Monday was our fifth anniversary. We’ve gone to the same place every year- same routine, same time, same smells, same faces. I remember the first visit in 2011 most vividly. Not simply because it was the first time, but because it was different. It’s like going to Disney World every year for a decade. The only one that you remember is the one that it rains all day, or your brother gets kicked off of a ride for trying to punch Goofy’s nose off, or you get chosen as the crowd representative for a highlight show- you remember that. I also remember this past Monday pretty well- those four visits in between, however, all run together.
That first visit was surreal. That’s how I remember it. The Doctor looked at Tiffanni and within five minutes made his diagnosis. Five minutes. I could hear it in his voice from the second that he shook her hand. “Squeeze,” he said. “Hmm.” The difference between a “Hmph” and a “Hmm” is all in the tone. “Hmph” has a distasteful snide sound to it, but “Hmm” carries an inevitability that is easy to recognize if you’re listening for it. I’m sure that my subconscious knew what he would say, I mean you can’t watch the changes for a year and not take note, but I was shocked all the same.
“Uh oh, I hear the change in your gait,” we were greeted with as we made our way down the hall for the sixth time. Hmph. So that’s all that represents the last year of our lives? The change in her gate. We sat in the same two chairs across the same desk in front of the same doctor. His back to four bookshelves of medical journals, family pictures, med school textbooks, and a candle. There was plenty of time to appraise the contents of the sterile shelves while he skimmed through five years worth of scribbled notes to himself. I sat there readjusting my posture every few seconds, wondering if he had a made a note of her gait from last year.
The summation of the last year of our lives is the size of Tiffanni’s gait. A smaller, wobbly, slower step, she leans against me more now, especially going up stairs. He has no idea how I’ve fought getting a wheelchair all year. We went to Six Flags at the end of last summer and took a wheelchair. My kids cried to themselves when they saw her in it for the first time. I could have done better preparing them, but what do you say? It’s less about what to declare and more about how to answer when the questions come. So, I’ve fought it. Once you sit in a wheelchair, you never get out of it again. Ever.
Her stride. She uses it to stumble down sloped aisles to take her place in church now. She lays sprawled out in an entire pew, just me and her, sometimes her and my parents or her parents. Right in front of the side of the stage where she used to sing. Last fall I found a cassette tape of her and her best friend Candy singing with her music minister Ben. They recorded a full album of worship songs out in Texas in the early 90’s. I came across a box of them packing for our move, a whole box, and pulled out three before I tossed the rest out. They were stocking stuffers for Addy, Car, and Brayden this Christmas. “Your mom used to be the greatest singer. I thought you’d want to hear her and somehow unearthed these while we were packing!” Santa came through.
Her traipse. It’s the closest thing to a skip in her step that I can find when I’m taking her to get into a pool. She loves the pool. We discovered it this year, the only thing that calms her and stills her body. She sweats through every month, burns through every calorie, including the 1100 calorie peanut butter milkshake that my mom makes for her every afternoon as a “snack”. It was our quick fix when we couldn’t keep up with her weight-loss this winter. At best we’ve stabilized it. She can’t eat enough food to compensate for the energy that she burns as she moves erratically all day. Lying, sitting, standing, there’s no reprieve anymore. And then we found the water. She now asks to swim everyday, so we load up the car as often as we can and find a pool, lake, creek, ocean. Anything for a reprieve.
So much taken, not a lot given. Yes. It’s been a full year of change. Not just for her, but for the kids, and me, and my parents, and her parents, and everyone that is around her. This, at times, mindnumbingly slow lumber, and at other times, barreling gallop has been anything but stagnation.
So yeah Doc. There seems to have been a change in her gait. We’ll see you next year.