Wednesday, October 11, 2017

Loving Hard Through the Horror of Being Five

This past weekend, my five-year-old son, Elliot, asked me if he was going to die.

Those words carry weight. "Daddy, am I going to die?"

The tears came soon after, big eye-welling tears because somewhere in his five-year-old brain, he'd made the connection. Real horror came to my son, and nothing could touch him in quite the same way again. Maybe he'd caught just enough of the news or someone talking about the news to shake his frame. Maybe not. The knowing comes for all of us but in different ways.

I remember being five. I remember the day an ambulance came and carried my father away, how my mother didn't come home until nearly midnight, and how my brother spoke of dropping out of school and going to work. It was early fall 1980--the beginning of my brother's senior year. A brain tumor had come for my father.

I remember other things about being young: my grandparents staying with us while Mom was away with Dad. There were trips to see neurologists and CAT scans and other things which seem like bloodletting and leeches now, but delivered state-of-the-art medical care in 1980. Dad changed. He aged faster and vomited often from the cocktail of medications and radiation. He died nine years later, catatonic, in the same hospital where he had been diagnosed.

I also remember how I cried when I thought Kermit the Frog was going to die at the end of The Muppet Movie. Somehow, my five-year-old brain knew, just like Elliot's. Innocence evaporated. Poof. And no horror is truly greater than the loss of that childish innocence. Once it's gone, there is no return. That has always haunted me more than anything. It's the true darkness in the basement, the stranger lurking outside, or the danger in the woods. For me, it wound around the thing which ate my father from the inside out.

My son faces new monsters. We've done horrible things to each other. We've built an artificial world with social media used to insult, divide, and destroy each other. We've killed each other with startling efficiency in Las Vegas, Orlando, Newtown... All that horror, all that innocence lost. We can't go back, and I'm not sure how we can go forward. Where would we go?

What does a five-year-old do after asking, "Daddy, am I going to die?" Where can he go to be safe again?

I have no magic to restore the world--I can't even change what my son now knows. But we play together. We decorate the yard for Halloween and bake cookies at Christmas. We take trips and awe at mountains, hunting for a glimpse of illusive big-horned sheep. We read books together and hug often. We both know, and that knowing makes us love hard.

And love, in the end, is the only thing that really matters.

Wednesday, May 24, 2017

Geeking out over The Black Hole (Disney, 1979)

Man... how the time flies. Here's the latest Trash Can Gold Mine, wherein yours truly discusses one of his favorite childhood movies and my new favorite toy.

Yes, I purchased two Kubrick's on eBay: Old Bob and Maximilian from Disney's The Black Hole. Those old timers in the crowd might remember the movie. It's one of my favorites because of the amazing music, the creepy "haunted spaceship" vibe, and the robots of course.

Wednesday, March 29, 2017

Playing Through my Midlife Crisis

I'm officially calling my midlife crisis. About two weeks ago, I started a new hobby which ties together several life threads...

Yes, I'm making YouTube videos. I'm an amateur (as my kids remind me), but it's a fun hobby. And it's my excuse to play with toys, buy old stuff, and open collectibles from yesteryear. That was the plan at least. And then Elliot intervened:

Oh, there still will be plenty of old junk, but I think Elliot and I will have some fun playing games together. Even at five, the kid is drawn to YouTube and enjoys watching himself on the little screen.

So for now he's my production buddy. I'll do some solo stuff (boring) and some Elliot stuff (awesome). I'll let him play with some old toys from my childhood and go head-to-head with some modern games. This hobby is my chance to hunt for Aaron the Kid while fully engaging in life as Aaron the Dad. And while Owen and Max haven't been featured in a video (yet), they are watching them. This might be a great way to sneak some parenting messages past them...

Please subscribe to the YouTube channel (if that's your thing) and see where this adventure goes...

Tuesday, March 14, 2017

Making Meaning

If you call me the enemy often enough, does it make me one?

This is old ground... I am a heterosexual white male in my 40s who attends church (mostly) every Sunday and hails from a small town in Kansas. These are details, and maybe they are enough for you to "know" me. These are the details which have kept me (mostly) silent since Donald Trump was elected president. 

Who needs another white, male, heterosexual voice from "rural America"? 

I've kept silent because men like me are the enemy. In Sunday's op-ed (3/12/17), Leonard Pitts all but says I'm the problem. He points out a dichotomy between rural/city and Christian Fundamentalism/Secular Humanism as if clear bright lines separate these groups neatly as conservatives and liberals. His words ruffled me. Maybe because I'm a white, male, heterosexual voice from "rural America." Maybe not.

In our race to "understand how this happened" to our country, we've lost sight of a fundamental human reality--and a fundamental human need that goes along with it. The universe is a big place, and we spend our lives making meaning in it.

Personally, I've found solace in knowing I'm really not in control of anything. After Aimee's death, it was a comfort to know life was out of my control. Yes, a comfort. When I think about my father's slow descent and death after a brain tumor, I realize the same strange comfort shaped my youth.

The universe really is a helluva lot bigger than I am and it really doesn't give a shit what I think.

I've struggled with spirituality all my life--what my friend Heather calls my existential crisis. I've been a church-goer for most of my forty-plus years on the planet, but I'm not fundamental. Why do I go? It's simple really: I like the community. I like to be challenged. I love a reminder that I am what I am: ash and dust, mortal, small, and definitely not in control. Ash Wednesday is one of my favorite church nights because those messages about mortality are embedded in its very fabric: "For he knows how we were formed, aware that we were made from dust." (Psalm 103:14)

Do I really believe in God? Some days, yes. Others... Does it really matter?

The universe is bigger than me and doesn't really give a shit what I think or believe. I'll write here, in this blog, a tiny bit of my thoughts and feelings and my momentary reasons for being, but ultimately, the universe will keep spinning. But we, as humans, need meaning. It's a hole which too many of us fill with addictions and destructive behavior. It's that ache that wealth and status can't soothe. My core desire is to be a part of something bigger than me--bigger even than my "tribe" (which seems to have become a buzzword of late as we frantically try to fill the gaping holes in our lives). Like that line from "Helplessness Blues" by Fleet Foxes: "...a functioning cog in some great machinery serving something beyond me..." It's what I feel deep in my core, wherever and whatever that core is.

You call me an enemy, but I really just want to be a part of something that is serving the universe beyond me. I can only control what I can control... who I vote for, but not the color of my skin; what I write in this blog, but not the fact that I am a hetreosexual male; who I seek as allies, but not whether or not those allies want me on their side; the lending of my listening ear and empathetic heart, but not whether anyone will speak to me or trust me.

I am not the enemy nor am I on the other side of any simple dichotomy. I am just a man. A human. A cog hoping for a home in something far grander than I am alone.

My meaning in life is not to be anyone's enemy--nor will it ever be. 

Monday, March 6, 2017

On Being a "Difficult" Parent

I'm officially intransigent. I think that means "difficult."

The last time Max had an infusion, one of his inflammation markers was elevated. I've learned that predicting a Crohn's flare up can be a guessing game er, prediction activity involving a slew of lab results and reports of clinical symptoms.

He'd just had an ear infection and ten days on antibiotics, so wonky labs could have been innocuous or a "false positive." It was also one result from a few inflammation markers checked every infusion--and the other numbers were fine. Evidently his GI specialist didn't think so, and through a rather uncomfortable round of "let's play triangulating communication" with me and his nurse a week after those labs, I learned he wanted to move Max to a six week rather than eight week infusion schedule.

Look, I know my kid is sick. He spent nearly five weeks in the hospital last winter before having three surgeries through June. But--and this is pretty crucial--Max hasn't reported a Crohn's symptom since the first surgery liberated him of a very sick colon.

I don't harbor illusions that my child is healed and cured of this disease. We travel to Kansas City for infusions every couple of months (I guess six weeks now) since last January. We make sure he takes his vitamins and anti-anxiety meds. I monitor how much he eats, his exercise--everything. I am not happy that the doctor is changing treatment based on a single lab result one time and the apparent dismissal of my explanation that Max has been symptom free (through the nurse triangulation channel, of course). I certainly am not happy such a thing happens without any examination or discussion with the patient.

In fact, his specialist used the word "intransigent" in an email to the nurse with whom we were triangulating to describe my attitude toward Max's symptoms in the past. Go on, look it up. Google that bad boy. Kind of sounds like an insult, right?

Before Max's hospital marathon, I may have misread some symptoms. I may have not understood the gravity of the disease and how things could spiral quickly. Max also struggles with anxiety, and I know the anxiety contributed to his downward spiral. This is how things happen with chronic diseases as families learn to manage and cope.

Things are different now. He has no colon. I monitor him more closely. He's receiving treatment and therapy to manage the anxiety And he's been doing well.

But now I'm a "difficult" parent. Intransigent. Pig-headed and stubborn and, in his specialist's opinion, blind to what's really going on with Max.


I live with Max. I know what's going on. I know how many times he has a bowel movement every day. I know how he's feeling and what his worries are. I know what math group he's in and the book his reading group is devouring. I know his favorite Pokemon and the name he uses on Minecraft servers. I know he asked for a pill form of Benadryl before his infusions (given before Remicade) and I know the specialist hasn't bothered to change those orders to meet his request since making that request nearly six months ago. I also know that same specialist never had a conversation with Max's surgeon last spring. I know that's not necessarily how medicine works, but I know that's how I work. I know I expect more communication than a couple of phone calls with a nurse and a naughty note about me from the specialist to that nurse. I know I'm frustrated and sometimes mad as hell.

And I know, most of all, I love my son and will advocate for him to the best of my ability,

If that makes me "difficult," bring it on.

"My dad is pure evil." 
(Elliot, age 5)