The Last Mystery and the First Goodbye

January 4, Update:

A quick update on things: Asher continues to steadily decline. Breathing is a little harder each day, and his heart rate continues to climb. He can’t turn his head or move his extremities anymore. Communication is all by way of weak eye movements, or very tiny mouth movements which are so subtle, we can’t usually decipher them. Without those functions, we consider him “locked in.” He hasn’t consumed anything other than small quantities of liquids in the last 4-5 days. We’re grateful that he’s only complained of one headache. Pray that he will remain pain-free.

The fighting energy he has left is typically used to fight sleep. He loathes sleeping. It’s astounding to watch, really. We expected that getting regular doses of morphine would push him to sleep more often, and he while sneaks a snooze here and there, for the most part, he powers through drowsiness. All the while, I wonder what he’s thinking about. This tumor leaves him 100% cognitively intact. So he’ll still watch TV, or listen to someone tell him a story, but he’s beginning to get really bored because of all that he can’t do. Eye-rolls are frequent. He’s growing tired of the sad and somber atmosphere that’s been hanging around for a few days. I’ve had to make a conscious effort to be as “normal” as I can. He still has a sense of humor, as you’ll see from the attached photo.

A typical symptom of the human process of dying is a significant reduction in appetite. As the body begins to shut down, the need for food for energy is greatly reduced. It was clear to me by this point that we were seeing Asher’s last days.

As December drew to a close, he began to force himself to stay awake long past his usual bedtime. We would always leave his lamp on for him as he went to sleep, and turn it off an hour or two later after he fell asleep, so we were shocked to be making our way upstairs for bed one evening in early January to find him still fully awake. After a couple of nights in a row, we began to sit with him. Sometimes we would read or talk to him, and other times we would just sit and be present. We would ask him:

“Are you afraid to go to sleep?”
“No”

“Are you hurting?”
“No”

“Do you need something?”
“No”

He couldn’t do anything but lie there, but that’s what he would do for two to three hours past bedtime, and it didn’t change his tendency to be up before the sun. Whatever was occupying his mind at the time remains a mystery. I often thought of that line from the famous poem “Do not go gentle into that good night” by Dylan Thomas: “Rage, rage against the dying of the light.” It’s purely my speculation, but it seemed like he wanted to squeeze every last moment he could from waking life.

During one of these evenings, I decided that I didn’t want there to be mystery going both directions. Because I was certain he could still hear me, at bedtime just a few days before he passed, I sat down beside him at his bed and told him all that was in my heart to say to him. I needed to be certain that I had done everything I could to make sure he knew how loved and treasured he was. I relayed the blessedness of being his father, the joy that it was to have him as my son, and anything else that came to mind regarding his place in my heart and life… I was saying my goodbye. He was an emotional boy, and though his body had moved beyond the point of being able to reciprocate, I know him well enough to know he was moved. When I had spoken all that I could say, I got my daughter, and told her to do the same. She proceeded to shower him with words of love, and express how much she was going to miss him, and even tried to encourage him about where he was going. When she was done, I put my daughter to bed. I caught my wife in the hall as she had just finished her own bedtime routine, and I said, “You need to go talk to Asher.” “Okay.” I stopped, and looked her in the eye and said, “No, you need to go talk to Asher. He can still hear you. It’s time.” She teared up, and said, “Okay.” I didn’t stick around to listen in on this one, because I was a wreck. I grabbed my keys, jumped in my pickup truck, and left the house to go cry my eyes out with the deepest groans I think have ever come out of me.

This act of “saying goodbye” brought an unexpected freedom to my remaining time with Asher. There is a dreaded sense of finality when it comes to thinking about saying those kinds of things to a loved one, so it’s easy to avoid. But on the other side is the freedom of knowing that there is nothing left unsaid. I could focus my energy on spending time with him and taking care of him, without the distraction of wondering “Is now the time? Will it make him too upset?”

Perhaps that is one of a few things I can pass on to you, the reader. It’s common with the news of the death of a child to hear another parent say they are going to hold their children a little tighter that night. But I say to you, don’t stop there. Find a space to pull your children aside, one on one, and tell them all of the good things in your heart that you think and feel about them. Bless them. Leave nothing good unsaid.

We’ve had the opportunity to speak everything that’s on our hearts to him, and I can’t tell you how grateful I am for that. I’m grateful that we will be able to live the rest of our days without thinking “I wish I would have said _____ when he could hear me.“ It’s such a blessing.

Pray for grace, mercy, and peace over the next few days. They will be some of the hardest of our lives.

Thank you for continuing to pray. Your prayers are not in vain. God is good to us. Asher’s best is yet to come.