When I go back and read my Instagram post from June 24th, 2016, I can feel the sadness and pain in my words as if I had just typed them yesterday. It was the day we learned about Eisley’s diagnosis of spina bifida, and we decided to share the news with our family and friends. I couldn’t stop crying that day, and I felt like my entire world had changed.
And really, it had.
But I wish I could go back and tell myself that it was changing for the better (not that I would have believed my future self, but still).
A question that I sometimes ask myself is, would I change Eisley’s spina bifida, if I could?
The answer is no. And yes. It’s a complicated, conflicted answer.
I would take away the physical pain of surgery recoveries, countless procedures, and chronic pain of everyday life. I would take away the heartbreak that I am sure that she will experience in the future when a blunt child calls her a baby for wearing diapers, or when an adult gives her a pitying look in the grocery store when they see her braces or adaptive equipment. I would take away the feeling when she realizes that the world sees her as less than, and when she will have to fight to receive equal access to the world.
I would take all of these things away if I could. But, I also know that if I took away her disability, I would take away a huge part of who she is.
She is strong. I get so many comments on how happy she is, and I just smile and nod. Because I know it’s more than happiness. It is a strength that runs deep. After her surgery the day she was born, she was on morphine for a couple of days, and after that, she only needed Tylenol. She was recovering from two surgeries in one-her spinal closure, and the placement of her shunt that goes from her brain down into her abdomen. She physically works so hard to do the things that typical babies do with ease. Each time I see her crawling across the floor to get a toy, or when she is grabbing my arm while I sit on the floor and she pulls up to her knees, I know the physical effort she is exerting to do these things. She works so hard, and does it all with a smile and a gentle spirit.
She is dedicated. Maybe that sounds silly to say about a 13 month old, but I wish you could see the look in her eyes when she wants to accomplish something. She sets her mind to it, and she knows she will do it, no matter how hard she has to work. Her physical therapist has commented on it before, saying, “We just have to show her how to do something once, and then she just does it like it’s nothing!”
She is gentle. And funny. She loves to snuggle and loves the cats. I could go on and on about how wonderful and remarkable she is, but I also want to be careful about turning her into my hero. Because I want her to feel special, but I also want her to feel like a human being. She is the heroine of her own story, but she’s not just an inspiration for everyone else’s.
So would I change her spina bifida, and make her just like everyone else? Ultimately, no. Because then she wouldn’t be the Eisley Mae that we love and cherish-strong, beautiful, and fearfully and wonderfully made.
One thought on “I can’t change disability-but would I?”
Love this. For us, it’s been hard as well, but it’s changed our family for the better. After 4 kids, we were fairly set in our parenting…and were done having kids…but now with Evanna all that has changed, and we’ve learned to be the parents she needs, and better parents to the other 4.