I'm not a saint, just a parent

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Long but worth the read..

Hugs, julie

> 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. ph was born the next day by Caesarean

> section, and has no problems beyond his own singularity of nature.

> Joe is great: 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 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, 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 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

> 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. , 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 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 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.

> ph 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 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.

>

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