Monday, February 1, 2010

Passing Through the Eye of the Needle...

Jesus is easier for a camel to pass through a needle's eye than for a rich man to enter the kingdom of God.
Matthew 19:23-24

There is no greater love than this: to lay down one's life for one's friends...
John 15:13

Of course, I think alot about Ashley X's parents. I wonder about how they think...and just yesterday, I wondered about that day, that day when they realized that this child they had was going to change their lives...that they were going to have to make changes in the way they live their lives. I wonder that it scared them to death, scared them enough to decide that it might be easier to change their daughter instead and to carry on as usual...

I remember clearly the day it all hit me...I was still teaching at the time. We were about two years into coping with Sophie's newly acquired disabilities. Class was finished and I walked out onto the front steps of the school and sat down. I put my face in my hands and I cried and cried. I cried alot.

There was something about being surrounded by all those robust little kids full of beans that stood in sharp contrast to what was going on at home with my own daughter. There was, too, the fact that I was very tired from the non-stop work and stress of living two lives.

I knew that day that I was going to have to change my life. I knew that nothing was ever going to be the same and to pretend that it could be was an illusion even the most creative of individuals could not perpetuate in their mind. I knew that the longer I resisted the reality that stared me in the face day after day, the faster I would deteriorate into a tired, angry, frustrated human being.

I am a will-full woman. I don't always choose to put it into force, but once engaged, my will is somewhat akin to a force of nature. That day, I cried, I faced what had to be faced, I got up and moved a new direction. Not long after that, I quit a job that I was in love with, that I swore I would do 'til the day I died, and began taking over my daughter's care.

What has happened in the years since has been a slow, consistent burn-off of everything I thought I was, into what I am now. It has, at times, been a very painful transition, and every time I think I've acquired a modicum of balance and Buddhattude, something comes along to remind me that I still have along way to go. I have reached a point where I welcome these molding forces, this stripping down and re-building. It has lead, invariably, to better things and a genuine way of being.

Our North American world is one of wealth and entitlement. We have been programmed to believe that we deserve, or at least should have, everything we want. If we are personally wealthy, we believe we have worked to achieve it and so deserve to spend it as we see fit, whether on a half-dozen homes or lunch at a pet cafe for our dogs. Those who don't have wealth are forced to stare at that which they cannot have and yearn and crave, beg, borrow and steal to possess those things which are perceived to bring fulfillment and satisfaction. Within our wealthy nations, our poor suffer doubly from the genuine inadequacies of their existence and the force fed belief that what will make them happy can be found in a store front bloated with stuff.

In the end, it takes some serious work to abandon these perspectives and to imagine that to give up one's life to care for a child/adult with disabilities has value and can bring joy, peace and fulfillment. It's difficult to believe that one can be happy pursuing to satisfy the real needs of another in favour of those imagined needs of the self.

This is not to say that help, respite and funding are not necessary to caregivers. They are essential because the demands of caring for another draw from the body as well as from the mind and soul. It behooves society to assist in this, to partake in this enrichment of the spirit as opposed to that of the pocketbook. These people who call upon us to empty ourselves are the leaven of our world...though they do not dominate in population, they do in power to transform, to uplift and to love. We are lucky to have them among us to keep us humble and whole. When we choose to look away and shirk our responsibilities, we do so to our own detriment.

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