In this month of thanksgiving and preparation for Christmas, I find everything to be bittersweet because I am missing a piece of my heart which would be Julie. After much thought, I decided to tell you all how difficult it is to take a Christmas picture in my family which is long, tedious, humorous, and in the end, priceless.
My beautiful mother is a photographer so she picks places that are beautiful. However, she doesn't like me in the wheelchair which is fine but it increases the difficulty of the picture. A few years ago, we were on vacation at a resort. Mom really wanted a picture of us on a bench. I don't know why but knowing her, she knew it would be a beautiful picture.
Dad says, "I'll sit Hannah on the bench and David and Genevieve can hold Hannah". OK, Dad, we can do this. I sit down and because of how hard the bench is my movement disorder called Dystonia erupts. I'm hitting David and Genevieve in the face. We get the movements under control. Then, I start to fall off the bench and everybody's frustration level increases. I make the grave mistake of pointing to the chair as if to say, could we just incorporate my wheelchair? Mom gets a really frustrated look on her face and as I go to say sorry, my hand hits Genevieve and she gets crabby because her hair is out of place. Mom takes a deep breath and says, "Smile". I have a death grip on my siblings so we look tense and frustrated. "Come on, REAL SMILES" Dad says. David decides to give Genevieve bunny ears and Mom's at her wits end. Both parents have to beg us to smile because we are all frustrated and desperately want this over with. Mom looks at a few pictures and says, "We’re good, I have a good picture". Hallelujah!
This year, Mom chose a log for us to sit on.
It was at an end of a small hill. Dad and David thought my wheelchair could handle the slope. I’m making it clear that I don’t think so. We start going down and the back of my chair starts to go up. Mom decides that this is not a good idea. I feel like banging my head against the DynaVox because I knew this would happen. I walk down the hill and Dad sits me on the log and my legs are trying to help my body balance on the log. My core is working and my muscles are helping but that Dystonia is trying to screw up my efforts. David is on my left as he just got the wheelchair back up the hill. Genevieve is on the right of me and as she goes to fix her hair, I realize I want my coat off because I have a really cute sweater on. Mom gets the coat off and we start smiling. We’re coaxed to do our real smiles. We got a good one! It will be in your mailboxes soon.
As much as we role our eyes and tease Mom about the Christmas card, I’m glad she does it. We have dozens of beautiful family pictures in the house because my parents have not given into Dystonia! Barb, a friend of the family has connected us to Bob Dold, an Illinois congressman to explain how Dystonia affects lives. It’s ugly, disruptive, and in some extreme cases (NOT my case), it can be fatal. I’m going to tell Congressman Dold that I want a Christmas without Dystonia.
This Christmas, I want donations to Donate Life and the Cystic Fibrosis Foundations so nobody has to suffer like Julie did. However, one Christmas I want to take a Christmas card without Dystonia.
I am Thankful For You All,