It's the Most Difficult Time of the Year
And everyone telling you be of good cheer
Before today’s story, I want to tell you about something surprising that happened last Friday.
Substack (the platform that hosts this writing) published a piece entitled Interview: How Kushaan Shah reads 30-40 newsletters per week. I met Kushaan a few months ago in the On Deck Writer’s Fellowship. I subscribe to his awesome newsletter The Marketing Mind Meld where he writes about topics like ASMR, advertising jingles, and bee pollination through the lens of a marketer.
In the interview, they asked him “Who’s a Substack writer that you wish more people would subscribe to?” And he responded with me! I was blown away and humbled by it.
All of a sudden, my email was flooded with new subscriber notifications and my modest subscriber numbers have more than doubled. Welcome to all the new subscribers. I’m so glad you’re here.
If you’re not a subscriber yet, it’s not too late to get in on the ground floor 👇
Okay, that’s enough. On to this week’s story.
At first glance, you would think today has the makings of a perfectly relaxing day. The only thing on the agenda is making gingerbread houses, an annual Christmas time tradition at our house.
I wouldn’t know it was the Sunday before Christmas were it not for the accoutrements of the season around our house—the fresh wreath on the front door, cards from friends and family hanging on the wall, and our fake Christmas tree I reluctantly pulled down from the high shelf in the garage and assembled last weekend in the corner of the living room. The tree has pre-strung lights, but dozens of them stopped working years ago so we supplement with additional strands. There are no ornaments on it this year because my eleven-year-old stepdaughter Sara said, “It looks sleeker that way.” I’m not sure if she said it out of laziness and I don’t care. 2020 has been such a strange year it’s fitting that Christmas should be different too.
If it were up to my wife Allison and me, we would skip the traditions all together this year. But we’re mostly doing them for Sara and to have some semblance of normalcy in an otherwise abnormal year.
Our daughter Em is only two and a half years old. She isn’t aware that it’s Christmas and has no concept of what that even means yet. She has severe Cerebral Palsy and has been struggling with her dystonia lately.
Dystonia is a muscle movement disorder that sometimes causes her muscles to contract uncontrollably. Her hands are in fists a lot of the time and they tend to turn outwards. Several times per day she has more intense episodes that take over her entire body. We call them twists. The worst part is that they happen to her most often when she gets excited about something—like when a song she likes comes on, changing her into a new outfit, or taking a bath.
To best understand what these intense episodes are like, try to follow along with this description using your own body:
Her left arm flexes straight and her tightly fisted hand contorts clockwise until her palm is facing away from her. Her head turns left and her lower left lip pulls down and stretches toward her left ear. Her neck muscles bulge as she fights against her body. Her right arm bends up toward her face and her hand repeatedly opens and closes like she’s grasping for something. Both of her legs straighten as stiff as boards with the bottoms of her feet turned inward, facing one another, and her toes point like a ballerina’s. All of her muscles throughout her body are flexing as tightly as possible. It’s like she’s planking uncontrollably.
The twisting has only gotten worse lately, sometimes lasting a few minutes. She went from having one or two per day to easily over twenty.
Her therapists have told us that bending her legs can break up the twisting, but she’s so strong now that it’s nearly impossible to bend them without feeling like you’re hurting her. I usually let her hold one of my fingers with her grasping right hand and try to soothe her with my voice. It’s difficult to remain calm, especially when she screams out in pain.
Her twisting is in full force today, but for Sara’s sake, we’re hoping it doesn’t detract from our annual gingerbread house decorating party. We’ve set Em up in her bed with an iPad game to keep her occupied. She has a fancy mattress with support pads to help her stay on her side.
We typically have a bunch of kids over for the party, but Sara’s friends can’t come this year due to Covid. Instead, Allison’s seventeen-year-old brother Casey is being a good sport and joining us. I usually sit out the party and let the kids decorate the houses, but I’m feigning holiday cheer this year. Allison and I are making a house together since we’re short on the icing. She normally preassembles the houses, but juggling Em has made it hard for her to find the time.
The gingerbread house template contains four identical rectangular pieces, two for each of the side walls and two for the roof. The front and back pieces are in the shape of a house like you drew as a kid. They’re all “glued” together using the aforementioned icing.
In a daze, I start assembling our house while Allison gets the decorating supplies ready. I stick one of the side walls to the back piece, but then I inexplicably decide to add the roof piece next. It feels like I need to grow another hand to keep them all in place, yet now I’m somehow supposed to reach for the front piece and put the icing on the edge of it. Unsurprisingly, the house falls as I’m reaching for it and now there’s icing everywhere. Allison swoops in to help me and I see Em starting to twist on the video monitor.
I jump off my stool at the kitchen island and jog into Em’s room to help her. I hold her right hand and try to turn her head so her face isn’t smashed against one of the support pads in her bed. A minute later, she gets out of the contorted position, takes a deep breath, turns to look at her iPad game, and smiles. It’s incredible how quickly she can recover. I reposition her on her side and walk back to the kitchen.
Allison is attempting to get our house standing. Her hands move deftly with years of gingerbread house building experience guiding them. She starts with the same side and back pieces I did but then more logically adds the other side piece next. The roof can wait. I help by pre-icing the pieces. The front piece completes the walls and she moves onto the roof. As she’s laying down the final piece, one of the walls collapses and brings down the entire house with it.
Allison sighs and says, “I don’t understand. This never happens.” My shoulders slump and I’m irrationally annoyed that we can’t get the house to stand properly. Our house’s lack of structural integrity is almost too apt a metaphor for our life and this year.
On the monitor I see Em grab the edge of the iPad and inadvertently pull it down near her legs. She cries out to get our attention and I hear it again a split second later on the monitor—an effect that sounds like an echo. She can’t tell us what’s happening since talking requires the type of fine muscle control she lacks. I groan and once again get up to help her.
When I return to the kitchen, Allison has made the executive decision to make two A-frame gingerbread tents from the four rectangular pieces instead of a house. One of the tents has a chimney, for some reason.
Over the next forty-five minutes, we decorate the tents and the scene around them while trading off going into Em’s room to help her with a twist or put the iPad back in place.
I make a fire pit with a border of brown M&Ms and red and orange M&Ms in the middle for the fire. Allison makes a gingerbread chaise lounge chair with a circular red and white mint table holding a red licorice mug next to it. And we make a gingerbread tree with a red gumdrop topper to finish it off.
We spin around our gingerbread creation to show Sara and she points out the fact that a tent with a chimney doesn’t make any sense. She’s right. She turns her house around to show us her handiwork. Her strategy has always been to load up her house with as much candy as possible so she can eat it later.
As parents, we do these things we’d rather not do so our kids have lasting memories. We try to plan them so they go perfectly, but sometimes it’s the unexpected things that we remember the most. Even though Sara keeps teasing us about resorting to tents instead of a house, she says she wants to make gingerbread tents next year. Maybe that’s our new tradition.
I see Em start to twist on the monitor again. I look at Allison and shake my head in exasperation, then jog into Em’s room for the I-don’t-know-how-many-th time today.
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Your writing is so honest, so pure, and so visceral. Thank you for such a beautiful glimpse into your family's day-to-day. Looking forward to many more of these to come– hopefully with less twists and more stability. Happy new year.