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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.
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I am feeling every word you write. My son Jacob was born in April, a week later he was diagnosed with down syndrome and AVSD. Four weeks ago he had heart surgery and he is doing amazingly. He is not how i imagined my baby to be, he is one million times better. Thank you Jacob for being you. x
lorna greig, hastings, england
I was reading an article at the Discovery Institute's site having to do with legislation attempting to curb euthanasia. Your article was quoted, so, having a 27 year old son with Down's, I looked it up. I must say that you are a man of uncommon wisdom. I have passed the link to your article around to all my friends who know my son Jeff. They all agree that Jeff is a terrific blessing and appreciated your articulate expression of that fact.
Now that Jeff is grown, I don't hear, "They are very loving," so much. But it used to make me want to puke when people attempted to console me with such words. Yet, God has certainly used Jeff to teach me how to love.
Eric Stahl, El Cajon, USA/ California
I have a story very similar to yours. My son is Andrew is 16 years old. He had an AVSD repair at 5 1/2 months. We have shared similar feelings. I was amazed when I read your words about your feelings when you were told there was a chance he would not live because of his ailing heart. I experienced similar feelings. Thank you for sharing. Andrew thanks you for your kind words.
Rita Ristucci, Woodbridge, Ontario, Canada
I read your article with interest. I too have a son with Downs Syndrome. Joshua is 4 years old and has just started mainstream school where he is doing very well. Reading your article a lot of things you said hit a chord with me. Josh also had open heart surgery as a baby and the first 2 years of his life was a trying time medically. But, as you say, you take life one step at a time and do what you need to do and you get through it. I love my son to bits and would die for him but I would also give my life for him not to have Downs. Not because I am ashamed or embarassed or afraid of the hard work it entails but because I want him to be all he could be - I want him to have the chance of a future where anything is possible and everything is available. I want Josh to be a footballer if he wants, or a musician, or run for parliament or even be the prime minister. And I would do anything to allow him those choices. But I love him no less that he cannot do those things.
I Jones, Rugby, Warwickshire
Good for you and your girlfriend, Christopher. I too had an amnio at King's and although they are clearly proponents of termination in a positive diagnosis (my son also has Down's - and it's NOT the end of the world as I'm sure you know), I didn't have anything like the outrageous comments you and your girlfriend received.
I'm disgusted and appalled that professionals who are in the position of trusted advisor in these situations give such outdated, biased and negative advice.
Good on ya' for not listening to them. Enjoy your baby when s/he's born and know that there are lots of us parents out there who also chose the same path as you. :-)
Sarah Burnage, Chelmsford,
I have just rough few weeks, my girlfreind is pregant with a child with Downs. This to me was my greatest fear as my brother had it. The odds I was told were 64,000 to 1. After I heard the new I thought 'why me' my mother out that to bed with a quick retort of 'why not'. Only last week we made out decision.
It was not easy; it was the German consultant at Kings who made the decision for us. After seeing the scans and researched the sentience of the child, we wanted the facts not opinion. Despite this she offered to stick a needle in its heart and induce it 2 days later. The consultant said there is no such thing as a good Downs, 'don't fell attachment 'and it is better to try again, also that she could be referred to a psychologist to get over it and best of all Doesnt fit the norm get rid of it.
It has been a long tiring couple of weeks and honestly I'm still a bit shattered emotionally and physically.
We decided to keep the child as it is just that.
Christopher Irvine, Romford, UK
Thank you for writing this. My 5 month old daughter also has Down syndrome and I keep coming back to read this piece. It's helped me focus on what's really important...my daughter is not a diagnosis; she is my daughter and what lucky mom am I!
mjm, atlanta, ga
Neither of you live in Australia.
Our lives were terrific until my daughter grew up (21 now)and we discovered that Australia does not give a damn.
I cannot work because I cannot get services, my daughter also developed a mental illness - something my state of NSW ignores - no services, no help no future.
I am a sole parent, have been for 15 years and have not been able to work since my daughter turned 12 - no after school supports.
We live in financial poverty, I love her immensely but is that enough?
When your government abandons families, dumps you on a pension of $255 per week and a disability carers payment of $47 per week simply because they can get away with it, then life together is not a rosy picture.
They say money cannot buy you happiness but it can buy you a life!
My government has made me a 'carer' when all I wanted to be was a mother.
We don't have carer/family advocacy because the policy is isolate at all costs, this is how they get away with it.
Nell, Sydney, Australia
I have a beautiful 5 year old daughter Millie who also has Downs syndrome and want to thank you for your honest and open article. Living with Millie is full of challenges but having nearly lost her on several occasions when she was a baby I am grateful for everyday with her. She brings so much love, joy and pleasure There are many times when I want to scream at those whose supposed role is to help and who deem themselves the professionals as they are so blinkered and short sighted that they dont see Millie as a loving, giving human being but simply a set of symptoms. Hopefully by battling their prejudices we make life easier for those who follow??
Gail Moody, Stamford, England
I am a Florida mother of a 21 year old son, Daniel with CP. He is physically impaired, uses a motorized wheelchair and augumentative device, called a Dynovox, to communicate. He is very computer savvy and attends a "tranistition to college" program. My husband and I actually live your essay.... I wish that I could have written about our lives as eloquently as you did. We also feel quite blessed by all of our 3 sons (we have an eldest named Joe too). Wouldn't trade or change any of them. Okay, actually I would love to hear Daniel call me "Mom" with his voice rather than using his Dynovox....but, that is about it. Our Daniel brings out the best in everyone and is loved by all who know him. My biggest fear when he was diagnosed was what will the future be like. Well, I can report thatGod has met our every need. We continue to be thankful and live blessed.
S. Simonds, Winter Haven,