On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.
I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level? All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.
There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!
The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)). His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.
The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.
Fresh eyes for you, Kristin.