The door slams shut shaking my kitchen, as it does every day at roughly 3:30. My place of solitude, quiet, and research turns back into a kitchen. Within the first 15 minutes of being home, I feel like a ball player at batting practice, but the machine is turned on high, throwing out balls for me. You have to be aware, in the zone, or you might get hit.
Mom, can I have something to eat? Can I have candy? Can I have this random leftover article of whatever is in the fridge ( that would be the voice of my constantly growing 11-year-old son)? I have homework. Do I have swimming? Can I play computer? Can I go outside? Can I _______? It wears my brain out, every day for 15 minutes I pretty much answer yes no, and maybe. It’s like they have been planning these questions all day!
Today, when the onslaught of questions is, over my daughter, says with hands on hips, ” Mom, I NEEEED your help, I have a lot to say for this thing I need to do for school, we are having an aware fair and I need to write this paper about how someone with a disability that I know has changed my life. Will you help me?” ( There was no breath ANYWHERE in that request.)
How could I resist helping my daughter with this paper? “Of course I will hon, just let me know when you are ready to start. “
Now, Mom, I’ve been thinking about it all day and I wrote a few things down in my notebook. She opens the purple backpack to reveal this tattered composition notebook and opens its curled edges with her tiny fingers. She looks up for a moment and says, “ok you type I’ll talk.”.
As I ready my fingers to put her words to “paper” I wonder what I will learn about today. She has several friends at school with disabilities, and she has such a compassionate heart for these friends. I wonder what story she is ready to tell and what new things I will learn about my daughter. The sound of wood on stone lets me know we have serious work to do, she has pulled the kitchen chair up next to me at the computer and has settled in. I ask if she is ready to go, she nods and Her first sentence tumbles from her mouth, “My Mom had something called Sacroiliac Joint Dysfunction”
My stomach lurched, and I held my breath… oh Lord – what is she going to say, where is this going to go, should I even look at her? She had to choose someone DISABLED that changed her life… she’s talking about me, oh this child has always seen so clearly, so much to the heart of the situation that it burns through me at times. So young, only 8, and yet such clarity. I don’t want my emotion to get in the way of her voice. So I stare at the computer screen. Huge, white, with the cursor blinking, waiting for more of her words to tumble out. My heart braces for what it may hear.
Here they are, I think you, like me, will be surprised at the things Erin brings to light for us. We are all somebody’s something. None of us live our lives in isolation, and so our pain affects those around us, but I was surprised at how SHE reflected on those hard hard years. The more she talked, the harder it was to hide the tears that slid down my cheeks. These are her words on our family and my situation.
“My Mom had something called Sacroiliac Joint Dysfunction. She had it when she was 18. She got hurt when she was doing a flip-turn swimming for her college. She tore a ligament in her butt. When that happened she froze in the water. She was in a lot of pain. The coach pulled her out of the water, and the trainer came to help her but no one knew what was wrong. She finally found a Physical Therapist to help her, but over time the injury was just too bad and she hurt all the time.
She couldn’t do as much as all the other moms could. But she could do and still can do stuff that other moms can’t do. I have the same thing as she did but not as bad. She learned from her physical therapist how to help me feel better and put me in place. Most other moms can’t do that!
Just because she had SIJD does not mean that she has to be treated differently. Sometimes I do not like that she had this. Sometimes she knows too much and the things she does to help me I don’t like sometimes! She was in pain all the time, and I hated that. When we played it hurt her. This affected me and my brother, Connor, a lot. She could only sit and stand for about 15 minutes at a time and needed to lay down a lot in between. It meant we needed to play a lot of games laying down, and that was kinda hard, and not nearly as fun because we could only play board games and card games. I wished she could have actively played with me and drawn with sidewalk chalk, sit and color with me, or just go for a walk with the dog, or come outside and watch me roller-skate.
Some of the things that I liked about the situation were we got to eat up in my Mom and Dad’s room a lot and got to watch lots of movies and TV and cuddle with her, but I couldn’t get too close to her or it would hurt her more. I liked that we got to spend lots of time together as a family. We were never very busy, so we got to talk a lot. We also got to eat out a lot.
She finally had surgery a little over a year ago to fix it. Now things are really different, she can get up and play with us without hurting, I can sit on her lap and she doesn’t hurt, we even played with sidewalk chalk the other day.
Some stuff she won’t be able to do ever, even if she was the healthiest person ever and never hurt anywhere, like sky diving, bungee jumping, or hang gliding, the surgery she had to fix her made it so she can’t do these things.
One year after her surgery she decided with this awesome experience that she wanted to help others with the same thing as her, so she has helped lots of people and has written about her experience on this journal website thingy. I’m glad she helps other people and I want to help too.”
By:
Erin 🙂
I exhaled and hugged her. Unaware of how deeply she had reached into my heart or that she had placed a band-aide on more of the worries and pains that living with this dysfunction caused, she just said, “Wanna watch me skateboard now?” Yes, Erin, yes I DO, let’s go.
April 24th 2012
