Telegram from Mt. Olympus
Aphrodite writes to me, in part …
I think I need to stop reading the f-ing disability blogs. Disability = Big Giant Bummer. I didn’t make the rules, and I really do think there might, might, be a reason these people are disabled and a reason we are their parents. Beyond that, science will improve and disability will change. Beyond that, LHC will let us know one way or the other!
The “LHC” is a reference to the Large Hadron Collider that some of us (ok, me) believe (ok, hope) (sort of) will, when run at full blast, create a black hole and cause all life as we know it to cease to exist in an instant. Cool. But I digress …
Interesting question … is there a reason “these people are disabled” and/or is there a reason “we are their parents”? For there to be a reason there needs to be a reasoner, no? Back to the question, is the Holy One, Blessed be He (or whatever god or goddess you believe in) a micro manager? If so, then S/He can fix my kid. If not, then, well, why bother even thinking about it.
I don’t know if Pearlsky and/or David have made me a better person. Actually, I think it is a moot point, I am who I am, and who I would have been without them is unknown. Other than less tired. And less stressed. And not as good at priorities. But more traveled. But never having known Aphrodite, Freya, or any of you. Maybe happier in general. Or more fulfilled. Maybe not.
I wish Pearlsky were normal. David too. I’ll take being a worse person if they were normal. Any day.
I do not believe it works that way.
I think Man created all the bullshit in the world. I don’t think God put a tumor in my son’s head, and I don’t think God does great shit for me, though I do need to finish my GD Faith arc and explain why I do still actually believe He exists.
Having said that, I often think Bennett brings out the worst in me.
Having said that, I often think Bennett brings out the best in me.
Hey what do you know? I’m a human being after all.
And I will second that I do feel fortunate to know who I know through the experience, but as much as I think you are Joe Cool I think you and I are in complete synchronous agreement and would take no offense of each other to freely admit that it would be WAY nicer to have totally been late for the Special Needs plane.
But like you said. Maybe not.
Moot? Moot.
Moot moot moot moot moot moot….. 😉
Regardless of the reason my children are disabled, regardless of what greater being may or may not have had a hand in it, it is my life and it is their life.
I’m not going to be dishonest with any of my feelings, but I am also not going to dwell on the what-ifs.
I accept this life of mine, enjoy it most of the time, am saddened by it some of the time, and get angry about it when appropriate…but it is what it is.
I choose to relish every moment with my special children and to the best of my ability celebrate their differences. As their mother, I feel that is my responsibility.
The most ancient philosophies/spiritual constructs (Taoism, Buddhism, Hinduism) posit that everything is a choice, from how one enters into life, to how one chooses to live it out once here (and that includes choosing the people you live with). Of course, these philosophies also posit frequent returns, to offer balance for “less than ideal” choices made during any particular physical life. It is, then, about balance, not blame, or victimization…and it’s always been and forever will be, in each individual’s hands to bring that balance about. Kids like ours, who appear to have relinquished everything “easy”, are considered the greatest souls, the greatest teachers…and they give the hardest lessons. We who live with them, likely, are the hardest to teach, or have the greatest to gain, or both. Hey…don’t get pissed at me…I didn’t make this up. 😉
In my next life, I want to be a surfer, smoke a lot of weed and work in a surf shack. I’ll wear a teensy tinesy bikini under my wetsuit and not think about much at all.
Maybe there is a reason, but I sure as heck don’t know what it is for many things. To me, it’s just one of those expressions that people say when it is difficult to come up with anything. There’s a whole batch of those things.
Having any extensive experience give a person knowledge and perspectives that those not having such experiences do not have. Caring for Pearlsky, having David are all things that give you information and first hand experience that few people have. Whether you like it or not, it has qualified you as an “expert” in dealing with a severely disabled child. Whether that has made you a better person or not, cannot be determined, since as you state, no one can say how you would be without that life experience.
Have you benefited the world with your experience? Yes, indeed. The personal insights, opinions, experiences that you share with others have enriched any who read your writings. This is information that can only be derived through direct experience. I have no doubt that much of what you have written here, and many of your interactions have helped others in situations similar to yours.
“Everything happens for a reason” – okay, I admit it, the phrase pisses me off. Largely because people said it to me while my father was dying of brain cancer. I never said, “Okay, so what’s the reason my father has to be eaten away from the inside, die in pain three decades before he should have died at all, and lose all of who he was long before he’s actually in the ground?” But I wanted to. And I didn’t get why people kept saying that to me, like it was supposed to be comforting. What was I supposed to say back? “Oh, okay, if there’s a REASON, then I guess it’s fine my father’s dying.” No.
I eventually realized that that phrase isn’t designed to comfort the person who hears it. It’s designed to comfort the person who says it. If everything happens for a reason, then I can keep it from happening to me. If there’s a reason you have a severely disabled daughter, if it’s something in you, then obviously there is also a reason my son is only mildly developmentally delayed, right? If there’s a reason you never get to hear Pearlsky’s voice, then there’s a reason I have the privilege of hearing my son’s all the time, and I don’t ever have to look at him and think – what if, what if, what if. If Pearlsky is the way she is *for a reason*, and that reason is you, then by not being you I can keep my son safe.
But that’s bullshit. There’s no reason my father died horribly of brain cancer. There’s no reason that a three year old I know died earlier this year (she was THREE YEARS OLD – what reason could there possibly be for that?). There’s no reason that Pearlsky can’t talk or move. (A diagnosis, sure. But not a reason.) And, equally, there’s no reason that right now my son is okay, my family is okay, my life is okay. Which means it could change. Terrifying, but true.
If I could go back in time and respond to the people who told me my father was sick for a reason, I wouldn’t ask them what it was. I would tell them the sad cold truth: “You’re wrong. There’s no reason. And that means next time, it could be you. You could be sitting here crying and lost and bereaved instead of me. I hope it isn’t. But if that happens, I promise not to tell you it’s for a reason.”
I once saw a lady interviewed who had had a near death experience describe how she went to a place where souls resided in a heaven-like atmosphere. She described how each soul chose the life on earth for different reasons. Some souls went to comfort others and some went to grow through the experience. She described a world with reincarnation, and I like the idea that we go through experiences for a reason. I don’t really believe in it, but I love the idea of it.
I much prefer the idea of Shit Happens over It All Happens for a Reason.
If Shit just Happens then it’s nobody’s fault that my dad became disabled with epilepsy and memory loss when I was 11 so that most of my childhood never happened for him, so he’s not really my father anymore. It’s nobody’s fault that I had to be his caregiver after he became disabled or that his many near deaths gave me PTSD.
I can’t stomach the idea of a universe where women get raped for a reason or our apparently healthy babies are stillborn and there is a reason. I can’t conceive of a situation, under any theology, where those things need to happen, where it would be part of a plan. I can’t.
As student nurse, my teacher told us NEVER EVER say “it happens for a reason.” She went on to explain that when it comes to death and dying, a lot of people just do not know how to support the grieving person/s, and feel like they have to say something, anything to break the silence. I have learned being silent, but present with a shoulder to cry on is way more supportive than saying anything.