Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 , it must be a 5 year old thing, b/c you could have taken the words right out of my mouth about . He has been really weird like this lately (even talking about death and angels alot, but I am not really worried about that being connected to CF, as Miranda did that at that age also...). has been asking stuff like why we didn't have ports when we were growing up, etc and I guess they are just at an age where they try to figure out where everything fits into the scheme of things? tonight he kept asking if Bitsy (our dog that died two years ago this month!) could come down from heaven so he could see her again, and all this week he would be saying things like he doesn't want his DADA (granddad) to die, or me to die, or himself to die. I will be glad when this phase is over with him, anyway....it was bad enough with Miranda without the complications of CF issues. The thing with , too, is that we call him our little old man, he worries about everything (just let JoJo get even close to the edge of the dock WITH HIS LIFEJACKET ON) and totally freaks out. Anyway, I guess its not as bad as when he thought that when he turned 4 he wouldn't need nebs anymore (out of the blue one night he said ans next week I will be four and then I won't need breathing treatments anymore) We had to explain that he will always need them (why, and Miranda and Brittany don't...) so 4 yo reasoning was what he knew, basically..the older kids in his life did not need nebs so it must be something all little kids do. I guess thats kind of what your son is doing, the make a wish thing seems natural to him, like its supposed to happen for everyone, so of course it will happen with his kids, etc. hang in there.....take care Jen > Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) > smichelle15@u... > > > [Non-text portions o Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 , Eilish say's thing's like " when I'm a mummy " etc. I know cf girls aren't sterile but I just hope her health is good enough to carry a child. All I hope for her is for her to grow old! Sometimes little things they say can make me upset and take a deep gulp. On the other hand isn't it wonderful how they just assume all kids are like them and they all get make-a-wish. Liam and Eilish would love Disneyland as they loves scary rides but not me, I hate them. Feeling bad > Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) > smichelle15@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Jen, When Eilish was about 6 months old, Liam,Eilish and I were grocery shopping when out of the blue Liam said " .........when Eilish dies " . I asked him why he thought that (as he knew nothing about cf then). He said he just knew she would and that she would go to heaven. I felt like sitting down and crying in the middle of the shop as at that stage I was a wreck over the dx , which took me well over 12mths to get over (if you ever can). So I think sometimes kids are a bit morbid and love all this death stuff, but I hate to even think about it! Re: Feeling bad > , it must be a 5 year old thing, b/c you could have taken the > words right out of my mouth about . He has been really weird > like this lately (even talking about death and angels alot, but I am > not really worried about that being connected to CF, as Miranda did > that at that age also...). has been asking stuff like why we > didn't have ports when we were growing up, etc and I guess they are > just at an age where they try to figure out where everything fits into > the scheme of things? > tonight he kept asking if Bitsy (our dog that died two years ago this > month!) could come down from heaven so he could see her again, and all > this week he would be saying things like he doesn't want his DADA > (granddad) to die, or me to die, or himself to die. > I will be glad when this phase is over with him, anyway....it was bad > enough with Miranda without the complications of CF issues. The thing > with , too, is that we call him our little old man, he worries > about everything (just let JoJo get even close to the edge of the dock > WITH HIS LIFEJACKET ON) and totally freaks out. > Anyway, I guess its not as bad as when he thought that when he turned > 4 he wouldn't need nebs anymore (out of the blue one night he said ans > next week I will be four and then I won't need breathing treatments > anymore) We had to explain that he will always need them (why, > and Miranda and Brittany don't...) so 4 yo reasoning was what he knew, > basically..the older kids in his life did not need nebs so it must be > something all little kids do. I guess thats kind of what your son is > doing, the make a wish thing seems natural to him, like its supposed > to happen for everyone, so of course it will happen with his kids, > etc. > hang in there.....take care > Jen > > > > Today, Cody said something that made me feel so sad inside. He said > that when he grows up and is a dad, he is going to take his kids to > Disneyland for their Make-a-Wish, too. Now, I know that there is > almost a certainty that he will not be able to have children without > medical intervention, and that makes me sad. But it also made me feel > kind of sad when he said he would take his kids to Disney for > Make-a-Wish. I know that he doesn't really understand the whole > concept behind why he got the wish (at least not entirely--he knows > it's because he has " sistiss fivrosis " , but that's all), but it still > made me feel sad. What a reason to get to go to Disneyland! > > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ > (wocf, 7) > > smichelle15@u... > > > > > > [Non-text portions o > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Michele, I know quite a few Men with CF who have fathered children --naturally. Please don't think that ...It isn't impossible and the way things are going in the medical field in that area for all folks....he will do well --if he even wants kiddo's .We hope he does, as we enjoy them so much. But --that is a part of his life he will be able to manage. & I would hope he will know of the many w/cf who do have children on their own.... & if he does need help --That isn't so bad either. Kiddo's are ours regardless where they come from ,with our LOVE, Now smile & try to picture what your grandkids will look like & what their names will be :):)-none of which you will be doing anything with -hahaha-My daughters had all that done while they were in high school.haha(of course , you can always bribe them to name the first one Michele....it didn't work for me , but maybe you'll have better luck -----:):love ya!! LOVE < GrandmomBEV Feeling bad Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Hi There dont feel sad (its hard I know) but the wonderful thing is he has a great attitude and not being a dad without medical intervention is not so bad either One way or another he will more then likely be a dad thats the important thing because who know what wonderful and exciting thing will happen between now and then I always keep the faith. I have this place in me that just KNOWS all will work out better then even my polly self can imagine!! Mommy Of The Great --- Baxter wrote: > , > > Eilish say's thing's like " when I'm a mummy " etc. I > know cf girls aren't > sterile but I just hope her health is good enough to > carry a child. All I > hope for her is for her to grow old! Sometimes > little things they say can > make me upset and take a deep gulp. On the other > hand isn't it wonderful > how they just assume all kids are like them and they > all get make-a-wish. > Liam and Eilish would love Disneyland as they loves > scary rides but not me, > I hate them. > > > Feeling bad > > > > Today, Cody said something that made me feel so > sad inside. He said that > when he grows up and is a dad, he is going to take > his kids to Disneyland > for their Make-a-Wish, too. Now, I know that there > is almost a certainty > that he will not be able to have children without > medical intervention, and > that makes me sad. But it also made me feel kind of > sad when he said he > would take his kids to Disney for Make-a-Wish. I > know that he doesn't > really understand the whole concept behind why he > got the wish (at least not > entirely--he knows it's because he has " sistiss > fivrosis " , but that's all), > but it still made me feel sad. What a reason to get > to go to Disneyland! > > , mom to Codybug (pwcf, 5-1/2), a > (wocf, 12-1/2) and DJ (wocf, > 7) > > smichelle15@... > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > PLEASE do not post religious emails to the list. > > > > > > ------------------------------------------- > > > > > > The opinions and information exchanged on this > list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY > MEDICATIONS OR > TREATMENTS. > > > > -------------------------------------------------- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 ((((hugs)))), ! Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 michelle, i know how you fell somewhat my eight ywar old ( kalvin w/out cf) always says to me " mom, i can't wait till me and jason get older and we get married and have kids, our kids can play with each other and we can babysit each other kids, it will be great! " - i know the chances or jason haveing boilological (sp) kids as nill, but, i guess he could adopt kids ! kimberly- jason 17months w/cf and kalvin 8 w/out -- In cfparents@y..., " " <smichelle15@u...> wrote: > Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) > smichelle15@u... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 The two CF men that I know that have had children have ended up having their own biological children, but using medical intervention--where they went in and got the sperm (they ended up having viable sperm) and did in vitro fertilization (is that the right one??? I think so!!) and were both very blessed with success. One father has since passed, but he had a wonderful three years with his little girl. So I haven't completely given up hope, but it still makes me so sad!! , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: Feeling bad michelle, i know how you fell somewhat my eight ywar old ( kalvin w/out cf) always says to me " mom, i can't wait till me and jason get older and we get married and have kids, our kids can play with each other and we can babysit each other kids, it will be great! " - i know the chances or jason haveing boilological (sp) kids as nill, but, i guess he could adopt kids ! kimberly- jason 17months w/cf and kalvin 8 w/out -- In cfparents@y..., " " <smichelle15@u...> wrote: > Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) > smichelle15@u... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 In a way, it's sad that our other children learn about it all in this way--even when we think they don't understand, they have learned a lot by hearing us talk when we " think " they're not listening. In the long run, I suppose it's good that they do understand, but it is still hard. , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: Feeling bad > , it must be a 5 year old thing, b/c you could have taken the > words right out of my mouth about . He has been really weird > like this lately (even talking about death and angels alot, but I am > not really worried about that being connected to CF, as Miranda did > that at that age also...). has been asking stuff like why we > didn't have ports when we were growing up, etc and I guess they are > just at an age where they try to figure out where everything fits into > the scheme of things? > tonight he kept asking if Bitsy (our dog that died two years ago this > month!) could come down from heaven so he could see her again, and all > this week he would be saying things like he doesn't want his DADA > (granddad) to die, or me to die, or himself to die. > I will be glad when this phase is over with him, anyway....it was bad > enough with Miranda without the complications of CF issues. The thing > with , too, is that we call him our little old man, he worries > about everything (just let JoJo get even close to the edge of the dock > WITH HIS LIFEJACKET ON) and totally freaks out. > Anyway, I guess its not as bad as when he thought that when he turned > 4 he wouldn't need nebs anymore (out of the blue one night he said ans > next week I will be four and then I won't need breathing treatments > anymore) We had to explain that he will always need them (why, > and Miranda and Brittany don't...) so 4 yo reasoning was what he knew, > basically..the older kids in his life did not need nebs so it must be > something all little kids do. I guess thats kind of what your son is > doing, the make a wish thing seems natural to him, like its supposed > to happen for everyone, so of course it will happen with his kids, > etc. > hang in there.....take care > Jen > > > > Today, Cody said something that made me feel so sad inside. He said > that when he grows up and is a dad, he is going to take his kids to > Disneyland for their Make-a-Wish, too. Now, I know that there is > almost a certainty that he will not be able to have children without > medical intervention, and that makes me sad. But it also made me feel > kind of sad when he said he would take his kids to Disney for > Make-a-Wish. I know that he doesn't really understand the whole > concept behind why he got the wish (at least not entirely--he knows > it's because he has " sistiss fivrosis " , but that's all), but it still > made me feel sad. What a reason to get to go to Disneyland! > > , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ > (wocf, 7) > > smichelle15@u... > > > > > > [Non-text portions o > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 I know what you are talking about! Micah, now 12 got to talking about what funerals were like when he was 8. He wanted to know how you know your funeral is like you wanted it to be. I told him that mostly the husband tells the wife or vice versa. He wanted to know what you do if you are a kid. I told him that he would have to tell me or his dad. He proceeded to tell me what he wanted exactly. I was shocked and really sad that he felt that he had to have that conversation with me. Since then, not long ago, he reminded him that he had told me what he wanted for his funeral and he was surprised! He didn't remember telling me all of that and was laughing at his choices for a funeral. I didn't ask him what he now wanted. I just didn't want to talk about it again and he didn't offer anything. It was almost eerie when he was young! He was always saying stuff like that. I was glad when he quit talking about death. a ::mom to Micah, 12,wcf,,14,nocf and , 26,nocf:::: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 I sure hope this is just a stage--although Cody has always had a temper and says things like " FINE--then I'll just jump off the roof! " or " FINE, then I'll just die, then you won't have your Cody anymore!! " THAT drives me CRAZY!!! So far he doesn't seem to actually understand that CF can end up meaning he has a shorter life than the " average " person--he just thinks it isn't fair that he has to stop doing a certain activity in order to do his treatments! , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Re: feeling bad I know what you are talking about! Micah, now 12 got to talking about what funerals were like when he was 8. He wanted to know how you know your funeral is like you wanted it to be. I told him that mostly the husband tells the wife or vice versa. He wanted to know what you do if you are a kid. I told him that he would have to tell me or his dad. He proceeded to tell me what he wanted exactly. I was shocked and really sad that he felt that he had to have that conversation with me. Since then, not long ago, he reminded him that he had told me what he wanted for his funeral and he was surprised! He didn't remember telling me all of that and was laughing at his choices for a funeral. I didn't ask him what he now wanted. I just didn't want to talk about it again and he didn't offer anything. It was almost eerie when he was young! He was always saying stuff like that. I was glad when he quit talking about death. a ::mom to Micah, 12,wcf,,14,nocf and , 26,nocf:::: PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2001 Report Share Posted July 21, 2001 Hi I'm a bit late on this one, but it's not always convenient to type with a 14 mo old in your lap. But he's just dozed off after a rigorous bout of CPT.lol I can only guess that we are going to have many of those days when our kids say something similar to what Cody said to you. Because we are always thinking in the back of our minds. IF , how long, if only, ect......it's all so normal to be thinking those things. And as you know there is no crystal ball to see the unknown. Just last week my 4 yr old wo/CF , who was having a coughing fit because of her flare-up asthma, she looked at me with her huge green sparking eyes and said, " OH NO mama, I think I've caught Joshy's " Sistick Fibrosis " . My heart sank to the floor. I pulled my thoughts together real quick and told her that you cant catch CF that Josh was born wit it and he has it everyday. ect....it's just so hard sometimes knowing what and how much to tell them. So at her last visit to her psychologist we cleared up the matter. But I still cant get it out of my mind, her words and the look on her precious face. Your not alone And YES, what a great reason to go to Disney Land !!!!! Take Care, Stein,......mom to CF (14 mo) & Tori wo/CF (4 yr) Feeling bad Today, Cody said something that made me feel so sad inside. He said that when he grows up and is a dad, he is going to take his kids to Disneyland for their Make-a-Wish, too. Now, I know that there is almost a certainty that he will not be able to have children without medical intervention, and that makes me sad. But it also made me feel kind of sad when he said he would take his kids to Disney for Make-a-Wish. I know that he doesn't really understand the whole concept behind why he got the wish (at least not entirely--he knows it's because he has " sistiss fivrosis " , but that's all), but it still made me feel sad. What a reason to get to go to Disneyland! , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Quote Link to comment Share on other sites More sharing options...
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