Writing and Pooping

You know that feeling of levity and satisfaction that comes immediately after taking a huge dump?

Thats a bit like how I felt immediately after writing about last week’s trip to Disney World. I felt lighter, calmer and more in tune with the here and now. We went for a walk in the park – Amelia on her tricycle, Kohl in his wheelchair and Sarah in her yoga pants. Sarah started doing air squats, and I didn’t critique her form, invade her personal space or yell “there is no offseason.” Amelia didn’t fall off her tricycle or get PTSD from getting one of her feet wet while slipping into a puddle as she did a couple weeks earlier. And I was just there, enjoying a simple moment with my crew.

It struck me that it had been over a year since I had bothered to post anything on this blog. It had probably been just as long that I had bothered to take the metaphorical pen to paper and attempt to make sense of the dizzying array of thoughts and emotions that frequently plague my brain waves.

But I was driven to do so last week as I – a grown ass man of 38 years – found myself in tears leaving the world’s happiest place. Wondering what was wrong with me and whether I had any testosterone left in my body, I began to poop out some thoughts which, in turn, helped me explain and make sense of these emotions. I have never been comfortable talking about “feelings,” preferring to make awkward jokes about wieners or boobies in an attempt to inject levity into tough situations and conversations as a form of avoidance.

I’ve realized, however, that some things are unavoidable. Writing, I suppose, is my way of dealing with difficult thoughts and emotions. And there’s no way around it – they have to be dealt with, just as those turds taking up residence in your GI system eventually have to be evacuated.

I’ve realized that we parents of children that have severe challenges expend so much time and energy caring for them, and self care is, at best, relegated down the priority list or at worst, doesn’t make onto the list at all.

And as Kohl giggled, Amelia pedaled and Sarah squatted in that wonderful little afternoon last week in the park, I realized that I need this.

After ending my public writing hiatus last week, I was encouraged by a few to keep it up. For reasons that continue to elude my understanding, some actually read this bullshit and others seem to enjoy it and derive some value from it. So if it helps you, dear reader, I am pleased and that is an added bonus. If it doesn’t help you, then fuck you, it helps me.



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On tantrums and magic: Disney World

As our plane touched down in Orlando this past Monday, I turned to my neighboring passenger.

“We’re here, Amelia!” I announced in an attempt to generate the same enthusiasm and excitement I was feeling.

As Amelia took in the non-descript tarmac and neighboring planes outside her window, however, her four year old brain seemed to be processing the fact that neither Mickey Mouse nor Queen Elsa were anywhere in sight.

“Uhhh. No we’re not,” she retorted, having realized that we didn’t land directly in the Magic Kingdom.

One row up sat Kohl who, like Amelia, was on his maiden voyage to the happiest place on Earth.

“Kohl, we’re in Disney,” I said.

Kohl was born seven years ago with severe, global brain damage, so he only has a few words in his arsenal that he somewhat dickishly uses at times of his choosing. This was not one of those times.

Instead, his sister spoke for him, repeating her earlier refrain, this time with more vigor.

“No we are NOT in Disney,” she said.

We then deplaned and began our trek to the Magic Express.

“Is this in a different fucking zip code,” asked Reuben whose 73-year-old legs were getting tired of walking already – a foreboding sign on a trip that would feature miles of walking in the days ahead.

A few minutes later, however, while finally aboard the magical express and en route to our hotel, those initial frustrations started to dissipate. The scowl that so frequently decorates Reuben’s face began to give way to a quasi-smile and the old timer started cracking some jokes. Kohl started laughing and smiling. Amelia started playing with her Aunt Mary Beth before finally passing out for a nap.

The ensuing days would follow that same pattern – moments of magic nestled between epic meltdowns … from both kids and adults.

Reuben and Mary Ann, being very set in their ways, would get understandably upset when a reservation made months ago for a character breakfast still resulted in a 15-minute wait.

“What’s the point of making a fucking reservation then,” Reuben would ask rhetorically.

But then they would smile like children when they got their pictures taken with Pluto and Daisy.

One minute, Amelia would go on a hanger-fueled rampage and make mean comments.

“Disney is no longer fun, I want to go home,” she would say on day three of five.

The next minute (usually after feasting on some Mac and Cheese), she would sprint around the patterned carpets of the hotel, light up with sheer joy at meeting her favorite princess or tell us that her favorite part of the trip was getting to spend it with her family which she “loves with all of [her] heart.”

The moments of magic also featured a handful of surprises.

Reuben is a medical doctor and an expert in radiology. He is also a WWII buff who knows more about military aviation of that era than anyone I know. He threw us all a curve ball though when he demonstrated a love and an encyclopedic knowledge of Mary Poppins. I don’t know who was more surprised – his family – or our lovely, British waitress to whom Reuben slung an array of Poppins factoids, assuming that because she hailed from the UK, she too shared his enthusiasm for the world’s favorite nanny.

Then at an exorbitantly expensive “Princess lunch” at Epcot’s Norway, Amelia was understandably aglow and star struck when getting to meet Cinderella, Snow White and Ariel. But it was Kohl who surprised us all when he flashed the biggest, most tear-inducing smile for Aurora – Sleeping Beauty.

The moment filled us all with momentary tears of joy, and I think it caught Aurora herself a little off guard.

When the trip came to a close, we found ourselves once again in the Magic Express, headed back to the airport. And I – a grown man of 38 years – found myself in tears.

What the hell is wrong with me, I wondered.

For one, being at Disney was totally nostalgic. The sights and even the smells immediately transported me back to a happy childhood in which I wanted for nothing.

This, in turn, brought brief moments of intense sadness because being at Disney reminded me of a much easier and simpler time. Allison, my big sister, who we spent so many special moments here with, is no longer with us. Cancer took her away from us way too early. There are moments when her absence from this world stings especially bad, and this was one of them. She would have LOVED this trip.

Reuben and Mary Ann – my parents – who undoubtedly paid a fortune bringing us here year after year, are now much older and cannot do nearly as much as they once could. Having witnessed the deep grief of friends that have endured losing a parent made me worry about my own peeps. Opportunities like this trip are so unique and may never happen again.

And finally, having a severely disabled child in a place where thousands of healthy, able-bodied kids are having the time of their lives hurts. Watching their experiences compared to Kohl’s was another reminder of how many of childhood’s joyous moments that Kohl has been robbed of.

But then those thoughts thankfully dissipate and are supplanted with better ones. Like the fact that Allison was undoubtedly smiling down on us all reliving our childhoods as Kohl and Amelia take it all in for the first time. And Reuben and Mary Ann had their own fun at their own slow and elderly pace. As for whether this will happen again, I really hope so, but in the meantime it was just nice to have them here. And that’s enough.

Lastly, from Kohl’s perspective (the only one that matters), he hasn’t been robbed of anything. He experienced this trip in his own way, and it was overwhelmingly positive. From the facilities to the attention to detail of all of Disney’s “cast members,” in accommodating handicapped guests, Disney World now clearly holds a special place in Kohl’s heart even though he may not yet be able to express that to us. And despite the early challenges of his and his sister’s childhood, I want them to experience as much magic as possible. Because that’s what it’s all about.

Until next year, Mickey.



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6 Things My Son Has Taught Me

Dear Kohl,

Well Happy 6th Birthday, fuck head.

Rather than spend every second of quality time I can with you before you pass out for the night, I have chosen to tuck myself away in the other room and write to you on the internet. I even made my letter a cheesy, numerical list that seems to be the rage these days.

But even though I tell you I love you and that I’m proud of you every night as I place you in bed, it’s important for me to occasionally step back and really dig into what you mean to me.

It is no secret that when we drafted you onto our team with our first round pick six years ago, the manner in which you arrived was, to say the least, a shock which would shake us to our core and would set our lives on a path we would never have imagined.

Yeah, I know it’s a lame cliche, but even though, as your parents, we are supposed to be teaching you shit, you have taught us so much more.

So as we celebrate your sixth year today, here are six things you have taught me (yeah I know, I should take a knee and punch myself in the face):

1. Power of music

Even though you have learned how to nod your head in response to questions, and you can say words like “yeah” or “no” and your own version of “daddy,” we are obviously a little limited in what we can communicate with each other using words.

But music is its own language and if one’s taste is akin to one’s proficiency, then I would say you’re fluent as fuuuuuuuuck.

Now I will admit – I was not completely heartbroken when you got over your infatuation with Floyd the Frog whose one hit wonder “Singing in the Rain” could be heard in the corridors of Chateau du Chrestman upwards of 6,000 times per day.

Likewise, I was a bit relieved that you have broadened your horizons from Spoon’s “Inside Out” which used to be the only thing that would calm you down when you acted like a dick. It’s a great song, but “too much of a good thing” is real.

But your varied, diverse and consistently good taste in music (with a bias towards the 90s grunge scene) never ceases to amaze me. One need look no further than this photo to notice your discerning musical palate:

I will never stop being fascinated with how much you love music, and I appreciate your being my lone fan here when I have my unsolicited jam sessions on guitar or drums. The way you are moved by music moves me and sometimes even brings a tear to my eye.

As our good friends at Drew Tunes say: “When there are no words, music speaks.”

2. Empathy

Ok I admit. Having empathy for someone else’s life experience comes much more naturally to your mom than for me. Not to get all Freudian and shit but I think it has to do with the fact that she is the oldest child and I was the youngest. But as I look back on my life before you arrived, I was self-centered on an almost comical level.

You are a genuinely happy little guy for many reasons which brings me endless joy. You know no other life than the one you have. While this brings me comfort, it also causes me some anguish that you are deprived of so many experiences that most kids get.

You have not gotten to play catch with me. You don’t get to chase other kids around on the playground. I don’t get to hear you tell me in words how your day was.

You are also a member of group of society that has been shat on, forgotten about or marginalized for centuries.

But the silver lining, aside from the fact that this doesn’t phase you even a little bit, is that it has made me more empathetic. It has made me less selfish. It has not only made me an enthusiastic if involuntary member of the “special needs” community, it has made me more sensitive and understanding of those who come from segments of the population that have not had the luxury and privilege I have enjoyed.

So, I guess what I am saying is that knowing you has made me a less terrible human. So thanks.

3. Taking nothing for granted

I suppose another silver lining of the profoundly shitty hand you have been dealt is the fact that it is hard to take things for granted.

You grow and learn in your own way and at your own pace. And that’s ok. It has and will continue to be hard for me to accept at times, but it is more than okay. Your smile and laugh are enough to melt the toughest of exteriors. And when you say “daddy” in your own little way, holy shit, son. Gimme some goddamned tissues.

And even though we all call your little sister a dick and make fun of her resting bitch faces …

… we all know we love her, and raising you, I think, has helped me raise her better. It has deepened my appreciation for the unique ways each of you develops.

4. Value of hardship

Before you were here, the things I can remember worrying about were absolutely laughable. While you are the opposite of a “hardship,” your shocking arrival here was not easy. And you know, what does not kill you will only make you less of a pussy.

5. Importance of laughter

Let’s be honest here. I have always been hilarious. I mean, I wasn’t voted 1998’s “wittiest” senior for nothing. And your mom, while falling well short of my comedic genius, is pretty damned funny in her own right.

And whether telling people that your latest surgery was a “penile reduction” or pissing your mom off with yard inflatables…

LEVITY IS A LIFE SAVER

6. How to love

Let’s just put it like this. You have upgraded me in so many ways, but none more important than teaching me how to truly love. How to be with you in each moment and just take you in. There is no more important moment than now. Thanks for continuing to teach me this and so much more.

I love you, my little buddy.



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