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?
Ha! I knew exactly where you were going with the two month old in the atrium story. I was precisely there except I was walking out on the edge of a pier that jutted out into the ocean carrying my three month old ‘normal’ son. I was so sleep deprived I could barely breathe, never mind walk. I was looking down at the green, quiet sea. My mother was walking next to me and I said to her “Well, one little slip and that’s the end of THAT problem”.
I learned a lesson a few years back. I was so worried about my daughter’s health, her lack of a diagnosis, her projected ‘unknown’ lifespan….and I took my two sons’ good health for granted. In 1999 I almost lost one son to a baseball injury. He was pitching for his highschool and took a line drive to the side of his head off a metal bat. I almost lost him that night. Emergency brain surgery. Epidural and subdural hematomas.
So now I worry about all my children’s lifespans. 🙂
Although my son (almost 13) still has no dx, issues have been apparent to us since birth.
I also spent little time on grief and guilt — not that I didn’t go there…my (our) escape was planned in the garage with the car running until we both fell quietly asleep (helped out by plenty of access to seizure ER meds). I figured… I brought him into this wolrd of pain, I should escort him out.
I think that it was the “other people” around me need to stay in the grief and denial, that forced me out so quickly. The longer I stayed in denial and greif, the harder life was for me and my son. It was almost a forced quick process…survival.
I tend to focus on what can change and spend my time working towards that. This only backfires when I reflect and see how much energy was placed into making changes for him, and recognize really very little actaully has.
I’ll be spending half the night and most of tomorrow trying to figure out exactly what this all means.
Something that’s been impressing me lately is how brave people are. So brave. None of the darkness, fear, ambiguity, reluctance, anger, inadequacy, guilt, sorrow, depression, etc. diminishes that.
Where’s the LIKE button?
What a minute…verbose?!? Why I oughtta…
A neighbor had to make the difficult decision to put a DNR on her 18 month old baby. I always wonder what I would say if it came to that. When does the suffering outweight hope? When is it okay to say ‘enough’?
Child seats are made to withstand eight-story drops for a reason. Many new parents, me among them, with perfectly normal babies have flashes of utter despair (The crying! The sleeplessness! The expense! The babysitting logistics! The crying! The crying! The crying!) that they fantasize about dropping their kids off a cliff.
Rising kids is terribly hard and I imagine raising severely disabled kids is almost impossible to endure sometimes. You”re a brave and stalwart soul and a wonderful father.
There’s such a big taboo on suicide thoughts and even bigger taboo on “killing your kids” thoughts.
A friend of mine used to think about opening the door of the car while they where driving on the highway when she was a little kid.
I got jumping thoughts when on high buildings or cliffs.
Not that I ever wanted to kill myself. Same for her. It’s just a “what if” scenario that somehow pops up in your head.
But she was actually afraid that she couldn’t stop herself from actually opening that door.
Last Thursday I was walking with my 2 weeks old son along a dyke (the Dutch things that are build to keep out water). And there was just a half meter of road between us and the slope towards the water and I kept thinking about “what if the stroller slips or something?”
I actually heard from a woman who had these morbid thoughts about pressing her fingers in the fontanels of her newborn.
Things like these are what makes me sympathise (in part) with people that actually carry out those morbid thoughts. And it makes me wonder, what is it that makes people act or not act on it?
Why is it that some people go on and shake off the morbid thoughts and others decide, sometimes in a split second, to make a drastic end to it?