For Bob

[Jodi]

In Cbean's post, you said "So, if we had done the smart thing, Charlie would not have been born." Now, I know there's much before and after that, but that sentence really got stuck in my mind.

I figured if anyone could talk about this... you could .

First, let me just say that I'm grateful for your honesty. I wonder how many of us have had those same thoughts. I've seen people post about not knowing ahead of time and welcoming "Holland", and others finding out ahead of time - still going to Holland... but we all know the majority of people who find out ahead of time don't take that trip.

So back to the smart thing... it's an interesting statement. Is it the smart thing based on what the majority has done in my shoes? Did I do a dumb thing by actually CHOOSING to continue with my pregnancy... scared as all h*ll about it? No doubt I'm among the minority who have chosen this path, and there are many times I think 'man, I really wanted to go to Fiji - not Holland'.

I didn't know much about DS, and my immediate thoughts of Ryan were 1. He will have a very hard life and 2. My life as I knew it was over. BUT, the one thing that kept going through my mind (the voices in my head - LOL) was who or what determines the quality of anyone's life? Today, I look at Ryan and I realize that he's not sitting there going "life isn't fair". He doesn't know any better. I do.

I find myself wondering what is behind the "smart" thing. I asked a co-worker who has a son with DS/Autism about this. His exact words... "I would have done the smart thing" ... I probed about why is it the smart thing. He responded that 1. you don't get your investment back (the time you put in to your kids), 2. it imposes on your other kids and 3. future care issues. He talked about having a "normal" life.

I'm guessing that it is the smart thing to do because you eliminate a whole heck of a lot of problems for yourself. And I guess we are all tyring to live a "normal" life. "Normal" --- what is normal?

I'm in IKEA the other day, and Ryan does his typical fold-up routine on the floor in the middle of the store... and I think to myself "and I chose this" - LOL! Yes, indeed I did. I chose to take the good with the bad, although the bad sometimes seems to outweight the good on too many occasions.

I'm getting to the point I'm going to ramble... so I think I'll stop right here.

Again, I wanted to say "thanks" for your post because it did get me thinking and wondering (like CC does).

And for the rest of the Uno family... feel free to comment

Jodi

[wrblack]

Hi, Jodi,
Thanks for starting a new thread for this bit of discussion. I did pause before hitting the send button on that post, thought I might be opening one or two rather large cans of worms, but went ahead and hit that button. And sorry I don't have any good answers.
Smart-alecky response would be, so, would you rather be smart or lucky? But maybe I've already offended enough people today. And maybe you were actually smarter than I think I would have been. But that's okay, because I was lucky.
One of the things in that old snip of mine that needs correction, or at least qualification, is that more than 90% of folks with a prenatal dx of Ds choose to terminate. I'm not sure that's true. I've heard of some hospitals taking pride in the fact that their prenatal health program identifies and terminates more than 90% of trisomy 21 conceptions. But I've also heard that in some obstetric practices, rate of termination with a prenatal dx of T21 is less than 60%. Makes me wonder who's telling whom what when--and how. Now, this starts to get dicey, but maybe in those hospitals you've got some know-it-all perinatologist or, God forbid, genetics counselor presenting a worst-case scenario to already frightened, confused, not too well informed but highly anxious, prospective parents. Whereas in some doctor offices you've got knowledgeable, sensitive, caring physicians doing the best they can to present accurate and balanced information, and in the right doses and at the right time, to their patients. Me, I don't know.
So, should people who get a prenatal dx of Ds terminate? Sorry, don't know that one either. But it does seem to stretch situational ethics a bit too far to say, depends, for some people that could be the right decision and for others would be wrong decision. Okay, so then you come up with some scheme where it's okay to terminate for conditions not compatible with life, anencephaly and trisomy 13, but not okay to terminate for conditions which are compatible with life, trisomy 21 and spina bifida. I don't think that will work for everyone and their circumstances and pretty sure it won't cover all conditions, wrong to terminate for Turner's but okay to terminate for Turner's with large cystic hygroma. Well, what if it's a fairly small to medium hygroma? Telling other people what to do and how to live their lives gets pretty messy pretty fast. Trisomy 18 is not very compatible with life for very long, but what about a partial trisomy 18. And does it all have to be health, medical issues? Would you want to try assess quality and well as quantity of life?
Maybe the really "smart" one was the dad who said, after he and his wife and their two kids were faced with their prenatal dx, well, this is when we find out how we really feel about life, and God, and family. Of course, part of that doesn't help me much, because I'm a non-practicing agnostic.
Well, gosh, if I went on and on about all the stuff I don't know, this could last forever. So, what do I know? That should be a lot shorter. Do I wish Charlie had never been born? Absolutely not, wouldn't trade him for the world with a cherry on top. Do I wish he hadn't come with an extra 21st chromosome? Well, yes, but that's hypothetical. I wouldn't trade Charlie for any other kid but would trade him for a Charlie with only 46 chromosomes in a New York minute. But then he wouldn't be Charlie, would he? How more basic can you get to who you are as an individual, biological entity than the chromosomes you have to carry the genes you have? Uh oh, getting back into what I don't know. Do I wish he didn't have visual impairment, severe intellectual deficits, and autism on top of his Down syndrome? Sure, you bet, but again that's who he is, all just part of the package.
Maybe I should have told Christine that one of the best things about going to CHOP, better than the half-price pastries at Au Bon Pain, is getting to leave. It's okay, life is still good, they can run what tests they want, do whatever procedures, hang whatever dx's and labels on my little boy, as long as at the end of the day, or in some cases a very long weekend, I get to pick up my Charlie and take him home.
Now, I also think that in the grand scheme of things, Down syndrome, and even more so some of those other birth defects, are a d**ned clumsy arrangement. They just shouldn't be, shouldn't be permitted, shouldn't be possible. It's really not fair. It's more not fair to Charlie, who has to deal with all those issues, than it's not fair to me, a parent of such a child. But it seems to bother him less than it does me. Guess that's good. I've looked for advice from the experts. I think Jason Kingsley and Mitchell Levitz in Count Us In both said Ds is hard but they were dealing with it.
Even so, and in spite of what else I may have written, I would disagree with your co-worker. I think Charlie has enriched our lives more than been a burden. I tell him he's a load, but it's an honor and a privilege, and a joy, to carry that load. I think he's been very good for his siblings so far, and I hope they will get even more from the association the longer it goes on. I do worry about the future, particularly Charlie's future. Maybe I worry about Robert's future a little less, but maybe I shouldn't. Besides, as pointed out in The Beggar's Opera, right now we've got as much time as anybody else alive. Exactly, no more and no less than everybody else but just as much as anyone.
Hmm, maybe it's too bad my computer system is down just now. If it wasn't, maybe I wouldn't have gone on so long.
Regards,
Bob

[Chris]

Just for the record, there are quite a few of us who visit this website who chose to keep our baby when the amnio proved s/he had Ds. Yes, Bob, we have discussed this before and it is opening a can of worms.

I do not feel that I was stupid for allowing my child to live. We even knew that she had a complete AV canal defect and still chose to let her live. Not once have I regretted having my daughter. I wonder how all the "smart" people feel when they see a child or adult with a disability. I wonder how many of the "smart" people regret their decision or live with the guilt? I think I am darned smart and lucky for getting to raise a little girl with so much gusto and love of life. I have found that she is no more burdensome than my other daughter. I am blessed to have them.

Chris

[Jodi]

Thanks for responding Bob! I do enjoy reading your posts (even the lengthy ones ). I sure hope I don't offend anybody - just interested in hearing about the thoughts out there on this.

I find it interesting that there are people all over the spectrum on this issue. Some have no trouble ending their pregnancy while others agonize over even considering making such a decision. You bring up some very valid, and ever so confusing related issues --- quality and quantity of life --- people making such huge decision must rely on their core values - and everybody has a different belief system... guess that's why there are so many opinions out there and the spectrum is so broad.

I definately believe the way information is given to parents factors in on the decision making process. Now, I've never heard of a doctor bouncing in a room saying "congratulations, you kid has T21" LOLOL! No, they can't quite give it that way can they? But, some could be more supportive and informed.

I don't mind saying again that, for me the decision wasn't mine to make. I never once thought I could have it any other way. That is what fascinates me about this subject. Those who do think those thoughts... how do they consider such a thing? I'm not judging, I guess I feel so strongly that I couldn't make that choice, I'm intrigued that someone does/can/will and want to understand the thoughts/beliefs behind the decisions.

And, like you Bob, I would wish the DS away in a heartbeat. Wouldn't trade having Ryan in my life for anything, and I DO accept him having DS. But just like any loving mom, I don't want anything to harm or hinder my child's life and future. And I do, like so many, appreciate things in a whole new way - milestones for example. Some are so precious. I probably wouldn't celebrate them as I do now if Ryan had not had T21. Again - in a heartbeat!

Is it purely selfish reasons that people chose to be "smart" about their decision? Are there a lot of people out there who, like my co-worker, really think that your children have to give you a minimum amount in return to enjoy the relationship and thereby choosing to accept your child and his/her condition? Maybe the price is to high or the unknown factors about how it will effect the future is too much to bear. But, 90% is just so sad... even at 60%, wow, that's a lot of kids! I don't expect anyone to have the answer to that, just some of the thoughts I ponder.

I feel like I took the road less-traveled and I there are more people on this road than I thought there would be (thank goodness) but certainly no where near those traveling on the popular highway. I know it was the right path for me. I've heard that I live for a crisis - so there ya go... got one to last me a lifetime . I do get so much love from Ryan. And I too feel smart and lucky - yes both. Even in IKEA, or with the school problems, or with poops smeared on the walls, shoes out the window, and marbles in the toilet... it's still a good life!

Jodi

[Monique]

I dont think anyone should concentrate on the word "smart" so literally. I understand that Bob ponders what would/or could/or may be "right" for THEM. I don't think he is saying anyone else making the choice is not "smart".

We are all different, we all have different lives, different hardships, and very different children with various different medical problems. I understand the essence of what he is saying and he has the right here in this forum to say it. Isnt that what we are here for? To find a place to say our feelings even if they may not be what everyone else is feeling?

I am not for or against it either way. It is a personal thing for everyone. For the record, if I had known that Jameson was diagnosed with DS in a time frame where I could have terminated, i would have. Sometimes the fear of the unknown is much more scarier than the reality. Jameson is not the "blob" they said he might be, but he is also not the "high functioning" child I hoped he'd be by now. HE IS WHAT HE IS and there is no point now on the might have beens. I still mourn the loss of the "perfect" boy i thought I would have. He has just taught me how to love unconditionally and to be empathatic to all peoples situations and to count the blessings i do have cause anything can happen.

Also for the record, i subsequently had two "normal" healthy girls after him and had an amnio with each one. I can also say, because of him, i don't know if I would have made the same choice of termination if something would have came back wrong on them. Thankfully, I never had to make that decision.

Just my two cents. And if I did offend anyone, well then you didnt understand my post to begin with.

[ValerieC]

I've thought about this off and on all day. I've weighed my thoughts and probably should not share, but as each of you have felt the right to share in this sensitive area I will too. Here are my thoughts...

Bob, you say you're a "non-practicing agnostic", so I'll begin my thoughts on this topic without a mention of "God". What about "survival of the fittest?" Does it fit here? Charlie has no doubt been sick for most of his life. I should say at least that is what it sounds like from your posts. He has had medical intervention, but he is still kicking and screaming. So if he were not to be here and not be alive he would not have survived even without the medical intervention. Right?

Now, I am a Born Again Believer (am I allowed to say that here?). I hold God as the utmost authority in my life and I follow the Bible. With that said...I feel that somewhere along the way, we began to play God and decide who gets to live and who doesn't get to live. I don't know where or even when that decision became ours. I don't believe it is ours regardless as to quality or quantity of life. What happens if I were to be in an accident and lost the use of my legs and arms, but still could think and reason. Some may say that my quality and quantity of life has diminished. Does that mean I should be put to death? Who gets to decide that? Why? Somewhere along the way we lost the respect for the sanctity of life as well. You see this in society with teens having babies and flushing them in toilets, throwing them in dumpsters, etc.

There is a purpose for Alethea in our lives no matter what she gives in return. The lessons I have learned about me and about the Loving God that I serve have been amazing and numerous because of Alethea. Her presence in our lives has made us better people. We are much more compassionate, much more patient, much more sympathetic. The list really could go on.

I know this more today than ever before, Alethea is not a "fluke accident" as the genetic counselor so gently put it. She was created with an extra chromosone for a purpose. She was created with Trisomy 21 for a purpose. She was created with 3 holes in her heart and an aortic valve weakness for a purpose. She was created the way she is for a purpose. I'm not sure of that purpose, it's not for me to know why or to understand why. That's where my faith comes in. I need to then make sure I'm living the way I'm intended to live and to grasp from life all that I can with the good and the "bad" (not so sure it's really even "bad" seems to be more of an inconvenience).

Our OB asked with each of our children to have an amnio and with each we declined, knowing full well that no matter what the results were we would never do the "smart" thing.

I know that this is a sensitive subject for many. People feel strongly on both sides of the issue. I too have not intended to preach or to offend, simply share my opinion and why I have the opinion I have.

Valerie C

[CC]

Hmmm well I have gotten myself in trouble with this subject in the past BUT I do think its a topic that can be shared and personally I don't think any subject one should be afraid of bringing up here at UNO

I am pro choice, I really do believe every individual has the right to decide if they want to continue a pregnancy or not. I myself didn't know Chris had DS till he was born but even if I had known prior for me NO I would not have aborted him. If there were ever a day that someone said here give Chris this pill and the DS will BAM go away, would I?? You bet you in a heart beat and not for me BUT for him and even if I got rid of the DS for my little Character I don't believe I would be getting rid of all he is, KWIM

Hmm has Christopher been a hardship?? Well in all honesty NO Chris has not BUT the DS and some of the things that come with certainly have. Is it the worst thing that could happen to one, NO I don't think so BUT its NOT the best thing that could happen to one either

least in my opinion.

I have enjoyed reading what others think on this, there really is no right or wrong way its an individual way.

THANKS JODI for bringing it up as I really do enjoy posts that make one think/wonder Hmmm did you know that bout me ?? LOL

CC

[Kristen]

I think this has been one of the more thoughtful and um, calm? discussions we have had about this on this particular board and I am glad for that. Jodi - I feel bad for your co-worker. Just flat out bad that in an uncontrollable situation he does not have the tools within himself to pull from it what sounds like any grain of positive thought. Who is more "disbled" - his child with a dual diagnosis or his "normal" father who sounds like he cannot make peace within himself? It's a rhetorical question, but I think you know what I am saying.

Personally, I would not have aborted Carter. I do not endorse the practice whatsoever, but more importantly, I signed up to be a parent and d**n it, that doesn't come with exceptions in my mind. If I wanted perfect, I should have adopted a "perfect" little baby from a mother who didn't want him or her and have it inspected and examined and statistially calculated how smart and tall and funny they would be and kicked the tires on the carraige before signing on the line when I found one that met my standards. What I got is a visibly "flawed and less desirable" version of the baby I expected. Yes, I was devistated. I was terrified beyond all previous definitions I knew of the word. I would silently beg God to please, PLEASE do something to me - anything - give me the worst most painful disease ever, take everything I have, take my d**n arm but PLEASE GOD IN HEAVEN CURE HIM! Don't let this happen to him, he doesn't deserve it! If you're mad at me, this is not the way to go about things, you know...Where is that gut wrentching grief put you, anyway, about the third ring of hell?

Cold, hard facts. Yes, about 75-90% abort. LIttle known fact: a heart beats at 3 weeks, pain is felt at 20. Average u/s of someone who has no risk factors (most moms of babies of congential defects): 20 weeks. Abortions still offered? Hell yeah they are. What's that preemie organization you see everywhere - March of Dimes? Yes, that's them. Part of their prevention of prematurity incudes regular screeing for defects so mothers will abort and since these children are usually premature, that will reduce the rate of prematurity. Dont see that on the pretty signage, do ya? Lesser known facts...yes, about 50% are lost in the second half of the pregnancy, but it's also estimated that about 90% of babies with DS are early miscarraiges, usually before a pregnancy is detected. Most women have had a m/c at some point and don't know it because of the high rate of DS and other chromosomal anomilies. Most are just not survivable at all and the cell's check and balance system takes over and they don't grow. Looking at the same facts in a different light, it is not uncommon to concieve a genetically different child, it is just rare to carry and deliver a genetically different child and have it result in a live birth. As humans, we are not uncommon in what happened, as parents we are the sublimely fortunate that our children are among the very few who held on and made it. I wish I had it to do over, not because I could have done something to prevent Carter, but because for that moment I heard the news, the tears would have been in rejoicing that depsite everything against him, Carter made it to us safe and sound.

I hope I did not offend anyone, either. I truly enjoy the tone this discussion has kept so far and hope all opinions and feelings can continue to be respected as they have so far.

[Ericsmomma]

hmm...

good post...makes one think! Myself, I chose not to have an amnio, even tho I knew that at age 46yrs. I was really pushing the envelope. My chances of trisomy upped to 1-18...not the greatest odds. I didn't want the amnio because I knew I would never terminate, no matter what the diagnosis was. I am a charasmatic Catholic, and abortion goes against my beliefs.
I figured I had waited and prayed all those years to become pregnant, (my older children from my first marriage are all adopted siblings...married 24 years..and thought i couldn't conceive)
and I told myself I was ready to accept whatever came our way. I must admit , my faith was sorely tested through this....Eric was premature and was in NICU for 39 days. Just as he was finally getting stablized, they hit me with the down syndome diagnosis. Eric was three weeks old!
I remember crying out to God, how could you do this....I waited so long, and just when I thought things were going to be alright...wham!! I remember going home and staying in bed for 2 days...crying, sleeping, crying, getting angry, crying...etc. And while all this is going on my hubby decides to have chest pain and gets an angioplasty (Men's timing is ALWAYS off)
I thought I was at the end of my rope....but then I'd go to the nursery and see my little guy...
and like MB said in her post, you become the mother lion, wanting to nurture and protect...still hurting, but you push that aside and rise to the occasion.
Would I have changed anything? Not sure. If Eric didn't have what he has, he wouldn't be Eric...my sweet angel boy! The glue that holds are VERY disfunctional family together. The love of our lives. Sure, I get discouraged about things, like the lack of communication, his illnesses(he had hirschsprung's disease and colostomy at age 1yr), and my biggest pet peeve,
the "folding up" collapse he does WHENEVER and WHEREVER he doesn't want to do what we want him to do....so aggrevating!! But by the next morning,, I feel better, and its another day. Definetely not a boring path we travel....and with God's help and prayers we will make it through. Dolly

[kellyds]

The statistics that say 70-90% of people with a prenatal diagnosis of Down syndrome will abort are a little misleading. That doesn't take into account the many, many of us who choose to have no prenatal testing.

OF COURSE a large percentage of those with a prenatal diagnosis will abort. Those who know they would NEVER abort don't end up with a prenatal diagnosis, because they don't get tested.

For the record, although I'm 45, we could still have another baby and we know there'd be a high chance of the child having Down syndrome. Wouldn't bother me a bit. Now, the heart and other health issues . . . THOSE are the worrisome things to me.

[Monique]

Kelly brings up an interesting point. Those that want pre-natal testing are probably more likely to want to terminate.

Because there really is no point in an amnio unless you want to make that decision. Although I did do an amnio with my last two kids because since my first baby was born with DS and it was a shock in the delivery room, I didnt want my next birth experience to be another shock. I wanted to be prepared if there was a diagnosis so I could enjoy the birth experience the next time likc I should have the first time.

But I also may have used that information to decide to terminate. Don't know. Interesting though how that would sway the statistics so high.

Monique

[Monique]

I just want to add one more thing after reading some of the posts. This debate will never resolve itself because it all depends on one's philosopy of life. I believe in a higher power but I also believe that not everything happens for a reason. I believe accidents of nature just occur sometimes with no other reason than that.

I personally do not want to believe in a God that would cause a child to have a disability and struggle through life with physical conditions just to teach me some kind of lesson in empathy, or some other agenda. I prefer to believe that Jameson was the result of an unusual genetic incident that should not normally occur and that is all it is. Not a lesson for my life, not to make me stronger or to have any other purpose than to be my son... the son that i love with everything I have. and that is it.

I hope that made sense. Also, I really admire everyone's strong views on this because you have to feel passionate about what you believe in. No matter what that is. Thanks for looking at view of the world. I enjoyed sharing yours.

Monique

[Chester]

I sometimes feel a bit out of place, because we did literally chose to have a child with Down Syndrome in our life. In fact all three of our children are adopted through our States, special needs adoption program. Our oldest son, is the sweetest kid in the world, but he's got issues.....learning stuff, sensory stuff, hearing stuff, anxiety stuff, asthma stuff, bone stuff.....(we didn't know about the issues when we adopted him, he was an 'at risk' baby because of his birthparents backgrounds) it's all pieces that we're trying to put together as we go. There is no label for him. He looks "typical" and if you met him in the street you wouldn't think twice about him, yet he struggles more than our little guy with DS. To us DS was a label that is stereotypical something we felt we could handle more than another "mystery" child label. (I know, I know there are children on both ends of the spectrum with DS and we took a risk that we could end up with a child at one end or the other on the spectrum.) So I agree with Bob, slippery slope trying to tell people what is "okay" to terminate and what shouldn't be......most of the time no one has a clue what the future holds.

I give our little guys birth Mom all the credit in the world. I so appreciate her knowing that she was having a tough time living her own life, and she wasn't in the place to have a baby in her life, let alone a baby with ds. It doesn't make one bit of sense how when I looked into our little guys eyes for the first time I could feel him in my soul.....our little guy had been in foster care for the first 8 months of his life. His foster Mom hadn't cut his hair, so he had an afro taller than his little body, and he thought his name was "Baby" because the hospital didn't name him, and we live in a rural town in WI with so very little ethnic diversity that you can count it on one hand, and here I was looking into "Babies" eyes and feeling him in my soul......I didn't see the color of his skin, I didn't see the ds, I can't even explain what I saw.....maybe it was "love"?! Today I'm much more aware of being a mixed race family and about having a child with a "label".....mostly in part because the rest of society is so eager to point it out to us....we are a different family from the norm. I have to remind people all the time that we're not a better family, not a more righteous family, not a more Godly family, just a family living life how we are comfortable. Adopting a child with DS was honestly quite selfish. I had been a teacher long enough, and "typical" children can drive me banana's quicker than a child with disabilities. Give me a child with some spunk and character!

To me the "smart thing" to do, is so very very individual. There isn't a right and there isn't a wrong. You've got to be able to live with your decisions. I too believe that God doesn't purposefully make "bad" things happen....he doesn't give people cancer, he doesn't cause car accidents, he doesn't chose who can conceive and who can't or how many children people will have and if those children will have disabilities or not. "Things Happen" and how we react to the "things" is called life.

[Jessie]

I'm also glad this topic has been able to be discussed openly here, mainly for selfish reasons on my part I must say! Being that I'm not Jason's birth mom I have felt very guilty for wondering those exact sentiments that Bob was pondering on. I figured that if I had actually given birth to Jason I wouldn't have ever had those thoughts - so it makes me feel like I'm not a bad person for wondering WHY, now that I know that birth parents have had these same questions

I think that's what all of this gets down to is . . . why? Why are people born with disabilities, why do people have horrific diseases or accidents, why do some babies with disabilities die and others don't? I suppose if you have faith you turn to that and know that it's not really up to us mere mortals to question why. If you are not of faith, then I suppose you look at things more scientifically and matter-of-factly. But, even being a person of faith, I find myself still asking questions.

I personally feel that we are playing God if we choose to abort because we have a test and the results are not what we expected. But, I also respect other people's very, very personal decisions they have to make in life. I do think that tests can be beneficial if it helps the new parents cope better with what they will be facing.

My ethical questioning comes into play when there is a lot of medical intervention and if nature had taken it's course there would have been a different outcome. For example, Jason's birth mother went into premature labor several times and they had to stop labor, she was on bed rest, etc. He still was a preemie, but was eventually born at a survivable time. So . . . nature was trying to take it's course, as has been stated many times that many babies with genetic anomalies are miscarried, but Jason was kept alive by medical technology. Obviously, it was a good thing they did what they could to save him, he is pretty much healthy as a horse and he could be worse off cognitively than he is. But, that is the part that I have wondered about before . . . how much is too much medical intervention? I'm not just talking about Jason, I'm talking about any other situation like this. If they had known that Jason had Ds when she was having problems, would they have recommended an abortion or to just let her deliver naturally too early for him to survive? I think so, based on the way they delivered the news to her and Brian after Jason was born. Not very much support. Presumably, she would have wanted to abort or let nature takes its course. Brian would have opted to do exactly what was done - anything to keep his baby boy alive. What would the smart decision have been had they known? Would it have been better to let her miscarry and for them to try and have a normal, healthy child and maybe their marriage could have survived? Who knows.

I know it's silly to ask why when there are no answers to be given, but I think that's human nature. I know sometimes it seems there are these very blessed families that don't have to deal with any problems. However, I think that everyone goes through something in their life that I would personally rather not go through - I would rather have a stepson with Ds than to go through what some other people go through. Sometimes I think it's better to have a stepson with Ds then to have a stepson that hates me and does drugs.

A very good friend of mine's in-laws have one of the saddest stories I have ever heard. When we were growing up you would have thought they had a picture-perfect family though. My friend's husband's mother and father had 3 children. After having her children, the mother was diagnosed with Huntington's disease, sometime in her late 30's, early 40's. Sadly, each of the three children inherited the disease as well. If you are not aware of Huntington's disease, it is an awful, slowly degenerative disease that slowly kills your muscles and your brain. It can take 10-15 years to die from this disease and many of those years you have no real quality of life. So . . . the father has now buried his wife, his daughter and one son. The other son, my friend's husband, has been in a nursing home for 8 years and everyone is amazed that he is still hanging onto life. He has no quality of life but he is not on any artificial means of support either (which he does not want anyway). So, in asking why? For this man who will eventually bury his entire family after watching all of them slowly die a very sad death, you may want to ask why this would happen to someone. However, there is nothing this man could have ever done to deserve such a thing. No lesson learned is worth that much pain.

I don't believe things happen to teach us a lesson, I believe that we have to find strength when such things happen to us and extracting a lesson out of it helps us cope and to put an answer to the WHY ME? question.

I wouldn't want to take the Ds out of Jason for me. I would want to take the Ds out of Jason for Jason. As Jodi stated, I know what he is missing out on, not him. The last several generations (since baby boomers maybe?), we have been raised to believe that we can be whatever we want to be, no matter what race or gender we happen to be. But, you have to admit, our kids with disabilities truly do not have the same opportunities that you and I have. I think that is hard for us to swallow and accept - that there are limitations. When you have a perfectly healthy new born baby you can imagine them to grow up and be President of the United States. When you have a baby with a disability you probably wonder what will become of your child, how will they live, will they have friends, what happens when you are no longer around to care for them? That's when you start to question why are things happening the way they are.

Ok, enough rambling on my part. Next opinion please . . . !


Jessie

[momofrussell]

Well, I am not really going to get into my opinions here.. but wanted to touch on the statistic factor you all mention.. and then some mention the factors being off because of the ones that did not have prenatal testing... the statistics are ONLY for those who HAVE had prenatal testing. It's the % of those who KNOW before... not the precentage of those who know and don't know before... that's a totally different study group and percentage LOL. So taking in account the % may be off due to those that didn't find out before is like adding an orange to an apple group... it belongs in a different group study

a.