"isn't it great that we live in an age where communication helps us understand a problem that could (otherwise) easily engulf our personalities and kill off the greatness of kindness and sharing?" - From my response to Blogzilly.
The blogging phenomenon, on the anniversary of a new exchange.
One of the key elements that bring added hardship to the experience of providing care for a mentally and physically compromised child is the sense of isolation forced upon us. Yes, I do believe it is forced upon us because the onus is entirely on the caregiving parent to merge with daily life. But just as merging into traffic is a fulcrum for accidents, such parents are bound to crash into systems not designed for severe exceptions in a society which often goes as far as to nullify the value of a human life, because the difference is so extreme. Sounds a bit harsh? Then perhaps you are not a parent-caregiver of such a child.
Isolation works on several levels. Some of it is our own 'fault' since we are actually human, even though this may often appear not to be the case, striving to triumph in downright superhuman endeavors. No less extreme than bungee jumping or other extreme physical activities we relish watching on television. The kind of entertainment that, like a "Jason Bourne" flic, gets your adrenaline pumping and takes you on a wild ride.
But our daily lives are much too mundane to be considered exciting fare. Changing diapers, on a seizing or wildly flailing thirteen year old, who then coughs and begins choking, almost pulling his gastrostomy tube out of his stomach, I mean, how exciting can that be after all? Well, it separates the men from the boys when that diaper change is really a three man affair, not only because more than one obstacle will arise, with certainty and with an unflappable precision designed to wreak as much havoc as possible, but because the attempt to pre-emptively maintain control of the situation is a constant source of apprehension. And that's just one diaper change, an activity which is quickly supplanted by an endless variety of difficulties in basic communicaton between you and your child and your child and the world. And repetition of regular activities such as baths, getting dressed or any other daily activity that in normal lives go unnoticed as they are performed automatically, not in the mind-numbing, time-shifting consumption way we experience. I haven't gotten to issues of health yet, both the child and the parents'.
So being mundane does not mean, not exciting, not draining physically and emotionally since each normal action, known to us, here inundated with a value standing in striking contrast to how you have always known life to be. You cannot escape comparisons. You cannot say, "get used to it", because your whole body is trained to operate in a particular way and now must everyday discover a new way of doing things.
This is why the parent/caregiver of a compromised child works so hard and holds on so fiercely to any kind of consistency, be it in their child's schedule or in the ability to treat any issue in a similar fashion repeatedly. Some children need such a well organized schedule that any deviation from it causes a slip-slide into harm in the blink of an eye. Regularity of either kind acts as preventative medicine but can be very hard to achieve over a long period of time and the fear of losing regularity brings with it stress that is no less than that adrenaline rush "extreme" athletes or their onlookers cherish. Strangely even when we know severe injury can result we associate the sports spectacle or even participation in it as something worthwhile.
Yet when we participate in extreme parenting or caregiving there appears to be little interest. There appears to be no social justification for me to climb on my soapbox and say "look at this!", as though I just jumped my motorcycle over twelve buses. But sometimes that's exactly what it feels like. And the crazy thing is, that because it's bloody difficult to do, I want to share that experience with others. They may learn from it. They can certainly learn from my mistakes as well as triumphs. But the big difference with the armchair viewer of extreme sporting events is that those strangers out there reading about my adventures are exactly the same as me reading about their adventures. We are participants in the unrecognized, most underrated and underhyped profession since the hunter-gatherer made its appearance.
We are providing a service which is as yet unrecognized. Call it delusions of grandeur if you wish, but the ability to care for someone under extreme conditions, to deal with this painful issue of unconditional love is a significant element of humanity that stands as a stark reminder against the bullish individualism and technocratic intimation of society to come.
There are many out there who lead this life of stern commitment to "raising" their child at home despite the hardship. But we know how much doubt is an element in our daily lives, not the least of which, giant philosophical questions of understanding the place of Will, how we understand our connection to the world and act upon that understanding, whether we believe outside forces, seen, in systems of healthcare or government or social interaction, or unseen on a metaphysical level, influence us. Uncertainty of how what we have achieved will find continuity if something happens to us.
We have a basic need for certainty in life. Some will say, there is no such thing. The appearance of certainty is really what anyone has. Most ground their certainty with their membership in a group. This group is either bound by activity, philosophy or appearance. We have such a group as well. The common denominator is our children and our belief that their special circumstances require special measures to deal with them. It's a giving thing. And we give. We can't ask for anything in return.
So now comes this technology where I can write about my experiences and read others' reports, comment on them as well receive complete strangers' thoughts, some of whom have similar escapades but often different notions. The ability to communicate is not new but this particular forum of interaction also helps to build the identity of 'the group'.
Whether anyone decides to rightfully claim membership in a kind of 'fubar' club, such as half-jokingly presented by Ken, I am in some wonderment at my own statement, the quoted comment at the opening of this posting, because one year after returning to active blog duty, I found out that I began by writing letters to strangers but across time and space a special kinship has been established which is certain to change our place in society, if we firmly believe it should be so.