Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 , Just couldn't resist this poll !!! No cure for Seth, if it could be my choice. For all my children I want: be happy, be a good person and get to Heaven. With the other four kids, I know the first two things are taken care of, for the moment anyway. Heaven is a possibility for them, same as for us all. Seth is happy, happiest person I have met to date actually. I have no doubts he will turn out to be a good person and Heaven is a given. What is there to cure? Who is to say that my world is better than his? His looks pretty darn good to me at times! LOL Cure an angel? No thanks. Gail, Mom to; Seth-4, jo-7, Becky-9, -23, Jen-24, Grandma to Errick-4 and wife to -my hero Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 , Just couldn't resist this poll !!! No cure for Seth, if it could be my choice. For all my children I want: be happy, be a good person and get to Heaven. With the other four kids, I know the first two things are taken care of, for the moment anyway. Heaven is a possibility for them, same as for us all. Seth is happy, happiest person I have met to date actually. I have no doubts he will turn out to be a good person and Heaven is a given. What is there to cure? Who is to say that my world is better than his? His looks pretty darn good to me at times! LOL Cure an angel? No thanks. Gail, Mom to; Seth-4, jo-7, Becky-9, -23, Jen-24, Grandma to Errick-4 and wife to -my hero Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 , I guess I'm in the minority here, but if a " cure " were found----you betcha I would want Reuben cured. Why would anyone not want their child to be whole in mind AND body?! I love Reuben so much and if a ' " cure " would make his life better (and ours), then I would definately want it for him! Reuben is certainly an angel, but he has to live in this world and I would want anything that would make his world easier. We have always prayed for Reuben's healing, but if it doesn't happen in this life, we know when he gets to heaven he will be totally healed! Just needed to put in my " two cents worth " ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 You know, I don't know that I can answer this question. It all depends what the risks are, what portion might be targeted. For instance, his health is generally good, so turning off some gene for better health isn't going to sell me, but I might go for turning off the MR gene if it didn't have great side effects because that might mean Andy would be able to talk. I am certain that I would go for something to improve muscle tone...as that might get Andy talking too. Do I want to change him? No. Would I like the opportunity to know him better? Yeah. Would I like his future to be more certain than I can envision right now? Yeah. To be honest? I'd take " typical DS " any day. I wouldn't mind leaving the autism piece behind. But since that doesn't come with chromosome 21, I'll wait and see what they come up with. BTW, a not so great, but coulda been worse article is available at: http://foxnews.com/science/050900/downsyndrome.sml I had fun doing it. I made her rewrite one paragraph and then decided to cut my losses. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 I'm with you. The only reason I stay in this hell of medical school is 1) we are too far into debt to leave and 2) the only way I can ever do research that people take seriously is to have the initials and 3) I will no longer need a gatekeeper to tell me what is right or wrong treatment for my daughter. (A gatekeeper who often has never even seen a child with autism and certainly not one with both and who hasn't done a medline search since the 80's.) When Jen was born with DS, I lost the dream of the child that I imagined. Then I fell in love with her after initially doubting I would. When she became autistic, I lost that child I fell in love with. That was a child full of enthusiasm and love and active learning. I want it all cured, but I'll take the autism cure first. However, I'll love her to death anyway. Kara At 12:51 AM 5/10/2000 EDT, you wrote: >, > I guess I'm in the minority here, but if a " cure " were found----you betcha >I would want Reuben cured. Why would anyone not want their child to be whole >in mind AND body?! I love Reuben so much and if a ' " cure " would make his life >better (and ours), then I would definately want it for him! Reuben is >certainly an angel, but he has to live in this world and I would want >anything that would make his world easier. We have always prayed for Reuben's >healing, but if it doesn't happen in this life, we know when he gets to >heaven he will be totally healed! > Just needed to put in my " two cents worth " ! > >------------------------------------------------------------------------ >Life's too short to send boring email. Let SuperSig come to the rescue. >1/3805/10/_/691668/_/957934306/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 At 07:46 AM 5/10/00 -0500, you wrote: >I want it all cured, but I'll take the autism cure first. However, I'll >love her to death anyway. I'll go along with this. I think I don't like to say " I want him cured " b/c right now it's not possible. I'm tired of hearing how I " m in denial. But I have to say, Kara, I agree with all those losses. I love the child I have, but the steps to getting here have not been without pain. j Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/9/00 9:45:24 PM Eastern Daylight Time, smilinggail@... writes: << , Just couldn't resist this poll !!! No cure for Seth, if it could be my choice. For all my children I want: be happy, be a good person and get to Heaven. With the other four kids, I know the first two things are taken care of, for the moment anyway. Heaven is a possibility for them, same as for us all. Seth is happy, happiest person I have met to date actually. I have no doubts he will turn out to be a good person and Heaven is a given. What is there to cure? Who is to say that my world is better than his? His looks pretty darn good to me at times! LOL Cure an angel? No thanks. >> Ok....can't find the original to this, but I assume we're asking would we *want* a cure for oru kids DS? Hmmmm.....Dh and I have actually had this conversation. YOu know, would you take it away from your child if you could. He has always emphatically answered yes to that question. (I think we'd ALL answer yes emphatically if it were the autism we were asking about). Duff's always felt that if he had the option, he'd take away ANY and ALL hardship from ALL our children, and while individuals with DS have so many wonderful characteristics, life just isn't as easy for them due to health, society, and other issues. Of course, if we could take away ALL hardship for our kids, then that'd be heaven, wouldn't it?!? Once I went to a spiritual retreat for Moms of special needs kids. Over lunch, someone asked the question... " Do you think your child will still have his/her disability when they get to heaven " . The ones who were dealing with many physical problems or severe behavioral ones felt strongly that no, their child would be whole and minus their *affliction*. The ones whose child had DS felt differently. I too feel that Maddie is Maddie, DS and All.......I see her in heaven with DS but for sure minus that evil *Other*. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 You're definitely not alone in this way of thinking. I think it would be selfish of me to want Ian to stay hindered just because I love him. If I could open his world to all the " normal " possibilities and opportunities, I would in a blink of an eye. To be honest, it would be easier for me as well. But that's a secondary consideration. CK, Mom to Ian (2/89), (9/90), and Rose (6/94) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Wow, I think I did not state what I mean very well! Sorry. I believe everyone in this world has afflictions. Some you see, some maybe even worse, you don't see or ever realize they exist in another person. I always try to look on the bright side and know that things could always be worse than what they are. With the faith I believe in, I believe that there is a reason for suffering and that from every evil, a good will come out of it. That this world is SO temporary, and Heaven is the one focus in life. To me, my daughter's alcoholism is far worse than Seth's affliction. I certainly don't wish FOR any affliction, but I also accept the ones that come my way and try to find the good in it, even the worst ones. I don't want any, I don't like them. I have MANY in my life and Seth's is a very small one in comparison to some for me because I see Seth is very, very happy. Right now, he doesn't know anything is wrong with him. Future? I still see him happy and spreading his joy to everyone around him. If not, I hope we can embrace this affliction too. I know I see things a lot different from others. My husband is a lot like Donna's, so much that he would keep the kids seated for life, because they might fall and get hurt! LOL Gail, Mom to; Seth-4, jo-7, Becky-9, -23, Jen-24, Grandma to Errick-4 and wife to -my hero Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/10/00 5:11:11 PM Eastern Daylight Time, smilinggail@... writes: << I have MANY in my life and Seth's is a very small one in comparison to some for me because I see Seth is very, very happy. Right now, he doesn't know anything is wrong with him. Future? I still see him happy and spreading his joy to everyone around him. If not, I hope we can embrace this affliction too. I know I see things a lot different from others. >> Oh Hey Gail. Please don't apoligize for your opinion. How wonderful that Seth is such a happy kid!!! Maddie sometimes is, and sometimes isn't. She's a lot happier than she used to be. I'm not the type person who believes things happen for a reason (that just doesn't explain enough for me the starving babies in 3rd world countries, and why kids with special needs, as we ALL know, are often born to those who can't handle it). I believe that life Happens....and that we need to learn from the events and moments in our lives that cause us pain as well as the ones that bring us great happiness. If we can do that, we end up in a better place despite the anguish. Whenever something bad happens in my life, I make it my goal to determine what is to be learned from it rather than wishing it away. This has NOT been an easy task (the last 3 years have been especially hard for me), but I can honestly say that I feel I've gained substance as a person from all the bad as well as the good. Yes, I believe in God and I do pray....but not for things to go away or change....I pray for the strength to help me deal with whatever comes my way. It never occurs to me to pray for a miracle to take away Maddie's autism (never mind the DS). It makes more sense to me to spend my time working towards bringing her back to us. I AM excited when I see strides being made in the research of DS and autism. But that can't be my life. My life is dealing with the every day...and doing what I can for Maddie. Now that I've bored you completely with my philosophy.....I do feel that this is such a hard question. Because we've gained so much from our kids for one thing and I think also partly because it's so hard to imagine a child like Maddie that's not Maddie. But I do know that if by some incredible miracle, God came down and said that He'd fix everything and what do I want.....Yes, I'd say take it all away from her....make her life easier. Bottom line. Of course, I'd probably end up searching all over for the *real* Maddie who was Somewhere and needed me....LOL Donna (a fatal realist) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 Try this one when thinking of wishing things away. If the gene were the one for CF or Huntington's Chorea?? If the DS meansearly Alzheimer,increased risk of leukemia?? I would wish it al laway and if it altered the son I have, I will love the changed son too. But hewill benefit from not having his quality of life altered or life shortened. Sara >>> duffey48@... - 05/10/0 2:12 PM >>> In a message dated 5/9/00 9:45:24 PM Eastern Daylight Time, smilinggail@... writes: << , Just couldn't resist this poll !!! No cure for Seth, if it could be my choice. For all my children I want: be happy, be a good person and get to Heaven. With the other four kids, I know the first two things are taken care of, for the moment anyway. Heaven is a possibility for them, same as for us all. Seth is happy, happiest person I have met to date actually. I have no doubts he will turn out to be a good person and Heaven is a given. What is there to cure? Who is to say that my world is better than his? His looks pretty darn good to me at times! LOL Cure an angel? No thanks. >> Ok....can't find the original to this, but I assume we're asking would we *want* a cure for oru kids DS? Hmmmm.....Dh and I have actually had this conversation. YOu know, would you take it away from your child if you could. He has always emphatically answered yes to that question. (I think we'd ALL answer yes emphatically if it were the autism we were asking about). Duff's always felt that if he had the option, he'd take away ANY and ALL hardship from ALL our children, and while individuals with DS have so many wonderful characteristics, life just isn't as easy for them due to health, society, and other issues. Of course, if we could take away ALL hardship for our kids, then that'd be heaven, wouldn't it?!? Once I went to a spiritual retreat for Moms of special needs kids. Over lunch, someone asked the question... " Do you think your child will still have his/her disability when they get to heaven " . The ones who were dealing with many physical problems or severe behavioral ones felt strongly that no, their child would be whole and minus their *affliction*. The ones whose child had DS felt differently. I too feel that Maddie is Maddie, DS and All.......I see her in heaven with DS but for sure minus that evil *Other*. Donna ------------------------------------------------------------------------ Bids starting at $7 for thousands of products - uBid.com 1/3027/10/_/691668/_/957982360/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 No, Gail, you shouldn't apologize for your opinion or how you feel. One reason I was so adamant about having Reuben " cured " , I think is because we tried for 14 years to have him. They told me I couldn't have anymore children. But we prayed so hard, and were so disappointed every month, then every year when it didn't happen. And then finding out I was pregnant, was such an unimaginable joy. I was so happy when he was born. Then, after a few hours, they tell us he has Ds. Then he has 2 holes in his heart. (Had heart surgery at 5 weeks). It was such a roller coaster ride!! And now, even after 13 years, I think I am still greiving the son I DIDN'T have. But Reuben has given us such joy, and no one could love their child any more than we love him. But we don't really know when Reuben is happy or not. He laughs at inappropiate times, and he never cries. (anymore). All he wants to do is sit in the floor, flip spoons, chew on socks!, and have his videos going all the time. I just wish sometime that we could find the real Reuben in there somewhere! I guess that's why I would want a " cure " . Forgive me ,everyone, for being such a downer tonight. But it's midnight, I'm tired, and I ran over my little dacshund and killed her today. It has NOT been a good day! BUT------- " tomorrow is another day " ! ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 I would n,t hesitate to cure the autism,I dont feel with autism is right,it is like having a changeling and I am sure he would prefer to be the happy chatty kid he was until he was 4,it is nothing to do with acceptance or love,but when ne bacame autistic it was like losing a child and getting a stranger and I dont think I will ever accept that this is how he will be for ever without a feeling of loss Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 I guess I will chime in, that it is no cure for me, either, from the Down Syndrome, and just the ability to " deal " with the autism better. Gail, I agree, that I try to find the blessings in trials (Maybe our religious training) and I do see many blessings that Matt has given our family. Dh, by the way, would definately vote TO cure! Thinks I am cruel for not taking advantage of this, if it were to come up. S ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 As the parent of 5 with ds I can say that the autism is the most differcult. If I could make it go away I would. JJ's life is so much more challenged than our others. But if it were not for the other kids I would never have realised JJ was so different. There are times when he is a absolute love. & Garry, parents of (9 ds), (8 ds/g-tube), JJ (6 ds/autism/celiac), (5 ds), and Esther (3 ds). All adopted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 juanita, so sorry to hear about your puppy.....virtual hugs coming your way....i bet you feel such emptiness, i would, my dog is another kid and sometimes listens better than the children....hang in there, and i am so sorry.,leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 i would never change little miss prissy, aka ashton. even though i was barely 18 when i had her, i would never in a zillion years change her or the downs.... yes i grew up very quickly and yes my dreams have been altered.......yes i feel sometimes my young adult years were robbed from me and yes i do lay in the kitchen floor and kick like a toddler...... and yes i cry adn whine and fuss and feel sorry for myself......but i love ashton and believe she has made me see the inner things in life that i would have never seen........ she makes me see that a smile is more precious than a pot of gold and climbing ona horse is better than winning the 45 million va lottery!!!! hugs, laughter, tears, smiles, gaggles, and even grunts mean so much more....the first tooth, the first pee-pee on the potty, the first time they say " sh=t " , all those accomplishments are so dear and cherished that how could anyone not imagine having her in my life.....so i shall shutup and stop babbling....leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Hi, I can't find the original post here, but I'll toss in my 2 cents, though I think I'm alone here in how I feel about this matter. I'd change the whole kit and kaboodle!!! I hate the DS and all that came with it as I would a cancer. I don't feel chosen, or that my son is an angel. He's cute and sweet and I feel that that has nothing to do with his DS. My son isn't a tad " slow " and he's going to require constant care all his life. He'll never know the things his brothers and sisters know. He'll never be a father and it breaks my heart to think he'll probably never experience how wonderful it feels to lie next to a lover and know the intimacy between husband and wife. He'll never feel how great it feels to be a breadwinner and compete for a better paying job. I pray he won't know how his life is different. I've heard people say that at least our kids won't break the law or start wars. So far none of my other kids did any of that and besides, that's always a risk all parents face. As I grow older and my son's impairment becomes greater I worry about his future. One thing is for certain. My very last conscious thought as I leave this life will be of , and I will not be comfortable, no matter what plans have been made, because plans have a way of changing. I accept my son the way he is, but I will never embrace his DS as a gift. I will always view it as something terrible that happened to him at the beginning of his being and it robbed him of what should have been. Take care, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Judy, Amen and Amen!! Finally, somebody who feels the way I do! After reading all the other posts, I was beginning to think,maybe, I was out in left field. It was starting to feel really lonely out there! I sent a post a few days ago, saying, what you are saying, in essence,(although you said it so-o-o--o-o- much better). I was also beginning to think I was weird for wanting my child to get back what was taken from him at birth. I accept my child the way he is, but like you said, I will never embrace his DS as a gift. Thank you for putting into words what I also feel, but could not say as well as you did. God has shown us many blessings through Reuben. I believe it's because He is walking with us all the way and He shows us how to see the " good " thru the " bad " . But when and if there is a " cure " , we're ready!! Thanks again Judy, ita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Judy, I Couldn't have said it better. For my son to have the opportunities to experience life as we know it is something that I will always search for. It is something he deserves, given that choice-to deny him and leave him with a disadvantage that one could fix, would be cruel . Andy Re: Re: no cure for me... > Hi, > I can't find the original post here, but I'll toss in my 2 cents, though I > think I'm alone here in how I feel about this matter. > > I'd change the whole kit and kaboodle!!! I hate the DS and all that came with > it as I would a cancer. I don't feel chosen, or that my son is an angel. He's > cute and sweet and I feel that that has nothing to do with his DS. My son > isn't a tad " slow " and he's going to require constant care all his life. > He'll never know the things his brothers and sisters know. He'll never be a > father and it breaks my heart to think he'll probably never experience how > wonderful it feels to lie next to a lover and know the intimacy between > husband and wife. He'll never feel how great it feels to be a breadwinner and > compete for a better paying job. I pray he won't know how his life is > different. I've heard people say that at least our kids won't break the law > or start wars. So far none of my other kids did any of that and besides, > that's always a risk all parents face. As I grow older and my son's > impairment becomes greater I worry about his future. One thing is for > certain. My very last conscious thought as I leave this life will be of > , and I will not be comfortable, no matter what plans have been made, > because plans have a way of changing. I accept my son the way he is, but I > will never embrace his DS as a gift. I will always view it as something > terrible that happened to him at the beginning of his being and it robbed him > of what should have been. > > Take care, > Judy > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > 1/4053/10/_/691668/_/958099418/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Hi Judy, I'm responding off the list - not because I don't want to share with everyone, but because I have shared, and just don't want to bore them all with my opinion! <nevermind....after reading my brilliant words (ha ha), I decided to bore you all anyway> We're on the same " wavelength " .....I'm a happy, joyous person (most days!). I think I've dealt with DS just fine, I'm trying to deal with autism. But for a cure? I'd do just about anything. I was a bit nervous to post my feelings, even though the members of our list are very open and understanding. Somedays I wish I were more patient and more faithful.....like some of the incredible women on the list. But patience is NOT one of my virtues (ask my parents!) and my faith has been tested beyond reason. Shortly after Tanner's birth, my sister-in-law (and dear friend) was murdered. Someone actually told me... " watch out...bad things happen in threes! " As soon as the two trials were over, we started noticing the signs of autism (although we just recently received a formal diagnosis). OK...so there's my " three " . I shouldn't get anymore bad " stuff " , right? The other " words of wisdom " I received during this time were " God only gives us what we can handle. " I remember screaming at the top of my lungs: " I'M AT MY LIMIT! PLEASE TAKE ME OFF THE #@!** LIST! " Right now, life is good. I have a wonderful family. My children are healthy. My children are happy (although I'm not sure if Tanner is truly happy...or my perception of happy. But that is another long story!). But I'd still change the DS and autism. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 In a message dated 5/11/00 12:08:03 AM Central Daylight Time, heirbornpr@... writes: << I ran over my little dacshund and killed her today >> ita, I'm so sorry! A horrible day, to say the least. Hope you've had better days since. Virtual {{{{{{{hugs}}}}}}} and Ben & Jerry's and a chocolate fix too, Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Thanks for the hugs, Maureen. And yes my days have been a lot better since. Had a great Mother's Day. ita Quote Link to comment Share on other sites More sharing options...
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