On July 24, 1998, our son, Adam Dzialo, drowned. Twenty-five minutes under water at a summer camp when he was 12 years old eventually resulted in a disabled body but produced an indominitable spirit and brilliant soul. Seventeen years have passed...we believe our son and his family to be in an active state of healing. We devote our lives to his maximum possible recovery and his comfort in his body.
Our son, Adam Dzialo, age 30
Wednesday, April 27, 2011
A Primer on Bringing Out the Worst in Me.....
It is a consolation to the wretched to have companions in misery.
Publilius Syrus (1st century BC)
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.
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?