A day before my daughter had surgery, a young girl mentioned to me that she [Addie] was lucky.
I saw her look up, thinking. She looked back at me and said, “Well maybe half lucky because surgery doesn’t sound like fun, but at least she doesn’t have to go to school.” It made me realize why this year has been so much more difficult than other years.
This isn’t the year that she learned that she was shorter than other people, she’s always known that.
This isn’t the year that people have looked at her or mocked her, that hasn’t happened yet.
This is a different coming of age that many children with disabilities will go through and many adults already have.
This is the year she learned that people don’t get it.
This is the year
…that she learned that what she goes through- her normal- is not everyone else’s. Interestingly enough this is also been a lesson for me. In what parents do and do not go through typically. This is the year I learned that we, as parents, bond where we can. It’s been hard when a friend of an average child has the same surgery Addie has, tubes for instance, and we make a connection. For them it is deeper than it is for me. Because tubes are just tubes for so many. It’s a surgical center, 60 minutes, one time thing. And my fear has nothing to do with the tubes. It doesn’t even have to do with her hearing- for that’s just another hurdle we will jump. This is just another set of tubes… our yearly pilgrimage to Hasbro Children’s Hospital for ear tubes.
It’s the will she wake up? …not a risk the anesthesiologist brought up to me, but something we’ve battled in the past.
While my baby, my 5 year old struggles to makes these connections to her peers, I too am struggling at 33 to make them with mine. And I wonder, if I’m not teaching her and she’s not teaching me… am I just walking this path with her and hoping to God we make it out unscathed? Are we both just a hope and a prayer away from breaking down.
Her hard days show up in lack of focus and an inability to sit. Mine in hot tears in a lukewarm shower, overeating, and not being able to get out of bed. One day closer to one more thing that needs to be tended to outside of the other things that need to be tended to. And I wonder how she does it with minimal coping skills- she’s only a child- when I can’t do it and I’ve got an arsenal of them. I am supposed to be the adult. I am supposed to know. But I do not. And this is the year we are defining our normal in a world where people struggle against the grain to be everyone else’s normal.
I can never really know
And then it’s the kids around me I get to know more and more because of my job. They ask about my kids and are baffled by Addie and I realize they have no idea. They, themselves, have never been through what she’s been through- not even an inkling of it. And it all seems so dastardly, but for us, it’s just how we live… not a bad or negative at all.. But the realization of normal not being normal can be a real kick in the pants.
I’ve recently met adults that don’t understand what she’s going through, expressed with a lot of I couldn’t do what you do. I want to say I get it, but I don’t have a choice. And neither does Addie. She just does what needs to be done… even on the hard days, when holding her breath instead of going under sedation seems like the only choice. And she certainly doesn’t think she’s lucky to miss school. When she says to me, “I can’t wait to have a normal day again,” through gray eyes and sallow skin, I think to myself what is normal for you baby girl? And I realize that the hardest days are, most likely, many people’s nightmares, and that her usual days can be hard days for some… but you’d never know it by looking at her. And this isn’t the year that she learned how her days are so different. And I learned how she’s going to change the world’ s views.