This Spina Bifida awareness month, I’ve been super focused on highlighting the utter ordinaryness of most of our life, even with SB in the middle of it. Because that’s the truth. Most of the time, most of our life feels very very normal. Toddlers be toddlers, which means that I spend my time reading books to both of my girls, feeding both of them meals, carting them both around town, doing up seatbelts, putting up ponytails, snuggling and reading stories and kissing booboos.
And then we go to the park with our friends for a picnic. All the kids swing. All the kids slide. All the kids run and play. But only one of them is constantly falling down, and, it turns out, she’s starting to notice it too. Yes, Claire walks with the help of her braces, and we are so so so very thankful for that. But it doesn’t erase all difference. Because it’s fall. Because of the damn acorns. Because they roll underneath her unsteady feet, and they destabilize her weak legs, and they take her down again and again. And where before, she believed us when we picked her back up, dusted her off, and said “everybody falls down sometimes, you’re OK,” now I can see that her tears aren’t just because of her booboos, but because she’s kind of tired of being the kid that falls down all the time. Because she can see that the other 2 year olds aren’t falling down all the time. Because she doesn’t want to be falling down all the time either.
And that’s when SB is hard for all of us. I hate to see her frustrated. I hate it when she falls down and skins her knees and scrapes her hands. I know these things happen to all kids, but when it happens for the tenth time in one trip to the park, an *accessible* park (I have questions about the accessibility of pea gravel), it’s not just clumsy kid stuff, it’s disability, reminding us it’s here, and it’s not going anywhere. And we’re going to have to find words and explanations. I want to let her feel how she feels, and at the same time, I want to help her love herself as she is, too.
So there you have it. I want you to know that most of the time, SB is just part of our life. It’s mostly not terrible. It’s quite rarely hard. But sometimes the hard breaks my heart.