The holidays are tricky enough on their own - but pile on a spinal cord injury that takes up a lot of your time in managing and wreaks havoc on your emotions ... oh! It's just a lot to deal with.
I've often described life with a spinal cord injury as a roller coaster ride. Some parts are smooth and calm, others whip you around unexpectedly. And sometimes it's downright terrifying. I think we experienced a little of all these during this holiday season.
This year - the day after Thanksgiving - I climbed on the ladder and got down all the Christmas boxes. I searched for and untangled what felt like miles of extension cords. I got an outdoor timer and ran said cords from the outlet by the front door to our front yard. I plugged in splitters and ran more extension cords. I put together our flimsy lighted reindeer (now held together with zip ties and foul words). I strategically placed an inflatable Santa and teddy bear in our yard and staked them down. I put net lights on a couple bushes.
I stood back and admired my work, and let the realization I knew was coming just happen.
This is all the stuff Jeff used to do. All this outdoor stuff with wires and plugs and lights and zip ties. It's all mine now. Transferred to me not because he no longer wanted it. But because he no longer could do it.
I don't mind doing it. It's just times like this that I really wish it still belonged to him.
Nonetheless, we survived the decorations and the Christmas spirit was fervently felt in our new home. One night, on a whim, Jeff said, "Let's go get Starbucks." It was just after dinner and I was feeling a little wiped out if I'm being honest. I looked at him with an expression that said, I really don't think I have the energy for this. But in the blink of an eye, Evie was standing next to me wearing her jacket, her boots, and a toothy grin. And Jeff was already bundled up (as usual), and was ready - and eager - to head out.
"Let's do it," I said, reluctantly picking myself up off the couch.
I backed out the van, Evie and I quickly got Jeff strapped down and secured in it, we then got ourselves buckled in, and we were off. We got holiday flavored drinks and gingerbread cookies with sweet icing from the drive-thru. Then we drove around our neighborhood and oohed and aahed over the lights. We came home and enjoyed our treats.
And we did it all spontaneously.
And it was easy.
(Those two things right there - spontaneity and ease - both happening at the same time is something anyone living with an SCI would deem a Christmas miracle. That's surely what it felt like to us.)
But a few days later, our Christmas spirit was challenged. It had been a long, funky day. Evie was sick - running a fever and just feeling like crap. Jeff was a little under the weather too, but his main symptom was grumpy. I was the nurse who would randomly and frequently stick the thermometer in my patients' ears and ask "How do you feel?" to which I got the following answers, "Not too good, Mama," and "Well, you keep telling me I have a fever, but I feel fine!"
By the time dinner rolled around, things were in a downward spiral. Normally, we all eat a meal as a family. Tonight was different. We were all eating whatever we wanted. The three of us were sitting at our dinner table, all in a row. Usually Evie sits across from me and Jeff, but with her lingering yuckies, she was stuck to my side like glue, wrapped in a blanket, and croaning (that's crying and moaning at the same time.) Her dinner was an orange Otterpop. I was feeding Jeff his equally unhealthy dinner and also trying to fuel my own body with the questionable combination of mac-n-cheese and wine.
From the right: "I'm not hungry. My belly hurts. Can I have another Otterpop?"
From the left: "Can you lean me back? Can you wipe my eyes? Can you put more salsa on my next bite?"
Ohmygod.
I was having a genuine "stuck in the middle" moment.
I broke down that night as I was putting Jeff to bed. I went on and on about feeling stuck in the middle - always the one asking everyone else how they're doing - always the one fixing things and getting things and doing things and handling things - never being asked if I'm okay or if I need anything. And with tears in my eyes, feeling ridiculous once all my feelings came pouring out, I apologized to my husband for not handling everything gracefully.
He looked at me and simply and calmly said, "It's okay." Because he, more than anyone else, understands how the stress of this life can consume you.
This funk lasted a couple more days and culminated on the night when everyone finally started feeling better. We were again just sitting down to dinner when Evie accidentally spilled Jeff's water all over the floor. She and I sprung into action with towels. She was trying her best to wipe up the puddles while I was furiously sopping it all up. Jeff backed up just out of range of the water. After nearly throwing out my shoulder with the wiping, Jeff said, "That's probably good."
"No it's not," I snapped, my frustrations boiling furiously. "It's not dry. If I don't get it all dry, your tires are just going to make it worse." My mood was evident in my tone.
Evie tried to lighten the scene by being cute and funny. "We're all wiping up the floor. Everyone but Daddy. He never has to help clean the floor."
"Believe me, sweetheart" I said through gritted teeth. "Daddy would much rather be down on the floor helping us right now rather than be stuck in that chair."
My words and tone were harsh. But they were a true reflection of my feelings in that moment.
We wiped in silence for a few more seconds. Then Evie's small, quiet voice said, "I know what I want for Christmas ..." I stopped wiping, sat back on my heels, and looked right at her. I knew what was coming.
"I want Daddy to be able to move again," and on the word move, she threw up her arms and held them in the air while she smiled.
"I want that too, Babe." said Jeff quietly.
"It's what we all want, Sweetie," I chimed in, my voice back to normal. "But that's not how it works. That's not going to happen."
"I know," she said, and she went back to wiping.
And just like that, my pot having boiled over, my sweet daughter - and my brave husband - helped me clean up the mess and simply move on.
And after dinner, our evening took a pleasant turn. As I was cleaning up, I heard Evie ask Jeff, "Daddy - you wanna pull me around in the laundry basket?"
Without hesitation, Jeff said, "Heck yeah!" and he started giving instructions. He told Evie to get the basket and the bath mat, and asked me to take a time-out from cleaning up and get the orange tie down.
A week earlier, we'd discovered a way for Jeff and Evie to do something they had enjoyed doing before Jeff's injury. When Evie was smaller, Jeff would pull her around the house in a bucket, basket, empty box - anything he could find that she would fit into. He'd rig up a strap, and holding it in his strong hands, he would pull her along behind while he walked all over the house - even down a short flight of stairs in an old place we lived in. She would squeal with delight. They both loved it.
So tonight, Evie turned the bath mat upside down and placed the laundry basket on it. I secured the tie down around the back of Jeff's chair and onto the basket. Evie hopped in, Jeff adjusted the speed on his chair, pushed the controller forward with his chin, and they were off.
I finished the clean up then sat at the kitchen table and watched them have fun. Jeff would drive her into the bedroom, make a u-turn, then come down the hall, where he would make a tight turn around the corner in order for the basket to slide out to the side around the corner. Evie gave a little scream and they both laughed.
Their laughter filled me up and made the Christmas lights in our house sparkle a little brighter that night.
And so the roller coaster of this SCI life was back on the top again. Back to where there's a calm, and you feel happy, and a genuine smile crosses your face. We've hit some roughness since that night, but also had more smiles. It's truly been an up and down holiday season: tears and frustrations mixed with happiness and love.
Tomorrow the decorations will start coming down. I'll once again get out the ladder and do all the jobs that I inherited after my husband became paralyzed. And he'll watch me, wanting nothing more than to just do them himself.
Soon we'll say goodbye to 2015, and move on to 2016 where we'll enter the third year of this new life.
We hope it will be a good one. We know it'll have ups and downs like the others that have come before.
At least we've got a good grip on it now - and we're doing our best to hang on.
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