There are days when I actually think I was made for this. Raising a child, now a young man, with different abilities. Other days, I am reminded how little I know. It goes in cycles and seasons. There is a rhythm, but not one I can define. It’s our life. I guess that is the rhythm.
Josh is transitioning from pediatric doctors to those who tend to adults. We saw a neurologist for the first time today at University of Nebraska Medical Center — UNMC.
It took several hours as the examination and the questions were both very in depth. They were trying to get up to speed with an injury that has gone on for five thousand, one hundred, forty-three days now.
The doctor who did the initial exam was wonderful. A Dr. Sarah Doss. She was kind, patient, caring and thoughtful. She moved with a rhythm both physically and verbally that matched Josh very well.
There was discussion of the physical as well as the cognitive challenges. He was asked what he wanted the most help with. “My balance. And being able to carry on a conversation.”
Those few words, those two answers took him over a minute to get them out. Yet I write them, and you read them in a matter of a couple of seconds.
I share Josh’s words with you because I am frequently so amazed by them. The depth. The love. The insights. The resolute nature of many of them. But his words are hard fought for and generally happen at a pace I cannot type into the words I share 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 ask for my input.
Periodically I interject with something that I believe to be a problem, but Josh isn’t aware of. Today it was how the muscles on 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 go have a chat with Dr. Torres, the top doc for Josh. A bit later they both came through the door. By this time Josh’s demeanor had changed. He doesn’t like it when I and doctors or therapists are discussing his challenges or treatments. It reminds him too much of what he cannot do right now.
Dr. Torres, who was amazing as well, had clearly been well briefed based on the conversation he was having with Josh. Eventually though the fluidity with which we was talking to Josh changed. His speech slowed down. His voice got just bit softer. It sounded like he was searching for just the right words. I knew where it was going and I didn’t want to hear it.
I’m just wondering…
if maybe, you might have…
wanted to go to sleep…
and thought you…
that you would be OK with…
not waking up in the morning.”
Josh’s response was, “Yes. Sometimes. In the past.”
I remember those days of darkness that 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 being a broken human being who didn’t have a use anymore.
And all that brings me to what I wanted to say up front…
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, a purpose. The fact that the world is better because he is who is. A toddler that got run over by two semi-trucks and lived. With all the challenges the world is better off with him in it.
On the way to the hospital this morning for Josh’s appointment he says to me, “Dad, why will mom have custody of me when you are gone?”
“Do you mean when I die?”
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.”
The conversation continued. I did not leave him hanging or in a bad place. There was definitely more to it.
I’m not looking for sympathy. I’m not trying to say I’m such a good dad that… fill in the blank. I’m not really sure why I am sharing this.
I guess I just needed to name it and say it out loud, “There are things I’m terrified of.”
I don’t have all the answers.
I don’t have it all figured out.
Nobody checked with me to see if I wanted the job before I got. I just got.
I’m happy to do it!
But sometimes, being a parent is hard as heck and sometimes, it’s downright scary.