Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 How odd!!!!! I will certainly go to the sight to check it out. I have heard of it but I am not at all familiar with it. Thank you for the info! If it is not to personal how did you guys get a donor or did you ? How odd! Molly --- Bob wrote: > Well.. I had a vecteomy before I was married > so I wouldn't pas on the NF2 > geen. And had a child thru artifical > incemination, I thoungt I was being > very smart. But guess what. My boy was > diagnosed with a desease almost as > rare as NF2. it is not as painful but he will > be mentaly retarded and have > an eating disorder. (His desesae is prader > willy syndron, go to > www.pwausa.org to get info on it.) The chances > for NF2 are 1 in 60,000 the > chances for prader willy are 1 in 16,000 the > chances that I have a child > with prader willy are abouut 1 in a billion.. > > Bob the Wholeone > > Hi every one, > > I have a BIGGGGGGGGGGGGGGGG question for those > of > you with NF. No offence but a serious > question. > If this is such a godforsaken' disease and you > can see how everyone ( including yourselves) is > suffering then why why why would you > intentionally have biological children only to > have them go through the same things you are > going through???? > with respect to everyones feelings, > Molly > --- Mark Sarmac > wrote: > > There's no such thing as " over " with NF2. > > Having this godforsakin' disease > > will always cause problems. > > ----Original Message Follows---- > > From: " Finch, na " > > > > > > > > Sigh... don't you miss the good old days, > when > > you thought all you had were > > acoustic neuromas and once they were out, it > > would all be over. > > > > na > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > > http://explorer.msn.com/intl.asp > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Hi Molly, I agree with that there are a wide range of views of how to characterize NF2. Our views also change from day to day as there are several factors interacting. People vent from time to time. My first reaction to your note is to take the other extreme and stress all the ways NF2 has enhanced my life, but then that's not right either because it ends up minimizing the bumpier portions other friends are experiencing and we're all losing more and more while trying to gain more and more through the bonds we form in our losses. I don't know. It's a rollercoaster. Emotionally and physically. I've decided to ride it through. Nothing's a sure thing. Sometimes we get just the right people in our lives to make it even better than any sure thing. (I can elaborate on the simple joys I experience ~every single day~ if you'd like.) Just as I wouldn't question a racial minority in their decision to bring a child into the world knowing that their child would undoubtedly suffer at least a portion of the hate and discrimination that they themselves have experienced, I also would not question anyone with NF2 of their decision to have a child knowing what they know of their own experience. It's lack of love, compassion, and understanding that is most responsible for the suffering in both instances. I send you hugs, too, because Lois's response revealed your anger and pain. I really can't imagine how angry you must be at NF2 and at your mother-in-law. Anger and mourning have purposes, but after awhile, I learned to let go of the anger (but I only had NF2 to be angry at). It finally sank in how poisonous and useless it is. Episodes of mourning creep back in every now and then in-between many extreme experiences of joy. Love is what we need to live. Again, this is with NF2 or not... it's just more immediately apparent in the life with NF2. Or that's just this former child with NF2's perspective (my Mom blames herself for my NF2 even though she doesn't have it as far as we know... she had a head MRI, but no genetic testing). Love and Hugs, > Date: Thu, 16 Aug 2001 12:40:12 -0700 (PDT) > > Hi every one, > I have a BIGGGGGGGGGGGGGGGG question for those of > you with NF. No offence but a serious question. > If this is such a godforsaken' disease and you > can see how everyone ( including yourselves) is > suffering then why why why would you > intentionally have biological children only to > have them go through the same things you are > going through???? > with respect to everyones feelings, > Molly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Cryogenic labs. They are an anomous sperm doner service. We chose from a list of guys, they had everything listed including faith, inteligence, hair-skin-eye color. Bone structure. There is also a website for them on the net. There are a bunch of sperm banks on the internet. Bob the Wholeone How odd!!!!! I will certainly go to the sight to check it out. I have heard of it but I am not at all familiar with it. Thank you for the info! If it is not to personal how did you guys get a donor or did you ? How odd! Molly --- Bob wrote: > Well.. I had a vecteomy before I was married > so I wouldn't pas on the NF2 > geen. And had a child thru artifical > incemination, I thoungt I was being > very smart. But guess what. My boy was > diagnosed with a desease almost as > rare as NF2. it is not as painful but he will > be mentaly retarded and have > an eating disorder. (His desesae is prader > willy syndron, go to > www.pwausa.org to get info on it.) The chances > for NF2 are 1 in 60,000 the > chances for prader willy are 1 in 16,000 the > chances that I have a child > with prader willy are abouut 1 in a billion.. > > Bob the Wholeone > > Hi every one, > > I have a BIGGGGGGGGGGGGGGGG question for those > of > you with NF. No offence but a serious > question. > If this is such a godforsaken' disease and you > can see how everyone ( including yourselves) is > suffering then why why why would you > intentionally have biological children only to > have them go through the same things you are > going through???? > with respect to everyones feelings, > Molly > --- Mark Sarmac > wrote: > > There's no such thing as " over " with NF2. > > Having this godforsakin' disease > > will always cause problems. > > ----Original Message Follows---- > > From: " Finch, na " > > > > > > > > Sigh... don't you miss the good old days, > when > > you thought all you had were > > acoustic neuromas and once they were out, it > > would all be over. > > > > na > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at > > http://explorer.msn.com/intl.asp > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 I have a BIGGGGGGGGGGGGGGGG question for those of you with NF. No offence but a serious question. If this is such a godforsaken' disease and you can see how everyone ( including yourselves) is suffering then why why why would you intentionally have biological children only to have them go through the same things you are going through???? with respect to everyones feelings, Molly Because theres only a 50% percent chance of my children having nf2. Just about the same chance of my children get cancer aids or any other horrible disease down the road. Life is a beautiful thing and noone can tell me if I were to get pregnant my child is a "mistake" because he/ she may have nf2. Would I have an abortiuon if I had a test performed on the fetus and it tested positive NOPE. Why you ask. well my mom didn't abort my life and nf2 may suck truly bad but I thouroughly enjoy it and look at the bad things like this. Everyone on rthe face of this earth has a trial to go through and NF2 is just my trial to go through. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Well said Sara. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 In a message dated 8/19/01 6:37:45 PM Pacific Daylight Time, STUR106054@... writes: << Everyone on rthe face of this earth has a trial to go through and NF2 is just my trial to go through. Sara >> Sara, I feel this way too. Lori Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2001 Report Share Posted August 19, 2001 Dearest Molly , I for one thought we just explained all that .... Lois Re: Godforsakin' disease I have a BIGGGGGGGGGGGGGGGG question for those of you with NF. No offence but a serious question. If this is such a godforsaken' disease and you can see how everyone ( including yourselves) is suffering then why why why would you intentionally have biological children only to have them go through the same things you are going through???? with respect to everyones feelings, Molly Because theres only a 50% percent chance of my children having nf2. Just about the same chance of my children get cancer aids or any other horrible disease down the road. Life is a beautiful thing and noone can tell me if I were to get pregnant my child is a "mistake" because he/ she may have nf2. Would I have an abortiuon if I had a test performed on the fetus and it tested positive NOPE. Why you ask. well my mom didn't abort my life and nf2 may suck truly bad but I thouroughly enjoy it and look at the bad things like this. Everyone on rthe face of this earth has a trial to go through and NF2 is just my trial to go through. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > In a message dated 8/19/01 6:37:45 PM Pacific Daylight Time, > STUR106054@a... writes: > > << Everyone on rthe face of this earth has a trial to go through and NF2 > is just my trial to go through. > Sara > >> > Sara, I feel this way too. Lori I Sorry, but I think that maybe non NF parents of kids with the disease feel differently. We haven't struggled with the disease ourselves, but watching our kids suffer is another thing. I love my son, (my only child), more than life, but had I known whow he would suffer, I would have not had him, for my own need to be a parent. kjibut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > In a message dated 8/19/01 6:37:45 PM Pacific Daylight Time, > STUR106054@a... writes: > > << Everyone on rthe face of this earth has a trial to go through and NF2 > is just my trial to go through. > Sara > >> > Sara, I feel this way too. Lori I Sorry, but I think that maybe non NF parents of kids with the disease feel differently. We haven't struggled with the disease ourselves, but watching our kids suffer is another thing. I love my son, (my only child), more than life, but had I known whow he would suffer, I would have not had him, for my own need to be a parent. kjibut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 > > > I love my > > son, (my only child), more than life, but had I > > known whow he would > > suffer, I would have not had him, for my own need to > > be a parent. > > > > kjibut > > > , > > I don't doubt your love for your son, but I have a > question: do you (or any others) think that having > this feeling (that you would rather him not be born > than be subjected to NF2) affects your son/child? It > may be subconsiously, but I can't help but think this > would breed feelings of resentment or pity. > > I know what my own parents went through, but I'm damn > glad they had me anyway, and I know that, even if they > had known I would have this, they would have had me > anyway. Knowing that they would have chosen not to > have me to spare me suffering... I don't think I could > handle that. It would make me feel like I wasn't > worth the trouble. > > - wanting to leave work to go play with Reagan now... > I don't belive that I feel or express feelings of resentment or pity. But I think 50/50 are just too high of odds. Would anyone consciously have a child if they themselves had AIDS? > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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