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 King’s 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 Down’s, '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 ‘Doesn’t 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 Down’s 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 don’t 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,
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 King’s 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 Down’s, '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 ‘Doesn’t 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 Down’s 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 don’t 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,