For the last three weeks now, I have written about my inner demons. These demons have always existed in some form but after Kohl was born and gave us the blessing and enormous challenge of raising a child with severe disabilities, their power over me has grown to unhealthy levels. In an attempt to lessen their influence, therefore, I have named them, personified them and sent messages to them. If I continue doing this, however, I fear that I may eventually fall off the cliff of sanity and begin yelling things like “it puts the lotion in the basket” or some other nonsense.
So this is the third and, mercifully, the last demon I shall confront.
In Round 1, I took on “Percy, the Perpetually Pissed.” A formidable foe, the anger and hatred Percy spews escalates situations in which reasonable anger is warranted to the realm of the unreasonable. What’s worse, Percy all-too-often causes me to miss out on just being with my son in the present moment. Rather, Percy causes me to dwell on the past, worry about the future and obsess over trying to fix Kohl and getting angry that he is not making progress at the rate I would like him to.
Round 2’s battle was against Percy’s cousin, “Joffrey the Jealous.” Just as Percy ruins things with anger, Joffrey does it with jealousy. In his constant quest to compare my life with others, Joffrey firmly believes that my plight, in raising a severely disabled child, is among life’s worst. As a result, Joffrey often causes me to invalidate real problems that others experience. And the wall of jealousy that Joffrey erects is also a barrier to my enjoying those special moments with my son that Percy also deprives me of.
Whereas Percy and Joffrey often work in tandem, the third and final demon I seek to control is a loner. He is related to neither Percy nor Joffrey. He prefers loneliness and sadness. He is known simply as “Sylvester.”
Sylvester is the veritable turd in the punch bowl. He is the snickers bar in the pool that everyone thinks is a turd. He is like the spawn of Eeyore from Winnie the Pooh and Debbie Downer.
Sylvester was born back when Kohl was in the NICU. His birth came when the neurologist was having a difficult conversation with us. Kids like Kohl, he explained, often do not live past the age of 15 or 16. Any loving parent will do anything for their kids. When your child has a serious medical issue or a severe disability, that loving parent will do anything in their power to ensure their child lives as full a life as possible. The neurologist was cautioning us against letting that desire be too consuming.
I got where he was coming from. He had seen too many parents that essentially gave up their lives to help their profoundly sick children and when that child was taken away too quickly, they had no life left because that child was their life. While his intentions were undoubtedly good and, in his mind, he was just trying to be helpful, this conversation was, in retrospect, not only unnecessary but extremely harmful.
Maybe it was his horrible bedside manner. Maybe it was the way he came off as completely lacking in empathy. Maybe it was his physical appearance that, my father Reuben Leonard Chrestman III artfully described as “looks like a fucking muppet.” But this exchange stuck with me and not in a good way. It was devastating.
Sylvester was born that day because the knowledge that it is not uncommon for kids like Kohl to have unfairly short life spans is his fodder. The pervasive worry of losing Kohl fuels what can sometimes be paralyzing anxiety and allows Sylvester to do his bidding.
Sylvester appears in the obvious places.
We are members of a network of other parents with children affected by “hypoxic ischemic encephalopathy,” the form of brain damage that Kohl has. All too often, through that network, we hear of parents that had to say goodbye to their children. This defies all notions of fairness. It shatters any belief I once held that everything happens for a reason. And it causes me, selfishly, to think about losing my own child – one of my worst nightmares.
But what really makes Sylvester’s tormenting of me sting is when he pops in and ruins what are supposed to be the happiest moments.
Those tiny miracles when Kohl looks me in the eye, smiles at me or laughs at me. Enjoy these moments while they last, Sylvester will tell me.
Or during those tender moments when I kiss Kohl goodnight. This could be the last time you tell him goodnight, Sylvester reminds me.
Or when I wake up in the morning as Kohl sleeps. Better make sure he is still breathing, Sylvester says.
Not taking things for granted and appreciating our fleeting moments here on planet Earth is one thing. But the bullshit dances Sylvester does in my head is something entirely different.
So, Sylvester, here you go. First of all, your name would be a lot cooler if you were a 295-pound defensive lineman. But you’re not, so your name is just stupid and sad. Secondly, shut the fuck up. Seriously. I get it. Kohl was born with brain damage. He has challenges. But in so many ways, he is just another five-year-old little turd. He is here now, and he is fine. We are fine. In fact, we would be much better off without your interference. Who knows what will happen tomorrow. Who knows what will happen 5, 10, 15, 20 years from now. Do you? No, you do not. Worrying too much about tomorrow ruins today.
And that goes to you all too, Percy and Joffrey. That is the one thing you all have in common. You ruin my todays with this little fucker:
And these bitches, one of whom wears a scarf made of toilet paper:
So one last time, Percy, Joffrey and Sylvester: PISS OFF.