My Eighteen-Year-Old Son Said He Was Okay With Not Waking Up Anymore

How Could That Be?

My Son Said He was OK, Not Waking Up Anymore. What could I have done wrong?

There are many days when I believe I was born for this. Raising a child, now a young man, with disabilities. On other days, life reminds me of how little I know. The tension between the two goes in cycles and seasons. There is a rhythm, but not one I can define. It’s our life.

Josh is transitioning from pediatric doctors to those who tend to adults. We saw a neurologist for the first time today at the University of Nebraska Medical Center in Omaha.

It took several hours for the examination, and the questions were very in-depth. They were trying to get up to speed with an injury that had gone on for five thousand one-hundred forty-three days.

The doctor who did the initial exam was kind, patient, caring, and thoughtful. That approach allowed her to build rapport with Josh. She moved with a tempo both physically and verbally that matched Josh very well.

There was a discussion of the physical as well as the cognitive challenges. Dr. Doss asked Josh what he wanted the most help with. “My balance. And, being able to carry on a conversation with people.”

Those few words, those two answers, took him over a minute to get them out. Yet I write them, and you read them in seconds.

I share Josh’s words because I am frequently amazed by them. The depth. The love. The insights. The persistent nature of many of them. But his words are hard fought for and generally happen at a pace I cannot communicate through a keyboard on a screen.

As Dr. Doss continued her exam, we came to the point when we had to talk about his emotions. I leave Josh to answer all the questions until either he or the doctor asks for my input.

Periodically I interject with something I believe to be a problem that maybe Josh isn’t aware of. Today it was how the muscles on the right side of his body contract and tense up when he is anxious, excited (even happy, excited), or scared.

Dr. Doss excused herself after finishing her exam to chat with Dr. Torres, the top doctor in the Neurology department. A bit later, they both came through the door. By this time, Josh’s demeanour had changed. He doesn’t like it when I and doctors or therapists discuss his challenges or treatments. It reminds him too much of what he cannot do right now.

Dr. Torres, who also treated Josh with respect and care, had been well briefed based on his conversation with Josh. Eventually, though, the fluidity with which we were talking to Josh changed. His speech slowed down. His voice got just a bit softer. It sounded like he was searching for just the right words. I knew where it was going and didn’t want to hear it.

“So Josh…

do you,

umm,

have you?

I’m just wondering

if maybe, you might have

ever, umm,

say, wanted to go to sleep

and thought you

that you would be OK with…

umm,

not waking up in the morning.”

Josh’s response was, “Yes. Sometimes. In the past.”

I remember those days. Days of darkness cast a long shadow on his soul. It’s only been eighteen months since he started to see himself as a person who has value instead of a broken human being who doesn’t have a use anymore.

I don’t believe I caused any of his thoughts regarding falling asleep and not waking up. I think they come from life. The challenges of growing up and figuring out how you fit in the world and do you have what it takes. Tough questions for all of us. Visible disabilities or not.

And all that brings me to my thoughts when I started writing this post.

I am terrified of dying. Not of what happens after I die. I’m clear on that and happy about it, personally.

I’m terrified of leaving, and Josh being here without me. I’m terrified of him feeling alone when I’m gone. I’m terrified there won’t be someone there to catch him when he falls. Physically or emotionally.

I’m terrified of him losing sight of his value, his purpose. The fact that the world is better because he is who he is. A toddler that got run over by two semi-trucks and lived. With all his challenges, the world is better off with him in it.

On the way to the hospital this morning for Josh’s appointment, he said, “Dad, why will mom have custody of me when you are gone?”

“Do you mean when I die?”

“Yes.”

The question contained the answer, and I wondered why he would be asking it.

“Well, Josh, that would be because I won’t be here anymore.”

“I don’t want mom to have custody. I want you to have custody of me.”

“But Josh, I won’t be here.”

“Can’t you just stay?”

“No, Josh. That’s not possible.”

We continued to talk. I continued to try to help him understand. While I did, I wondered why this troubled me so.

I guess I just needed to name it and say it out loud, “There are things I’m terrified of.”

I’m afraid of leaving behind my son with lifelong disabilities. I’m afraid of him needing others, but maybe they don’t know how or care to give him what he needs.

I don’t have all the answers. I don’t have it all figured out. I wish it was possible to have it figured out. But maybe it isn’t meant to be “figured out.” Maybe it just is the way it is.

As much as I want to roll with the punches of our life, there are times I get resentful. I mean, nobody checked with me to see if I wanted the job before I got it. I just got it.

That being said, I’m happy to raise my son with all of his disabilities. I get the honour of helping him to figure out his life. All while I’m actually figuring out mine at the same time. And that is OK.

But sometimes, being a parent is hard. Not just with a child with disabilities but for any parent. And while it can be downright scary, it is beautiful and worth the anxiety, fear, and uncertainty that goes with it. I wouldn’t trade it for anything.

Keep the faith. Love wins.

#StrongerTogether

If you enjoy reading stories like these and want to support me as a writer, consider signing up to become a Medium member. It’s $5 a month, giving you unlimited access to stories on Medium. If you sign up using my link, I’ll earn a small commission.