and hydrocephalus, so of course, it's not on their every day radar. 
But our friends really love us. And they're truly interested when they ask. They only know snippets of information that they catch from us and they hope all is well for Eliza. They offer smiles and hugs and food (all of which are lovely!). And they try to encourage you by telling you about some kid or acquaintance they know with spina bifida that plays little league or runs 5ks and "you'd never know they have it!" 
They mean well, they really really do. 


And the strangers...
They see me holding my precious, tiny little newborn in Target or at a restaurant. They're sweet and polite and comment about how beautiful she is (because YES!). And with a closer look to one side of her head, they see a misshapen area with a long protruding object under her skin (her shunt). They see stitches in several places and they are immediately confused about what this dear thing has been through. Sometimes they have spoken at all. They just eyeball her from across the way. Sometimes they try to politely pretend like it isn't there while diverting their eyes. Sometimes they just finally ask, "Oh goodness, what's that? Is she going going to be ok?" 
It's curiosity. I get it. They mean well, they really really do. 

Maybe I'm not the mom that should be writing this. In fact, I'm sure I'm not. My little gal isn't even a month old, what do I know about all this yet? She doesn't have her first leg braces or mini wheelchair. For probably the only time in her life, she's actually not behind on a single milestone. 
So maybe I don't know much yet, but I've definitely caught on enough to know that the stares and questions are a part of our new reality. 

Especially this one... Is she going to be okay? 

And I'll go ahead and claim that "new to being a special needs mom" card now and say that I'm not sure how to answer that. She has spina bifida. She has hydrocephalus. There is no cure for either, just management. She'll likely be wheelchair bound for much if not all of her life. She'll likely have dozens of more spine and brain surgeries to keep her healthy. There will be a lot of struggles and a lot of things she can't do. I don't want to downplay that. I don't want to pretend that she'll outgrow this in a few years, that it's comparable to some other newborn's jaundice or acid reflux. I don't want to dismiss spina bifida or hydrocephalus like they aren't really big freaking deals. They are total game changers. Life changers.

But will she be okay? Sure she will. She has an awesome family and support system that are already so smitten with her. She is a part of a nationally renowned spina bifida clinic that manages her care. She's pretty. And smart I'm sure because she gets it from her mama (braaaaag!). She's destined for a great, full life of amazing things! She's going to be more than okay, she'll be fantastic! 

But she'll be different. And maybe that's what I'm having to get used to. The difference. The comparison to other kids and the looks from other people. The questions and misunderstandings from those around us. It's different. 

Her spina bifida defines her. It makes her different. But it also makes her so dang special. And that's something I can get used to in a jiffy. 


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