Hello Rajesh, Please comment or express again because I find myself "not understand" to your meaning about this article. Thanks, Rakesh. [EMAIL PROTECTED] ----- Original Message ----- From: "rajesh asudani" <[EMAIL PROTECTED]> To: "accessindia" <accessindia@accessindia.org.in> Sent: Tuesday, November 28, 2006 10:09 AM Subject: [AI] Fw: I'm not a saint, just a parent
> > ----- Original Message ----- > From: "Justice For All Moderator" <[EMAIL PROTECTED]> > To: <[EMAIL PROTECTED]> > Sent: Monday, November 27, 2006 4:09 PM > Subject: I'm not a saint, just a parent > > >> I'm not a saint, just a parent >> >> The Times Online >> November 13, 2006 >> http://www.timesonline.co.uk/article/0,,8123-2448700_1,00.html >> >> The thought hit me with such extraordinary power that my legs >> almost gave way beneath me. I walked a few steps to one of the >> benches that surround the duck pond on the edge of Barnet, and sat >> down. My heart was racing, my breathing shallow, I was covered in >> a sweat, and I thought for a moment that I might pass out or throw >> up. After a decent while I decided I would do neither. And I got >> up and went to the supermarket, for my wife was in hospital and >> was filled with a passion for fresh fruit. >> >> What if he has Down's syndrome? That was the sudden question that >> had overwhelmed me. My first child was to be born any day and >> there were complications, which was why my wife was in hospital. >> So naturally I was full of nerves, as a first-time parent must be. >> The duck-pond incident was an attack of the horrors: I imagined a >> situation so terrible that it almost robbed me of consciousness. >> Down's syndrome! The horror, the horror! >> >> Well, he didn't. Joseph was born the next day by Caesarean >> section, and has no problems beyond his own singularity of nature. >> Joe is great: Cindy and I were, if you'll forgive the word, >> blessed, and life carried on in a new and extraordinary way. So >> far, so ordinary. >> >> Seven years later we had another child. He does have Down's >> syndrome. We had been told after the second scan that there was a >> 50 per cent chance of this. I accepted it as a 100 per cent >> certainty. Or was there just a tiny, 1-per-cent pinhole of hope? >> Hope against hope? But no, I told myself, resign yourself. And I >> remember clearly another of those moments of pre-birth terror. I'm >> sure we'll deal with it, I thought, whatever happens. >> >> And they'll say, Simon, well, bloody hell, you know, he's a saint, >> the way he looks after that boy. And I thought: I don't want to be >> a bloody saint. I want to enjoy my life, not dedicate it. I have >> no ambitions at all when it comes to sainthood. >> >> And do you know what? I haven't become a saint. It's a complete >> triumph: I have found no need for canonisation whatsoever. Nor did >> I have to work hard at resisting sainthood. Unsaintliness came >> quite naturally. Eddie Edmund John Francis was born on May 23, >> 2001. He has Down's syndrome all right. >> >> He has me as his father, and his father is not a saint. His father >> also enjoys his life very much, and Eddie does not compromise >> that: au contraire. >> >> Eddie enjoys his life very much too, most of the time: he makes >> that quite clear. And when he doesn't, he makes that pretty clear >> as well. Being a child. >> >> The human imagination can do many extraordinary things. But we >> can't imagine love. Or perhaps I mean loving: love as a continuous >> state; one that carries on in much the same way from day to day, >> changing and growing with time just as people do. The great >> stories of literature are about meeting and falling in love, about >> infidelity, about passion. They are seldom about the routines of >> married life and having children. >> >> We can imagine dramas and turmoil. People make films about them. >> In our own minds, we often put together the most terrific stories >> about thrilling or devastating events that might befall us. But >> what no one can imagine is the day-to-day process of living with >> things and getting on with the humdrum job of loving. We can >> imagine only the beautiful and the terrible. We are drama queens, >> and our imaginations are incapable of giving us any help about >> coping from day to day. Marriage is not the same as falling in >> love; nor is it an endless succession of terrible rows and >> monumental reconciliations: it is about a million small things: >> things beyond our imagining. >> >> By the way, I hope you are not too squeamish. This piece is not >> going to pull any punches. If you find the idea of love >> uncomfortable or sentimental or best-not-talked-about or existing >> only in the midst of a passionate love affair, then you will find >> problems with what I am writing. I am writing of love not as a >> matter of grand passions, or as high-falutin' idealism, or as >> religion. I am writing about love as the stuff that makes the >> processes of human life happen: the love that moves the sun and >> other stars, which is also the love that makes the toast and other >> snacks. Love is the most humdrum thing in life, the only thing >> that matters, the thing that is forever beyond the reach of human >> imagination. >> >> So no, I couldn't imagine what it was like to live with a child >> who had Down's syndrome. I could imagine only the dramatic bits: >> the difficulties, the people in public places turning away in >> shock and distaste, the awfulness of a child who couldn't say his >> own name. >> >> I could speculate on the horrors of living with a child who could >> not do a thousand things. I could create a dramatic picture of >> life with a monster. But I could not imagine what it was like to >> live with Eddie. You know, from day to day. >> >> That doesn't make Eddie unique. I couldn't imagine what it would >> be like exchanging a childless life for life with Joe. I don't >> think anybody can do that sort of thing: it's not what the human >> imagination does. You imagine bits that make you proud and bits >> that make you fearful. You can imagine reading him the Narnia >> stories, reading his glowing school reports, watching him score >> the winning goal and hearing the applause after his solo at the >> school concert. But you lack the machinery for imagining the >> routine of living with a child who grows up with you. >> >> The fact is that nothing to do with love seems so terribly >> difficult when you get down to it. Nothing seems an impossible >> demand on your time, your resources, your patience, your temper, >> your abilities: not because you connect with your inner >> saintliness but because you just find yourself getting on with it: >> muddling through. Most non-parents imagine that they could never >> change a nappy. Then parenthood happens and they do it. It was the >> same thing when it came to living with Eddie. It's just >> parenthood: everyone who has done it knows it. >> >> So Eddie was born, and I have spent the subsequent five years >> living with him. Not living with Down's syndrome: what a >> ridiculous idea. Living with Eddie. Who is my boy. And that really >> is the beginning, the end of it, and the day-to-day routine of it. >> >> At the hospital, when they discovered on the scan that Down's >> syndrome was a possibility, they very kindly offered to kill him >> for us. They needn't have bothered. My wife is, unlike myself, an >> exceptional person in the field of loving and caring. Please do >> not read this as a brief genuflection, one of the ploys of married >> life. Nor is it a literary trick. It is rather the literal truth. >> One small example. I have two goldfish in my study, both the size >> of salmon. When one fish was much smaller, Cindy found him dead: >> flat on the bottom of the tank. She lifted him out and somehow >> revived him. It was a long and elaborate process, and it worked. >> That is the sort of thing Cindy does. The idea of not caring for >> something in your care is an abomination to her. The idea of not >> caring for her own child was impossible to contemplate. >> Amniocentesis? Not a chance, it puts the child at risk. And no >> matter what such a test would say about the child, she would go >> ahead. There was a life that had to be cared for. >> >> This was not negotiable. It sounds, I know, a little dreadful to >> put it this way. Certainly, I lack the courage to stand between >> Cindy and someone she loves. The Devil himself lacks that sort of >> courage. Had life turned out differently, had I been married to >> another, had that woman preferred to go the way of amniocentesis >> and termination, I have no doubt that I would have gone along with >> that, too, and treated parents of Down's syndrome children with a >> lofty pity. >> >> But, thank God, I did not marry someone else. And that left me >> with a straightforward choice. I could either say that Eddie >> wasn't part of the deal and bugger off, or I could keep on keepin' >> on with the humdrum routines of life and hope that this would be >> enough for the arrival into our lives of this unimaginable >> creature we already knew as Edmund, or Eddie. Well, we needed a >> name and Joe, to whom I had indeed read the Narnia stories, was >> especially keen on that one. >> >> A name changes everything, and even when he was in the womb we >> were not wondering about how we would cope with A Child With >> Down's syndrome. We were wondering about living with Eddie. >> >> So Eddie was born and in a week or so it became clear that the >> important issue was not how I would cope with his having Down's >> syndrome, but whether he would die. He had two holes in his heart >> and needed open-heart surgery at four months. >> >> I remember those few months of illness with great clarity: this >> little blob of life draped over my left shoulder, arms slack at >> his sides, too weak to do anything but flop. Treacherous voices >> had spoken to me during the late pregnancy: perhaps I'll be let >> off. Perhaps there'll be complications. Perhaps he'll die in >> childbirth. Knowing, all the time, that this let-off would be no >> let-off at all but a worse horror than anything I could imagine. >> Such terrible voices will speak to us and we can't always silence >> them: it is part of how we dramatise our lives. >> >> And of course, the reality is very different from the things you >> imagine. When Eddie was on my shoulder, I wanted him to live with >> all my heart: indeed, if my heart would have been any good to him, >> I'd have given it and welcome. That doesn't make me a saint, by >> the way. Just a parent. >> >> I remember the medical phase of Eddie's life before and after his >> birth, and the 24 hours in intensive care. I remember, too, the >> amazing confidence of the doctors and nursing staff at Guy's. >> Their certainty quickly became Eddie's certainty and eventually >> ours. Truly remarkable people. >> >> So Eddie lived, and lives: burly and merry and, on the whole, >> pretty healthy. And once the surgery was done and the emergencies >> and dramas were over, it was time to get on with the business of >> living. And that is really rather an easy business. You live one >> day, and then you live the next. >> >> Well, maybe easy isn't the right word. But parenthood is not >> supposed to be easy nothing worthwhile is. Down's syndrome >> brings a number of physical problems. After his operation we >> suffered all of us, but Eddie by far the most with Eddie's >> agonies of constipation, a weekly rising barometer of hideous >> discomfort ending in blessed and stinking relief. Here, and in >> many other ways, we looked for help and found it. But in an >> unexpected way. Peter Walker, a cranial osteopath, had the hands >> and the mind to help Eddie through his difficult patches, and he >> continues to do so. As Eddie belatedly began to crawl, his >> naturally lax stomach muscles tightened and the problem eased, >> just as Peter had predicted. And no one else had a clue. >> >> There are various bits of assistance provided by the State: if you >> have a child with special needs, you will find a cluster of them. >> Some of these people are great, some less great. There are times >> when we feel invaded by people with a negative mindset and poor >> understanding, dominated by an eagerness to fill in forms and keep >> their arses covered. There are times when we feel that Eddie is >> state property: a public problem that somehow has to be organised. >> >> It seems sometimes that Eddie's principal function is to provide >> employment for unpleasant and insensitive people. Steps have been >> taken, words spoken. Problems still occur and are distressing. No >> doubt there are forms and files that have us down as obstructive >> and difficult parents. >> >> Eddie's education continues at Eddie's pace which is slow and >> demands a lot of repetition. He has a few words now, a vocabulary >> of Makaton signs and a cheering capacity for understanding. He >> goes to the local nursery school, which he enjoys very much, and >> we hope that he will be at school in the next village in a term or >> two. >> >> Is Eddie's slow but continuous education frustrating? Not at all. >> Progress of any kind is enthralling. It's not about a child >> passing an exam, it's about a child growing into himself and for >> every parent that is a great and glorious thing. It has been the >> same with Joe in many ways: he hates sport, is unmusical and has >> never got on with school life. He has a thousand other strengths, >> and is improving them. That's education for you. The fact that >> Eddie counts doo, doo, dee rather than performing differential >> calculus does not affect this truth. Eddie is learning stuff and >> becoming more himself. >> >> I am not in the front line of the teaching part of Eddie's life. I >> see myself as more in the front line of arsing about. Giggling is >> an aspect of life underrated by the chartmakers. Eddie has a huge >> relish for giggles. He also loves a ball game, and our improvised >> games of chucking the ball into the wastepaper basket or kicking >> the ball for the dog are a constant delight. The dog is one of >> Eddie's special joys. He will climb into her basket and curl up >> with her, and the dog a gentle Labrador does no more than >> sigh. >> >> Children with Down's syndrome often seem to have a charismatic >> side, at least when they are up and everything is going well. >> Eddie loves to laugh, and from an early age it was clear that he >> also loves to inspire laughter. He has, for example, a taste for >> preposterous hats, and when he visits his grandfather he always >> wears his grandfather's bowler. Such clownishness is not to be >> pitied but is something that Eddie deliberately assumes, though >> not to order. >> >> Cheerful little soul? Certainly not. He's a five-year-old boy and >> more prone than most to frustrations. His need to communicate is >> acute and therefore frequently painful, when his vocabulary of >> signs and words is inadequate for his own clear idea of what he >> needs. That brings on a wounded-buffalo roaring of fury and >> distress. >> >> Generalisations about Down's syndrome are as hopeless as any other >> generalisation. The one that people good-heartedly make most >> frequently is They're very loving, a phrase that Cindy and I >> often quote to each other in the middle of a fit of the roars. >> >> It's not a matter of they, it's a matter of him. I don't have a >> child with Down's syndrome: I am Eddie's father. There is a huge >> difference between the two things. The first is almost impossible >> to deal with, the second is the way I live from day to day. I >> don't even think about it much. >> >> Eddie is lucky in many ways, not least in his choice of a brother. >> Joseph is seven years older than him, which means that they are >> not competing on the same level or for the same things. And Joe >> has his mother's generosity. >> >> He and Eddie have wonderful big-brother/little-brother games, full >> of piggybacks and tumbles and chasing and pouncing. The only >> problem arises when Eddie's charisma overwhelms a gathering, >> leaving Joe feeling a little ignored. Eddie makes everything fun >> when he's up, so he becomes the centre of attention. Joe, however, >> takes that in his stride and enjoys Eddie's social triumphs. >> >> I don't want to sound too matter-of-fact here, any more than I >> want to sound saintly. Of course it's difficult sometimes. That's >> true for any parent and, God knows, many parents have more >> difficult times than Cindy and I do. I don't, above all, want to >> give the impression that everything is easy because I am such a >> sane, balanced and admirable person. I am none of those things. >> I'm just a parent, playing the hand I've been dealt as best I can. >> >> Some bits are hard, some bits are easy, some bits are fun, some >> bits are a frightful bore. That's true of life with Eddie, it's >> also true of life with Joe. But you don't even begin to break it >> up into categories: it is the one endless, complex business of >> being a parent. You don't go into parenthood to make sure that the >> benefits outweigh the deficits: you go into it out of brace >> yourself but no other word will do love. >> >> Parenthood is not really about the traditional round-robin >> Christmas letter: Jasper is school captain and is having trials >> for Middlesex at both cricket and rugby and played Hamlet in the >> school play of the same name, while Oxford and Cambridge have both >> offered scholarships. He has just passed grade ten on the cello. >> Parenthood is not about perfection, it's much more interesting >> than that: it's about making the best of what you have. Define >> best, then? Do that for yourself, but I'll give you a clue: if you >> think it's all about A levels, you're on the wrong track. >> >> So my task, then, is to bring the best out of Eddie. That is >> unlikely to involve A levels. I know that there will be many >> harder things to face as he grows older. No doubt we will take >> these things in the order in which they come. We can imagine a few >> horrors, of course, but we will live through the actual events day >> by day. And we will continue with other important tasks such as >> giggling and playing ball and providing hats and dealing with a >> world that can't imagine the dreadful fate of being a parent to a >> child with Down's syndrome. >> >> What is it like to have Down's syndrome? How terrible is it? Is it >> terrible at all? It depends, I suppose, on how well loved you are. >> Like most other conditions of life. Would I want Eddie changed? >> It's a silly question but it gets to the heart of the matter. Of >> course you'd want certain physical things changed: the narrow >> tubes that lead to breathing problems, for example. But that's not >> the same as changed, is it? If you are a parent, would you like >> the essential nature of your child changed? If you were told that >> pressing a button would turn him into an infant Mozart or Einstein >> or van Gogh, would you press it? Or would you refuse because you >> love the person who is there and real, not some hypothetical >> other? >> >> I can't say I'm glad that Eddie has Down's syndrome, or that I >> would wish him to suffer in order to charm me and fill me with >> giggles. But no, I don't want his essential nature changed. Good >> God, what a thought. It would be as much a denial of myself as a >> denial of my son. What's the good of him, then? Buggered if I >> know. The never-disputed terribleness of Down's syndrome is used >> as one of the great justifications for abortion: abortion has to >> exist so that we don't people the world with monsters. I am not >> here to talk about abortion but I am here to tell you that >> Down's syndrome is not an insupportable horror for either the >> sufferer or the parents. I'll go further: human beings are not >> better off without Down's syndrome. >> >> A chance gathering in my kitchen: three people. My wife, who has >> some gypsy blood. Eddie. A friend who is Jewish. And the >> realisation that, under Hitler, all three would have been bound >> for the ovens. Down's syndrome, any more than Jewishness or >> gipsyhood, is not something that needs to be wiped out for the >> good of humanity. Down's syndrome is not the end of the world. In >> fact, for me it was the beginning of one. >> >> I am not here to make judgments on those who have gone for >> termination, being unwilling to cope with something that they >> could not imagine. I am here to tell everybody that Eddie is my >> son and he's great. >> >> I have a life that a lot of people envy. Mostly they envy my job: >> I am chief sports writer of The Times, and people say: you're >> going to the World Cup, you're going to the Olympic Games, you >> lucky thing. Can I come? I'll carry your bags. >> >> I live in a nice house in the country, I keep five horses and as a >> family we are comfortably off. For all these things people envy >> me. But I have a child with Down's syndrome and for that, people >> pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am >> not to be pitied but to be envied. >> >> Justice-For-All FREE Subscriptions >> To subscribe or unsubscribe, >> send an email to [EMAIL PROTECTED] >> with subscribe justice OR unsubscribe justice >> in the body of your email message. >> > > To unsubscribe send a message to [EMAIL PROTECTED] > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, > please visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Send instant messages to your online friends http://in.messenger.yahoo.com To unsubscribe send a message to [EMAIL PROTECTED] with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in
