Loud, Graphic, Measured Desperation

“The mass of men lead lives of quiet desperation.” – Henry David Thoreau

My desperation is sometimes quiet, and sometimes loud and messy, and keeps me awake at night (like, lately). Why do you think I post all those pictures of my kid in living color on the social network? Because I’m trying to impress you? Well, I am, sort of. What it really boils down to, I think, is a measured form of loud desperation.

Like so many other parents of children with special needs, I’m leading a life of many decibels of desperation. Those pictures of my son, recklessly plastered2013-02-28 17.14.59[1] all over the social network? I’m desperate for you – for the world, really – to fall in love with him, or, at the very least, respect him, maybe even develop a sense of responsibility for all kids like him. And by kids, I mean human beings, so please don’t get wrapped up in ageism. We’re all kids, and I want the world to love mine, because someday I won’t be around to take care of him.

Love may endure, but I don’t think my enduring love can ensure clean clothing, good food, superhero stories, and a warm, safe bed for him when I’m not around, or when my wife isn’t. We know our daughter is the best big sister he could possibly have, and she’ll step up when and if the time comes, but you know, this is a marathon that requires many people to help one person run a good race, and that’s why I post the photos. Big love is way better than no love, and too many caring hands are better than two or too little.

If you look at the pictures of him in his baseball uniform, or greeting people somewhere in the community (he is “Joe on the Go,” after all), or doing whatever, you can see that he is a worthwhile person, someone interesting that you’d like to know; that he is one of the universal us, and you can see that he (and we who care for him) don’t need or want pity, or regret, or any of that bullshit. Love and respect and open minds, empathy and a sense of responsibility, though, are entirely different (and valued) matters.

I’ve got a lot of company in the world – fathers and mothers and caregivers of children with special needs, and some are of the quiet desperation model, which is what the world historically preferred.

Some are stubbornly quiet in their desperation. “Ain’t no one’s business, this is about me and mine!” To them I say, sincerely, “good luck,” but I could give two shits for their quiet desperation.

You want to suffer bravely in silence somewhere, wallow in your own personal hell at your child’s or family’s or your own expense, disengage from the world you are inevitably sucking from anyway, that’s your choice. Go for it. But this is my son, and I don’t expect to outlive him, and therefore haven’t afforded myself the luxury of false pride, or private, misanthropic self-pity. So, my wife and I are out of the closet with him, putting him in front of parades, posting his picture (and the fact of him, and his peers) wherever we can.

There was a time when kids like my son were placed in isolated corners like potted plants, watered and fed and grown, and little else, and that was just fine (when it wasn’t the only choice) for some parents, and that was the upside. Massive swaths of humanity lived unseen, people suffering unimaginably, often lacking the capacity to understand the excuses for why.

I’ve met enough 60-somethings who survived such corners, such dark rooms, and it can be both heartbreaking and uplifting to see their phoenix beauty in front of you while knowing the ashen horror behind them.

The good thing is, desperation isn’t a constant, nor is it often, and it may not even be the right word, but sometimes it is, at 3 or 4 in the morning, when the thought-track goes, over and over, “what about when you’re not around?”

We’re working on getting his room in the world ready. It’s a lifelong chore, enlightening, difficult, lonely, worthwhile, sometimes wide-open joy (there is at least as much joy as there is desperation), and a lot of impossible-to-answer questions. The pictures and the tireless PR on the boy’s behalf, that’s just one way of hedging our bets. For now, the only guarantee I can make my son is that he will never experience a shameful hidden corner at the hands of other humans while I’m around, because no one wants to fuck with a desperate man.

2 thoughts on “Loud, Graphic, Measured Desperation

  1. Joey is an amazing child. He touches something in me I can not explain. My life
    Is enriched by knowing him.
    You and Jane have created a special angel
    Indeed. Thank you for sharing him with me.
    He has been a blessing in my life!
    God bless you and your sweet family! :)

  2. Thank you, dear Wilma. I hope you know what a great impact and influence you’ve been, on Joey and his old fogey parents!

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