When the Unthinkable Happens

 

Jeremy Robert

May 13th, 2011 - October 17th, 2024

It has been 84 days since I have seen Jeremy's sweet smile, since I have been able to hold him. The house is too quiet without him. He's not playing with his toys, his jiggly ball (wobble bobble) chiming and jiggling away. His car isn't banging against the side of his bed, or his toys aren't jangling against each other. His machines aren't whooshing and whirring and chiming. I can't hear his breathing sounds or his cooing or his laughter. His tablet isn't playing PJ Masks or The Amazing Spiderman and Friends.

How can someone be here one minute and gone the next? It still doesn't feel real. Even just today, there was a sound that I could have sworn was his cough and my instinct was to rush into his room to suction him. Then the grief hits all over again, because he's not there.

But, I really should backtrack. So much to catch up on, so much to say, and where to start? I'll begin with what I talked about at his funeral: The Gift of his Last Day.

He came home from school Wednesday afternoon ornery, and I lost count of the amount of times I replaced his trach from him decannulating himself, which necessitated me staying in his room with him. He started to get sleepy, so I turned on PJ Masks to help keep him awake and soothe him while I started on dinner for the family. During the title sequence for the show, I heard the distinct sounds he makes when having a seizure, so I rushed back into his room. His oxygen saturation had dropped, so I increased his oxygen and started recording/timing the seizure (in case rescue meds were needed). I noted the moment he pulled out of the seizure, but he still seemed like he was struggling to recover, so I stopped the recording and put my hand on his chest and gently patted him. "Hey, bud, I'm here. Come back to me," I said to him. 

He took a deep breath, and in his Jeremy way, he looked at me and then looked away, but his oxygen saturation returned to normal. His seizure had scared me (they always did), and I picked him up and sat him in my lap in the chair next to his bed. I used to hold him like that all the time, but less so lately because he was getting so big--he was over half my weight. I rocked him, and just held him while he recovered. I can't remember if he put his hand through my hair like he only did with me, but I would like to think he did.

I wish I had spent more time, really soaked in those moments with him, but I had dinner to attend to, so after a few minutes, when he seemed calm and back to himself, I set him back in his bed. He grabbed his toys and played the rest of the evening. Nothing seemed amiss.

Thursday morning, Zuri woke me early because she had a permission slip due that she had forgotten about, so I signed it. Josh usually helped the day nurse get Jeremy ready for school in the mornings, but since I was awake, I did instead. I remember picking out his shirt, one of the blue ones I liked, and since it was a rainy day, I grabbed warmer sweatpants for him.

Jeremy, who is usually not a morning person (he definitely got that from me), was already awake. I grabbed a diaper and started to change him, when his night nurse said that he just put on a fresh diaper. I pointed out that he was wet, to which the night nurse playfully batted his leg and said, "Jeremy, you're making me look bad."

Jeremy raised his eyebrows (which is his way of saying "yes"), and we all laughed. Everything seemed normal. The school bus arrived, and the bus driver called a greeting to both the school nurse and Jeremy, and I remember smiling at the fact that Jeremy was included by name in the greeting (oftentimes, because Jeremy was nonverbal, he was overlooked). Small inclusions like that were noted and very appreciated.

Jeremy went off to school like usual. Once all three kiddos were off, I started making some calls on things that needed to be taken care of around the house. I was on the phone with a company, trying to troubleshoot something that I had been working on for almost an hour when Jeremy's school nurse called. I put the other company on hold, and Jeremy's school nurse said that Jeremy wasn't doing very well and I needed to come pick him up. 

To be honest, I wasn't worried in the slightest. I was actually a little annoyed and I told the school nurse that I would be there in about 20-30 minutes (which is about the time it takes to drive to Jeremy's school). I ended the call with the nurse and returned to the other call as I quickly changed from my wet pajama pants (I had been outside in the rain trying to solve the issue) to jeans and a hoodie, which I threw over my pajama shirt. I told the company to send out a tech and ended the call. I was already in the car and driving to the school when I called the school nurse back to find out more details. The school nurse said that Jeremy was pale and lethargic. I asked if he had increased his oxygen, and the nurse said he was at 2 liters (Jeremy was typically at 1/16th of a liter). I let the nurse know I was on my way and hung up.

There was a TON that happened in the next thirty minutes, and I'm not going to recount it all. The drive will be forever seared into my memory. It went from an annoyance to an outright panic when I received several calls from the school and Josh that the paramedics were at the school, there was no pulse, and then finally that he was being transported to Primary Children's in Lehi. I had been diverted from my route by construction that I didn't know wouldn't allow me to go from west to east, which ended up being fortunate, because the alternate route I had to take ended up having the ambulance pass me. I chased the ambulance to the hospital, arriving just behind them.

The next ten minutes felt like an hour--I still don't know how it was only ten minutes--as I watched helplessly as they worked on Jeremy, but he was already gone. His poor little heart was tired and had had enough. And just like that, he was gone. 

It was forty-eight minutes from the first call to me to the official time of death at the hospital.

Cardiac arrest.

He was in no apparent pain when it happened. He wasn't upset. He just slipped peacefully away, and I can't ask for more than that.

But...how I wish he was still with us...

There was no big decline in his health--in fact, after a semi-rough summer, he was actually on an upswing. We knew--it was always something in the back of our minds--that the day would come. I always thought I would know, or somehow intuit, when that day would be. I thought there would be some sickness, or a general downslide. I never expected him to go off to school like any other day and not return home.

The days pass, and turn into weeks. The weeks have turned into months. Two and a half months and there is still a part of me that wants to believe he's just at the hospital, and will be returning any day.

I call the last 24-hours with him the Gift of the Last Day, because had he not been ornery and pulling out his trach, had he not had that seizure, had Zuri not woken me up early, I would not have spent that extra time with him. I would not have held him and rocked him. I would not have picked out his last clothes or watched as he teased the nurses. I am grateful for that time. I am grateful for the last thirteen and a half years we had with him. I will always treasure the memories.

"Grief is just love with no place to go." --Jamie Anderson

Goodbyes are not forever

Goodbyes are not the end

They simply mean "We'll miss you,"

Until we meet again