Kohl and the Gang

Last week I decided to take on my inner demons.  Instead of doing it like a normal person, however, my strategy was to name them, describe them and then tell them to fuck off.  By bringing them to life, I reasoned, I could eradicate them or at least control their influence on me.

First, I took on “Percy the Perpetually Pissed,” that miserable punk that stays in a perpetual state of being angry at the world.  Percy’s anger sometimes seems reasonable, for example, in the way that he spits fire at those who park in handicapped spaces. But he takes the justifiable anger that one with a handicapped child would feel towards these people far beyond the realm of healthy. Percy’s worst offense is the way he infiltrates my thoughts in certain situations, causing an obsession in me of wanting to “fix” my son and thereby robbing me of those most precious moments I have with him.  For that, I decided to tell Percy to go fuck himself.

The problem with Percy though is that he often does not work alone.  He has a close cousin and partner, Jealous Joffrey who is the Scottie Pippen to Percy’s Michael Jordan as the two make a vicious tag team.

Jealous Joffrey

Joffrey’s world is devoid of joy and full of despair and not just because shares a name with arguably the most despicable character in television history.

Joffrey’s despair stems from his deep conviction that the world has shit on him.  Whereas hatred of mankind is Percy’s strategy, Joffrey’s contempt takes a more passive form: he constantly compares his plight with others and almost always concludes that he has it worse.  Joffrey is jealous of you, and he resents you. Once Joffrey comes to this conclusion, he typically tags his cousin Percy, who comes in spewing hatred.

Back when the wounds of Kohl’s birth were still fresh, Joffrey would often pop up when friends or other acquaintances birthed healthy children.

“Must be nice,” Joffrey would say.

Over time, however, those comments faded into whispers, and now when friends or acquaintances have healthy kids, I experience genuine happiness for them, unfettered by Joffrey’s bullshit.

Yet Joffrey continues to appear in other places.

One parent asks for prayers because their child has a fever.  Another acts as if their child getting tubes put in their ears is some kind of major surgery that everyone needs to hear about.

“Awww, you poor thing,” Joffrey says to these people, rolling his eyes.

He then reminds me that I have a son, born with brain damage, who must take three different seizure medicines every day and has already endured six surgeries, all of which much more severe than the placement of ear tubes.  This reminder is usually Percy’s cue to come in.

“Fuck you and your kid’s flu,” Percy says.

“And get over yourself with the ear tubes.  You don’t know what a major surgery is.  Moreover, you don’t know what real problems are.”

Sometimes I think letting out a little anger is a good thing that makes me feel better, but these kinds of outbursts only make me feel worse.  Joffrey simply does not help.  He constantly causes me to compare my life with others, and parents of healthy children are not his exclusive targets. He has even been known to fire his jealousy at parents of  kids with disabilities that he perceives to be less severe than Kohl’s.

While people will always complain about stupid bullshit that will cause me to roll my eyes, Joffrey’s jealousy causes a degree of spite that is beyond what might be considered reasonable.

The worst part of Joffrey’s antics is that they prevent me from experiencing real joy with my son. Just as Percy’s vitriol creates an obsession with fixing Kohl, robbing me of those moments to just enjoy him, Joffrey’s constant comparisons rob me of those same moments by focusing my energy in the wrong place.  Expending mental energy out of spite for someone else whose problems, in my  estimation, are not as bad as mine n is not just unhelpful – it is harmful.  It focuses my attention on the wrong things and in the wrong places.

So, Joffrey, while Percy is off fucking himself, I will tell you what you can do. You, sir, can go lock yourself in a dark room, maybe put on a dark trench coat and black lipstick and throw on some Radiohead.

Go be miserable by yourself.  I want to hang out with Kohl.

I sometimes hear people talk about the struggle they have with their “inner demons.”  It is a vague concept that warrants exploration.  So, I decided to spend some time exploring my own.

My hope is that in giving my inner demons concrete form, I will either eradicate them completely or at least lessen the influence they continue to exert on my daily affairs. This is my way of shining a light on these roaches that continue to torment me so that I can either squash them completely or at least make them disappear back to the nasty places from whence they came.

(Or maybe I have now just completely lost it).

The exact number of my demons is unknown. I am sure there is a demon that causes me to torment my parents and still another demon that creates in me a sheer and unabashed pleasure in annoying my wife at every turn.  But those are not the ones I am after.

I am after the ones that have taken up unwelcome residence in my thoughts more frequently; the demons that feed off the challenges inherent in raising a severely disabled child.  These are the ones I’m after.

My first demon is Percy the Perpetually Pissed.  Percy has been particularly active the last 12 months or so.  And Percy is an ass hole.

Percy the Perpetually Pissed

It’s not just that his name is Percy that makes him so angry at the world.  It is his nature.  He assails my brain with negative thoughts, he causes eruptions of anger at unexpected and inopportune times and he over reacts to certain circumstances with a vitriol that is vastly disproportionate to what the situation calls for.

When some dip shit without a handicapped tag parks in the handicapped space at Kohl’s school, for example, Percy loses it. He causes me to shake with anger that borders on the uncontrollable.

To be sure, those who choose to disregard the clearly-marked signs indicating that a space is reserved for handicapped persons deserve some form of punishment.  But it should be on a scale of punitive severity ranging from a stern talking to on the light-end to, perhaps, a $500 fine on the more severe end.

Percy, however, would beg to differ.  The man or woman that chooses to park in that  space is doing more than causing an annoying inconvenience; that person’s actions are a personal affront to Percy.  To Percy, a slashing of the offending party’s tires would be the most lenient.  The more severe punishment, reserved for people like the lady who actually gave me attitude after I asked her to move, would be all out assault and battery.  Percy makes me fantasize about a post-apocalyptic world, rife with zombies and devoid of law and order, in which such conduct would be permissible.  An axe to the face, Percy believes, would deliver to these scumbags their just deserts.

Another frequent target of Percy’s scorn is my decision, in early 2015, to attend the Anat Baniel Method practitioner training.  The method is an alternative form of “therapy” that Kohl has used for about two years now.  It aims to harness the brain’s plasticity and ability to form new connections; a concept particularly relevant to children like Kohl whose brains have been damaged.

The work is very expensive, however, and it is often not covered by insurance.  What’s more, there are no practitioners in our area so we have had to travel great distances and spend enormous sums to access it.

Anecdotes abound with children that have had miraculous outcomes as a result of this work.  The term “miraculous” is relative, however, and while we believe we have seen some positive changes in Kohl that we think are a result of the method, I would not use the word “miraculous” to characterize them.

Yet, the needle seems to be moving so I made a somewhat compulsive decision early last year to become a practitioner despite an enormous commitment of time and money.

“Well that was a good decision, dick head” Percy continues to remind me today.

“You have now wasted almost one year of  your time and a whole lot of your money.  You negligently rushed into this training program to learn a method that you are not even sure works, and you are paying a fortune for it.  When you found out the G.I. Bill wouldn’t cover its tuition, you had an opportunity to quit this madness.  But no, you still plunged ahead and have wasted tens of thousands of dollars from a savings account that was supposed to be used for your renovations.  Congratulations! Now take a knee, and punch yourself in the face.”

But Percy’s scorn is not restricted to money alone.

Lately, when I am attempting to sit Kohl up, he sometimes thrusts himself backwards, exhibiting what seems to be very little awareness of himself.  Inasmuch as sitting up unassisted is a goal that remains a focus, this has been a frustrating development.

“See!  Thousands upon thousands of dollars later, and he still isn’t even sitting up.  He is not learning a thing,” Percy says.

But Percy’s anger and hatred for mankind are blinding.

What I forget when I listen to Percy’s bullshit is that I am missing the point.  In those moments, Percy makes me disregard what Kohl wants or what he may be thinking.  He makes me forget to just be with him.  He sends me on a myopic and fruitless quest to get Kohl to do things he cannot yet do.  To fix Kohl.  And when I do this, I forget that the best thing I can do for Kohl is just love him.

So, I have a message for Percy:

First off, Percy, your name is stupid.  Second, your influence has nearly caused me to be arrested for assault and battery of some ass hole that parked in a handicapped space. As bad as those two things are, I can get past them.

What I can’t get past is this: allowing you to shape my thoughts and actions has, too often, caused me to miss out on opportunities to truly connect with my son.  You have prevented me from going to that magical place where the traumas of the past and the concerns of the future do not exist.  It is a place where miracles really do happen. Listening to you has prevented me from going there with Kohl.  And the more I go there with him, the more I can help him.

And THAT, my little angry friend, is an unforgivable transgression.  So, Percy, I will tell you something I should have told you long ago: FUCK OFF.

Dear Kohl,

I think you’re still sleeping right now, so I thought I’d get a few things off my chest that I have been meaning to tell you.  And my sincere hope is that one day you will be able to read this.

But you see that’s just it.  I have a lot of hopes for you.  I hope that you will be able to read this some day.  I hope that you will be able to walk, talk, work, love, laugh and lead an independent life. In the short term, I hope that you roll, sit up unassisted and start communicating.  These are just a few of the hopes I have for you.

Many of my waking hours (and even some of my sleeping ones) are filled with figuring out ways I can help you do those things.  But having these hopes have become so deeply entrenched in me that they are an obsession. They have overtaken me to the point that I miss things.

Oftentimes, I am so focused on fixing your problems that I sometimes miss the tiny little miracles that occur in front of my face every day.

Whenever I bring your baby sister Amelia to the park, I sometimes feel sad that you can’t yet do what she does. No running around, no sliding, no swinging.  I once tried to place you in one of the swings there that is quasi-adaptable, but you almost fell out and you looked miserable. In my mindless quest to ensure, to the maximum extent possible, you have as many experiences as “typical” kids, I overlook the fact that maybe you just don’t want to do some of those things.  In fact, I think you’re perfectly content just staying home and listening to your music than going to the park.  Maybe you’re emo.  Maybe you want to put on black lipstick. Who knows? The point is I have not been paying attention.

Sometimes, I get so angry and frustrated during the most mundane of daily tasks. As I toil through the additional challenges of bath time or getting you dressed, for example, outbursts occasionally rear their ugly faces.  My mind focuses on the wrong things.

I think about the time you were once called the developmental equivalent of an infant at your first IEP meeting.  I think about how much time we have spent on therapies.  I think about the enormous personal and financial sacrifices we made last year when I made a somewhat compulsive decision to learn a method of working with you that harnesses your brain’s ability to re-wire itself.  And you are not even sitting up yet.  You have not yet discovered your arms so you can help me dress you, I think to myself.

These are horribly, self-absorbed thoughts, and I wish I did not have them.  But I do.  And when I do, I miss things. I forget things.

I forget that while you may not be sitting up without my assistance yet, you’re starting to love this rolling thing and can almost do that by yourself.

I forget about the fact that you are starting to learn how to nod your head “yes” or “no” to questions.  That  has been a total game changer for us and taught us even more about you, including your aspirations to one day be a rock star.

I forget about the fact that you recently started laughing when your mama tickles you, something you had never seemed to respond to before.

I forget about the fact that you and I have started laughing at fart noises together; a male bonding ritual as old as time.

I get so angry and frustrated sometimes when you fall short of doing the things that I believe you are supposed to be doing according to my self-imposed timeline.  Aside from forgetting about the things you are doing, these frustrations are manifestations of my unintentional and subconscious desire to make you “normal.”

I thought about something I did a few years ago that gave me pause and caused me to reflect on that word “normal.”

Remember back in 2014 when your Nana brought over that nice little Christmas plate?  It came with a marker that is used to write a message that Santa could read after he finished scarfing down those cookies.

Well, I drew a huge penis  on it. I did this without thinking about it.  I did this without realizing that the marker was permanent and not erasable.

Before we were finally able to scrub off my “drawing,” your Nana got very upset with me.

“You are 34 years old,” she reminded me.  “That’s just weird.  You need therapy.”

I am not sure why I reflected on that story recently or even why I tell you now, except to remind myself that the category of “normal,” whatever that means, is something I do not fit in.  And my epiphany was that if I am not even close to fitting in that category, I should not be trying to force you in it either.  After all, you are my son and your chances at normalcy, even if you were not born with brain damage, were slim to begin with.

So I guess I will conclude by saying this.  I am deeply sorry for the times where, under the guise of helping you or trying to make it so that you have the opportunity to live a full and rich life, I have really just been trying to make you normal.  I am even more sorry that sometimes I let my emotions and frustrations get the best of me, and I lash out when I am trying too hard to “fix” you.

The truth is, even though we have been together for five years now, I am just getting to know you.  I sense that your true self is only beginning to emerge from beneath the veneer of your many challenges.  Maybe that is part of the magic of being your parent.  A magic that parents of “healthy” or “neurotypical” or “normal” kids do not get to experience.

No, son, you don’t need fixing.  You are perfect the way you are, and I am so excited to continue to find out who you are.

If anyone needs fixing, it’s me.