In the early days of our journey, the months after our son’s diagnosis and my return from my last deployment to Iraq, things were unimaginably difficult. He wouldn’t sleep. Whatever devolution and regression that was happening with him drove an aversion to staying still long enough to fall asleep. I would lie in his little bed with him, holding on to him as he kicked and screamed like he was lit on fire. Eventually, he would wear himself out and drift off. Sometimes it took most of the night. Sometimes just hours.
There was a night, in the depths of it, at the point of exhaustion, I surrendered. I let go and lay there next to him and let the emotion run out of me. For the first time in my life, I prayed. It was a simple, honest prayer in the darkness. I just wanted it to stop. I had nothing left. When I was done, he was asleep. And I drifted off shortly after feeling a sense of calm I hadn’t felt in a long time. There was no miracle. The next night was just as bad. And so was the next. And many after. But when I reached my breaking point, I would pray. And I would focus what positive energy I had in turning over this burden to a higher power. And it made things easier. It didn’t make the hard things go away. It made me better within them. The simple act of putting my mental energy into a higher power had that effect. And so began my journey of faith; as a man in my 30’s who believed his whole life that he was too smart to be duped by that sucker’s game. A decade later, my faith is central to my life.
I asked BJ Miller of Zen Hospice about the advice he gave to the caretakers of long terminally ill loved ones. It occurred to me that much of the emotional pattern I was experiencing with my son was similar to what my family went through with my mother’s 3 yr battle with ALS. He told me that one of the central enablers of sustainment for caretakers was the ability to see themselves in the suffering and need of others. And to see themselves in the care they gave as a part.
It’s not easy to do as the months and years drag on. It takes an adjustment of eye level. One needs to step back and see a broader picture and view themselves as a part of something bigger than they are. Bigger than their own pain. Bigger than the moment of hardship they’re in. The critical shift is to move yourself out of the center of the problem, the unfairness of it all, and into the care being provided. And that really only works if you’ve got somewhere else From which to see the problem.
The central message of my faith as a Christian is simply put, to put God at the center of your life. And that the application of doing that is through loving others. The central message of many faiths is some version of that which enables a similar activity. And so for many special needs fathers, faith is a critical enabler of strength.
What my family lives through is unfair. It’s unfair to my child. It’s unfair to my family. It’s unfair to me. Over time, focus on that unfairness turns healthy and honest sadness to bitterness. And that bitterness erodes the soul. Faith breaks that cycle. Somehow. Some way. It just does. It’s written into our source code. I don’t know how anyone avoids it without some connection to a higher power. And I don’t know how to do that any way than some form of faith.