May 28, 2011


It is a life of celebration. Of fortitude and yes also of servitude. He serves his inability to neither understand nor cope with even basic functions of life and I serve the understanding that life is worth having, something I know to be true, although I can’t quite prove it yet.
It is a tiny life of infinitely small instigators of great pleasures wrought from insignificant daily occurrences.  A touch, a smile. A bath. Pain relieved, again and again.
It is a binding life where connection is survival. Yet where language, which so undeniably enriches our experience holds almost no meaning. When I say, “Hey! Here is your friend Pluto. He is barking, woof, woof, to say hello. Because that’s how dogs say hello”, merely a cacaphony of sounds meaning only “Pluto says hello”.
It is a hermetic circle, where few ideas ever enter and no person ever stays. No relationships can be developed, no vacations had.  Proper sleep cannot ever enter this circle of bravado.
And so, lost in the care over my son, losing most perspective on normal life, the soul may shine or wither, in any case hidden from view. And so, for the last few months I have swum in the eyes of doing nothing, fearful not to plagiarize myself in expressing the difficulties that continue unabated, grasping with hard hands at understanding, “fingers curl, that pallor of skin wills not mystery to unfurl” neither to demonize nor sanctify struggle.
It is a small life with moments of true happiness, gladness, anguish and pain, each and every day. A circle made of circumstances that slowly close around your entire being if you don’t watch your step, if you don’t know beforehand what pitfalls to look out for.
It is such a small life of such small requests. Not for ‘no complications’, ‘no pain’, ‘no seizures’ but for requests of fewer complications, less pain, less fierce seizures.
The more knowledge you gain, the more worry blankets you. Well wishing soothsayers bring forth arguments of “temporary life”, “care for yourself”, “the future is bright”, like placards of protest strewn about the street after everyone has left the rally.
What really needs to be small, even tiny, is the distance between knowing there is a state of suffering you must do your best to usurp and understanding that a pleasant, quality life is an absurdly wrought misunderstanding you must do your best to translate.

May 08, 2011

The question of inner life as force majeure

   Can we take any of it with us? I can’t remember

So, the inner life, like a dream filled landscape will always resound richly of our efforts and understanding, but stark in contrast to what reality we can employ.

The question of inner life as force majeure for parents who naturally are confronted with their children’s incongruous state seems to me the crux of the issue.

What we want for our children, naturally, is not to be disadvantaged. But they are ill equipped to challenge life in the way that we do. Instead life challenges them, sometimes in an absolute way, as a struggle for life itself.

Basic human rights have little foothold in basic societies possessing rudimentary and wholly inadequate means of supporting its population.

Nature has all the answers, whether we like it or not. Nature is never right or wrong, nature does not philosophize. We strive to set ourselves apart from nature and the world we have built is the result.  All civilizations being based upon armed conflict, from the spread of Greek demokratia to the freedom of the industrial revolution, expansion and enforcement have preceded calm and understanding.

By this token of thought, the very struggle of parents of severely physically and mentally compromised children for a place of honorable standing, as a luxury of affluent society, does not stand a chance even as a velvet revolution.

This is not to say that people by nature are not also compassionate, but the essence which drives the society successful in maintaining its population is a forward motion of growth. Growth, when impeded, prevents a smoothly running circuit of collaboration. Or thus is our perception.

Correspondence: to achieve an understanding of a person’s needs and attend them with the appropriate remedy

The inner life of a parent attending to the needs of a severely compromised child is necessarily richer than someone who does not because the difficulties encountered in that living are inexorably connected to the complex emotional quality of preserving one’s child, in contrast to what is accepted.

Thus the physical burden of caring for a child who cannot metamorphose into an independent, average person, being compounded by the emotional stress that protection carries.  This creates a kind of staccato psychology in the parent since they are isolated in their unusual concerns, truncated in their normal social interaction and finally for the most part, left alone to savour their difference from the mainstream.

We value individuals whom are able to redefine the boundaries of our human existence yet running the 100 meter dash ever faster doesn’t further our established dominance in the naturalistic need for survival. Fantastic feats of engineering need not be questioned, we do because we can.

Severely compromised children with physical and mental constraints also can. Of course if we want them to be judged not by their proprietary nature but by the same parameters as the majority is, then they simply can’t.

But this isn’t my new-ageism; as in ‘we are all unique, celebrate the differences.’  

The Special Olympics are of note here where that event tries to take a very heterogeneous group of compromised individuals and equate their abilities according to time or distance as though they have the same starting point.

Just as we often give great deference to those that pass from life, bestowing upon them even the notion of immortality but fail to find how they are due honor and respect while living.

If I were interested in this inglorious immortality I would have given up on my son long ago.

As it stands we are here, alive, to deal with the cause of living. And to my mind there is no reason to believe that a priori, one life is innately valuable while another is not.

It is clear to me that parents of compromised children will always carry that complex emotional burden that will not be understood by those without similar experience.

These parents must jockey for position in a more and more regulated society, which paradoxically creates  more and more individualistic tendencies and outlets, making us less and less patient for those that cannot, or often in their eyes, will not, conform to the standard.

When a child is sick with a severe illness, especially those more readily acknowledged in public consciousness since they are shared with adults, there is a great deal of understanding, but the often inner struggles of a parent of a compromised child are in part inner, exactly because the difficulties are not understood, not accepted.

While I accept that pain and suffering and a shortened, severely limited life are part and parcel of my son’s existence, as an evolving species, developing our concepts of societal living, it is necessary to continue to define what quantity and quality of pain and suffering is necessary.

And here death is not the answer; life is the answer.