I hate the word normal. I mean who defines what normal is anyway? I heard that word this weekend at the water park said in reference to my lovely daughter Kiya. A little boy who was racing past us on the stairs to get to a water slide, said “she’s not normal.” Excuse me?
I didn’t really think about it much then as daddy was waiting in the pool for Kiya to come racing down the slide. When I did start to think about it, I wondered….did he think she wasn’t normal because I was white and she is black? Did he mean that she isn’t normal because it takes her longer to climb the stairs or how walking in a straight line is a challenge? I guess I will never really know what he meant but it got me thinking.
I have always said out loud and to anyone that will listen that Kiya is just like every other kid her age. The cast doesn’t stop her from doing anything. She may not be the fastest runner or the highest jumper but she can still do it. Out of cast is a little different and at the water park I was hit hard with that reality.
Kiya out of cast is awkward, clumsy, slow, unsteady, and not very confident. Her core muscles are weak. She favors her right leg and hence her left leg isn’t nearly as strong. All of these things became very real as I watched kids half her age maneuver in and around the pools and water slides.
Kiya needed more help than the other kids. We got to a point where she was going down a few of the smaller slides by herself. She would climb the stairs, fall to her knees and then turn around to sit down and off she went. The pure joy was very evident on her face.
It was a hard reality to face as a parent. My kid isn’t like every other kid. She has scoliosis and it sucks. She gets 4 weeks a year to enjoy the water so things other kids take for granted are new and foreign to her only to be revisited every 12-13 weeks.
Then I think about all the things that I as her mother should do differently….should I get her into physical therapy again, do I buy her a dry suit so she can enjoy the water since I swear she is part fish, do I coddle her too much and not force her to figure stuff out?
Honestly, I really think this whole scoliosis thing is harder on me. Kiya knows she wears a cast. She knows her water time is limited to out of cast time. She has been asking to have her cast back on since the day we took it off. The cast is her safety blanket and mine.
And yet as we are winding down our out of cast time, I am dreading heading to the hospital for cast 8. I will be kicking and screaming because I hate that my daughter has to be comfortable with hospitals, doctors, casts, and xrays at her young innocent age. Kiya on the other hand can’t wait to get her orange and pink cast or maybe it will be pink and green who knows. She also can’t wait to see her cast buddies William and Giana.
I hate that summer ends for this family next Thursday at 8am. I hate that there will be no more pools or water slides for another 12 plus weeks. I hate that we are mere weeks away from being a family of 4 and Kiya won’t be able to enjoy water time with her baby sister.
What I hate the most is my bad attitude about this whole thing. Kiya is amazing and I can learn a lot from her. She knows as do I that the cast is what is best for her. She is okay with her normal even though her normal is not every kids normal. It won’t even be her baby sister’s normal. I will have to learn to balance 2 normals.
This takes me back to why I hate the word normal. Kiya’s normal isn’t Katie’s normal. Neither normal is bad yet that little boy at the water park felt it necessary to say Kiya wasn’t normal. In hindsight and if he wasn’t like 3 I would have loved to say, “yeah, so what? She is still amazing and I am proud of her.”