The question of inner life as force majeure

This is a repost from May, 2011. I have also added a paragraph originally not included.

   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. Remember it still crowns a winner.
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.

To the parents of "special needs" children, to the Fathers and Mothers who attend, in whatever capacity, to their children (whom we know to be not fragile but rather, supremely resilient) I would ask, how can we shift the attention, our attention, from the magnificent endeavors of formula one drivers, extreme athletes, film starts and a myriad other diversions towards a social consciousness of celebrating the tenacity, the difficulty, the simple beauty of this life, without the fear of being left behind?
Our main focus should be to establish a paradigm shift in the devolving sense of community, perpetrated by distraction. A sense of belonging which in past was taken, and in part we ourselves maintain as protective measure.

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. Here closure, accepting death, is not the answer, the search for a better life is the answer.