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Post by Chris on Jul 26, 2005 16:53:53 GMT -5
Carolyn ~ Well said although I have to disagree that doctors do not advise their patients after their prenatal testing results. Too many of us have had very bad advise from doctors. I think that is where Bob believes they need to be educated. Women are not given accurate information about Ds and are many times persuaded to terminate their pregnancy when given a very bleak outlook for their child.
Bob ~ I don't know how we can discuss prenatal diagnosis without abortion also being discussed. Unfortunately, too often, they go hand in hand.
Your reference to "smart" may have been over used but it is because that word really hit many of us in the gut.
Chris
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Post by Debbie on Jul 27, 2005 17:52:09 GMT -5
Kristen, Thank you for your words. I appreciate it. I can get pretty emotional on this topic myself. Since I have Down syndrome I do take it personal so I don't read them much since it sometimes makes me feel bad. Unless I can somehow educate someone out there. It just depends. I pretty much stay out of the discussion's like this one.
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Post by CC on Jul 27, 2005 19:19:31 GMT -5
KRISTEN, I AGREE with you also, and I would like to add that both sides of beliefs might want to watch their wording on this topic more careful, KWIM There is NO right or wrong on this, I believe, just opinions... CC ~
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Post by Jodi on Jul 27, 2005 19:36:28 GMT -5
Awe Debbie! I don't think this post is meant to cause those kind of feelings and I'm so sorry if it has caused you to feel bad in any way.
I get very frustrated over the acceptance of DS. I do hope that people reading these types of posts will think carefuly about the matter and not turn it in to an abortion debate. I believe it's about accepting people for who they are no matter what package they come in.
Also, I think it is an ugly topic but maybe we can learn from it without ripping into eachothers beliefs and concentrate on the human rights we all deserve. All of us who are linked to DS, whether as a parent, sibling, or a person with DS, are the voices of today and the future. I'm trying to better understand how people who just don't get it think so that I can help them get it.
So Debbie, and anyone else out there that has felt anything negative from these posts - again I'm so sorry, but I think you all deserve a little more respect and I'm hoping I can help out in that area!!
Jodi
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Post by Debbie on Jul 28, 2005 17:09:24 GMT -5
Jodi, No, you misunderstood my comments. I meant that I feel bad when mother's talk about termination and those they know who did. No one did anything to make me feel bad on here. I was referring to the past and what I had felt when I read those posts. I am not trying to make anyone feel bad myself. When you have Down syndrome and read certain posts and understand the messages like I do you feel like someone you know is being rejected the only difference is that, that person is a baby. Down syndrome is a heady topic as you all know. I think Jodi you are traveling down the right path. We want people out there to see that Down syndrome is not all that bad, we are people like like them and we want to be accepted in our society. We have all the desires other people have. The most important thing is that we want to be accepted and we know when we are not. I have had some bad experiences as a little girl and know the feeling of rejection. You know how children can be on the playground. Adults can be that way too. I think it all comes down to attitudes. Once you can educate a person and show them that an adult who has Down syndrome can be employed and live on their own and show them their accomplishments what can they say? Their eyes pop out and they are speechless of course! ;D It all comes down to attitudes. So when I read about posts on termination I of course feel rejected. Not by any of you but by those who only see the label first. They don't really give that baby a chance to live and have a life.
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Post by chasesmom on Jul 28, 2005 17:12:25 GMT -5
WOW........... that being said, I am proud of everyone for the way you have spoke on this topic. We have had this discussion a couple times over the last 6 years that I have been here and it hasnt always been taken well. I also remember another board it caused a major upheaval on and there were several banished members. It has been a long time I think since I voiced my opinion on this topic. I hope you all accept what I say as well as you accepted Bob's comments I think the people who knew they were having a child with DS BEFORE the birth of theor baby are the brave ones. It tears at my stomach each time I admit the truth but I need to admit it....at the time I wa pregnant for Chase, if I had known then he had DS, I would of never had him. THANK GOD I DIDN'T KNOW!!!!!!!! I can now not imagine my life without this precious child. Would I have a child now if I knew he had DS? Yes of course, but the difference NOW is that I know life would be okay. Fear of the unknown is sometimes just too much for people to handle and back then I would of only known the terrible horrible fear. Does this mean I think everyone should have their baby with DS? No, it means what I think Bob said.....it is a individual choice. I dont believe anyone can determine what someone else should do. Get educated on DS and do it fast and then look deep deep inside yourself. Life will be different forever, but you know, as hard as life is for us at times because of Chase's disability, I am so glad I have him, I am so glad he is a part of our lives, how lonely I would be without this wonderfully funny, rotten, charming, monsterous, generously caring and passionate boy. He is inded the center of our lives and has enriched us so much and changed me from selfish and self centered to a much better human being. hugs and love to all of you Robin
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Post by Chris on Jul 28, 2005 17:15:47 GMT -5
"There is NO right or wrong on this, I believe, just opinions...
CC ~"
CC ~ I am one who believes there is a right and wrong. I don't believe it is my opinion, I believe that it is fact. I think that is why the abortion issue won't go away since there is scientific evidence of when life begins. For those of us who believe in God, it just confirms the scientific evidence. Sorry, CC, but I have to disagree with you.
Debbie ~ Believe it or not, we are all advocating for people with Ds. I think Bob's point was that we need to educate the medical community about Ds so that they can give those who have received a prenatal diagnosis of Ds correct information. There are just so many of us on opposite sides of the abortion debate that these types of discussions are often heated. I apologize if any of my posts offend you. I feel that everyone has a right to be born, no matter what. Even if I had been pregnant with a child who was not going to be viable after birth, personally I would have continued my pregnancy. That is how strongly I feel about it.
"Also, I think it is an ugly topic but maybe we can learn from it without ripping into eachothers beliefs and concentrate on the human rights we all deserve."
Jodi ~ I know I am beating a dead horse but I believe that being allowed to grow in a mother's womb until birth is a human right that we all deserve. I just don't see how we can discuss prenatal testing without abortion becoming an issue. I am all for educating the public to where all people will be accepted regardless of their physical or mental abilities. I love to help people get to know my daughter so they can understand that she is a valuable person just like any typical child.
Chris
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Post by carolyn on Jul 28, 2005 19:41:50 GMT -5
I can't believe I am getting sucked into commenting again.... but
I think what most of us would agree with, is that if termination of pregnancy was not possible, and what with Down Syndrome being the most common chromosonal abnormality, think how many more children like ours would be out in this world, part of our society. There really is strength in numbers- . Don't you ever dream of the day when a diagnosis like DS is considered as within a range of normal?? It is normal for human being to be born with disabilities and differences. It has always been and will always be. What has to evolve is attitude, acceptance, love. Each and every one of us is flawed- but we are people not possessions to be discarded when "broken".
I really do not debate the legalities of abortion, just the reasons for it.....
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Post by CC on Jul 28, 2005 21:32:04 GMT -5
CHRIS you said "For those of us who believe in God" I believe in God and just because I believe in Pro Choice does not mean I don't believe in God YES we all know you and I disagree on this subject and thats OK I am not trying to change your thinking by saying you are wrong or right, its just how you feel and thats OK BUT just because I believe in Pro Choice does not mean I do not believe in God and as hard as it might be for you to believe I am part of "For those of us who believe in God" too Hmmmm in case I read your post wrong I am sorry BUT it surely came off to me like you were referring that only ones that are against abortion believe in God CC ~
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Post by chasesmom on Jul 29, 2005 11:37:21 GMT -5
I also believe in God. I also believe it is fact that no one should be forced to do something they dont agree with or believe in. And I am not trying to start an argument so please please dont take offense ANYONE but I do NOT believe for one second that God made my child be born with a disability. I know God doesnt do that to little babies. God gave me my son but he did not give him DS. I believe that with all my heart. However he did keep me from finding out about it before Chase was born and he did give my husband and I the strength and courage we needed to accept this. We all have different ways we feel and I different way we believe in God. That doesnt make any of us wrong or right. It makes us what we all are, different. I hope all of us here can accept that we all have different opinions and it is okay to think you are right and someone else is wrong as long as you are careful to not insult another for their beliefs which differ from your own. One thing is for sure..... we are all here because we each love our child with DS more then life itself! Robin
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Post by Kristen on Jul 29, 2005 11:43:49 GMT -5
Debbie - that was EXRTREMELY well said.
Carolyn - you hit it right on the nose. Debating legalities of something that is legal is as effective as driving laps when where you want to be in 100 miles away. You can go 100 miles, but it is still in a circle and you are where you are.
Chris - you're also right - prenatal testing and termination are discussions that go hand in hand. I can't help but think how unfortunate it is that Down syndrome can be "picked up" because boy, if it wasn't and these kids were born and there was more numbers and therfore strength and awareness through association, I honestly and truly believe DS would be yes, a birth defect, but more on par with a child who has ADHD or a learning disability vs. this horrible genetic screw up that must be feared and obliterated (that's how I think it is treated more often than not, sorry, but I do).
SO, SO, SO MANY TIMES I have thought, if those people could see Carter, they wouldn't be so scared anymore. If *I* had been able to see Carter three years ago as he is now when the pain and fear was so bad I thought it would eat me alive, I sure as heck would have quit my boo-hooing right there! Yes, I would have seen a not "typical" child, but certainly one who is smart, cute, funny, kind, polite, well-liked, well-behaved, attentive, giving, communicative, fun-loving and very socially aware for a babe of 3! The vision of a pretty usual 3 year old walking around and playing with his sister and trying to talk and potty-training and eating nicely with good manners would have done my heart VERY good! Yeah, yeah, yeah so he isn't the fastest runner on the block and doesn't have much to say and doesn't like to color and has a hard time with scissors. Big frigging deal! He was also one of the smartest in his class this summer and every one but him had been in preschool the year before - figure that one out, KWIM? There are so many things about Carter that are well above and beyond other three year olds as far as his behavior and awareness level (? having a hard time describing it - maybe he is just an "old soul") that he just screams of individuality in the most awesome of ways that people can't help but be sucked into the energy and life that is Carter. I sure didn't imagine it when he was born. I wish more who were having a hard decision to make could get to know him and our other kids here. SO many positives that can't be put on a chart!
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Post by Kristen on Jul 29, 2005 12:55:56 GMT -5
Robin - just read you response and I did find it a little offensive in the wording. What you "know" I do not necessarily agree with. I don't think DS is a random genetic fluke. I believe we are who we are and we choose to come to this world to the parents who will help us realize our goals. *I* truly believe perfect souls rarely come in perfect bodies and once upon a time Carter sat at the right hand of God and said that's her! That's going to be my mom, and he waited for me to be ready for him. Call it naieve (sp?), but I would have loved to been alive back when babies born with DS were believed to be true angels sent to earth straight from God and were celebrated as the most loved and cherished individuals. I don't know how we got where we are from there, but maybe a little naietivity (sp?) would do the world some good rather to pointing to differences as flaws and trying to figure out how to "fix" and "eliminate" them. "Forcing" people to bear a child knowing it's "deformed" or "abnormal" wouldn't be a discussion just as mothers who continue knowing anyway wouldn't be "heroes" they would be called what the rest of the child bearing females are - "MOM" period.
I really didn't want to comment on this as adamently as I have, but I get so sick of this junk that the medical profession and society shoves down the throats of all of us. As I agreed with Carolyn about, I will not debate the legalities of it because it's legal and what the hell can I do about it? What I *can* and *will* very openly comment on right now is the sad state of affairs that judges one life to be worthwhile and another not to be based on a genetic sequence. I am tired of being PC and massagging egos. Here it is, take it or leave it: The VAST majority of bebies with any genetic error die before birth. I have heard the "survival of the fittest" and all that but hey, for our kids to get to birth IS survival of the fittest - the rest just can't make it. Where do you think different color flowers come from? White tigers? Our own evolution? Mostly genetic "screw ups". We are all tossing off genetically incorrect cells ALL THE TIME. The difference is that it's the 100 billionth cell rather than the first and it won't effect us or it gets gobbled up by our immune system or goes into basically cellular suicide mode and self destructs. The series of events that had to take place (and NOT take place - i.e. their system picking it up and stopping growth at any point in nine months) for a genetically different human to be born is mind boggling. Every life is a miracle, but a fragile one fighting it's way here takes my breath away.
It absolutely SICKENS me that DOCTORS who KNOW THESE FACTS do not share them. That they don't tell us what massive obstacles this little one has faced in their short time of being but they made it against those staggering odds and isn't that WONDERFUL! Instead it's too often too bad, better luck next time. BETTER luck? How can we ask for BETTER luck? Better luck on having the messed up division that results in a DS cell show up on division 990,990,998,368 in their body than the first so it doesn't matter? Better luck on losing a "defective" baby before we know we are pregnant? Better luck getting a kid more like us and less like "them" that we hear about so much? Makes me batty, as you can tell!
I know I am regarded as a more passionate, out spoken and opinionated person, but where it involves educating and revealing to people the very real, very human, very life reaffirming experiences of life that I and a lot of parents of special needs have had I will not apologize. We can all obviously see the difficult parts of this path, we live it every day to varying degrees, but I think it's so sad that that too often becomes the focus in general (not necessarily in our discussions, just in general as far as the medical/social/media world). It's like we aren't allowed to sit back and say do you know how frigging GREAT this really can be some days? Can I have just typed that? YES! For example, Carter had toast this morning and seemed disappointed in it. He pointed at the cabinet and said "Puh buh-tr" He asked for peanut butter. Tears, people, there were TEARS and I thought thank you GOD for this child, for this experience and maybe even thank you a little (just a little) for the DS because this little, fractured, broken two words has brought me JOY to the ninth power! It *was* great! It *was* the most uplifting two words I have heard for a long time. It *was* that because he has DS. There, said it, I otherwise would have taken it for granted. He's three and tried to say peanut butter. Nice job. Life would have gone on with little applause. I made three phone calls. My dad offered to buy him a Jif factory. These are not the things shared upon diagnosis. What a shame to the human race.
I don' t know when perfect became something predictable or even all that desirable. Do not misunderstand, I would not have asked for this to have happened and I was darn PO'd at the world and everyone in it that didn't know how I felt when I heard it did. I want what is best for both of my children in every way. I know that will not always happen. What I am beginning to discover is that "best" does not mean "normal." I have long said maybe Carter has it better than any of us and we just don't know it because we have never been him. I can assume life would be easier with 46 chromos, but hey, maybe 47 isn't bad either. When it causes health problems in our kids, it truly breaks my heart and I think what do some people have to go through in life and why? I hate to see babies in pain, it just is not fair. Do I hate it so much that on the chance that it might happen I would remove one from my womb? No. Where there is pain there is hopefully healing and I think they deserve that chance to live their life as it was meant to be without judgements and value put on it from the time they are no bigger than my hand. Ten minutes of wonderful with my babies is worth ten years of my own sadness. It sickens me to the core when others cannot look outside themselves to see that for some of us, the sacrifices that come with parenthood come sooner than others and not necessarily accept it with open arms, but just do it because it is the right thing to do AS A PARENT. True, these are not the things we traditionally think of when we are expecting a child, but I think we all have at least a subconscious awareness that there is a possibility something could happen. I would venture to say it is near impossible to imagine what we would feel in the situation until we have been there, that's why I feel the word needs to be out there that for every tear of grief there is ten of joy.
I have rambled on enough and probalby will not even post on this board in the future. I think these discussions belong on other, private forums for reasons about who our audience may be. All I do is repeat myself ad nauseum and others do the same and nothing ever comes of it but arguments and offense. If someone takes offense to what I have said, oh well. I will o loger apologize for saying what I think is right, what I think can potentially save a life and what I think is a message that should be out there IN BOLD on the bottom of every positive AFP and amnio. People will always do as they choose (there's the legal thing again) but it needs to be with FULL knowledge and information. Not as a rationalized and too often encouraged attempt to relieve their own fear, anxiety and self-doubt.
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Post by Alice on Jul 29, 2005 17:23:04 GMT -5
I am just wondering: why some pro-life people are so angry, aggressive, and pushing others to accept their views? Some of them even kill doctors. While pro-choice people are trying to kindly remind them that we live in free country and everyone is having rights to make any choice in their own business.
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Post by Kristen on Jul 29, 2005 20:03:31 GMT -5
That's right Alice, I am so angry - watch out abortionists, here I come. What a lame argument. I could always use the pro-abortionist term and talk about how all of them are murders and suck out baby's brains, and about how NOW - the biggest pro-abortionists of them all - sell t-shirts loudly proclaiming "I had an abortion" and people in the organization have been quoted as saying "you aren't a woman until you have had an abortion", but that is rediculous, extreme and debating abortion, not abortion based on a genetic outcome and THAT is what I was speaking to. Yours is the kind of poorly thought out statements that lose respect for people with your position. Can't you come up with anything better than this is a free country. PLEASE! That is so weak. BUT if you want to debate abortion, let's start with the fact that 50 cents, some responsibility for yourself and self respect would virtually eliminate the need to discuss the topic. I am not angry, I might be passionate, but in general I do not like the way life is treated so casually, not the excuses made by people who abuse the ability to procreate. I think it is one of the greatest preventable tragedies of humankind and those who cannot factually and sensibly debate it shouldn't.
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Post by dannysmom on Jul 29, 2005 20:43:52 GMT -5
Kristen,
I just wanted to let you know that your response really moved me. You wrote from your heart and I couldn't agree with you more. I believe my son (and all children) is a true gift and he is to be cherished. I hope my son never knows that some women chose to abort rather than give their ds child life. How hurt he would be. Every child is a blessing and should be treated that way no matter how many chromosomes they have.
My intention of this posting isn't to debate pro life or choice, it is merely to have a voice for my son and rejoice his life. He was meant to be here and I love him more than any word could describe.
I wish people were more educated and thought about the meaning of 'life' a bit more. My son's life has meaning and value and he has every right to be on this earth along side every other person with 46 chromosomes.
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