Kohl and the Gang

Well hello there, esteemed ladies and gentlemen of the 115th U.S. Congress. My name is Kohler Henson Chrestman. No, I’m not related to the toilet, sink and urinal magnate. Kohler is my mommy’s maiden name. I go by Kohl.  I wanted to introduce myself because every once in awhile your world and my world intersect and you all are in a position to make decisions that have a direct impact on my life, so I feel the need to express a few of my concerns with you. This is one of those times.

So bear with me.

Let’s see, a little bit about me.  I just turned five last week, I live in New Orleans, Louisiana, and I am excited that it is currently Mardi Gras season here.  I am unlike a lot of five year olds in a few ways.  One, I have a unique taste in music.  I prefer alt rock to the B.S. kids my age usually listen to.  Give me Pearl Jam, Nirvana and Beck over that Raffi hack.  My favorite song is “Inside Out” by Spoon.  It plays at my house, on average, about 5,482 times per day.  Second, I probably know more curse words than most five year olds. Thanks mommy and daddy.

Still another way I am different is I have had a lot of really hard experiences.  My parents say I have gone through more in five years than most people should ever have to go through in their entire lives.

You see, when I was born, I hurt my brain. As I was touching down here on planet Earth, my brain didn’t get enough blood and oxygen, and it was damaged.  Because of my brain injury, I have some issues.

I spent the first month of my life in the hospital.  I had a bunch of tubes in my nose and throat, and there were lots of machines that would beep all day and night. My mommy and daddy were really sad at first because they were not sure if I would make it.  But I pulled through and, after a couple of weeks, I got those tubes removed and started improving. Finally, after a few days, my mommy got to hold me.  This was awesome.  Also, my daddy finally got to hold me in the Heisman pose, something he was talking about constantly before.  He is kind of weird, but I still love him.

It was awesome to finally go home.  We live in a really cool part of New Orleans right across from City Park.  One thing I didn’t like about having been relinquished into the custody of these mommy and daddy characters, however, is that they kept squirting this nasty stuff from a syringe in my mouth.  And they did it twice a day.

Apparently it was to control my seizures.  I tried to voice my objections over this nonsense by crying, fussing (it was pretty much all I knew how to do at the time) and essentially refusing to take it.  Yet somehow they still got it in.  Did I mention it tastes like crap?

Anyway, more drastic measures were in order, so after about eight months I just said “screw it” and simply did not allow anything in my mouth at all.  Unfortunately this also meant food.  And let me tell you, it sucked.  My mommy calls it my “Great Hunger Strike of 2012.”  I stopped growing, I was always hungry, and I only slept for a few hours per night because I was so hungry.

The culmination of my hunger strike occurred in December of 2012, just before my first birthday.  Again, I had gone several months without sleeping and barely eating.  This was hard on my mommy and daddy, but particularly on my mommy.  I am no stranger to having seizures, but one morning my mommy got so stressed out that she had a big seizure of her own.

She ended up being okay, and at first we thought it was what is called a “Psychogenic Non-Epileptic Seizure,” or PNES.  Once daddy realized that mommy was okay, he kept telling everyone that mommy “had a big PNES this morning.”  People would roll their eyes at daddy, but daddy kept laughing and laughing.  He thought it was hilarious.  Daddy is kind of a dork, but I love him.

A few months later, I got a surgery where the doctors put a tube in my stomach so they could feed me and give me my medicine. This took some getting used to at first.  They would feed me and give me medicine, and it would go directly in my stomach.  I wasn’t sure what to do with it, so I vomited.  A lot.  At least one full feed per day.  My best friend at the time was Floyd the Frog who would sing and dance to me several thousand times a day.  His one hit, “Singing in the Rain,” would oftentimes be the only thing to calm me down when I got upset.  Well, since Floyd was always around, he frequently found himself  in my direct line of fire, so I would vomit on him.  Thank God he had his umbrella and he was wearing his raincoat!

In any event, because of my vomiting, I had to go back to the hospital for another surgery. This time they wrapped the top of my stomach so that I can’t vomit anymore.   While it stopped the vomiting, it made me really uncomfortable.  It made me gag and retch throughout the day.  There were times where I couldn’t even breathe for a few seconds. It would take over another year and more surgeries before my problems were under control. I had to have six surgeries before I even turned two.  Before I would go in for any of my surgeries, I would frequently hear people ask my daddy what surgery I was having. Daddy would tell them I was having a “penile reduction.”  I don’t know what that is, but daddy kept laughing and explained that “it” was causing low back pain and balance issues.  Like I said, he is a dork.

Thankfully, I have not had to have a surgery in a few years, but my mommy and daddy still bring me to the doctor all the time. Every week, I also see occupational therapists, physical therapists, speech therapists and, my favorite, music therapists.  I also have been trying a different kind of therapy called the Anat Baniel Method that my parents pay exorbitant amounts of money out of pocket for because insurance does not cover it.  But it is helping to “wake up” my brain which is important.

At school, I have lots of friends.  Even though I can’t speak yet, I won an award last October for being a good “communicator” and teaching different ways to communicate. I am learning to communicate by nodding my head yes and no to questions.  This is a game-changer because I can now help my mommy and daddy know what I need. They recently learned that, when I grow up, I want to be a rock star, but I have no interest in being a fireman or being a daddy.  To be sure, the rock star life requires everything of you, and fighting fires or having kids are not exactly consistent with the rock star lifestyle.  Besides, public service and fathering children are so not rock n roll.

So, why do I give you all these details of my life?  If you have made it this far, you may have noticed a couple of things other than the fact that my daddy likes to make penis jokes.

First, I have A LOT of medical needs, and I will for a long time.  I have been in and out of the hospital and have a lot of doctor and therapy appointments.  Second, I have a lot of special needs when it comes to my education.  Other than my mommy and daddy, I have a whole team of teachers and therapists that work tirelessly to make sure I get what I need and develop into the highly-intelligent person that many loving people can see despite my disabilities.

Now, trust me, I can think of 1,000 other things I would rather do than discuss politics. But every once in awhile politicians like you all take on topics that have a direct impact on my life, and I have to speak my mind so you don’t forget about me as you go about the critical task of forming our nation’s laws.

So here goes.

Okay, the healthcare law.  Obamacare, Affordable Care Act, whatever the the heck it is called. I’m not even going to discuss whether it should be repealed or not because (1) I am five and (2) it is beside the point.  What I can tell you is that while health insurance is really important to everyone, it is SUPER important to me. My mommy likes to say I am a “frequent flyer” of the healthcare system. Here is what I want you to keep in mind:

1. If you let insurance companies set a spending cap on people, it will affect me.  It will affect millions of kids like me.  This is because we would likely hit that cap pretty quickly.  And once we do, we’re screwed, and my mommy and daddy will have to pay out of pocket for my healthcare.  That’s B.S. My mommy and daddy both have good jobs and still can’t afford it. Don’t let this happen.
2. Likewise, if you let insurance companies deny or price out people because of “preexisting conditions,” it will affect me.  It will affect millions of kids like me.  By now you know I have a preexisting condition.  Anyone who would deny me health insurance because of it should be drawn and quartered.  Again, don’t let it happen.
3. Finally, it is important that my parents be allowed to keep me on their policy as long as possible.  Right now, I can do that until I am 26.  Like I mentioned before, I will probably have specific medical needs for a long time.  This topic actually causes my mommy and daddy mind-numbing anxiety because all-too-often kids like me don’t even make it to age 26.  If you ask me, they don’t have anything to worry about because I plan on sticking around.  And when I do, I expect that I will be allowed to continue being insured.  If I am kicked off their policy and have to get my own healthcare, it will be disastrous (see point #2). Again don’t let it happen

Alright, I am almost done.  Just one more thing to cover, and that is my education.  Like healthcare, I don’t think I have to explain to you how important this is to me.  There are federal laws that make sure millions of kids like me get the education they need and deserve.  Those laws are very important. Before they were enacted, that was not the case, and kids like me were left out in the cold.  I don’t plan on being left out in the cold.  I hate cold weather. That’s one of the many reasons I live in New Orleans.

The nominee to be a leader of  the Education Department is a lady named Betsy Devos. She looks like a nice lady. But like most people who have the privilege of healthy children, while she may appreciate my particular situation, she is far from having a full understanding of it and what my educational needs are.  And she doesn’t really even know much of anything about the federal laws in place that ensure I get an appropriate education.

In short, I don’t think she is qualified to be the leader of education in these United States. I mean, my parents aren’t really qualified to be my parents either, but I had no choice in that matter. You do. If you aren’t on the committee that she testified in front of, then I urge you to go back and watch that testimony.

But, no offense, you politicians are really long-winded, and a lot of you like to hear yourselves talk, and that hearing was like three hours. That’s okay if you don’t want to spare three hours to listen to the hearing, but at least spare eight minutes and listen to this part. It scared me, and it was enough to convince me that Ms. Devos is not qualified for this position:

Okay, that is a wrap.

In many ways, I am just a typical five year old.  But I need quite a bit of extra tender love and care.  I am a highly-intelligent person, but my brain has not quite figured out how to express that, and it is hard to see my intelligence at first glance.

Here is the cool part.  I am only just beginning to figure out how to pierce through my veil of disability, and more and more people are realizing how bright and special of a little guy I am.  I don’t want to sound cocky, but I adopted my daddy’s shameless and baseless self confidence, so I can’t help it.

But I need your help.  I really, really need to have fair and appropriate access to healthcare and education that will allow me to continue to grow from the handsome, five-year-old dude I am now to a productive member of society.  That’s where you can help.  Please ensure that the protections I mentioned remain in place if you guys decide to repeal the healthcare law.  And please vote no to confirming Betsy Devos as the Secretary of Education.

It’s not asking much really.  And if you do it, one day I will be able to thank you myself.

***

If you know Kohl or someone like him or if you care about these issues, please share this.  Please also call your representatives in Congress to voice your concerns.  Getting angry about things does nothing.  Take action.

I remember sitting with my wife Sarah in the neurologist’s office when my son Kohl was a baby, shortly after being discharged from the NICU.  It was the first time after Kohl’s nightmarish first days, born with global brain damage, that we caught a glimmer of hope.  That hope came in the form of learning about the concept of brain plasticity, or the brain’s ability to change itself over time.   Children, our neurologist told us, have particularly plastic brains as they undergo extremely rapid change during the first years of life.

This is true for all children, but it is something we were finally able to hang our hats on because the concept becomes very relevant when the brain loses function in the event of an injury.  What this meant for Kohl, we reasoned, was that those portions of his brain that were left unscathed have the ability to adapt and compensate for lost function.  This was hope.  This represented possibilities. This was a little slice of gold.

And yet, we felt as if we were in a race against time because it was suggested, or at least I interpreted, that the child’s brain has this plasticity for about five years.   So we essentially had five years to maximize Kohl’s development.  It was a shot of hope, but washed down with a gallon of mind-numbing anxiety.

So I find myself now, on the eve of Kohl’s fifth birthday, reflecting on that day and my creation of that artificial, anxiety-riddled five-year window. I have two observations both based in neuroscience:

One, there is no five-year window.

Now, this may come as a shock to those who know me best, but I am not, in fact, a neuroscientist.  I am a 36-year old dude who still picks his nose, routinely makes jokes about dicks and farts and generally has the maturity level and intellect of a seven-year-old. But I  have learned a few things about neuroscience, a relatively new field that is constantly changing.   We are only beginning to learn about the extent to which the brain can change itself.  But one fact that does not appear to be in dispute is that our brains retain their plasticity throughout our whole lives.

At least one neuroscientist, who Sarah and I have gotten to meet and hear speak, has opined that “[w]e are in the early stages of a Brain Plasticity Revolution … in which the brain’s machinery is being continuously rewired and functionally revised, substantially under your control, throughout the course of your life.” (Soft Wired by Dr. Michael Merzenich, PHd, p. 2).  In other words, our brains retain the ability to “re-wire” not just in early childhood, but throughout our entire lives, and it does so based on experiences we have that are within our control.

The extent to which the brain rewires itself and how does not yet seem crystal clear, but the basic premise that our brains never lose this ability was an enormous relief to us and took some of the edge off our sense of urgency to maximize Kohl’s development.

The second and perhaps more important point is that it is not just about Kohl’s development.  Well-meaning people frequently tell Sarah and me how we are such “good parents” and how well we are doing with Kohl.  These comments have motivated and lifted us up on bad days and we always appreciate them and are flattered to hear them.  But they are just not entirely true.   We have done nothing different or “better” than what I am 100 percent sure any of our friends or other family members would do if placed in the same situation.

Moreover,  I don’t even know what being a good parent means anyway, but there are plenty of times that I do not feel like one.  I have committed many transgressions that probably would not be considered in line with good parenting, and I have my share of regrets.

I have been more focused on fixing Kohl and making him normal when I should be just enjoying him.  All too often, I let the frustration of the daily care of a brain-damaged child get to me.  I have lost my temper far too often and lashed out against those I love the most, including Kohl.  I have assigned blame where there is no blame to assign.  I am not fully healed from the wounds inflicted on me by Kohl’s birth.  I do not mean for that to be an excuse or to paint myself  as a victim.  I just mean that I too, am a work in progress.

And as I sit here on the eve of Kohl’s fifth birthday, this milestone no longer feels like a deadline.  It is only the beginning.

I remember it vividly.

‘Twas the night before Christmas many years ago.  I had just been evicted from the bed that my sisters and I traditionally shared on Christmas Eve.  No, not in that way, you sick ass hole.  We do live in the south, but it wasn’t like that.  My sisters and I were all close, and we would bundle up together in the same bed on that one night per year, read Christmas stories, fall asleep, wake up, read some more stories then sprint downstairs to see Santa’s bounty.

On this particular night, however, the combination of my detailed questioning on Santa’s exact arrival time, whether that noise we just heard on the roof was a reindeer and my incessant wiggle-worming were too much for them to handle.  I was out.

So off I went to my own bed, finally settling into a restless sleep in eager anticipation of that jolly old fellow’s arrival.  Some time later, just down the stairs there arose such a clatter.  I sprang from my bed to see what was the matter.  To the top of the stairs I flew in a puff at the sound of our stockings all being stuffed.  Then all of a sudden, there came a loud banging sound.  One of those stockings had just hit the ground.

“Goddamnit, Mary Ann,” someone immediately yelled.

This gave me pause. The fact that Santa would know my mom’s name is understandable.  I mean, the dude is able to service like 6 billion people in one night, and he’s not exactly svelt, so he’s pretty fucking magical if you ask me.  Furthermore, it made sense that my mom was even downstairs helping him because as magical as Santa is, I’m sure he needs a few helping hands along the way.  And while I didn’t like this motherfucker yelling at my mom like that, I could nevertheless understand it because this was his most stressful night. Even Santa loses his patience sometimes.

But that voice sounded eerily familiar. It was the indistinguishable nasally, Arkansas twang of my father – Reuben Leonard Chrestman, III. The Reubenator. Kanga-Reuben.  Reub-a-licious.  Reuballz.  That’s what I could not get past.

And so the night that had been so magical for me up to that point became a profound disappointment.  It was just a difficult thing for me to wrap my 18-year-old head around at that time.

But, like everyone else, I would eventually come to accept this black eye of the Christmas season, and I managed to enjoy the next 17 Christmases, even if they were a little less magical.

Until today.

It began like any other Saturday.  I was awoken by my two-year-old daughter Amelia’s musings that waiver between conversations with herself on topics like boogers and her nipples to singing songs of her own creation like “Twinkle Twinkle Little Star” sung to the melody of “Are you Sleeping.”

I dutifully made my son Kohl’s G-tube blend as my wife Sarah eventually got herself out of bed to provide a helping hand. On this morning, we were to bring the kids to meet “Santa Claus.”  We were supposed to be there at 9:30 a.m.  We would not arrive at 9:30 a.m.  Ironically, the only person that still gives a shit about showing up to stuff like that on time – Sarah – is almost always the cause for us being late.  So we eventually arrived close to an hour later.

This was a lovely event.  There was face painting, there was ginger bread house making, and there were plenty of kids having a good time.  Santa was in attendance, but other than his not being the most jolly Santa I have ever seen, something seemed off with him:

I moved on with my day and began helping Kohl make his gingerbread house.  Yet, every time I passed in close proximity to this Santa, I couldn’t help but notice him muttering “Kill me,” under his breath with alarming frequency.  This was indeed strange and probably a little unsettling for Santa to be saying that  especially with so many kids around.  But then again, I have never had to dress up like Santa and don’t have any familiarity with the suckery of having a bunch of random children sitting on my lap and flapping their gums about what they want and shit.  So I gave him the benefit of the doubt.

Yet another incident occurred when my mom had just returned from having her picture taken with Santa.  My mom reported that upon sitting on his lap, Santa Claus pinched her left butt cheek and remarked, “nice ass.”  Okay, I thought.  This was so wildly inappropriate.  I started to report this Santa, but my mom didn’t seem to mind, and I’m sure some other Santa in some mall somewhere has done much worse.  So I let that go as well.

Then it came time for our pictures with him.  First, my sister Mary Beth and I took some pics with him and paid homage to our oldest sister Allison who we lost last year.

Then, it was time for a photo with the wife and kids, so I plopped myself on one side of his lap with Kohl while Sarah and Amelia plopped themselves on the other side.

“Everyone say ‘foreskin,'” Santa remarked immediately before the picture was taken.

As we walked away, I was uneasy.  That voice, I thought to myself, why is that voice so familiar.

I continued decorating the gingerbread house which turned out to be the longest, most painstaking decorating process of all time. But it was still gnawing away at me.  I had to get up and clear my head, so I stood up and walked to the library to think.

Foreskin?  Who says that before a picture is taken, I thought.  That is so weird, and yet so familiar.  I feel like I have heard that thousands of times before.  I may have even heard it before literally every family picture was taken growing up.

 Waaaaaaaiiiiiiiiitttttt aaaaaaaaaaa second…

Then, just as I opened the door to the library, there was Santa Claus, de-robed:

And immediately all the idiosyncratic behaviors were forgiven.  Santa is real, and he is my father – Reuben Leonard Chrestman, III, a 71-year old radiologist from Helena, Arkansas who looks vaguely like former Israeli Prime Minister Ariel Sharon.  God he’s good.  Little did I know all those years ago how close the truth I was.

This Christmas and all Christmases to come will now be just a little more magical.