Just Like Always

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. 

An Open Letter to the Under Appreciated Special Educator

To the Under Appreciated Special Educator:

You have a really hard job. Harder than most people realize or understand. 50% of your special education colleagues will leave before their fifth year of teaching. Your job is not a job, it’s a calling. One that results in high turnover and burnout. This job is not for everyone and the select few who are called have a tremendous responsibility. You are tasked with leveling the playing field for students whose decks are stacked against them. And your job is getting harder as the demands on you increase, and funding and support decreases. Teaching can be a thankless job, and even more so when your students have extra layers of challenges. You love on your students like they are your own and are rarely recognized for your efforts, but I see you.


I see you get to know each of your students and understand how they operate and what makes them tick.


I see you researching and pinning things on Pinterest that you aspire to do in your classroom.


I see you spend your own money to outfit your classroom with sensory items, books, and toys that are on the developmental level that your students need.


I see you complete all of the legal aspects of your job, maintain compliance with state and federal guidelines, and handle ALL of the paperwork.


I see you keep track of all of the goals and objectives on each of your student’s IEPs, compiling the data that you need to be able to complete their progress reports and report cards.


I see you juggling multiple IEP meetings in one day while struggling to have your class covered in your absence.


I see you stuck in the middle between what administration wants, budget constraints and what you know the student needs.

I see you handle parents, those that are overly demanding and those who are unresponsive. And despite their different levels of involvement, you recognize their importance to their child’s education.


I see you when you are sick and struggle to get a substitute teacher for your room because just like teachers, subs are hard to come by, especially those trained to work with students with disabilities.


I see you skip lunch and your planning periods because your students need you.


I see you get creative with materials you’re given or have purchased even if things are destroyed.


I see you dodging spit, kicks, meltdowns, flared tempers and behaviors while still trying to maintain safety and meet the needs of all of the other students in your class.


I see you love the hard to love students.


I see you recognize when a student is having an off day and employ methods to address it or perhaps not push as hard that particular day.


I see you take on a parent role during the day because you know at a certain moment your student needs a mom/dad versus a teacher.


I see you beam with pride when one of your students finally reaches a goal, no matter how big or small.


I see you try to come home to your family but struggle because you gave absolutely everything to someone else’s kids all day.


And I see you pick yourself up again and again, and return to your classroom despite the adversity and lack of support.


I write all of this because I am a parent of one of your students. A grateful one at that. I want you to keep going; to keep fighting the fight, because it’s always a fight. For services, for funding, for inclusion, equity, and for respect. Please keep fighting, because I need you by my side. I don’t have the option of quitting this gig, and I need a powerful advocate like you in my child’s corner.




An eternally grateful parent of a special education student