Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hello I read this post, and couldnt help but cry. My biggest fear is what you and your son are going through now, it breaks my heart. I dont mean to be a downer here, but I just dont know how you can handle hearing that, except for the fact that you will do whatever necessary for your little boy, even though he is 12, he is still a little boy. It is this type of thing that I tell my inlaws, to make them realize that this disease is horrible, regardless of the medical breakthroughs, and the " median life expectancy " , both of which I dont like to think about. is real, and what he needs to live is real, and that is what I tell them, I use no names, but I make them aware of the seriousness of this, so they will know the reality of it, Sorry if this sounds horrible, but I just couldnt stop typing here. Take care, and hugs to you and . , mommy of 4, , 16 and begging to drive the family auto, (I dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the worrier of the family, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes, whose greatest passions are dancing and Elmo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 , After reading your post to me, here is my reply . After i had brandon and then it all sunk in about cf . He was probably around 6-8 months old. and i made a promise either to him or me which ever because he wasn't able to comprehend what i was talking to him about,but i have always said i will give him the world as long as i was able to afford it. and so far i think i have done a great deal in his worldly influences. a few years ago we went around the U.S. on a 3 week trip and the kids had so much fun. i think we are going to do it again. i try to give him everything(not meaning to spoil him he's not like that)everything that i would want for myself in this day and age. also about 6 years ago he wanted to move to the ocean . so you know what we did, we moved to florida within a matter of 2 weeks we took care of business here in PA and moved to daytona beach. he was on ssi at the time and they asked me why we moved and i said because my son wanted to , if you can picture their faces. they said what do you mean. and i said,my son has cf and he said move so we moved. then my mother became very ill (strokes) and we moved backed to PA in and ice storm in january it was horrible Fl weather was 50 degree and PA weather was - 15 oh my was it hard staying here then. another move to St.louis won't make a difference to me. there is not really anything here in PA for us the family, besides my father(my mother passed away) The only thing is ,is we are able to afford this and we have been lucky in that situation,because there are people at clinic that have a hard time affording to make it to clinic. but i want him to see everything that i have seen , did, going to do. i would work 4 jobs if i had to so he could do whatever in his life. and if he lives to be 100, then he can tell his great-grandchildren that his mother was the greatest and gave up alot so he could see the world. oh in april we go to aruba for 1 week(that is my pick, i want the crystal blue water) i could give a rats a$$ less if he goes or not.all i know is i am going and it is about time. my worst fear is that he will die before me and i don't want that . that is not how it is suppose to work, i go and then the kids get to greive for me. and me and my husband have been thru the crying part and we are back to reality and we must take care of his life and make it better so we all can con't as a family. i don't want to sound as if i have no conscience or whatever but i understand what he has(cf) and what he will die from and approximately around what age(they say 25 yrs) and that is what i hope to receive, if we have more than that i am very greatful, but i don't what to be robbed of any time. we have cried and cried and cried and cried i can't cry anymore(right now at least maybe later)now we have to go and get the next step in our life ready . well this let out alot of built-up emotions and i feel good. people learn the hard way and the hard way in cf . and the hard way does do damage to their lungs and you can't reverse damage. damage con't and con't. even if you don't make mistakes , so cf have worse cases and damage their lungs , and we learn from that. so when a dr says it will affect them maybe not today but 5 years down the road BELEIVE them. because what you do today affects you 5 yrs later. hopefully you made it all this way chris mom of 3 brandon 12 yrs old On Fri, 9 Feb 2001 00:27:50 EST, cfparents wrote: > Hello > > I read this post, and couldnt help but cry. My biggest fear is what you and > your son are going through now, it breaks my heart. I dont mean to be a > downer here, but I just dont know how you can handle hearing that, except for > the fact that you will do whatever necessary for your little boy, even > though he is 12, he is still a little boy. > It is this type of thing that I tell my inlaws, to make them realize that > this disease is horrible, regardless of the medical breakthroughs, and the > " median life expectancy " , both of which I dont like to think about. > is real, and what he needs to live is real, and that is what I tell them, I > use no names, but I make them aware of the seriousness of this, so they will > know the reality of it, > Sorry if this sounds horrible, but I just couldnt stop typing here. > Take care, and hugs to you and . > > , mommy of 4, , 16 and begging to drive the family auto, (I > dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the > worrier of the family, > , 5 and the next famous artist, and , 17months with CF and reflux > and a beautiful smile and bright blue eyes, whose greatest passions are > dancing and Elmo. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 YOU are a wonderful mom....have as great trip .SEND PIC's . Yes, those kiddo's will know you deserve this. I think you wrote what many have in their hearts......each wants all for their wee ones.......But , we do what we can do, each in their own way........BUT THE LOVE YOU HAVE SHOWN...IS WHAT COUNTS..... If they can't travel , read them books, show movies, etc with them....BUT , enjoy it WITH them. Make the reading , viewing a fun trip ....at home.....if not able to trip it:):): It is what all want....LOVE TO YOU FOR SHARING May your trip be super-----as you are!! LOVE & HUGS, grandmomBEV Re: s mom , After reading your post to me, here is my reply . After i had brandon and then it all sunk in about cf . He was probably around 6-8 months old. and i made a promise either to him or me which ever because he wasn't able to comprehend what i was talking to him about,but i have always said i will give him the world as long as i was able to afford it. and so far i think i have done a great deal in his worldly influences. a few years ago we went around the U.S. on a 3 week trip and the kids had so much fun. i think we are going to do it again. i try to give him everything(not meaning to spoil him he's not like that)everything that i would want for myself in this day and age. also about 6 years ago he wanted to move to the ocean . so you know what we did, we moved to florida within a matter of 2 weeks we took care of business here in PA and moved to daytona beach. he was on ssi at the time and they asked me why we moved and i said because my son wanted to , if you can picture their faces. they said what do you mean. and i said,my son has cf and he said move so we moved. then my mother became very ill (strokes) and we moved backed to PA in and ice storm in january it was horrible Fl weather was 50 degree and PA weather was - 15 oh my was it hard staying here then. another move to St.louis won't make a difference to me. there is not really anything here in PA for us the family, besides my father(my mother passed away) The only thing is ,is we are able to afford this and we have been lucky in that situation,because there are people at clinic that have a hard time affording to make it to clinic. but i want him to see everything that i have seen , did, going to do. i would work 4 jobs if i had to so he could do whatever in his life. and if he lives to be 100, then he can tell his great-grandchildren that his mother was the greatest and gave up alot so he could see the world. oh in april we go to aruba for 1 week(that is my pick, i want the crystal blue water) i could give a rats a$$ less if he goes or not.all i know is i am going and it is about time. my worst fear is that he will die before me and i don't want that . that is not how it is suppose to work, i go and then the kids get to greive for me. and me and my husband have been thru the crying part and we are back to reality and we must take care of his life and make it better so we all can con't as a family. i don't want to sound as if i have no conscience or whatever but i understand what he has(cf) and what he will die from and approximately around what age(they say 25 yrs) and that is what i hope to receive, if we have more than that i am very greatful, but i don't what to be robbed of any time. we have cried and cried and cried and cried i can't cry anymore(right now at least maybe later)now we have to go and get the next step in our life ready . well this let out alot of built-up emotions and i feel good. people learn the hard way and the hard way in cf . and the hard way does do damage to their lungs and you can't reverse damage. damage con't and con't. even if you don't make mistakes , so cf have worse cases and damage their lungs , and we learn from that. so when a dr says it will affect them maybe not today but 5 years down the road BELEIVE them. because what you do today affects you 5 yrs later. hopefully you made it all this way chris mom of 3 brandon 12 yrs old On Fri, 9 Feb 2001 00:27:50 EST, cfparents wrote: > Hello > > I read this post, and couldnt help but cry. My biggest fear is what you and > your son are going through now, it breaks my heart. I dont mean to be a > downer here, but I just dont know how you can handle hearing that, except for > the fact that you will do whatever necessary for your little boy, even > though he is 12, he is still a little boy. > It is this type of thing that I tell my inlaws, to make them realize that > this disease is horrible, regardless of the medical breakthroughs, and the > " median life expectancy " , both of which I dont like to think about. > is real, and what he needs to live is real, and that is what I tell them, I > use no names, but I make them aware of the seriousness of this, so they will > know the reality of it, > Sorry if this sounds horrible, but I just couldnt stop typing here. > Take care, and hugs to you and . > > , mommy of 4, , 16 and begging to drive the family auto, (I > dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the > worrier of the family, > , 5 and the next famous artist, and , 17months with CF and reflux > and a beautiful smile and bright blue eyes, whose greatest passions are > dancing and Elmo. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 The one thing I want to do is to make sure that has a fun life, filled with lots of good memories of being little and the beach and things. Sounds like has had lots of fun, and that is wonderful. As for moving to the beach, I wish were old enough to tell me that, would be gone in a heartbeat, although he will probably opt for the mountains., thats ok, I like them too. Have a great time in Aruba, and thanks for the post, once again I cried, but thats ok, I have been doing this for 13 months, and have done it mostly by myself, my husband is still living in the land of denial, so this is mine to carry along with my son. I will give him all that I can, and hope that when he is older he will look back and think that I am a good mommy, and I have given him the best I could. Take care. , mommy of 4, , 16 and begging to drive the family auto, (I dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the worrier of the family, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes, whose greatest passions are dancing and Elmo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 I agree with you about giving all you can. That's what made us decide not tohave any more (even after an IVF attempt). We decided that both the kids should be able to do whatever they want, like in sports, music etc. and that costs alot of money. We also are planning a trip to Scotland in the next two years (costs alot from all the way over here) so with more kids it costs more. I know to alot of people this sounds materialistic, but I want my kids to enjoy everything we can possibily do, without being spoilt brats. Re: s mom > , > After reading your post to me, here is my reply . > > After i had brandon and then it all sunk in about cf . He was probably > around 6-8 months old. and i made a promise either to him or me which ever > because he wasn't able to comprehend what i was talking to him about,but i > have always said i will give him the world as long as i was able to afford > it. and so far i think i have done a great deal in his worldly influences. > a few years ago we went around the U.S. on a 3 week trip and the kids had so > much fun. i think we are going to do it again. > i try to give him everything(not meaning to spoil him he's not like > that)everything that i would want for myself in this day and age. also about > 6 years ago he wanted to move to the ocean . so you know what we did, we > moved to florida within a matter of 2 weeks we took care of business here in > PA and moved to daytona beach. > he was on ssi at the time and they asked me why we moved and i said because > my son wanted to , if you can picture their faces. they said what do you > mean. and i said,my son has cf and he said move so we moved. > then my mother became very ill (strokes) and we moved backed to PA in and > ice storm in january it was horrible Fl weather was 50 degree and PA weather > was - 15 oh my was it hard staying here then. > another move to St.louis won't make a difference to me. there is not really > anything here in PA for us the family, besides my father(my mother passed > away) > The only thing is ,is we are able to afford this and we have been lucky in > that situation,because there are people at clinic that have a hard time > affording to make it to clinic. > but i want him to see everything that i have seen , did, going to do. > i would work 4 jobs if i had to so he could do whatever in his life. > and if he lives to be 100, then he can tell his great-grandchildren that his > mother was the greatest and gave up alot so he could see the world. > oh in april we go to aruba for 1 week(that is my pick, i want the crystal > blue water) i could give a rats a$$ less if he goes or not.all i know is i > am going and it is about time. > my worst fear is that he will die before me and i don't want that . that is > not how it is suppose to work, i go and then the kids get to greive for me. > and me and my husband have been thru the crying part and we are back to > reality and we must take care of his life and make it better so we all can > con't as a family. > i don't want to sound as if i have no conscience or whatever but i > understand what he has(cf) and what he will die from and approximately > around what age(they say 25 yrs) and that is what i hope to receive, if we > have more than that i am very greatful, but i don't what to be robbed of any > time. we have cried and cried and cried and cried i can't cry anymore(right > now at least maybe later)now we have to go and get the next step in our life > ready . > well this let out alot of built-up emotions and i feel good. > > people learn the hard way and the hard way in cf . and the hard way does do > damage to their lungs and you can't reverse damage. > damage con't and con't. even if you don't make mistakes , so cf have worse > cases and damage their lungs , and we learn from that. > > so when a dr says it will affect them maybe not today but 5 years down the > road BELEIVE them. because what you do today affects you 5 yrs later. > > > hopefully you made it all this way > > chris > mom of 3 > brandon 12 yrs old > > > > > On Fri, 9 Feb 2001 00:27:50 EST, cfparents wrote: > > > Hello > > > > I read this post, and couldnt help but cry. My biggest fear is what you > and > > your son are going through now, it breaks my heart. I dont mean to be a > > downer here, but I just dont know how you can handle hearing that, except > for > > the fact that you will do whatever necessary for your little boy, even > > though he is 12, he is still a little boy. > > It is this type of thing that I tell my inlaws, to make them realize that > > > this disease is horrible, regardless of the medical breakthroughs, and > the > > " median life expectancy " , both of which I dont like to think about. > > > is real, and what he needs to live is real, and that is what I tell them, > I > > use no names, but I make them aware of the seriousness of this, so they > will > > know the reality of it, > > Sorry if this sounds horrible, but I just couldnt stop typing here. > > Take care, and hugs to you and . > > > > , mommy of 4, , 16 and begging to drive the family auto, (I > > > dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the > > worrier of the family, > > , 5 and the next famous artist, and , 17months with CF and > reflux > > and a beautiful smile and bright blue eyes, whose greatest passions are > > dancing and Elmo. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2001 Report Share Posted February 10, 2001 SOUNDS GREAT TO ME, Do you want to adopt a grandmom????????? have a great weekend.... LOVE & HUGS, GrandmomBEV Re: s mom I agree with you about giving all you can. That's what made us decide not tohave any more (even after an IVF attempt). We decided that both the kids should be able to do whatever they want, like in sports, music etc. and that costs alot of money. We also are planning a trip to Scotland in the next two years (costs alot from all the way over here) so with more kids it costs more. I know to alot of people this sounds materialistic, but I want my kids to enjoy everything we can possibily do, without being spoilt brats. Re: s mom > , > After reading your post to me, here is my reply . > > After i had brandon and then it all sunk in about cf . He was probably > around 6-8 months old. and i made a promise either to him or me which ever > because he wasn't able to comprehend what i was talking to him about,but i > have always said i will give him the world as long as i was able to afford > it. and so far i think i have done a great deal in his worldly influences. > a few years ago we went around the U.S. on a 3 week trip and the kids had so > much fun. i think we are going to do it again. > i try to give him everything(not meaning to spoil him he's not like > that)everything that i would want for myself in this day and age. also about > 6 years ago he wanted to move to the ocean . so you know what we did, we > moved to florida within a matter of 2 weeks we took care of business here in > PA and moved to daytona beach. > he was on ssi at the time and they asked me why we moved and i said because > my son wanted to , if you can picture their faces. they said what do you > mean. and i said,my son has cf and he said move so we moved. > then my mother became very ill (strokes) and we moved backed to PA in and > ice storm in january it was horrible Fl weather was 50 degree and PA weather > was - 15 oh my was it hard staying here then. > another move to St.louis won't make a difference to me. there is not really > anything here in PA for us the family, besides my father(my mother passed > away) > The only thing is ,is we are able to afford this and we have been lucky in > that situation,because there are people at clinic that have a hard time > affording to make it to clinic. > but i want him to see everything that i have seen , did, going to do. > i would work 4 jobs if i had to so he could do whatever in his life. > and if he lives to be 100, then he can tell his great-grandchildren that his > mother was the greatest and gave up alot so he could see the world. > oh in april we go to aruba for 1 week(that is my pick, i want the crystal > blue water) i could give a rats a$$ less if he goes or not.all i know is i > am going and it is about time. > my worst fear is that he will die before me and i don't want that . that is > not how it is suppose to work, i go and then the kids get to greive for me. > and me and my husband have been thru the crying part and we are back to > reality and we must take care of his life and make it better so we all can > con't as a family. > i don't want to sound as if i have no conscience or whatever but i > understand what he has(cf) and what he will die from and approximately > around what age(they say 25 yrs) and that is what i hope to receive, if we > have more than that i am very greatful, but i don't what to be robbed of any > time. we have cried and cried and cried and cried i can't cry anymore(right > now at least maybe later)now we have to go and get the next step in our life > ready . > well this let out alot of built-up emotions and i feel good. > > people learn the hard way and the hard way in cf . and the hard way does do > damage to their lungs and you can't reverse damage. > damage con't and con't. even if you don't make mistakes , so cf have worse > cases and damage their lungs , and we learn from that. > > so when a dr says it will affect them maybe not today but 5 years down the > road BELEIVE them. because what you do today affects you 5 yrs later. > > > hopefully you made it all this way > > chris > mom of 3 > brandon 12 yrs old > > > > > On Fri, 9 Feb 2001 00:27:50 EST, cfparents wrote: > > > Hello > > > > I read this post, and couldnt help but cry. My biggest fear is what you > and > > your son are going through now, it breaks my heart. I dont mean to be a > > downer here, but I just dont know how you can handle hearing that, except > for > > the fact that you will do whatever necessary for your little boy, even > > though he is 12, he is still a little boy. > > It is this type of thing that I tell my inlaws, to make them realize that > > > this disease is horrible, regardless of the medical breakthroughs, and > the > > " median life expectancy " , both of which I dont like to think about. > > > is real, and what he needs to live is real, and that is what I tell them, > I > > use no names, but I make them aware of the seriousness of this, so they > will > > know the reality of it, > > Sorry if this sounds horrible, but I just couldnt stop typing here. > > Take care, and hugs to you and . > > > > , mommy of 4, , 16 and begging to drive the family auto, (I > > > dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the > > worrier of the family, > > , 5 and the next famous artist, and , 17months with CF and > reflux > > and a beautiful smile and bright blue eyes, whose greatest passions are > > dancing and Elmo. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 DEAR LINDA......I cant find your mailing addy.Are you in CO>? I only have one without email addy.and that is one inCO. last name starts with a B.....What is yours .I have finished the book............HAHA.RIGHT!!! send me address please.-thanks LOVE GRANDMOMBEV Re: s mom The one thing I want to do is to make sure that has a fun life, filled with lots of good memories of being little and the beach and things. Sounds like has had lots of fun, and that is wonderful. As for moving to the beach, I wish were old enough to tell me that, would be gone in a heartbeat, although he will probably opt for the mountains., thats ok, I like them too. Have a great time in Aruba, and thanks for the post, once again I cried, but thats ok, I have been doing this for 13 months, and have done it mostly by myself, my husband is still living in the land of denial, so this is mine to carry along with my son. I will give him all that I can, and hope that when he is older he will look back and think that I am a good mommy, and I have given him the best I could. Take care. , mommy of 4, , 16 and begging to drive the family auto, (I dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the worrier of the family, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes, whose greatest passions are dancing and Elmo. [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Hello GrandmomBev, Nope, I am from Jersey, lol. it is Morse 18 North King Street Gloucester, NJ 08030 Thank you, and get working on that dummie book, I need it really bad here. Take care, Love , mommy of 4, , 16 and begging to drive the family auto, (I dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the worrier of the family, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes, whose greatest passions are dancing and Elmo. Quote Link to comment Share on other sites More sharing options...
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