The following is a scene that did not make it into my upcoming memoir, Crying Is Not an Option. 

Perspective

             Parenting a child with disabilities is a shit show, exhausting, and sometimes feels so unfair that you just want to scream. Or for me, beat the shit out of a heavy bag.  The struggles, the relentless advocacy, the lack of control, the constant unknowns, the sheer weight of it all.   But, just like every challenge in life, it’s a spectrum of experiences and emotions, and every now and then you get smacked in the face by a moment that forces you to see your own situation through a different lens.  Call it perspective, call it reality—but in the middle of the chaos, perspective can stop you cold and make you realize how fortunate you really are, even when it doesn’t feel that way. One day, while working at the surgery center, I experienced exactly that—a raw, humbling slap of truth that made me step back, take a breath, and recognize the goodness I’d been overlooking.

 *Names of the patient, his grandmother and my nurse coworker have all been changed.*

It was a bitingly cold winter day in 2019.  Dominic was a big kid.  Like, really big.  Fourteen years old, almost six feet tall and weighed easily one hundred and sixty pounds.  He was also non-verbal, self-injurious with severe autism.  He was under the care of his grandmother, Charlotte, who was ninety pounds soaking wet.  He came into our surgery center for dental work.  Like many autistic and special needs children, including Caitlyn, he could not tolerate anything near his mouth, so he was scheduled to go under general anesthesia to allow the dentist to perform a cleaning, XRAYS and any necessary procedures he might require.

  We knew from the pre-op phone call the day would be anything but easy. Charlotte was upfront: Dominic didn’t speak, and anything medical sent him spiraling into panic.  Even on his best days, he was self-injurious —the bruises and scars told the story—and that only got worse when he was scared or overwhelmed. She’d postponed this appointment for as long as she could, clinging to hope that maybe things would get better, or that she could shield him from more pain. But his gums had started bleeding recently. She had run out of options. The fear in her voice crackled through the line. I felt it settle heavy in my chest, because this day wasn’t just hard for Dominic—it was a battle Charlotte had fought for years, and she was already exhausted before she even walked through our door.

Emma and I were the two recovery nurses that day.  Taking advantage of the time while he was still in the OR, we made a plan of care.  As Caitlyn’s mom, I had plenty of experience with caregiving for the autistic child, so I was happy to provide the bulk of nursing care while Emma would concentrate on the charting.  We communicated with Charlotte about the recovery process, so she knew what to expect.  I asked about his triggers and coping strategies, what communication tools she used with him, and any other suggestions she could share to make the process as atraumatic as possible. I leaned in and shared a small tidbit about being Caitlyn’s mother and that I understood how extraordinarily difficult it is to be in this position with an autistic child. I wanted her to see not just the nurse in front of her but as a fellow caregiver carrying the same weight. She could trust me to meet him where he was, however messy or hard it got, because I was right there with her in the struggle.

 Understandably, Charlotte was very anxious about the recovery process, saying it had never gone well for him.  “Dom wakes up ready to fight,” she told us.  “He also hurts himself.  It’s normal for him; he does it every day, hitting his head with his fists and biting and clawing his arms.  But when he’s upset or scared it gets worse.”

“As long as he is able to maintain his airway and isn’t actively vomiting, we can be very hands off,” I told her.  “I know with my own daughter when she is waking up from anesthesia, the less people mess with her, the better for everyone.”

When Dominic was rolled into the recovery area, he was still sleeping.  I noted that his breathing was even and unlabored and his overall color was good.  Nice and pink.  Little fissures in my heart started to break open as I noticed all the scars, scratches, and bruises in various states of healing all over his arms, face and neck from his self-injuring.  

Oh my God. This sweet boy.  He has no other language but to hurt himself.  This is how he communicates to the world.  

I had a random, unexpected flash of gratitude for Caitlyn.  Her language may be severely limited, but she can communicate.  And she doesn’t injure herself.  Or other people.  The realization almost knocked me off my feet, it was so strong and I had to bite back tears.  Quicky, I shook it off.  Now was not the time for distraction.

It was about to get real sporty.  

The calm of Dominic’s anesthesia slumber didn’t last long.  Within just a few moments, he was wide awake.  His dark eyes, wide in confusion, pain, and terror.  It was clear he had no idea where he was, what the hell happened, who we were, or what was happening or why.   He had no idea if we intended to harm him and, in that moment, I could only assume that was exactly what he thought.  I could almost see the fight-or-flight switch in his mind kick into overdrive.  Because I recognized it.  I’ve seen it in Caitlyn when she wakes up from anesthesia more times than I can count.  

He threw back the covers, ripped the cardiac leads off his chest and the IV out of his arm.  He was up and out of the bed before we could even process what was happening.  Blood dripped from the IV site in his arm.  Even with his grandmother by his side, her familiar face and soothing voice, we could not calm or redirect him. 

It was game on. 

The one and only priority I had was to keep him and us safe.  He paced around the bright and unfamiliar place, perplexed by his surroundings and trying to find doors to escape through.  He grunted like a wild animal.  He was intermittently sleepy, then agitated. His gait was stalky, with a purpose, then sluggish.  He’d plop down in a chair and put his head in his hands and close his eyes for a moment.  He was so sleepy, but his adrenaline was stronger.  A moment later he was up again, pacing, grunting and wildly flailing his arms about like a wounded animal.  

Suddenly, he slammed his head into a wall.  The loud thud his skull made on impact, and the dent it left, shocked the hell out of me.  I wasn’t expecting it.  In another moment of calm and sleepiness, he again sank into a chair.  Taking advantage of the mere seconds, I had, I cover and wrap the hand that was dripping blood from the IV site while Emma handed me the pulse oximeter. I put it on his finger to measure his oxygen saturation.  Trying in vain to get some sort of documentation and check at least ONE box for our charting.  The next moment he was up again, the oxygen probe flew through the air, as he paced, his eyes were like saucers with fear, his arms continuing to flail wildly around him like he was trying to protect himself. 

It became clear really quick that the best medicine we could give this boy was to get him the fuck out of our surgery center and back into a familiar place. 

Like, STAT. 

“If we can get him into the wheelchair and down to the car, are you ok to take him home now?” I asked Charlotte.  “It’s not ideal for us.  We’d like more documentation but realistically, his skin color is good, he is not vomiting, and he is breathing fine. I feel like we are only making things worse for him.  What do you think?”   

She nodded vigorously.  “Please.  Yes. I need to get him home.” She was practically begging us.  “Last time he had anesthesia, it was just like this.  But as soon as I got him in the car and he knew he was leaving, he calmed down.”  

I knew this scenario well.  The last few outpatient surgeries that Caitlyn had were just like this.  A nightmare in the recovery room but as soon as she sat in her wheelchair and knew she was getting out of there and going home to her safe space, where no one else would hurt her, she totally turned around.  It was like a switch flipped in her head.  I had the feeling that’s exactly what Dominic and his grandmother needed too. 

These were unique circumstances for Emma and me. The usual rules we lived by—watching the patient for at least an hour post-op, tracking every set of vital signs, checking skin color, making sure he could sip water without getting sick—suddenly felt irrelevant. The reality in front of us demanded something different. 

Protocol said stay. 

Common sense and compassion said get him the fuck out here.  Emma and I locked eyes, silent understanding passing between us. We knew we had to scrap the script for his sake, pivot our care in real time because this moment called for it.

 Emma went over the discharge instructions with Charlotte as I grabbed a wheelchair.  Knowing better than to touch Dominic and agitate him further, I placed the wheelchair behind, out of his line of sight so it was ready to go.  As I reached down to lock one of the wheels, I felt a shock of pain to my right eye.  I stumbled back into the nurses’ desk, as an explosion of stars took over my vision for a hot second.  

Stunned, I steadied myself against the sturdy desk and tried to figure out what the hell just happened.  I heard a deep, guttural sound, a strangled cry, coming from Dominic’s throat that shook me from my shock.  He was bent over at the waist, his hands balled into fists and flailing wildly in all directions.  And I immediately realized what happened: I had simply caught the back end of a flailing fist. 

It was totally my fault. In my attempt to plan ahead, keep him safe and eventually encourage him into the wheelchair, I had gotten too close and unknowingly placed myself directly in the path of his manic stimming.

Emma and Charlotte were next to me in an instant.  With a firm hand on my shoulder, looking directly at me, Emma asked, “Jen, are you ok?”  

“I’m good,” I mumbled, as if habit.  “I’m ok.  It’s ok.”  

I am far from ok.   

I was still in shock, my eye exquisitely tender, was starting to throb.  “I’m ok,” I repeated.  “It’s ok. I’m ok.  It was my fault.  I got too close when I tried to lock the wheelchair.  I just got in the way of his fist.  It’s ok.  I promise.  He didn’t hit me.” 

I was rambling, my adrenaline kicked in.  I felt desperate to convey that it wasn’t his fault.  That it wasn’t Charlotte’s fault.  And that I was ok.   

Even if I wasn’t.   

Usually, we had no less than four people in the pre-op, recovery area and nurse’s station but in that moment, no one else was around.  Somehow, it was just me and Emma.

“I say we scrap the wheelchair idea and walk him down together,” I said.  

Emma wasn’t convinced. “He’s still pretty unsteady.”  

She wasn’t wrong.  

But we didn’t have a lot of options.  We simply need to get him to the car safely.  

“None of this is ideal,” I said.  I looked at Charlotte.  “Ok.  How about this?  Why don’t you walk just in front of him, so he can see you and hear you.  You guide him forward.  Just keep telling him you are taking him home and see if it redirects him enough to follow you.  Emma and I will follow as close behind as possible for support.”  

Emma still looked skeptical, and I didn’t blame her one bit.  I had no clue if it would work.  I was throwing spitballs at the walls and hoping one stuck.  

Charlotte said, “I’m good with that.  I just need to get him out of here.” She turned to her grandson. “Dominic, it’s time to go to the car and go home now,” she told him, her voice soft, almost a whisper.  We were all terrified of triggering him further.  “Come, Dom.  Let’s go this way.” She gestured to the door and ever so slowly, walked in that direction, glancing back at him, encouraging him to follow.  

Miraculously, his feet started slowly shuffling towards her. 

Our progress was excruciatingly slow.  One foot.  Then the other.  I was on high alert, waiting for the moment he would lash out.  As we passed through the heavy exit door of the surgery center and into the long hallway, without warning, he slammed his head into the wall leaving another large dent in the drywall.  

It didn’t faze him whatsoever.  He continued his slow shuffle.     

“He does that a lot when he’s upset,” his grandmother said as if by rote, still moving forward, clearly not wanting to disrupt the momentum.  She’d seen it all before.  

I could never get used to this.  

 Like elephants protectively circling a wounded pack mate, Emma and I escorted the boy and his grandmother down the long narrow hallway. We took the stairs instead of the elevator—not ideal—but we were terrified the short wait for the elevator would interrupt his trance-like forward motion. 

Our progress was agonizingly slow, but we made it outside to the car without further incidents and saw them off. 

By the time Emma and I returned to the surgery center, the rest of our staff was at the desk.  My eye was throbbing with its own heartbeat, and I felt a headache sprouting.  Emma and I were silent, both of us trying to process the whole event. Neither of us had words for what we were feeling.  

Our coworkers recognize that something was off.  “What happened?” someone asked.  Emma quietly recounted the story while someone pressed ice against my swollen eye. I sat there, raw and vulnerable as the rush of adrenaline faded from my system. 

My coworkers and friends instinctively closed in around me. Their hands, their words, their presence—each gesture felt like a lifeline. I let myself lean into their care, feeling the heavy weight of vulnerability settle in my chest as they gave me unconditional love and support. At that moment, I wasn’t just a nurse or a colleague; I was broken and held together by their love. 

 “I’m fine, you guys.  It’s ok.  I’m ok,” I kept repeating, as if that would make it ok.  And by ok, I didn’t mean me.  

Or my stupid eye.  

I couldn't get Dominic and his grandmother out of my mind. All of it felt excruciatingly unfair. His world was so small—his pain was his language.  His only currency.  And hurting himself was the only way he knew to reach out. His grandmother was his everything. She was fighting so hard for him, pouring every bit of herself into loving and protecting him, holding her ground alone. No other family stepped up—she did it all, with almost nothing to help her. I saw the exhaustion etched into her face, but also this fierce determination. It made me realize how fragile and exposed we all were. I felt raw, hollow, like my own heart had been scraped clean by witnessing their struggle. The weight of their loneliness smashed me; I was powerless, ached for them, wished I could do more, and felt the bitter sting of helplessness. Their reality was so stark, and there I sat—overwhelmed by the depth of it. 

And in the next breath I caught myself feeling overwhelmingly grateful. As imperfectly perfect as Caitlyn was, as big of a pain in my ass that she sometimes was, as crazy as she drove me because she didn’t communicate as well, I wished she would, despite all of that, I was profoundly grateful. I’d never felt this depth of gratitude before. Everything could have been so much worse. 

I wasn’t alone. I had a husband—a equal partner, someone who stood with me, loved me fiercely, and carried the weight beside me. We had Cameron. We had a village in our corner: friends and family who stepped in whenever Caitlyn needed extra support.  When I needed extra support.  This village who lifted me up when I needed to catch my breath or catch me when I fell apart for a moment. I was surrounded, held. 

I was safe. 

And even as I felt the ache for Dominic and his grandmother, I couldn’t ignore this tidal wave of gratitude—of relief—for all the ways my own life was buffered from the relentless isolation they faced. It made me feel exposed, guilty almost, but also so deeply, painfully thankful.

I had love. 

I had help. 

I wasn’t fighting alone.

Caitlyn had a full life, vibrant with joy and friends and activities and inclusion. And acceptance.  

Who the fuck am I to complain??  

Hot tears burned the corners of my eyes. 

I had so many emotions that were assaulting me from all directions.  I didn’t know what to do with them all.  

Where to put them.  

How to reconcile them.  

And I didn’t want to cry in front of my coworkers.  Crying was not an option.  

I was instructed to go to Employee Health to be followed up.  I called Jim to give him a heads up that I would be late.  

 A few hours later, I finally returned home.  Jim held me while I recounted the story.  And cried. A lot. 

Now I could release all the emotions that I had been holding inside.  Now I could cry.  I wasn’t even sure why I was crying.  I just knew the emotions were too big to keep inside. And that I was safe now. 

But Jim got it.  

Because he always does.