Down's Syndrome is not the end of the world

Hello Everyone,

I read the following story and had to share. Story is well worth the read and has valuable lessons we can all learn from. I look forward to hearing your thoughts.

Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/

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 dramatize 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.

Comments

[Jake Joehl]

Hi Bill. What a nice story. I have several friends with Down's syndrome, one of whom is a neighbor of mine. They all lead very normal lives.

[Lianna]

Our son, Gabriel, who is 20 months old, and who has Down syndrome, is our only child. The journey we have been on for the past two years has been an incredible one, full of joy, and fear, and hope, most importantly love.

And the author is right: you do get on with the business of living. This is so because a child is born, and a child first. I remember when my husband and I found out about Gabriel having Trisomy 21. I was 20 weeks along in my pregnancy, and it was difficult to imagine anything but the horrific.

Oh, how I regret wasting the tears and the heartache over the news. Once my son was born, no one could ever replace the person that made our family whole. And we do live each day, one day at a time.

Gabriel is our son. I can't imagine our lives without him as he is.

Thank you for posting the article.

Sincerely,
Lianna

[Ans Slangen]

Hello Bill,
I surfed the internet and read your story about Eddie. Wow, you're words seem to come out of my heart. But then as mother of Esther, our daughter with Down's syndrome. Born just a month after Eddie, on june 26, 2001, in Holland. How beautifully put into words what I also experience. The thought of Down's syndrome is much worse then living our life with Esther.
I also write a weblog about our life with her and with our other daughter. Although it is written in Dutch, you might want to take a look. Just to see her eyes on one of the photographs. Just go to http//ans.volkskrantblog.nl
Thanks!
Sincerely,
Ans

[katria Lipscpombe]

well i have a brother that has downs i love him to bits hes a pain in the arse most of the time but i think all brothers are really! from having robert as my brother its made me mature and understanding. i love having him around god i cant begin to imagine what life would be without him! i wouldnt change him at all!
Im not the type to get into fights but if anybody says anything about robert i get so annoyed there is no need but i have come to understand that people only say bitchy things because they dont understand! tomorrow i am doing a talk on my brother in english i hope it will make a few people more aware!

sincerly
katria

[Bill Tipton]

Hello Katria,

Thanks for taking the time to share with us.

Robert sure is lucky to have you. You mentioned you were going to give a talk on your brother. How did that go?
What kind of things did you tell the audience? Do you think they learned some?

Does anyone else have stories to share about Down's syndrome? As we have seen Down's syndrome should not stop you, or the ones you love from cherishing life. Just because I cannot see anything, cannot walk without the help of two canes and suffer from other medical conditions; I try not to let this discourage me from cherishing life. ?

We look forward to hearing from you.

Bill Tipton
Contributing Author,
Global Dialogue Center
http://www.globaldialoguecenter.com/

[lily]

you must have it pretty easy with your wife willing to make the sacrifice to care for him, i dont think you would "enjoy" him so much if YOU had do it.You must get plenty of free time and have the money to afford all the extra financial burden of having a retarded child.My child also has downs syndrome (age 3). I have already raised two girls age 12 and 5 who were a total joy to rear and when it was just the three of us all was well. But i have to say truthfully, i hate it that my kid is too stupid to get the most basic concepts..cant speak..STILL in (expensive) diapers and doctors say she may wear one till she is 6!!!..didnt walk till 3...UGGGHHH..who are you people kidding.My life is miserable with a brain damaged child...this broken person i now am stuck parenting for the next 50 years.My life ended the day she was born.She will never have a normal life and neither will yours. I pity all who have this burden. My older girls are constantly frustrated by her and resent the extra load it creates for them too. If only i could go back in time...

[alice mc polin]

i have never read such a sick letter in my life. I have a beautiful daughter who has downs and is three. She is so precious and I truly thank God for her. She had heart surgery aat four months and is doing really well now. The author of the above letter must be a selfish horrible person. Either that or severly depressed..........

[Bill Tipton]

Hi Alice,

Thanks so much for visiting and taking the time to read and provide your thoughts and comments. There has been a quite a round of conversation on this post. Each person's perspective adds to the mix, helping us all learn and understand one another better from different vantage points.

I am so happy that your loving 3 year old daughter did well with her heart surgery. I do not know you’; but you sound like a very caring and loving mother and I am very happy to have gotten to know you, just a little.

Alice, I wish you and your daughter all the best.

Does any one have any other comments? Any stories to share? We all look forward to hearing from you.

[Angela Slaney]

Hi, My beautiful daughter, Charlotte, has Down's syndrome. She will be 16 years old this Sept. I wrote the following when she was just a few months old. I've never sent it to anyone but it might be of interest to somebody out there. We went on to have our son, Tom in 1994 and he is now nearly 14 years old. He doesn't have Down's by the way. He's the best brother ever to his sister. Here goes: Chris and I married one month before Christmas in 1989 and when we walked down the aisle I was twenty five years old and working as an accounts assistant in the motor industry.

I’d endured extremely painful periods for several years and early in 1991 I had diagnostic surgery which showed that I had a condition called Endometriosis, a relatively common state in which tissue resembling the lining of the womb, the endometrial tissue, is present in an abnormal position in the body, that is, outside the womb. As well as causing pain and discomfort it can also cause infertility and often requires surgery. My Consultant gave us two choices; a course of treatment which would include suppression of the sex hormones (as endometriosis appears to be oestrogen-dependent; these would include the combined oral contraceptive pill, danazol and gonadotrophin-releasing hormone analogues plus surgery which would be performed either laparoscopically or through open incisions, depending on the extent of the disease. Or; no formal treatment need be given but he informed us that bearing in mind the threat of infertility he advised us to think about starting a family “sooner rather than later” as pregnancy (if achieved) often slowed down the condition. Phew! A bit of a bombshell for a couple who’d only been married for just over a year.

I didn’t like the idea of taking a cocktail of testosterone and steroids so I left the hospital with a heavy heart and armed with nothing more than strong painkillers. Chris and I had to seriously rethink our “plans” and after a couple more episodes of horrendously painful periods we decided to try for a baby. Thankfully just after Christmas that year I was pregnant with Charlotte.

Whilst I was expecting her I had the most wonderful time, I really enjoyed being pregnant. I felt so special and very proud of my ever growing tummy; in fact Chris and I nicknamed my bump Squidge! I gave up my job on June 30th, by then I was about six months pregnant. I had a glorious summer preparing for the arrival of our baby. I decorated the spare bedroom and turned it into a nursery and spent my day’s folding and refolding the tiny baby clothes that had already started to pile up. By the middle of August I was suffering chronic back pain and I felt decidedly uncomfortable for a few weeks but my spirits were high as I felt the baby moving more and more with each passing day. The Braxton Hicks contractions were now quite strong and I had the occasional panic about whether I was in labour or not.

My GP reckoned D-Day should be around 2nd October, however on Monday 21st September I went to bed at half past ten only to awake at half past two in the morning having pretty strong contractions which were five minutes apart. I got up and went to the loo, paced up and down and finally woke Chris at half past three to tell him that I thought baby was coming at last. He wanted to phone the hospital straight away but I wouldn`t let him in case it was just a false alarm.
However at half past five the contractions were still as regular and a lot stronger so I gave in and phoned the maternity hospital only to be told by the midwife on duty to take two Paracetamol and have a warm bath and then phone them back after breakfast. I felt wide-awake by then having been up since half past two, so I got a shower and then climbed back into bed next to a snoozing Chris. I tried to listen to some music but my contractions were too distracting by then so I just laid there and tried to get back to sleep. I think I only managed to snatch about twenty more minutes though. At seven o'clock I got up and left Chris asleep in bed and went down and made myself some tea and toast and watched Coronation Street on the video which I had recorded from the night before!

After breakfast I phoned the hospital again and as I was giving the midwife my details I had another painful contraction, she was really nice and told me to lay the phone down and breath through it until I could continue talking to her, then when I'd caught my breath she told me to make my way there and take my suitcase with me. Next I phoned my Mum in Withernsea just before she left for work. I told her that I was in labour and that Chris and I would be leaving for the maternity hospital shortly, then as I was talking to her a contraction came on again and she was telling me to remember my breathing too. People say you do some funny things when you are in labour and they're not wrong, I was tidying up and fussing round like a mad thing before we left for the hospital. All through my pregnancy I had imagined that I' d go into labour and be taken to hospital during the night, however as it was broad daylight by then, I made Chris carry my suitcases out to the car and then he had to come back indoors and wait five minutes before I would get in the car!

It only took a few minutes to get to the maternity hospital on Hedon Road which was just as well because my contractions were pretty strong by then. We checked in at quarter to nine and a nurse called Mary came and showed us to a delivery room. She gave me a nightie to change into and put a name tag on my wrist. Then she examined me and announced that I was one and a half centimetres dilated.

"Is that all?” I said
"That's good progress." she said
"Can I stay then?" I said and she laughed and said, "I think you ought to, this baby will be coming today you know! I calmed down then; I'd been scared that it was a false alarm so to have the nurse confirm that I was actually in labour was a relief. She hooked me up to a machine which monitored mine and baby's heartbeats and the duration and strength of each contraction. I was laid there in agony while Chris took great delight in reading the printout and in telling me when I was having a contraction. He would say, “Ang` a contraction is coming now!” to which I would reply through clenched teeth, “I do actually know that!”

The nurses more or less left us alone for the remainder of the morning. Chris went off to the papershop for a magazine each for us to read while we waited and at Midday he went across to the canteen for some lunch. I wasn't allowed any food because I had asked for an epidural which was coming later apparently. However, Chris bought me a bar of my favourite white chocolate and I sniffed it during contractions! I tried to doze but I was just too excited. This was it! The day we had waited for, for months and months. Chris was the only one who managed to grab forty winks. It was quite funny because he was sat in the chair and laid over onto my bed and dozed off. The midwife, a different one by then as the shifts had changed, came and examined me and he never even woke up. When she came back later on at about quarter to three to get me ready for the epidural she had to nudge him to wake him up and ask him to move!

Setting up the epidural took about twenty minutes or so and another fifteen minutes later I could only feel soft waves as the contractions came and went.

I dozed on and off for a couple of hours and at about seven o' clock the midwife came back and examined me and said I was about nine centimetres dilated. She told me that it was best to let the epidural wear off a little because it was nearly time to start the hard work of pushing baby out. I felt a little scared when she said that. Things were starting to happen very fast and I felt a little out of control. I was also frightened of feeling a lot of pain, but I need not have worried because while the midwife was out of the room I felt a sudden urge to push; I told Chris and he said, '"Well perhaps you'd better wait until she comes back". Just then she came back anyway so I told her, “I think I want to push, is it alright to?" (A ridiculous question!!??!!) "That's okay sweetheart," she said, "If you feel like giving a little push you go right ahead." So, nervously, I pushed a bit, then a bit more, then a bit more. Two midwives had joined us by then and Chris was holding my hand. I glanced at the clock and it was about 8.30pm. How time flies when you're having fun! It was all happening, "We'll have this baby out by nine 'o' clock." said one of the midwives, "Now give a nice big push." said the other. "Ow!" I said, "My ribs hurt, no-one told me that my ribs would hurt this much." Chris looked flushed, “Shut up and push” he said excitedly, “I can see it`s head!” So I pushed for all I was worth and then I heard a squawk and a cry, the baby was out, I'd done it!

Chris: “Ang` it's a little girl!”

Me: “God she looks just like me!”

Chris: “Hello there!”

The midwife wrapped her in a towel and passed her to me. I was laughing and crying all at once. "Have you decided on a name for her yet?" asked the midwife. “Charlotte Edna.” I replied, through my tears. The mixture of emotions was overwhelming. This beautiful little girl, so tiny and smelling so sweet and new was all ours.

But then I realised that Charlotte was blue and she wasn’t just crying a newborn cry. She was screaming and gurgling as if she were fighting for breath. “We'll just clear her airways, it won't take a moment.” said the midwife. She took Charlotte from me and as she lifted her up I looked at her and I knew. Our precious new baby had Down's syndrome.
A doctor had arrived by then and he said that they'd have to take Charlotte to the Special Care Baby Unit for a little while. They weighed her first, seven pounds and six ounces, by then she was really upset and gasping, "Just take her there now, never mind about weighing her," I cried. But it was hospital policy that all newborn babies must be weighed and tagged in front of the parents and so the midwife got Charlotte's little bracelets ready, "Baby of Angela Slaney, 22/9/92, 2106hrs, 3.35kg". She put one on her wrist and one on her ankle.
It was twenty past nine. They took her to the Special Care Baby Unit. I felt numb and empty. I had only held her for a couple of minutes. I glanced round the room and realised that the midwives had discreetly disappeared. Chris took my hand, "They know what they're doing Ange" he said, "They'll look after her, she'll be back soon." I looked at him and voiced my fears for the first time, “I think she's got Down's syndrome." "Don't say that, she won't have." He said. "She has Chris, I just know."

The door opened and the midwife came in and told us that the Special Care nurses were settling Charlotte in at the Baby Unit and that the consultant paediatrician Doctor Lewins was on call and he was on his way to see her, he would come and see Chris and me also. I needed a few stitches and after that Gill one of my midwives came and gave me a bed bath. I couldn't look her in the eye though because I knew that she knew about Charlotte being Down`s. How could I tell her that I knew too? I didn’t want to put her on the spot and she probably wouldn’t have been able to confirm anything anyway.

Finally at quarter past eleven Doctor Lewins arrived and handed us a Polaroid photograph of Charlotte laid in an incubator attached to what seemed like hundreds of wires and tubes. She was alive, thank God. He began by telling us how she was and that she had a floppy voice box which had caused her to gasp for breath because of all the mucus in her throat which they had cleared now. She was comfortable and sleeping. I remember thinking, "Oh, perhaps I was wrong." And then he spoke the words that Chris and I will never forget as long as we live, "I have looked closely at Charlotte and there is no doubt in my mind whatsoever that baby has Down’s syndrome.” Chris shook his head in disbelief and said, "Oh no". I reached for him as he sobbed for our daughter then I looked at Doctor Lewins and told him quietly that I already knew. We talked to him for a while longer but I can't really remember much of what was said. We had planned for, and prayed for, a baby. Now she was here, but we didn't expect this. It just was not fair. I was angry.

Doctor Lewins left promising to come back the next day. We asked for the telephone then so that we could ring our parents and let them know that our baby had been born. Chris was too upset even to speak so I made the two most difficult calls of my life; I hope I never have to go through anything like it ever again. I spoke first to my Mum who must have been practically sat on the telephone because she answered after only one ring. I began by telling her that our daughter was born at six minutes past nine weighing seven pounds and six ounces and that we were calling her Charlotte. She was overjoyed. Then I went on to explain that she was a bit poorly and was in the Special Care Baby Unit. Mum asked what sort of poorly? "Mum," I said, "She has Down's syndrome." She wanted to come to us straight away but I said it was best not to as we were both very tired. She said she would come first thing in the morning.

Then I phoned Chris' parents. His Mum answered just as quickly; I told them in the same way and they too wanted to be with us. My parents are divorced and as my Dad was working away and my brother was on holiday in Florida, I asked them to phone my Mum straight away. I knew that she would be sat there by herself worried sick. That taken care of, Chris and I had a cuddle; all I knew then was that I wanted to see my baby.

Chris held my hand as I was taken to the SCBU in a wheelchair. I remembered how only a few short weeks ago during our Parent Craft class we'd visited the Unit and how we had all felt such pity for the Mums and Dads whose babies were poorly. Now Chris and I were "on the other side of the fence". When we got there I was able to hold Charlotte once more, but Chris was too nervous to. It felt so good to hold her and to smell her again. I kissed her and told her that we loved her as the Special Care nurses explained what all the equipment surrounding Charlotte was for.
They asked Chris if he would like to stay the night at the hospital but he decided to go home and try and get some sleep. I wanted him to stay where I could keep an eye on him though, he was very upset and I was worried about him driving the car, but he was adamant that he would be okay. After we had said goodnight to Charlotte and he had left it was almost one o’clock on the Wednesday morning. Gill took me back to the room that I had given birth in just four short hours earlier. She was lovely and stayed with me for ages just letting me talk. Still my tears hadn’t fallen though and looking back I realise that it was because I was in shock, that and because I knew thatI had to be strong for Charlotte.

Eventually Gill left me alone after telling me to try and sleep. I tried but it was impossible. 2.30am came and went and I just couldn't help thinking about twenty-four hours earlier when I was at home and had only just realised that my labour had started. I forced the thought from my mind and laid there looking at the Polaroid photo of Charlotte wondering how she was and how she would be. Eventually at four `o` clock I pressed the buzzer and asked the nurse on duty if she would find out how Charlotte was doing.
She was back in a flash to say that Charlotte was fast asleep and "doing fine". All sorts of things went through my mind that night, I was thinking about the nursery at home and how awful it would be if we didn't have a baby to take home to it, I thought about all of the baby clothes and the little things just waiting there. And then, God forgive me, I thought, "Oh well, we can have another baby instead if she doesn’t pull through." I've reproached myself a million times for that thought since then but on reflection I realise that I was subconsciously preparing myself in case the worst happened. I love my daughter dearly, she's so precious. I could never wish her away like that. So I spent the next couple of hours praying for our babe, telling God that I didn't mind that she had Down's syndrome as long as he didn't take her away from us. Morning came at last and in breezed a nurse from Special Care take me to see Charlotte who, she said, had had a good night.

When I saw her again she looked a lot better, nice and pink and cute. And then I held her at last. She snuggled into my arms as if to say “Mummy where have you been?" I didn't feel a rush of love for her or anything like that; I hadn't even felt it when she was first born. I felt it the day I did the home pregnancy test and it was positive. Okay, so things hadn't happened the way we had planned them, but so what! As I gazed at her sleeping peacefully in my arms that morning I felt totally complete.

By now it was about half past seven and I was missing Chris. I phoned home but the answer phone came on so I left a message, put the phone down and panicked, where was he? Was he okay? I rang back, still no answer. And then just as I hung up the phone the second time the door opened and there he was dwarfed by the biggest bouquet of flowers ever. He had been at the florist’s before they'd even opened and asked them to do them for him. We hugged and then I began telling him about Charlotte and how she was doing. Together we went back to the Special Care Baby Unit and I watched with tears in my eyes as Chris held our daughter for the first time.

After I'd had some breakfast and showered I phoned our parents to tell them it was okay to come and visit. Then I went back to join Chris where he was sat beside Charlotte's incubator gazing at her. We both sat there for ages holding hands and holding Charlotte's tiny hands through the opening in the side of her crib. One of the special care nurses came along then and I asked if I could breast-feed Charlotte. She was really nice; she explained that she had to try her with a bottle first to see how she coped with swallowing after having been so poorly. We watched as our daughter had her first ever taste of milk.

Chris' parents had arrived by then so he'd gone to meet them. Meanwhile Charlotte took to the bottle well so the nurse pulled a screen around us and got me a comfy chair and a few cushions and laid Charlotte in my arms. It took a few attempts but she seemed to be managing to latch onto my breast. I remembered when I was eight and I first learnt to ride a bike, I shouted, "Hey, look at me, I can do it!" Well I felt a bit like that then as I breast-fed my baby. My Mum was sat beside me and I felt as though I was on "a high", I just felt so elated, it was amazing. During the night I'd begun to wonder if I'd ever feel like a proper Mum but as I sat there nursing Charlotte that morning there was no mistaking the fact. The nurse then said that it would be alright for Charlotte to meet some more of her family. I could hardly wait to show her off. My Mum and I went on ahead and when we got there my Mum's sister Judith was there too. There were cards to open and flowers everywhere. All of a sudden we were having a celebration! It quite took me by surprise because somewhere in the back of my mind was the thought that we wouldn't do all this, that we couldn’t celebrate because of Charlotte's condition. I quickly put that notion away with a few other silly ones that I'd had during the night.

A couple of minutes later the nurse came in with Charlotte and as Chris and I proudly showed off our little girl out came the cameras. When they'd all left, Chris and I had some lunch and then a midwife came and explained that they wanted to move Charlotte and I to a small five-bed ward for a couple of nights until a single room was vacant. At that stage Charlotte was in transitional care which meant that although I was always with her, the Special Care nurses would come periodically to check on her as would the ward staff once we were settled in. Chris decided to go home then and try and sleep as he hadn't slept at all the previous night.
By the time it was "lights out" I was pretty whacked, I hadn’t slept either for over two days and at that point I was scared to close my eyes for fear that when I opened them Charlotte wouldn’t be there. I'd heard about the "three day blues" and sure enough on the Friday morning, nearly three days after I’d given birth the flood gates opened and I cried buckets. A lovely midwife called Debbie put me to bed and gave me a sedative. She held me as I poured my heart out to her and finally I fell asleep. When I awoke after two hours I felt a lot better. Chris was there and the nurse said that I could be moved into a private room that afternoon. Over the next few days Charlotte had to keep on having to have her blood sugar level checked. The Special Care nurses had to do a ‘heel prick’ each time and eventually the poor little mite got so used to them coming for her blood that she didn't even whimper, she usually slept through it.

As is often common for babies with Downs's syndrome the breast-feeding wasn't going very well so I had to express my breast milk which was given to Charlotte via a tube down her nose and throat. She usually slept through that too and it was very upsetting to watch. I'd been so looking forward to breastfeeding her but the main thing was that at least she was getting some nourishment.

At one point her body temperature dropped dangerously low and she had to be dressed in vest, socks, sleep suit, scratch mittens and woolly mittens, bonnet, cardigan and then wrapped in a blanket. That was the night I sneaked her into bed with me. Then just when I thought things were getting better Charlotte became slightly jaundiced. I knew it was quite common in newborns but on top of everything else it was just too much to bear. Fortunately she didn't have to have the phototherapy treatment which was a relief.

On Tuesday 29th September we had a visit from the Doctor who informed us that the results of Charlotte's blood tests for Down's syndrome were positive. We hadn't expected any different. He was only confirming the diagnosis made by Doctor Lewins a week earlier. Chris and I already knew by then that Down's syndrome occurs because the baby has too much chromosome 21 material. Chromosomes are tiny particles in the cells that make up the body; like a coded message they carry the blueprint for all of the characteristics that we inherit. Half of our 46 chromosomes per cell come from our mother and half from our father. The baby with Down's syndrome has an extra chromosome 21, making 47 in all.

He went on to explain about the different forms of Down's. Up until we had Charlotte we thought, like most people, that “Down`s was just Down`s” but apparently there are three types;

Standard Trisomy (Trisomy 21) accounts for about 96% of people with Down`s syndrome. The parents have normal chromosomes, but the baby has three rather than two chromosomes of pair 21. It usually results from a “mistake” in the division of the egg or sperm cell.

Mosaicism is rare and accounts for about 3% of people with Down`s syndrome. The distribution of trisomic cells is patchy with different chromosome counts – 46 in some cells and 47 in others. This arises when some of the cells in an early developing baby divide abnormally. Being a mixture of normal and Down`s cells, such a person may show only partial features of the condition and may be less affected than other people with Down`s syndrome.

Translocation Down’s syndrome is very rare and can take several forms. It is observed in only about 1% of people in the “Down’s population” Firstly number 21 chromosome becomes attached to another chromosome after an initial small break at the tip. In about half the people who have this kind, the translocation is a unique and sporadic occurrence and does not imply a high risk of recurrence in future pregnancies. In the other half, however it happens because one or other parent, though having a normal balanced chromosomal make-up, happens to have one of the number 21`s translocated (or stuck on) to another chromosome. In the latter situation the risk of recurrence of Down’s syndrome for the parents concerned or for other members of the family with the same translocation can be quite high. Either parent can carry a translocation without showing any of the symptoms because he or she still carries the correct amount of genetic material, although some of it is out of place (translocated). The child without Down’s received only one chromosome of pair 21 from each parent. A parent with a translocation can however pass on his or her normal chromosome 21 plus the out-of-place (translocated) chromosome 21. This gives the child too much 21 material.

And then the Doctor dropped the bomb-shell. Charlotte had the translocation type of Down's and he gently advised Chris and I to have genetic counseling. I had a bit of a cry then but I don't think I fully understood about the translocation at that point. It sunk in gradually over the next month or so that if our blood tests proved "bad news" we would probably never have any more children. The occurrence of Down’s and in particular the specific type of Down’s in Charlotte, was obviously a huge surprise to us when she was born. The rarity of her type of Down’s in the worldwide population of people with the syndrome only makes her even more special to us. Chris and I brought Charlotte home that evening and while it felt scary to be away from the nurses it was wonderful to settle her into her nursery at long last. The cards and presents were flooding in and Charlotte's bedroom was beginning to look like Toys ‘R’ Us!

In the middle of October Chris had to go to America, to Paris Texas for two months with his job. We'd known about it for months and after thinking about it long and hard we decided that he should still go as he'd only been in the job since a week after Charlotte's birth. After all we still needed “bread and butter on the table”. It was very hard saying goodbye knowing that we wouldn't be together again until Christmas but the weeks seemed to fly by as Charlotte and I got into a routine. When I first had her I thought that having a baby with Down's syndrome would mean that she wouldn't do much, wouldn't laugh, play or splash in the bath, all the little things people often take for granted with their
children. How wrong I was! Charlotte's personality shone through straight away and before long instead of feeling only sadness about her condition I would be laughing at some funny thing she'd done, it was her who got me through those first few months.

An ultrasound scan on her little heart in the November proved okay and apart from a very faint heart murmur which we knew about, she was okay. That was a nerve-wracking day though. Jean, my Mum-in-law, came with me and I felt so anxious as the Doctor scanned Charlotte. I was so relieved when it was over that I collapsed in tears afterwards. Chris phoned that dinnertime and I told him the good news as I cuddled Charlotte and gave her a special kiss from her Daddy. The next day was our third wedding anniversary and Interflora delivered a basket of fresh flowers from Chris. He'd sent a card too and at the bottom he'd written, "I'll be home in four weeks time, I love you, and thank you for our little girl".

By now Charlotte was completely bottle-fed. I'd hired an electric breast pump from the National Childbirth Trust but my breast-milk was diminishing rapidly. It really upset me that I hadn't managed to breastfeed her totally. For a while I even felt like a failure as a mother but my health visitor was very sympathetic and practical and she helped me to see sense. At least I'd managed it for a couple of months and that was better than giving up right at the very first hurdle. I'd known all along that I might have to put Charlotte onto formula milk eventually and now I couldn't put it off any longer. I was absolutely worn out expressing my breast milk every couple of hours day and night. I'd been desperate to feed her myself. Breast is best as they say. Even now I have to keep telling myself that when I feel wistful about it.

Chris' home-coming was lovely. I made a banner saying “WELCOME HOME DADDY” and decorated the Christmas tree, our lounge looked like Santa's Grotto with all the trimmings up and Charlotte loved them! When he walked through the door that afternoon we held one another close for the first time in nine weeks. Charlotte looked at Chris and gave him the biggest most beautiful smile. She knew her Daddy was back. Our Christmas was great. Charlotte was spoilt rotten by everyone, I've never seen so many presents just for one little person.

On January 7th 1993 we took Charlotte to see Doctor Lewins and he was very pleased with her. She was pulling to sit-up and weight bearing on her little legs. He told us that her muscle tone was quite firm for a baby with Down's syndrome. Samples of mine and Chris' blood were taken to send away to test for the translocation and when he told us to expect the results in about four weeks he might as well have said four hundred years. So we went away and arranged Charlotte's blessing which was held at the United Reformed Church in Withernsea where Chris and I were married. I attached my wedding veil to Charlotte's christening gown and she looked so beautiful.

The service was lovely and I cried my way through most of it. The Pastor explained the meaning of Charlotte's names: Charlotte is of German origin meaning "Noble Spirited" and Edna is of Hebrew origin meaning "Pleasure".

On February 12th we received a letter from Doctor Lewins, Chris and I had agreed that we would read it together............

"Dear Mr and Mrs Slaney, I am writing to confirm that the blood tests performed on both of you are entirely normal and as a consequence therefore, the abnormality present in Charlotte is completely out of the blue in her.
Yours faithfully, M J Lewins"

.........The relief was enormous; Chris and I felt as though a giant weight had been lifted from us. Charlotte was still in her cot so I went in to her, picked her up, cuddled her and said, "Well kiddo, it looks like you'll be having a brother or a sister some day after all."

When you're pregnant you just think that you're going to have a perfect baby and that'll be that, but if there's one thing that I've learnt, it's that there are no guarantees in this life. Yes, it's scary at times being the parents of a child with Down's syndrome, but I'm sure all new parents have felt overwhelmed by the responsibility of a tiny baby. Every time Charlotte coughed or sneezed I panicked and I still do. Every night when I tuck her up in bed I say a prayer for her. It took months for me to realise that it was alright to grieve for the baby that I thought I was going to have. It's been very hard and extremely painful to come to terms with my emotions especially the guilt I felt at first. I love Charlotte so much, I couldn't imagine my life without her in it but even now I sometimes wonder what it would be like if she didn't have Down`s. Then I quickly feel selfish for the thought. It`s her life and she’s fine. She's happy and well and she's so very very loved and loving.

[Bill Tipton - Life and Work with a Disability BLOG]

Hello Angela and all

Angela I loved your story and really appreciate you sharing your story with us. You can read my comments at below URL.
http://globaldialoguecenter.blogs.com/disabilities/2008/02/celebrating-cha.html

We all look forward to hearing from others.

Bill Tipton
Contributing Author
Global Dialogue Center
http://www.globaldialoguecenter.com/

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People with down's syndrome still have the possibility of follow a normal life.

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well i have a brother that has downs i love him to bits hes a pain in the arse most of the time but i think all brothers are really! from having robert as my brother its made me mature and understanding. i love having him around god i cant begin to imagine what life would be without him! i wouldnt change him at all!
Im not the type to get into fights but if anybody says anything about robert i get so annoyed there is no need but i have come to understand that people only say bitchy things because they dont understand! tomorrow i am doing a talk on my brother in english i hope it will make a few people more aware!