The Perfect Life

Much to my chagrin, I am forced to admit that yesterday was a perfect day, and that my life is perfect.

It was Valentines day, and I woke up next to my valentine – the man of my dreams, my perfect partner in this endeavor, whose chief function, it seems, is to remind me, just by looking at me and smiling, that I am loved. We got the kids off to school, and set about the Monday “routine”, if you can call our default setting a routine, of packaging a weekend’s worth of eBay, getting to the post office, and running errands.  A lunch together at a burger joint was perfectly romantic, even though we had to do it with a coupon to afford it. We did the grocery shopping for a few staples, and then home to pick up Phil and get him to physical therapy up in Sheboygan. Phil gets to play the Wii in the stander to distract him while the therapist stretches and bends his feet and legs, trying to get them to a further extension, and we realized half-way there – running late – that we forgot the necessary game controller for the game he brought to play. And it seems the day had reached it’s peak and was now on a downward trend. When Philip ain’t happy, ain’t nobody happy! But life being what it is we are learning to deal with his outbursts and disappointments, ever trying to steer him in the direction of dealing with disappointments in a more constructive way than cursing out the entire planet, and coming to the conclusion that “everything sucks!” No, everything does NOT suck, and we try to bring to mind things that are more pleasant to think on. Just before we arrived at therapy, an awful stench arose from the front of the van, and I noticed that the car ahead of us was blowing some darker exhaust, so we didn’t think too much more about it.

We made it to therapy, and with the help of the best therapists around, we were able to get him to cooperate with all his exercises. And so, by the end of therapy, he was stretched and bent, promising to try something new next Monday, and happy to be going home, where he would play his new game and catch up with all his friends on Facebook.

His therapy takes place in a building that shares the rental space with (ironically) a dance studio. This was parent observation night, and our handicap spot out front was taken, so we rolled around back of the building and found the last spot available where we could unload him. We left the building with plans to stop at McDucks and get him his French fries, Mark and I some coffee, and then home to finally call it a day. We started the van, opened the side door and lowered the ramp. Phil got on board, and as the ramp was going up, the vans engine suddenly bogged, and we heard an ominous sound. We smelled the same acrid smell we experienced earlier on the way here. Mark and I glanced at each other, a look that can only be interpreted as “Uh-oh…”. He folded up the ramp, and I looked at the engine gauges at the same time he lifted the hood – way too many lights on.

“Shut her down,” he called to me, as he reached underneath and pulled out what was left of the serpentine belt.

Now, I have been stranded by vehicles that have spontaneously malfunctioned in a major way more times than I can count – and I mean that literally, and people who have followed my life can attest to this. I have never owned a new vehicle – and the ones I have owned are usually beyond the “used” stage, closing in on “used up”. So this is not unfamiliar territory to me. I am not a panicking person by nature – in fact, if I’m in an abject panic, you probably should be too, because I’m the last one to fall apart. If you see me running and screaming the sky is falling – it probably is. And while this did not equal a “sky is falling” moment, I was suddenly struck with the magnitude of this current problem.

It’s cold, and getting colder. We are 25 miles from home. Our cargo is a 400 pound wheelchair under the kid attached to it. Hmm. This certainly puts a new spin on an old problem. I don’t currently have Triple-A, but I don’t think there is anything in there about sending a ride for the wheelchair occupants of a stranded vehicle. This is one of those situations where nobody really knows what to do. Lots of “Oh, dear!” and stupefied looks – not something you have to deal with every day. A real, “Now what?” of a situation.

Phone call #1: Mechanic. Voice mail.

Phone call #2: Wheelchair taxi, which drops people off here at therapy all the time. Closed for the day.

Phone call #3: Josiah, 18-year-old son who is the proud owner of the only working vehicle in our household, and it falls under the category of a “used up” car.

Phil is in the back getting all upset as I calmly fill him in on what this means to him. “Well, Josiah will come and pick us up. We will have to leave your chair here, and you will have to use your little red chair for school tomorrow. Let’s be glad we have a spare chair at home, kiddo – it beats a manual chair or a day in bed, now, doesn’t it?”

He is not satisfied with this solution. I spend the hour that we sat there waiting for a ride home trying to persuade him of the up side of this, even though there really isn’t one. “I don’t want to use the red chair! It’s so short – I will look so little to everyone!”

“Yes, but you can tell them that today you decided to use your “sports chair” – that your “SUV chair” is in the shop.”  I remind him that his chairs cost as much as a car, so he’s got something to swagger about, there.

He actually likes that idea. Then I tell him to think about what this will be in a week, a month, a year – an interesting story to tell. He accepts this, too. By the time I am done convincing him of the pleasantness of this whole experience, I find I have myself trivializing the whole thing as something I cannot afford to get upset over, even though I have the entirety of the situation laying naked across my bed. This is the last running vehicle we had. The minivan and the car are both DOA, needing various amounts of maintenance that we cannot currently afford. I have a dentist appointment tomorrow. We have the store to run on Wednesday. The whens and the hows of getting this thing back on the road and Phil back in the chair that is custom fit to his body are still a bit foggy. But the show must go on.

Josiah arrived to pick us up, and we lowered the ramp and chair to the ground, and I picked him up and put him in the back seat of Si’s car. I grabbed a few things out of the van, and got in behind the drivers seat – or attempted to. Si is getting to be a tall boy, and this is a Saturn sedan. Nevermind, I’ll just sit Indian-style. I had promised him that we could still stop for his French fries – there was no point in depriving him of that, too. As I said, life goes on.

And so in the back seat of this car – a place I don’t often see – I just figured I would curl up with Phil and feed him his fries on the ride home. As we pulled out of the drive-through, the car made a horrific bump underneath me. “Don’t worry mom, that’s my tranny,” Si told me in response to my gasp. I then asked about the awful noise coming from the front of the car, and he told me that, too, was “nothing…just my wheel bearing. I’ll take care of that…” and he turns up the music so I can’t hear it anymore. Now, I’m not completely mechanically ignorant, and this spells trouble to me. Not to mention that I look at the driver and think, “I gave birth to you! You can’t drive! You’re just a baby!” and somewhere inside the panic button is getting tapped. I am rescued from detonation by Phil’s voice, “Can I have my fries?”

I look over at him. He’s not worried. He’s hungry. He’s warm. He’s secured. There is nothing in his memory banks to suggest to him that this is a bad situation, or that the clatters, grinds and bangs coming from the car are anything other than noises that cars make, and may I have my fries, please?

And so I take my cue from the kid. What’s the worst that could happen? If tonight is the night that I am rocketing down the road at 55 miles-per-hour and metal fatigue sends car parts flying in all directions and us careening head-on into an oncoming semi…so be it. This is my life – and if today it’s over – oh well. Shit happens. So, how do I want the last minutes of my life spent? And in that moment, I decided that feeding my kid his French fries, looking out the window at the rising planet in the west, and the stars that you don’t see nearly enough of in the winter, and laughing at the look on Phil’s face as I stick an exceptionally long French fry in his mouth, leaving it hanging like a bent cigarette is exactly what I want to do.  I entertain rather macabre thoughts of what it would be like to die tonight in a thunderous crash of metal – me and three of my favorite people – all exploding through the veil of materialism into the spirit world in a split second together, arriving on the other side, utterly conscious, still very much alive, but totally free from all that encumbers us. And I am finding that this is not at all macabre, or unpleasant, or even unappealing. I love my life. I have no regrets. And when it’s time to go, I’ll go. How nice to take that trip with Phil, and Si, and Mark, rather then endure the mourning and misery of being left here. I chose not to think about those left behind, because in that moment, I realized that if this were to happen, there is nothing I can do about it, and from the vantage point of disembodiment and suddenly knowing, I wouldn’t care about that anyway. I would know it was okay.

The long and the short of it is that I was forced by circumstance to live in this very moment – nothing before it, nothing after it – just this very moment. And how I dealt with this very moment would determine my future, if I were to have one. Assuming we made it home in one piece, I could be ugly as hell, fuming about the problems we face, blaming this or that, finding fault and finger-pointing, or lamenting the whole situation. Or I could appreciate with laughter the oral contortions Phil was engaging in to get the rest of that French fry into his mouth without my help, while trying not to laugh himself. We could arrive home and inform the other kids as to what just happened, and embellish the story if we so wished, and enjoy a meal of cold chicken nuggets together. I could come home with tales of “woe are we”, or tales of, “damn, another puzzle to solve”.

Needless to say, we arrived home in one piece. Phil complained bitterly about his chair, until we recalled our Sports Chair perspective. We passed out the chicken nuggets to the other kids and recounted our night, and discussed the potential, probable and positive solutions to the issue.

Later that night, Mark and I sat down to our last smoke of the day, and I told him of my mental musings of the evening, and my conclusion: That our life was perfect. It’s a life that nobody wants, really – a life full up with the ravages of disease and poverty American Style. It’s a life of working your ass off for little or in most cases no financial reward. A life of too much to do and not enough time. But my life – or anyone’s life – is made up of moments, and what we do in each moment affects the moment that will follow it. And as long as I have done my best with what I have in my hand on any given day, at any given time, I can ask no more of myself. As Mark has encouraged me on numerous occasions: It has to be enough. How I choose to see any given circumstance will determine the quality of my life: Am I the owner/operator of this life, or merely a victim of it?

Do I see Phil and his disease as a plague, brought about to “test” me, concentrating on words like, “defective” and “crippled”; or do I just see Phil as Phil – my son, hampered a bit from the mainstream by muscles that cannot cooperate with the upright functioning of a human being that most of us enjoy? Do I see the lack of finances as some gross failure on my part to earn my keep, or just realize that money is an intangible unit of measure, really, and that just because I don’t get dollars for my hours upon hours of back-breaking work does not negate the fact that I work, and I work hard?

The Universe has set laws into motion that cannot be changed by mortal man. They can be bent, and twisted and defied – but they cannot be changed. We live on this planet, and we are subject to the laws thereof. What matters then, is how we roll with the changes, how we integrate these laws into our lives, and how we work with the results. Phil has Duchenne. It will have its way with him in the end, and there is nothing we can do about that. I can cry, and whine and lament, or I can feed him his baked potato and cheese while we watch a funny movie. Sure, it puts a different spin on little problems like a broken down vehicle, issues of mobility, and health monitoring will be more than eating right and exercising. But this is the hand we were dealt. I can accept that. And beyond accepting it, I can embrace it as the life that we were meant to live. I can be happy about the fact that I can look back at my life at any moment, and know that I have learned from my “mistakes”, thus taking them out of the category of mistakes and into the higher purpose of learned lessons – hence the lack of regrets. I can see that I don’t repeat the same things over and over and expect different results, as so many do who deny the Universal laws and seek excuses and someone or something to blame because they just didn’t think they needed to pull their head out of their ass.

Nope. I’ve come to the conclusion that my life is being engineered, lead, and guided by higher purpose. It is but a class in the education of my soul. And just like calculus (to me), this is a really shitty class. It’s tedious, and difficult and challenging and I rarely see the point in it all. But I know I need the credit, and I know I want a good grade. I know I am capable of it, and even though it’s got me staying up late, wired on caffeine, and stressed out studying what seems to be pointless – I paid to go to this school. And I’ll not waste one penny of my “tuition” blowing off my classes, goofing off or failing my exams. There is a supernatural curriculum, and in this I trust. I don’t have to understand it – I just have to live it.

When taken as a whole, it’s not so bad here. Lots of opportunities to party with your friends, decent enough accommodations, professors that can be anything from a wise person to a little Pomeranian dog – keeps things interesting! Lots of elective opportunities for creativity – seeing the art in everything. If we just relax in knowing that the supervisory committee that planned this knew what they were doing, we don’t have to stage any protests or riots, or bring ugliness and dissent onto the campus. We can live in peace with the knowledge that one day when we may or may not expect it, we will hear the final bell, and it’s class dismissed. 

And I will have lived the perfect life –for me.