A Long Awaited Smile

This smile bruh. This smile is my everything. I hadn’t seen it yet in 2022. Until today. To put this in its proper context, I have to go back about a month and take you on a tour of a few scenes that I think exemplify the hardest parts of raising a kid like Kohl. This is long winded so if you skip it, no hard feelings. But if you are a glutton for punishment and really want to know what it’s like, let’s go.
It’s Sarah’s birthday. We are having dinner at Cafe Degas. We are eating steak, drinking wine, catching up with friends we unexpectedly ran into. We need this so badly. Nights like this are so important yet occur all too infrequently. Unfortunately, the magic of the evening quickly fades when we find ourselves in the ER with Kohl. Earlier, he fell off the bed and hit his two front teeth, causing them to “impact” meaning they have been pushed back into his gums. Kohl is not otherwise hurt or in pain, and this is pretty minor especially compared to other trips we’ve made to this same ER. Still we spend most of the night there before finally being discharged home.
May 20: We have an emergency consultation with the dentist. She explains the options which include root canals and/or braces none of which are appropriate for a severely disabled child like Kohl. They will almost certainly have to be extracted in the not-too-distant future but we can wait and see for now. This leaves Sarah in tears. ”Apparently, I can handle seizures, but this puts me over the edge,” she says. As is my custom, I attempt to deflect with humor. “We could get him two gold front teeth – one with a ’K’ and one with ‘C’,” I say. “He’ll be like a tiny Lil Wayne,” I add. Sarah gives me a courtesy laugh while immediately shooting down my plan. This shit really does suck.
May 21: We have a previously-scheduled phone consultation with our orthopedist. It is over the phone because he is in Texas. He has done a minimally-invasive procedure on Kohl a couple of times that has been the only thing that has helped with his severe muscle spasticity. He is one of the only ones that does this procedure which is why we have traveled to Texas to get it. The procedure, while effective, has not resulted in permanent change though and because Kohl does not stand, walk or bear weight, his left hip has slowly come out of socket. Fixing that problem requires major surgery. It is now time for Kohl to have that surgery, our orthopedist explains. There will be at least five days in the hospital. There will be months of recovery. But it is time. We hang up the phone and thank him for his time. There will be no discussion of the massive coordination and logistics required to make this happen. I take the dog for a walk and let out a “FUCK” at the top of my lungs not really giving a shit who hears me.
May 23: We have a zoom call with Kohl’s team. He has been unceremoniously denied eligibility for extended school services and therapy which he has qualified for every year since pre-K. We have come to rely on these services especially as two working parents that have to figure out what to do with Kohl who can’t really do summer camp resulting in our payment of a small fortune every summer for people to watch him. Suddenly, he is denied these critical services. I have sent an angry email to the school demanding this meeting for an explanation and to further discuss. We learn, for the first time, that eligibility for these services requires a demonstrated “regression.” This is an enormous slap in the face because Kohl has had the worst regression he has ever had, made all the worse in that it has occurred a year after we spent $10,000 out of pocket for him to have stem cell injections. I explain all of this to his team, my voice shaking with anger as the annoying voice inside my head admonishes me for my inability to express normal human emotion. Sarah tag teams through tears. In the end, we prevail, and Kohl gets the services. Sarah’s tears for the win. I am too pissed off to be satisfied though. I am furious that such insult had to be added to injury and that we had to have this meeting in the first place. I walk the dog again. City Park once again hears some man yelling expletives. Innocent passersby probably assume this guy is a schizophrenic that belongs in an institution. Maybe he does.
May 27: We get notification that the sleepaway camp Kohl is supposed to attend for five days has been cancelled due to a staff member testing positive for COVID. This was the one bright spot in a massive turd sandwich of a year. Kohl desperately needs to experience some fun. He desperately needs a break from us. We desperately need a break from him. Now that shit’s gone. But no time for tears or fucks. We are going to the beach. Compartmentalize.
May 30: We are about to leave the beach. Kohl has been unhappy the whole time. As usual, he is severely constipated. He is having thousands of seizures. He has hated swimming, an activity he used to enjoy. He should be at his first day at sleep away camp. Instead, he sits on my lap, being stretched and moved to try and get him to take a shit so I won’t have to put on the latex gloves and Vaseline and extract it myself for the umpteenth time. I hear the sounds of childrens voices in the distance. I hear their laughter. I hear the pitter patter of their little feet running around. Enjoying the beach. Then I look in my son’s eyes which are squinted tightly in pain. Finally my own tears come.
I don’t usually talk about this kind of stuff publicly although maybe I should. If you have made it this far, thank you for reading. I so desperately want people to understand what this life is like. It is so fucking hard. And yet, so many have it so much harder. This world is in dire need of empathy. So thank you for listening. And understand that the little things matter. In fact, they are not little things at all. They are big things. Like this dude’s smile.


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Breaking Point

Everyone has a breaking point. Sounds obvious but it was something I needed to be reminded of by a good friend yesterday. It’s because I have been dangerously close to mine the last couple weeks. It has happened before several times over the last 10 years but the difference now is that I am aware of it, I am taking ownership of it, and I am trying to be more up front about it.
A variety of factors have taken me to the edge this time. First these renovations. These godforsaken, never-fucking-ending renovations. They have been nothing short of an utter nightmare. Extremely delayed and way over budget. And, while we are close to the finish line, the hits just keep coming. There are some really good humans involved in this clusterfuck of a renovation project that are aware of our situation and have absorbed a substantial amount of the skyrocketing costs that have largely been the result of doing a major renovation project in the middle of a global pandemic.
I am grateful for their humanity, but still pissed off because no one has been hit harder than us. We have forked over a substantial amount of money for these renovations because we like where we live, wanted to stay but happen to have a child with severe disabilities in a wheelchair that needs these additional accommodations. It is utter bullshit that we live in a world that provides almost no assistance for families like us who, in addition to working through the trauma, mind-numbing anxiety and levels of stress that are sometimes beyond comprehension, also have to deal with seemingly impossible financial obligations.
And that’s why I’ve spent the last 10 years working various jobs that have been well paying and full of lucky breaks where I get to work for and with truly great people but doing things that are utterly misaligned with what I perceive to be my passion and purpose in this shit show we all find ourselves in. It’s why I am still in the Marine Corps, an organization I have always had the utmost respect for, have come to love despite my chronic imposter syndrome, but one that I am only affiliated with now because I need the health insurance and eventual retirement benefits. That’s bullshit, it’s not fair to the Marine Corps, and it’s not fair to me.
Then there are the seizures. These motherfucking, bane-of-our-existence seizures. I have a lot of “fuck you’s” to give, but I reserve the most vigorous ones for you, seizures. As if the trauma of his birth and his one month stay in the NICU wasn’t enough, he was discharged and hopped up on all manner of anticonvulsants, purportedly to keep you at bay. Then we had to squirt that garbage in his mouth three times a day, leading to his decision to reject anything his mouth at all, no bottles, no spoons, and most heartbreaking of all, even his mother’s breast, thus depriving both him and her of one of life’s most beautiful connections. Now, here we are 10 years later and we are still getting our asses kicked by you. We had to take him to the ER a couple of weeks ago. The seizures were out of control. Another medicine was added that doesn’t effectively control them and causes horrific side effects. Rinse. Repeat.
Yeah, I not only came really close to my breaking point the last two weeks. I was nearly broken. Things have only gotten harder and they will probably continue on that trajectory. But here’s
the thing. I’ve slowly learned to let the air out of the balloon. I’ve learned to stop sweeping shit under the rug, to stop being so damned critical of myself and invalidating the experience of real trauma and real pain by dismissing it as “whining” or admonishing myself to “get the fuck over it” or “be a fucking man.” No, that’s bullshit.
Instead, I have slowly but surely learned to be honest about it and just put it out there. I unload even on casual acquaintances that ask how I’m doing. And you know what? They listen. They care. Genuinely. You know why? Because humans, in general, really are good.
When I do these things, I’ve noticed that the universe can sometimes even shit out. This
has been a horrendous week. Absolutely miserable. But the moment I decided to let the air out of the balloon lest it pop, things started getting better. I started doing a daddy-daughter yoga/art class with Amelia every Friday afternoon that has turned out to be amazingly therapeutic. (Please make fun of me). Then I found out Kohl got “Student of the Week” at school for being a good thinker.
Once my cloud of depression, anxiety and profound anger lifts, Kohl’s mood lifts too. He may not be able to sit, stand, walk, talk or look me in the eye. But that little bitch is a thinker and he can immediately detect anger, sadness, and anxiety. And sure as hell doesn’t want to be a source of any of that shit for me. He’s a thinker, and he thinks that’s bullshit.
So if you’ve read this far, you must be really bored, but I appreciate you so much for listening. It helps more than you know.
May be an image of person, child and indoor


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Cerebral Palsy/HIE Awareness: 31 Observations

Every day, we are inundated with cheesy, clickbaity numerical lists.  I don’t like them, and I try to ignore most of them.  I also ignore most “awareness” days, weeks or months.  There are just too many of them, and they get lost in the noise of national hot dog day or whatever other drivel is foisted upon us.

But today is the last day of “Cerebral Palsy Awareness” month, and tomorrow marks the beginning of “HIE Awareness” during the month of April.  My son Kohl was born with HIE, which is brain damage caused by a lack of blood and oxygen. Cerebral Palsy is one of his diagnoses.  So while I give not a shit about other awareness months, I give very much of a shit about these two.

I genuinely enjoy it when friends who are traversing similar paths as us offer tiny glimpses into their worlds.  It puts faces and stories behind otherwise meaningless words. So as much as I want to punch myself in the face for doing this, here are 31 observations from our little dance with this bullshit.  This is, in no way, comprehensive and they are strictly mine. I hope at least some resonate with you and this stupid post, in some way, raises awareness:

  1. Seizures can go fuck themselves.

 

  1. Modern Medicine is good at solving specific problems and treating acute conditions, but it sucks at treating chronic ones.

 

  1. Out-of-pocket expenses can be astronomical because health insurance doesn’t cover a lot of things that are useful, but expensive.

 

  1. The medical system in the U.S. is broken and needs fixing.

 

  1. Whether I’m doing “enough” is a constant source of anxiety.

 

  1. Having a child born with serious medical issues can make or break marriages, but thankfully it has strengthened ours.

 

  1. Raising “healthy” children is far from “easy” but it damn sure is “easier.”

 

  1. Siblings are special.

 

  1. I play the “what if” game regarding the past, which is not productive, but it is inevitable.

 

  1. I constantly worry about the future.

 

  1. Having a child with medical issues is a traumatic event, and many parents of children with medical problems have PTSD that is undiagnosed or otherwise ignored.

 

  1. Connecting is better than fixing.

 

  1. Other parents facing similar problems are, hands down, the best sources of useful information.

 

  1. Special educators have a very important and difficult job for which they are grossly underpaid.

 

  1. Public resources are woefully inadequate.

 

  1. Awareness is woefully inadequate.

 

  1. There are countless things more important than eliminating the word “retard” and all its variances from your vocabulary, but you should probably just eliminate it from your vocabulary.

 

  1. If you park in a handicapped parking space without a tag or otherwise without actually needing it, please take a knee, punch yourself in the face and never do it again.

 

  1. Having an “us versus them” attitude is human nature, but it is not helpful for anyone.

 

  1. The present moment is what it’s all about.

 

  1. Forcing yourself to come up with three things you are thankful for every day is an unbelievably useful exercise.

 

  1. Having siblings, grandparents and/or close friends around is indispensable.

 

  1. The human brain seems to be the least understood organ whose mysteries we are only beginning to discover.

 

  1. My priorities have been recalibrated, and many of the things I used to give a shit about seem laughable now.

 

  1. I find young kids and the elderly to be highly entertaining, endearing and instructive of what is most important in life.

 

  1. Regardless of where on the scale of introversion or extroversion you find yourself, authentic human connection is what I think we all crave most.

 

  1. This journey can be indescribably frustrating.

 

  1. This journey can be indescribably stressful.

 

  1. This journey can be indescribably magical.

 

  1. Religion is an important source of comfort and strength for many, but definitely not all.

 

  1. Parenting my kids has been my greatest passion and is my most important job.

Now, if you’ve read this far, you must be really bored or have nothing else to do.  In any event, thanks for reading.  If you think they would be of value to anyone for any reason, please share them.



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