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.
