Temptation to wash hope down the drain

When you’re in the shower and using your one good hand – while your other one is wrapped in a cast –to bathe your 8-year-old son who has special needs and all you’re doing is trying to maintain your balance and scrub the crusted shit off of him, having any type of hope isn’t easy. And maybe we’ll all laugh at this one day, but I don’t think so.

And it is so easy, so quick and so tempting to let frustration take over and toss what’s left of your tattered hope onto the floor, not even to smash it in anger, but, rather, in sad resignation watch is simply around the drain and wash away. To give in. Hang it up. Toss in the chips.

And maybe we’ll all laugh at this one day, but I don’t think so. The only laughing you hear is in your head and it is the universe laughing at you and God guffawing. And you know it is all in your head, but it doesn’t matter, because all that matters is using your one good hand to finish washing your son. Because all philosophy aside, you have to clean your son and get out of the shower. So you bend down and you kiss him on his cheek and tell him you love him and you hope for the best because even false hope, even hollow hope is better than no hope at all. Even if hope is laced with anger and tinged with desperation, it is better than no hope at all.

Because if there is no hope.

Hope for me.

Hope for A.

Hope for my family.

Hope for joy.

Hope for hope, for Christ’s sake, if there is no hope, there is nothing and I would simply drink my hemlock and wear a white robe and change my name to Socrates.

Impotence in the face of adversity…and yet…

I grew up as a Preacher’s Son moving from city to city every few years and that in itself is a book I wrote that might see the light of one day.

The one thing I learned – rather harshly – was I could fight my way through anything. Enemies. Obstacles. You name it. I could use my will, my mind, talent, hard work and self-discipline and could carve a niche, find my place, raise myself up from the constant new kid status and defend my insecurities.

In junior high and for a few years in high school, it was basketball. I could channel my anger onto an asphalt court and use hours upon hours tossing a worn ball to a tired hoop to make something of myself. Eventually, I honed my game enough to find acceptance on the playground courts and earn a spot on the roster at two high schools.

When I quit sports, I began playing guitar. Again, if I was frustrated, I could practice and practice and, over time through blistered fingers, write songs, learn scales and, eventually, turn up the distortion and play loud performing in venues. Again, I could channel that anger or frustration constructively, instead of destructively. Music, like basketball, became my catharsis, a place to take anger, frustration and depression and turn it into something else. And, by it, making – in my mind – something of myself.

I used those same ideals through college when I felt challenged academically. I used them at work to climb my way up the ladder. I might fall down – heck I fell down many times –   but I would get up and I would eventually triumph. That was the chip on my shoulder. A chip, but also a motivation, a defense against my seen enemies and my unseen ghosts of the pasts and as a motivation it worked.

Through time, I honed off the hard edges of the chip. Through Grace and Love given to me by God, through lessons taught by my wife and by friends, I wore off many of the jagged edges, but the impetus, the genesis of who I am in regard to this ‘fighter mentality’ was born 30 years ago and had become as much a part of the fabric of my being as the color of my eyes.

Then A was born.

For the first time in my life. Ever. I could not change the situation. I could not work hard enough to replace the part of his chromosome that was missing. I could not outsmart it. I could not outthink it. I could not outwork it (I say that again to emphasize the mere frustration of it) I could not out-anything it. At the time, I felt I could not do anything to help the situation.

Self-defeat. Deflation. Depression. And the main word that surfaced in my vocabulary for the first time in my life:   Impotent.

It was the day that I learned that I had nothing to give in many ways, and, at the same time, I had to give all I had to everything outside of myself to make the situation better.

It was the day that I learned that faith went to unimaginable depths and that talk of fate and destiny take on a different shade of meaning when they cease to be abstract.

It was the day I decided to work harder than ever before at what I could control, but at the same time I had no idea what I controlled anymore.

It was the new beginning.

The framework of my life had been altered irrevocably. I had been transported to not only a different planet, but a different solar system where the very reality of physics and gravity had shifted under my feet.

I suppose it was the day faith died…but faith was reborn…even a seedling in a pile of shit..it was a day when things became more real…Politics, sports and entertainment sank into beyond paltry distraction…everything changed…. Time to get to work…it was time to figure out what I could change….

What God isn’t…the experiential lesson

It is much easier sometimes to define what something isn’t, than what it is. And playing theology can be a dangerous game if one isn’t careful. The older I get, the more I experience, I tend to agree with the great preacher and writer Frederick Buechner who said something to the effect that he hopes that God is more amused at our attempts at theology, than irritated.

With that said, I have discovered what God isn’t. He isn’t Harry Potter. You can’t summon Him. He doesn’t answer prayer, even relentless prayer, with a wave of a wand and fix everything. As C.S. Lewis stated, we pray not to change God, but to change us. That is true and illuminating, but is also harsh.

There is nothing wrong with praying that your child will learn to talk. To walk. To take care of themselves. But I have learned as much as I pray for them to be changed and my situation to be changed, I have to pray for myself to change. To change my perspective, to change my patience and my behavior.

That is the one thing I can try to try to control. It is pivotal to my very existence. It is a shame that after 40 years on the planet and reading tons of books on spirituality and religion and tossing about the big names like Tillich, I am only now learning this and yet somehow it had been in front of me the entire time, yet I had overlooked it. Experience trumps philosophy and practice beats pontification…

Brave New World

I have mentioned before, everything has changed. Don’t despair. You will make it. Everything is not lost, but everything has changed. How you eat. When you sleep. If you sleep. How you vacation. Your job. Your priorities. Everything.

An example is the familiar cookout. Old friends coming together over drinks. The jokes used and reused are still funny, but comfortable and comforting, like a pair of old slippers. The thick plumes of charcoal smoke shooting from grills. Children laughing and splashing in the pool. You can find yourself sinking back into your old life.

And you might try it once, but, ultimately you can’t go again without taking your new self with you.

You can’t go, because you can’t enjoy yourself. You find it harder to relate. The base of sharing is nil.

When your 8-year-old is not toilet trained. When you have to keep him strapped in a wheelchair so he won’t strike out or flail at another kid. When you have to constantly monitor him so he won’t hit his brother for the 1,000th time and you have to counsel that brother when he says he hates his brother because he has special needs, well, that makes it hard to hold your solo cup and nibble at your burger and engage in talk on football, or work or join in the last discussion on technology or pop culture.

Your world is not completely centered around your special needs child, but it is affected. Easy jocularity, complaints of having to change a one-year-old diapers and hearing about how someone loves Ricky Gervais (despite his disdain and condescension of the special needs population), makes it hard to engage or relax. You feel the ebb and flow of the conversation float over you and see yourself stuck on a sand spit watching it all. You can still fake a laugh, extend a hand and grab a cold one, but it is all a joke. And not a funny one. Because the joke is the event when everything with your child seems so terrible and out of place and the joke is how you feel inside which has the capacity to make you feel like a joke.

Only at the end of the night, when you are home on the couch and your family is in bed and the house is quiet can you relax. With the sound of stale laughter still in your ears, you swear to never do that again as you reach for solace in the bottom of a bottle.