A couple of weeks ago, sitting at my computer, going through my long list of Christmas to-dos, I felt a knot in my throat and a nagging feeling that something wasn’t right. I blew it off as feeling a little blue that I was by myself after spending the previous evening out with Ike, celebrating the start of us which was 20 years ago on December 29, 1999. We had gone to Harpers Ferry, a place we frequented a lot during our early dating years, and a place that draws us back again and again. I finally felt the Christmas spirit as we walked through the town in the dark holding hands. We smelled wood-burning and heard soft guitar music playing from the local shops that were open late for Olde Tyme Christmas. We bought an old fashioned train whistle for our youngest and then ducked into a restaurant where the waitress sat us right next to a fireplace. And for the first time in a long time, we spent the time together talking about things that weren’t so heavy. It was a departure from our usual banter about medical mysteries, insurance claims, school worries, food challenges, and sleep struggles. We were at ease, and it was a welcome feeling. On the way home, we drove through a few local neighborhoods to look at Christmas lights. It was one of those rare evenings when it didn’t feel like our world was upside down. It brought me back to 1999 when we were 16 and carefree; when we had plans and dreams, and we didn’t know what was coming.
I reflected on our evening and I resigned to making the most of a quiet morning. I felt the warmth of my ratty moccasins on my feet and settled into my chair working at my computer. I asked Alexa to play “A Charlie Brown Christmas” as I deleted emails and checked items off my list. Ike was out shopping with Jillian, and the boys were puttering around the house. All was well.
And then I had that realization that every parent has when you realize your house is too quiet, even with the soft Christmas jazz playing on the speakers. I asked Luke where Mark was and he answered “upstairs”. Mark often retreats to his room to gather and look at family photos. I climbed the stairs and could smell the smell. Mark had an accident and this was not foreign to us. Pooping on the potty has been mostly elusive since we made the switch to underwear over a year ago. As I turned the corner into his bedroom and peeked inside his bed, I found him under a pile of blankets and his pillow. He was curled up, with something all over his face. I feared that he had vomited. And then as I got closer, I realized that it was poop. My heart sunk. I pulled him up from beneath the covers, not an easy feat with an enclosed medical bed; straight to the bathroom to do damage control. The poop was loose, as it often is. I struggled to get the underwear down his legs without leaving long streaks down his calves. I pulled his ankles over the underwear, cursing under my breath as the mess smeared over his ankle locator. I realize how disgusting this all is as I type this out, but truthfully I am numb to the yuck. And as if to mock me, I hear his potty watch go off to the little mechanical tune of “London Bridges Falling Down” and Luke shouts up the stairs, “it’s potty time!”.
In defeat, I fill the tub with warm, soapy water and hoast him in as I proceed to scrub his face and fingernails. I then leave the two-year-old in charge of my bathing subject and sprint to my bathroom to get the nail clippers. Mark hates nothing more in this world than having his fingernails clipped but I had to get the poop gone. As he cried and I wrestled, I clipped his thumbnails which seemed to have the worst of it. Meanwhile Luke decides that it would be fun to take the soiled washcloth to wipe his own face. Horrified, I grabbed it from him and chucked it across the tub out of his reach. He then retreated in retaliation to play with the toilet cleaning wand. Feeling overwhelmed and outnumbered I quickly finished the bath and pulled Mark out of the tub. I dried him off and shuffled him to his room to redress. He was happy, giggling and completely unaware of how horrifying it was to find him in his bed that way.
As I bagged up his soiled underwear and removed the dirty bathmat, I dropped it all into a heap in the hallway and felt my chest cave. My eyes burned with hot tears as the knot in my throat that began as foreshadowing gave way to deep cries. I began to sob as the sounds of “Christmas Time is Here” softly echoed throughout the house. The smell of the mess filled my sinuses and refused to leave no matter how many times I washed my hands. In these moments the trauma floods in and my senses are heightened. It’s like a twisted mindfulness exercise. I am brutally and painfully aware of my surroundings. I can see, smell, taste and hear everything amplified. Feelings of “I can’t do this” overpowered me. He’s six and a half and he’s not bothered by having an accident and seems to even relish in it. He’s unaware of how awful it is to touch and taste his own feces. As I angrily clawed at the sheets on his bed, struggling to get the final corner released, I thought about how this won’t be the last time. I will do this again. And again.
At that moment, I needed to tell someone. I needed to talk about how hard this was and is; how challenging it is to live in this world where things seem to be ok, and then suddenly they are very much not. Just how much of a departure this is from normal.
I wanted to call or text Ike to tell him, but I didn’t want to break his heart. I didn’t want him to feel the all too familiar defeat and the dark feeling that creeps in when you imagine what this will look like as Mark ages and grows larger. And ultimately what it means for his ability to live independently.
Ike was out enjoying a daddy-daughter date. He had left our dysfunctional bubble and I didn’t want to drag him back in. As I sat and typed this out, he sent me a photo of himself trying on a suit with Jillian peering around him in the mirror. No, I didn’t want to ruin his time.
I don’t how to explain to anyone how hard this is but Ike knows. This journey of ours has changed both of us in good ways and bad. There’s no way to come out of this unscathed. He’s more serious, and so am I. And yet the previous night was a reminder that we are, at our core, still the same two people we were 20 years ago.
When Ike returned home, I told him what happened, he hugged me, completely understanding how hard it is to weather these little storms alone. And he scooped Mark up into his arms, told him how much he loved him and then helped me put clean sheets on Mark’s bed. He does all these things with a sense of duty and with a servant’s heart.
When I’m feeling defeated, Ike will say “he’s ok, Mommy”. He reminds me of how far we’ve come with toileting, and that Mark is improving. He tells me that he will expand his accepted foods again, and the food restricting is a phase. And that the sleepless, screaming jags are temporary. And he will reassure me that we can, in fact, do this.
And he’ll continue to walk with me in the dark, holding my hand, just like always.