Updates

I dropped right off on the blog posts. My emotional stamina was not up to the task. I sat down more than once in the last month and tried to write. Only garbage came out. Which isn’t terrible, but also it wasn’t coherent garbage? It was just [Internal Screaming Intensifies]… You know? Well, I hope you don’t know.

I don’t know how often I’ll write here in the future. I don’t even know if any of y’all read any of this. I don’t know who it’s really for. I guess it’s still, like the index says, “I need some place to write them down.”

The Problem

Asher was gagged with an intubation tube, bound because he wanted to remove the tube and blinded because I was stupid enough to forget he had contacts in and they had to be removed for surgery.

This boy loved to talk. Loved to discuss worlds or mods or stories or… anything really. He talked constantly unless someone was talking to him. He always had a YouTube video going or a Discord chat going or was actively vibing with his Zoommates. He loved the exchange of ideas. And he was bound, gagged and restrained.

It was his darkest nightmare.

And it lasted for 10 days.

10 of the longest days of his life.

When he went for surgery, he thought he’d be pain and discomfort free “on the other side.” Whether that was death or on the other end of surgery. Well, because he had the audacity to survive death’s latest attempt to claim him… he was punished with a, nearly all consuming, refining fire.

We used a binary tree to communicate. Limited questions back and forth from a preselected set of questions and answers.

I remember one time we got to the end of those questions and he still wanted something.

“Okay, let’s start with the questions. Do you need something?” No
“Do you want to talk about something?” Yes
“Do you want me to tell you about your medical care?” No
“Do you want me to tell you about the schedule?” No
“Do you want me to tell you about something else?” No
“Do you want to tell me something?” Yes
“Is it about your family?” No
“Is it about you?” Yes

This was the end of the programmed questions. Now I have to guess. It took about 10 minutes before… I landed on the problem.

“Do you want to die?” Yes, yes, yes, yes, banging on the bed in relief yes.

Maybe someone out there reading this has been there. When their kid was so done with life, the only viable option in their head was the unknowable darkness. The promise of the release of pain. The mystery of the next great adventure. But… I took him to the hospital. In some part, his pain was my fault. Maybe I tricked him into thinking surgery would be easy. Maybe I was also tricked.

I leaned forward and I hugged him. I cried and I said, “I know buddy. I know you’re hurting and your frustrated and you’re upset. I know. I can’t do anything about that. I can’t kill you. All you have to do is get better and we can go home.” I leaned back and then said, “Do you want me to see if the nurse can put you to sleep? Maybe you can make the days pass faster?” Yes. Sad. Resigned. Yes.

Later, when we were moved to Seattle, we had a recurrence of the worst thoughts. The nurse woke me up and said, “He’s suicidal and I don’t know what to do. You said I could wake you up if I needed help. He’s biting his intubation tube to try and cut off the air.”

I got up. I went over to his bed. I held his arm. “Hey buddy. You’re pretty done with this life aren’t you?” Yes
“I’m sorry. We can’t kill you. You’re getting better. Every time you go into the operating room, they take less and less of your leg. And because you have to go back every day, we can’t risk putting the tube in and out. You have to stay. And you have to get better before we can pull the tube out.” No
“I love you. One day, you’ll look back at this moment and see it for the small point it time it was. I’ll talk to the doctors. I’ll see what I can do to get that tube out. How does that sound?” Yes

The Plan

So I did. Next rounds, the nurse brought up the suicide episode. She kind of nodded to me and said, “Dad helped him out,” and I took the opportunity to seek for Asher’s quality of life.

“As I understand it, the intubation tube remains in place because the risk of damage with his low platelets is really high. So we’re trying to minimize the risk to his life. I think last night proved the math has changed. I don’t know if he’s going to be able to fight much longer if we don’t take the tube out. What needs to happen to make that a reality?”

We discussed and set a target. If the surgeon came back with the all clear and we didn’t need to operate every day… the tube can come out. I went back into the room and told Asher.

He didn’t really have enough energy to be excited. But he did look relieved.

The Promise

A day later, the surgeons said they wouldn’t be back the following day. Extubation was planned.

10 days. 10 days of darkness and despair. 10 days of his own private Gethsemane. 10 days of being reduced to a body and not a person.

What were his first words?

“Wahoo!” No
“Water please!” No
“I love you Dad!” No

It was “Burn it with fire!” referring to the tube and the support that was across his face.

When I understood what he meant, I said, “Yeah, buddy! Absolutely. We’ll take care of that as soon as we get home.”

So I told the nurses I wanted to keep some part of it. They gave me the support without the pads against his face.

And when I brought Asher’s ashes home, I talked to my friend and asked him to, “Take care of it this year at Fourth of July.”

Day of

Me:
Do we have a plan for the Asher Inferno for the intubation support?

Him:
I thought we could go in the pasture where we do our campfires and make a smallish bonfire. When I say small, I mean 4-5ft high. Maybe we also hang it from a post, high in the air and build a fire around it like we’re burning a witch.

Me:
Thank you. Do you need supplies or lumber?

Him:
Nah, traded a bunch of tree work around the property for goats. I figure any kid who is that into watching my kids slap each other with tortillas will like a fire for burning something like a witch in Salem.

It’s important to have good friends. We didn’t get as tall, but the fire was hot.

I stayed as long as I could.

Just like I did in the hospital. Just like I did when you died. I miss you buddy. Happy Birthday tomorrow.