It is a consolation to the wretched to have companions in misery.
Publilius Syrus (1st century BC)
Maxim 995
I feel a great dissonance when I am out of sync with nature (just another brilliant intuitive insight). In the winter, we hibernate, slow down. lay low and decrease expectations of self...just like a gluttonous behemoth in its cave. In summer, we bask in the sun, taking in the richness of the rays of light and warmth. In the fall, we slow down and prepare for the hibernation by participating in the changes nature brings. In spring? Well, flowers bloom, trees bud, the soil is prepared for planting and the effing Canada geese return to crap all over your lawn. I suppose these vile creatures are ingesting all that lives so that they can effectively breed and make more genetic copies of themselves.
Well, what do you do if you are out of sync with nature and plain out of valium? What do you do if (of course, in the land of disability care-giving) things are not green, pliable, sunny, warm and fuzzy? What do you do if one day is like the past 4,378 days? Wake the boy, shower the boy, change the boy, feed the boy, ABR the boy for hours, laser him for a bit more, feed again, make faces, entertain and "flip" him off so he laughs. Change and feed; change and feed; clean stuff up; gag him so he gets the crap out of his throat otherwise he freaks and hyperventilates. (I would freak if I almost drowned and died and had a hard time breathing). Anticipate needs which may not even be there. Each day the same, and it's spring...a new beginning, refreshing new life, propagation of the species (as if I could care and have the energy for that!). Simply, the outside is not in sync with the inside.
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| And I think I have it hard? |
This is not the way it should be...I should be grateful for what is, for Adam's life, for his health, for my health (dubious), for being the beneficiary of a gift ( a handicapped son) from god which brings out the best in me? He/she/it knows what's best for me and what will purify me of my past sins or perhaps, allow me to put some karmic points in the bank so the next time around I will be rewarded with riches and a 1000 virgins. Sorry, this is my last time through, and I was pretty adamant about that with the guy upstairs.
I have to accept that life is what it is...a balance of a bowl of cherries and a bowl of turds. Eat and flush! I think that was a movie., something like "Eat, Pray, Love"... probably the worst movie I ever saw and I'm mournful that Adam had to sit through it with us...at least there were burgers and beer at the movie theater, but no discounts for kids in wheelchairs...you don't get a discount because nobody notices. Someone who sits in a cafe and drinks strong coffee all day in France would label these periods "existential ennui."
When you care-take a pretty complex kid, you, unfortunately, don't have the luxury of much time to wallow, although I think that wallowing could be somewhat good for the soul. St. John of the Cross wrote a lot about the "dark night of the soul." He had a lot of time to wallow and was made a saint...do you think I have a chance at making a canonization? Will you write to the Pope on my behalf? Probably not, because if you're reading this crap, you are probably a lot like me.
You do what you have to do, you fight for what is important, you get up every day, even if you don't want to. You smile when you aren't happy, you eat only that which brings you joy, you drink what pleasures you. After all, we are entitled to these fruits of the springtime earth. Above all, you NEVER, EVER consider doing something different from what you are doing.
The positive to this life is that you lose your censor...you say things as they are, you see people as who they are, you envision possibilities, like real friends and parties and cruises, which may never exist...you live and you do not have the luxury of dying because there is a job to be done. You do the job because you love your child; not because he/she is an angel, a special person (I hate that f....in' phrase), a gift from above. Because he/she is your child...your blood, your spirit, your life....that is unless the stork dropped the kid off at the wrong house. That is always a possibility...
I am happy now, because I know that I am not alone.....or, so I assume?
All I can do is nodd my head the whole way through your post. Not alone. Oh no.
ReplyDeleteFirst off, you are a massive disappointment to me Phil, because you actually saw a film with Julia Roberts in it. I know better.
ReplyDeleteSecondly, your life would indeed be hard if you had to do all that, get up for a boy, dress a boy, take care of a boy. All the more difficult then that you have a man to take care of.
It would be great if we could accept, not have but accept, a solution like Captain Pike (remember him?). Day dreaming our lives away. It is unavoidable that we clash with reality and that it hurts. Scrapes and bumps and bruises and outsiders narrow minded and obtrusive, not open to accepting alternate realities.
Steady as she goes.
Eric: Well, the Julia Roberts thing is my wife's fault...I went along with Adam for the beer and burgers and Adam went along because he had to...he would have rather seen "Mighty Ducks" for the four hundredth time. Captain Pike of the USS Enterprise? Sure do! We're all getting ready to leave on the spaceship together to who knows where. For some reason Adam is still the boy or the kid...he's only 25, so maybe I'll call him a man when he's 40.
ReplyDeleteAnna: Thanks for the reminder that there are a lot of us out there!
I'm glad you realize you're not alone. Often I feel like we are alone in "our world" and it's people like you and Sharon that I have met along the way and many others I have met in cyber space that make me realize we are indeed, not alone.
ReplyDeleteNote: I also hate the "special" phrase and realized I put it on my blog...oop's, I changed it!
Thanks, it's amazing how we find support on line ..I sometimes think that others see us as so strong and capable because of the challenges we undertake,,,not always that strong!
ReplyDeleteI like this post Phil. And since we are quoting/referring to movies....The one where Harrison Ford hides out with the Amish...Witness, I think? The old AMish Grandpa says...There is always a choice.
ReplyDeletePhil: I never really liked the word/phrase "special", even when it was "in", starting in the 1980's. I always found it a bit patronizing because most of my clients then as they do now wanted to be treated as "normal", not necessarily "special". But there are name changes we can all agreee on i.e. the state of Ma. long overdue decision to change the name of the Department of Mental Retardation to the Department of Developmental Services.
ReplyDeleteClaire, I believe that the grandpa in movie Witness was referring to Harrison Ford character who punched out a punkie guy who was bullying an Amish family with his gang of thugs. The other choice was to turn the other cheek, but the movie audience I was part of cheered Ford's punch that bloodied and broke the guys nose because it is nice to see the bully get his comeuppance every now and then.
And just WHEN is the valium arriving???????
ReplyDeleteMel. Perhaps diazrpam has been pirated and diverted to Mogadishu.
ReplyDeletePhil, For a shot at canonization, you 1) have to die 2) have a miracle attributed to you 3)then you get exhumed 4) another miracle attributed to you 5) you're home free.
But sainthood is overkill. You don't need it, just redemption, and you attained that a long time ago.
Richard, my friend: I'm going for it...and the miracle will be one which has never happened...an amputee will grow back a limb, none of the small stuff like a cancer into remission....so freedom is not tooooo far away!
ReplyDelete