As the events of these last days unfold it is difficult to know what to update. Earlier I shared a story about my son visiting his uncle Jeremy Mains to say his goodbye. As my brother passed away later that day, that event was folded into the pain of my brother’s sadness. I have been surprised, but a number of you have asked me privately for an update on how the Elias visit went. I guess in the sadness of the event I forgot to honor his effort as he visited my brother. As part of me wishes to affirm my son’s own way of saying goodbye to Jeremy, I will share for those who are interested.
One of the wonders of being on the Autism spectrum is that there are many social conventions in which Elias is just uninterested. This means I will probably fail at getting him to wear anything but sweatpants to the funeral — a battle I don’t look forward to. Yet, it also means I have the great pleasure of him still holding my hand without shame at fourteen years of age. As we made the long slow walk from the parking lot through the massive hospital to the tenth floor, Elias reached out, took my hand and walked beside me. There are moments as one battles grief when the simple comforting touch of a child’s trusting hand has profound impact. It grounds you back to reality; back to simplicity and innocence. It says, “Remember, there is still deep goodness and beauty in this world.” We walked along this way together.
There is power in the simple innocence of him wanting me to be his father, and of me wanting nothing more than to fulfill that wish. It’s a touch that is so pure and primal it cuts through the pain. You squeeze gently to say, “Forever, child, forever.” So together we walked, fingers entwined, down the halls, up in the elevator ride, to my brother’s room. Months of making that slow sad walk by myself to take my turn, and I think how I almost missed this opportunity to walk it with him together because I feared how he would react.
We stood outside my brother’s room and helped each other into our sterile yellow medical robes that protect Jeremy from outside germs. There is no doubt that wearing these robes telegraphs instantly that all is not well. It’s so clinical and unnatural; it reeks of caution.
Elias could see Jeremy through the glass. His uncle who has been so ravaged by cancer he was now under a hundred and thirty pounds. No longer able to respond to us. My poor brother. His poor uncle. We looked in together.
While Elias is smart as a tack, he can’t always regulate his feelings. The off switch doesn’t always turn off. Fear is FEAR. Grief is GRIEF. Loss is LOSS. He combats this by forcefully avoiding situation like this, talking incessantly about unrelated topics, or escaping into an iPad app or book. Yet Elias had made up in his mind he was going to honor his uncle. He would honor him. He would do it. A compassionate act of will trumping fear and emotion.
Elias and I entered the room. He swallowed hard. He walked up to Jeremy and took his hand. The same hand he used to take mine — a small young hand of deep comfort. He looked at his uncle’s face with such compassion. He stroked Jeremy’s hand softly. “Hi uncle Jeremy, it’s me, Elias.”
There are times for all parents when we see our children emotionally step forward in ways that amaze us. We think, “Where did that come from?” It’s like the times we take a confused look at them, stand them up against the growth marks on the wall and realize they have somehow grown three inches right before our eyes. “Where did that came from?” I tease my son that I do not give him permission to grow anymore, yet for years he has continued to disobey me! He rolls his eyes, it’s a corny joke I still love, that he no longer finds as amusing. But the fact is the same — he is growing in front of my very eyes. Sometimes I am too busy to see it until there is a chance to measure it.
Elias entered this room of sickness, and somehow, though his uncle was hardly recognizable, had the maturity to see the man he loved laying in the bed. He reached out and touched him. He stroked his hand. He said, “I’m sorry uncle Jeremy.” His eyes welled up and he cried as he stood there still holding his hand. This is a side of Elias I know little of. I see my son’s goodness daily — but not this emotional bravery. He didn’t run away and slam the door as he has done when overwhelmed. He didn’t cover his eyes. He just held out a hand of compassion to a very sick man and bravely accepted the emotion as is came over him.
I am dumbfounded. “Where did this come from?” Who is this young man in front of me? How foolish was I to think I might actually choose to shield him from this? To make the decision for him by simply not asking him if he would be willing to try again. I stand there and look at Elias and my eyes well up. He stands there and looks at his uncle. We are both crying.
There is a word I like that I don’t often get to use – transcendence. It can sound very stuffy and spiritual. In its most broad sense it touches on a moment going beyond the physical and embodying something greater. A moment that rises beyond the simple sum of the parts as something profound and “other” enters in. But transcendence for me doesn’t work unless it’s filled with other words like, sorrow, pain, death, humanity. This room was filled with all those things. My son and I stood smack in the middle of all of it, clad in yellow paper medical gowns. Yet it was more than that. The child touching the hand of his dying uncle and soothing him. That same touch somehow soothing me, his father, across the room. There is no way I could express to Elias how his precious vulnerable tears moved me. I know the cost it is for him to stand there and risk the emotions welling up inside him – the pain dial rising and rising and not shutting off. Yet still he showed sacrificial compassion to a man almost unable to receive it, which healed instead his own weary father who watched in awe across the room. Transcendence. A connection that is almost impossible to express in words. A father receiving a grace from a son. A deep gift I could never have even asked him for in a way he could have understood or hoped to reciprocate — yet he did it anyway, in his simple loving gesture. Transcendence. A moment I could only come close to expressing to him later by looking him directly in his eyes and saying later, “I’m so proud of you.”
I won’t over-sentimentalize this. It was a flash. An extended moment. It wasn’t long before the tears had him retreating to some safe iPad App on the couch before he began to FEEL too much. There was no further discussion on the time there. He didn’t hold my hand on the way back to the car. There was no other comment from him than, “That’s so sad.” We had nasty, worthless drive-through chicken nuggets for dinner.
In some ways I’m embarrassed to say the moment didn’t even sink in for a few days. When people asked how it went, I said, “He did so well.” It wasn’t until sitting up later late at night, sleepless, that I made some of the connections I am writing about now. I guess as parents we think of ourselves as teachers. We help our kids. We comfort them. We give them guidance. But they are humans too, with gifts, and hearts, and needs, and compassion. How foolish to be surprised to discover that sometimes when we hold their hands as we walk along life’s sad corridors, it is they who are actually helping, and comforting, and molding us into better people at the same time.
Thank you Elias. I hope that over the years, as I have struggled to be the dad you need, you have seen me grow too, and at times smiled and said to yourself, “Where did that come from?”
~~ Joel Mains