Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 Hi Holly and the rest of you who feel like this, I too feel like noone knows what exactly 'getting to school on time' means to me!! Or 'getting to bed at a reasonable hour' either! Fitting in those 1/2 hour vest sessions and meds are difficult. It is amazing I can remember it all, which pills to give him......if I gave him his vitamins.....if he did his inhaler etc. etc. My husband travels much of the time, and it is mostly my responsibility.....my choice as my husband says. I choose to stay home with my kids. I frankly can't imagine (like some of you no doubt) how hard it would be managing the mornings along with dressing for a career! It is hard enough managing dinner, while vest and nebs are being done, hollering over the television to turn the vest timer on for another 10 mins, changing the nebulizer at the right time so not to 'waste' time. Then my 3yo who turns off the television on his brother just to annoy him while he is doing the vest. It is just nuts around here at times. I felt like yelling at that Oprah show.......'wake up and smell the coffee girls!!' Be thankful for what you have. But then again, that is the most important lesson I have learned through this whole cf thing. Every time I want to scream that I can't do it anymore, I see someone with a problem worse than mine. When my son is healthy, things are great. Ofcourse we have the day to day battles of treatment, meds etc., but overall things are great. To me, doing 's therapy is like washing the dishes.....just a part of everyday life. But when he gets sick, the rug is pulled right out from under me. I get scared. Just wanted to drop a line about this subject. My friends all say, 'wow, Cheri, how do you do it?' but really they have no idea what they are even asking. Well, that is my two cents. Just feeling a little pitiful tonight. Cheri B., Mom to , 8yo invitro baby wcf, and Christian 3yo, adopted nocf, both my gifts from Heaven! ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 I totally think you hit it on the head Cheri! Part of me doesn't want to ridicule them bc to them, their problems are sincere. Their feelings of frustration are genuine. My friend and I commiserate about being parents. Period. Then another part of me thinks just as you do. Wake up and Smell the Coffee. My God! You have it so easy compared to a lot of people. To get Wyatt to school on time he wakes up an hour earlier than his non CF counterparts to do the VEST and TOBI, not to mention the hour he spends on the toilet every morning (sorry for being grose) due to unusual things they have to deal w/ in that area. His brother gets jealous of the extra attention I give to him and he gets jealous of the extra attention Hunter gets bc he's only 2 and still needs help doing things. (Plus he still likes to hug and kiss and cuddle as Wyatt does not) I have a dry erase board that has which meds he takes and what days because some are every other day so I forget...Did he have them Monday? Does he need them today? I used to stay home w/ him when he was young and very dependant on me because I knew how tough it was on me as a Mom. How on earth would that be for a daycare provider? Luckily when I went back to work my best friend was a home daycare provider and took him for me. Now he's in school. I stay at home now but will again go back to work when we move back to California. Then it's half as much time to do things and twice as much to do. To be honest, I'm looking forward to the " break " of being at work. Which sounds awful I know, but there is ME time. Not kid or CF time. YOur boys sound like mine. Hunter will turn off the nebulizer because Wyatt can't get up from his chair to turn it back on because of all the tubes and chords from that and the VEST. He'll turn off the TV adn I'm trying to get dinner ready and I hear HUNTER, STOP IT! TURN IT ON! HUNTERRRRRR. AARRGGHH Then of course yes, like you, I've been reading these boards lately and hearing of all the doctor visits to fix this problem or that and I've been very lucky w/ his CF. It hasn't been that serious yet. He's done great so far. A few set backs along the way that drop me to my knees because they make me face the reality of this disease. So I have to wipe my tears, pick myself up and focus on the cure and carry on. If I don't, I'm no good to anyone. I don't want to scare him. I dont' want him to think he'll die bc I don't believe he will till he's old and I'm long gone and he's lived his own full life. These other Moms on Oprah, while they have to face the tough challenges being a parent brings they should feel lucky that they dont' have to worry about outliving their children. They don't sit at night just watching them sleep thinking if they die what will I do?! I've done that, tears streaming down my face. He's gorgeous my Wyatt is....I can't lose him! OK I'm done venting... just so related to everything you said..Thanks for saying it! Christy mom of Wyatt 7wcf and Hunter 2wocf > Hi Holly and the rest of you who feel like this, > I too feel like noone knows what exactly 'getting to school on time' means > to me!! Or 'getting to bed at a reasonable hour' either! Fitting in those > 1/2 hour vest sessions and meds are difficult. It is amazing I can remember > it all, which pills to give him......if I gave him his vitamins.....if he > did his inhaler etc. etc. My husband travels much of the time, and it is > mostly my responsibility.....my choice as my husband says. I choose to stay > home with my kids. I frankly can't imagine (like some of you no doubt) how > hard it would be managing the mornings along with dressing for a career! It > is hard enough managing dinner, while vest and nebs are being done, > hollering over the television to turn the vest timer on for another 10 mins, > changing the nebulizer at the right time so not to 'waste' time. Then my > 3yo who turns off the television on his brother just to annoy him while he > is doing the vest. It is just nuts around here at times. I felt like > yelling at that Oprah show.......'wake up and smell the coffee girls!!' Be > thankful for what you have. But then again, that is the most important > lesson I have learned through this whole cf thing. Every time I want to > scream that I can't do it anymore, I see someone with a problem worse than > mine. When my son is healthy, things are great. Ofcourse we have > the day to day battles of treatment, meds etc., but overall things are > great. To me, doing 's therapy is like washing the dishes.....just a > part of everyday life. But when he gets sick, the rug is pulled right out > from under me. I get scared. Just wanted to drop a line about this > subject. My friends all say, 'wow, Cheri, how do you do it?' but really > they have no idea what they are even asking. Well, that is my two cents. > Just feeling a little pitiful tonight. > Cheri B., Mom to , 8yo invitro baby wcf, and Christian 3yo, adopted > nocf, both my gifts from Heaven! > > ------------------------------------------- > Introducing NetZero Long Distance > Unlimited Long Distance only $29.95/ month! > Sign Up Today! www.netzerolongdistance.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2002 Report Share Posted October 19, 2002 I totally think you hit it on the head Cheri! Part of me doesn't want to ridicule them bc to them, their problems are sincere. Their feelings of frustration are genuine. My friend and I commiserate about being parents. Period. Then another part of me thinks just as you do. Wake up and Smell the Coffee. My God! You have it so easy compared to a lot of people. To get Wyatt to school on time he wakes up an hour earlier than his non CF counterparts to do the VEST and TOBI, not to mention the hour he spends on the toilet every morning (sorry for being grose) due to unusual things they have to deal w/ in that area. His brother gets jealous of the extra attention I give to him and he gets jealous of the extra attention Hunter gets bc he's only 2 and still needs help doing things. (Plus he still likes to hug and kiss and cuddle as Wyatt does not) I have a dry erase board that has which meds he takes and what days because some are every other day so I forget...Did he have them Monday? Does he need them today? I used to stay home w/ him when he was young and very dependant on me because I knew how tough it was on me as a Mom. How on earth would that be for a daycare provider? Luckily when I went back to work my best friend was a home daycare provider and took him for me. Now he's in school. I stay at home now but will again go back to work when we move back to California. Then it's half as much time to do things and twice as much to do. To be honest, I'm looking forward to the " break " of being at work. Which sounds awful I know, but there is ME time. Not kid or CF time. YOur boys sound like mine. Hunter will turn off the nebulizer because Wyatt can't get up from his chair to turn it back on because of all the tubes and chords from that and the VEST. He'll turn off the TV adn I'm trying to get dinner ready and I hear HUNTER, STOP IT! TURN IT ON! HUNTERRRRRR. AARRGGHH Then of course yes, like you, I've been reading these boards lately and hearing of all the doctor visits to fix this problem or that and I've been very lucky w/ his CF. It hasn't been that serious yet. He's done great so far. A few set backs along the way that drop me to my knees because they make me face the reality of this disease. So I have to wipe my tears, pick myself up and focus on the cure and carry on. If I don't, I'm no good to anyone. I don't want to scare him. I dont' want him to think he'll die bc I don't believe he will till he's old and I'm long gone and he's lived his own full life. These other Moms on Oprah, while they have to face the tough challenges being a parent brings they should feel lucky that they dont' have to worry about outliving their children. They don't sit at night just watching them sleep thinking if they die what will I do?! I've done that, tears streaming down my face. He's gorgeous my Wyatt is....I can't lose him! OK I'm done venting... just so related to everything you said..Thanks for saying it! Christy mom of Wyatt 7wcf and Hunter 2wocf > Hi Holly and the rest of you who feel like this, > I too feel like noone knows what exactly 'getting to school on time' means > to me!! Or 'getting to bed at a reasonable hour' either! Fitting in those > 1/2 hour vest sessions and meds are difficult. It is amazing I can remember > it all, which pills to give him......if I gave him his vitamins.....if he > did his inhaler etc. etc. My husband travels much of the time, and it is > mostly my responsibility.....my choice as my husband says. I choose to stay > home with my kids. I frankly can't imagine (like some of you no doubt) how > hard it would be managing the mornings along with dressing for a career! It > is hard enough managing dinner, while vest and nebs are being done, > hollering over the television to turn the vest timer on for another 10 mins, > changing the nebulizer at the right time so not to 'waste' time. Then my > 3yo who turns off the television on his brother just to annoy him while he > is doing the vest. It is just nuts around here at times. I felt like > yelling at that Oprah show.......'wake up and smell the coffee girls!!' Be > thankful for what you have. But then again, that is the most important > lesson I have learned through this whole cf thing. Every time I want to > scream that I can't do it anymore, I see someone with a problem worse than > mine. When my son is healthy, things are great. Ofcourse we have > the day to day battles of treatment, meds etc., but overall things are > great. To me, doing 's therapy is like washing the dishes.....just a > part of everyday life. But when he gets sick, the rug is pulled right out > from under me. I get scared. Just wanted to drop a line about this > subject. My friends all say, 'wow, Cheri, how do you do it?' but really > they have no idea what they are even asking. Well, that is my two cents. > Just feeling a little pitiful tonight. > Cheri B., Mom to , 8yo invitro baby wcf, and Christian 3yo, adopted > nocf, both my gifts from Heaven! > > ------------------------------------------- > Introducing NetZero Long Distance > Unlimited Long Distance only $29.95/ month! > Sign Up Today! www.netzerolongdistance.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 In a message dated 10/20/2002 9:38:10 AM Central Daylight Time, ROSEMARY3FOR3wCF@... writes: > Rosemary That's the whole point Rosemary we want the world to know what we go through. And with Oprah's help we are hoping she will go into someone's home and see what we have to go through just to get our kids ready in the morning. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 In a message dated 10/20/2002 9:38:10 AM Central Daylight Time, ROSEMARY3FOR3wCF@... writes: > Rosemary That's the whole point Rosemary we want the world to know what we go through. And with Oprah's help we are hoping she will go into someone's home and see what we have to go through just to get our kids ready in the morning. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 In a message dated 10/20/2002 9:38:10 AM Central Daylight Time, ROSEMARY3FOR3wCF@... writes: > Rosemary That's the whole point Rosemary we want the world to know what we go through. And with Oprah's help we are hoping she will go into someone's home and see what we have to go through just to get our kids ready in the morning. Deb A Quote Link to comment Share on other sites More sharing options...
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