It all depends on your grip

Those of you who subscribe to have my new post announcements emailed to you (and why don’t you all?) (just under the search box on the right) may have noticed that I posted the last post (“I want what they’re smoking”) and then after a little bit I took it down. Then a day later I restored it.

“Why, SingleDad, oh why would you do such a thing?” I’m glad you asked. It was not the post I wanted to write. I was writing on a similar but different topic, chickened out, and wrote that one. But now seeing the comments, I am glad it went up. There is a point or two I would like to expound upon, if I may.

I spent a week or two mourning, yes mourning, the daughter that I did not get, a week or two to get over the shock, the loss, the confusion. And then I rallied, got my shit together, and never looked back.

That is true, but let me clarify. By mourning, I mean feelings of loss, crying, asking “why,” and the classic “mourning” of a loss. I know this even better now having lost my father almost five months ago. At that time (just after Pearlsky’s birth) I was mourning the loss of a dream, not of someone I knew, the dream of my first child, my long desired daughter, who, in my foolish dreams, was normal. I also knew that this was going to be a long haul, and not easy. I consciously worked at accepting the situation in toto, knowing at that time in order for me to survive, to be able to support my mother what with Dad having five bypasses that day, with my wife having her issues with Pearlsky, I needed to “get over it,” to somehow fully accept the situation, and deal.

Do I still mourn sometimes? Shit yes. Do I catch myself cursing the holy one, blessed be He? Absolutely. Am I grieving? I don’t think so. Do I handle anything with grace? Not since the days of my ballet lessons … 😉

The comments to my last post do show that we all hurt in some way, and probably always will. Many of us remember, as if it was yesterday, the look on the face of the doctor, or his/her words, when they “tried” to tell us what was going on. They really need to learn how to do it. If, in fact, there is a way.

Want to know something that no one, absolutely no one on earth knows? I’ll tell you, but first know that I adored Pearlsky from the moment I saw the top of her head, slimy and bloody, that day of her birth. And I still do, and have every day of her life.

Ever been in a very large and tall hotel in a resort area? One of those that is twelve stories or something, the rooms are all in a big square around an open atrium? So when you are on the eighth floor, walking down the hall, the rooms are on your right, there is a railing on your left, and over the railing, an atrium, all open, eight floors down and a few floors up. Pretty cool. And you are walking down that open hall, almost by yourself, you are holding a child car seat, with your kid in it. Your two month old kid. Your severely disabled kid, and you have not slept through a night for the last two months, you are filled with the unknown, you do know your life is going to be anything other than whatever you ever dreamed. And you are walking down that hall, gently swinging your arm, swinging that child seat. Near that atrium, that eight story drop. And it’s late at night, few people around. And you want to scream. Or run. And you are at a crossroad, you see an out. A proverbial exit sign. Flashing. If I just accidentally …

There are too many unknowns. We don’t know why, and even if we do, do we really? Why did my kid have that chromosomal defect? Why does my kid have the weak blood vessel? Why can’t anyone diagnose my kid? Then there is the guilt. Although potentially a touch verbose (something I know nothing about), Ken talks about guilt (and others join in in the comments). Ken says …

So why tell this story? Why now? I don’t know. Not like getting it ‘off my chest’ changes anything. Bennett will always be Bennett. I will always love him. He’ll always be my son, nothing will change that. And yeah, there are times I have to go someplace quiet and hide and bang out a good cry when I see how far behind he is and those feelings of Guilt get to be too much for me to handle.

I always believed guilt to be a useless emotion. Not that I don’t experience it, hell, all of Pearlsky’s issues are because of me, or my genes, right? And I never have any guilt from any thoughts I may have had (no, I didn’t, I swear) when she was just months old. No, but guilt is about the past, which we can’t change, so why waste the energy? Just human, I guess.

And what about the future? Other than one whacko who has psychic experiences and gets tapped on the shoulder by mysterious forces, the rest of us have no clue, nor any real help. Will my kid die tomorrow? What is the life expectancy of “diagnosis: unknown”? Pearlsky is diagnosed, but there are no known cases of this in people older than her (and only about two dozen known cases, all current). Even with a diagnosis, with our kids, what is that worth when thinking of the future? Not much.

Guilt. Crappy past. Unknown future. And still not the post on my mind.

Hey, Rachael, pass the bottle, will ya?


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