Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Kim, You always have a neat way of putting things in writing!! I always enjoy reading your post!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Welcome to new parents on this list. we're sorry you have to be here but we're glad you found us. Dawn gave some very good advice -- go on automatic pilot for a while. Before long, if you stay strong and don't give into pessimistic and negative thoughts, then you'll find that you're absorbing all the new information without letting it overwhelm you. But you must make it a conscience decision right now not to let it overwhelm you. Don't let CF color your life a darker shade. You make it what you will. One of the blessings of CF (like there is a blessing to a disease?!) is that you will meet some of the most incredibly supportive, caring, nicest people. Your whole life will unfold in ways you never thought possible. You have the opportunity to rise to the occasion... or sink to the depths of bottomless pity party. Your actions -- how you handle the ebb and flow of CF -- teaches your children how to view themselves and how to handle CF. So think carefully how you want your children to grow up with a health impairment. Do you want to empower them... or break their spirit before they're even out of the starting gate? Christal, like you, early on my son had numerous respiratory infections and diarrhea. He also had ear infections one right after the other. Once tubes were put in his ears at age 10 months, he actually did really well -- despite the runny yellow goo seeping from his diapers, running down his legs into his little high-top shoes. Sigh... By the time he was two years old, he was actually a very chubby pink-cheeked strawberry blond, blue-eyed cherubic toddler... but that slowly changed. A month before his third birthday, his eyes turned green his hair darkened and he grew, played, laughed. It was rare indeed to see him without a twinkle in his eyes and the dimple in his cheek crinkled up when he smiled. But by the summer of his 4th birthday he was thin as a bean pole, had allergies and would pant like a worn out puppy in his sleep, and often cough-cough-cough until he vomited in his sheets. His CF diagnosis didn't come until a few months later -- at age 4.4 years -- two weeks after his sister's first birthday. By then, he'd seen three pediatricians, and ENT, an allergist, and a radiologist reviewed his first chest x-rays. They all missed diagnosising CF. When I told the third pediatrician (who was just 3 months out of doing his pediatric residency) that I wanted him sweated tested he responded, " Why? You don't have a family history, do you? And children with CF look like they're from Biafra and he doesn't look like that! " But that day I held fast, insisting on the test. That was November 1983. Today, my son is 6 ft. tall, weighs 165 lbs., and in December he graduated from Loyola University of Chicago with a bachelor of fine arts. He achieved his childhood dream of attending an out-of-state college -- this one was over 700 miles away from the home where he grew up. Ever since he could walk, he explored. Ever since he could run, he ran -- and he led his little league baseball team in stolen bases every summer. Ever since his first smile, he's been charming the socks off young ladies with his sensitivity, polite manners and shy smile. Ever since he could hold a crayon, he'd draw. Art has been his therapy whenever CF reared it's head. He still plays intramural sports to stay fit (and simply because he loves sports!) and he still draws and takes photographs because that's an intrinsic part of who he is. Close your eyes and imagine being 4 years old and doing all the things a normal 4-year old does: waking up each morning, running to the breakfast table for your favorite foods, going to preschool to play with friends, watching Sesame Street in the afternoon while eating a snack and playing with your baby sister -- running outside with your dog sitting beside you in the sandbox. Now overnight, imagine all that changing. Suddenly your mom and dad are opening a capsule to pour these little microbeads into your mouth before you eat a meal. Every night before bedtime, Mom tells you it's time to do your exercises, and she turns you upside down over her lap and thump, thump, thumps your back, sides, chest while you fall asleep after a busy day of playing. Maybe you wonder why things have changed but you don't know how to ask right now... My son's sweat test and diagnosis came on a Friday. We cried all weekend, friends commiserated with us while the grandparents looked at each other and said, " That couldn't have come from our side of the family! " or " I bet that came from my side of the family; I remember how 'sickly' my cousin always was and he died of liver disease... " Gee... thanks. Anyway, learn to ask for help when you need it. If you ever feel like your friends and family don't understand or aren't listening the way you need them to listen, then don't blame -- teach. Don't be afraid to say, " I just need to talk, and I just need someone to listen. You don't have to say a word, I promise. Please just let me talk out loud and then give me a hug when I'm finished. " It works. I promise. Buy lots of Lysol, toilet paper, stickers for rewards, never force your child to eat, learn the difference between good fats and bad fats, avoid over-processed foods, and smile before you brush your teeth every morning -- it's hard to stay grumpy when you're facing yourself in the mirror wearing a goofy grin. Lots of hugs and understanding, Kim Mom of (23 1/2 with cf and asthma) and (asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Wow! Thanks for posting that. I'm crying, but it really helped!! Wendi Mom to Keira (3 wocf) and (18mos wcf) > Welcome to new parents on this list. we're sorry you have to be here > but we're glad you found us. > > Dawn gave some very good advice -- go on automatic pilot for a while. > > Before long, if you stay strong and don't give into pessimistic > and negative thoughts, then you'll find that you're absorbing all the > new information without letting it overwhelm you. > > But you must make it a conscience decision right now not to let it > overwhelm you. Don't let CF color your life a darker shade. You make > it what you will. > > One of the blessings of CF (like there is a blessing to a disease?!) > is that you will meet some of the most incredibly supportive, caring, > nicest people. Your whole life will unfold in ways you never thought > possible. > > You have the opportunity to rise to the occasion... or sink to the > depths of bottomless pity party. > > Your actions -- how you handle the ebb and flow of CF -- teaches your > children how to view themselves and how to handle CF. So think > carefully how you want your children to grow up with a health > impairment. > > Do you want to empower them... or break their spirit before they're > even out of the starting gate? > > Christal, like you, early on my son had numerous respiratory > infections and diarrhea. He also had ear infections one right after > the other. Once tubes were put in his ears at age 10 months, he > actually did really well -- despite the runny yellow goo seeping from > his diapers, running down his legs into his little high-top shoes. > > Sigh... > > By the time he was two years old, he was actually a very chubby > pink-cheeked strawberry blond, blue-eyed cherubic toddler... but that > slowly changed. > > A month before his third birthday, his eyes turned green his hair > darkened and he grew, played, laughed. It was rare indeed to see him > without a twinkle in his eyes and the dimple in his cheek crinkled up > when he smiled. > > But by the summer of his 4th birthday he was thin as a bean pole, had > allergies and would pant like a worn out puppy in his sleep, and > often cough-cough-cough until he vomited in his sheets. > > His CF diagnosis didn't come until a few months later -- at age 4.4 > years -- two weeks after his sister's first birthday. By then, he'd > seen three pediatricians, and ENT, an allergist, and a radiologist > reviewed his first chest x-rays. > > They all missed diagnosising CF. When I told the third pediatrician > (who was just 3 months out of doing his pediatric residency) that I > wanted him sweated tested he responded, " Why? You don't have a family > history, do you? And children with CF look like they're from Biafra > and he doesn't look like that! " > > But that day I held fast, insisting on the test. That was November > 1983. > > Today, my son is 6 ft. tall, weighs 165 lbs., and in December he > graduated from Loyola University of Chicago with a bachelor of fine > arts. He achieved his childhood dream of attending an out-of-state > college -- this one was over 700 miles away from the home where he > grew up. > > Ever since he could walk, he explored. Ever since he could run, he ran > -- and he led his little league baseball team in stolen bases every > summer. Ever since his first smile, he's been charming the socks off > young ladies with his sensitivity, polite manners and shy smile. > > Ever since he could hold a crayon, he'd draw. Art has been his therapy > whenever CF reared it's head. > > He still plays intramural sports to stay fit (and simply because he > loves sports!) and he still draws and takes photographs because that's > an intrinsic part of who he is. > > Close your eyes and imagine being 4 years old and doing all the things > a normal 4-year old does: waking up each morning, running to the > breakfast table for your favorite foods, going to preschool to play > with friends, watching Sesame Street in the afternoon while eating a > snack and playing with your baby sister -- running outside with your > dog sitting beside you in the sandbox. > > Now overnight, imagine all that changing. Suddenly your mom and dad > are opening a capsule to pour these little microbeads into your mouth > before you eat a meal. Every night before bedtime, Mom tells you it's > time to do your exercises, and she turns you upside down over her lap > and thump, thump, thumps your back, sides, chest while you fall asleep > after a busy day of playing. > > Maybe you wonder why things have changed but you don't know how to ask > right now... > > My son's sweat test and diagnosis came on a Friday. We cried all > weekend, friends commiserated with us while the grandparents looked at > each other and said, " That couldn't have come from our side of the > family! " or " I bet that came from my side of the family; I remember > how 'sickly' my cousin always was and he died of liver disease... " > > Gee... thanks. > > Anyway, learn to ask for help when you need it. If you ever feel like > your friends and family don't understand or aren't listening the way > you need them to listen, then don't blame -- teach. Don't be afraid to > say, " I just need to talk, and I just need someone to listen. You > don't have to say a word, I promise. Please just let me talk out loud > and then give me a hug when I'm finished. " > > It works. I promise. > > Buy lots of Lysol, toilet paper, stickers for rewards, never force > your child to eat, learn the difference between good fats and bad > fats, avoid over-processed foods, and smile before you brush your > teeth every morning -- it's hard to stay grumpy when you're facing > yourself in the mirror wearing a goofy grin. > > Lots of hugs and understanding, > Kim > Mom of (23 1/2 with cf and asthma) and (asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Kim, This was lovely. Thanks. I still feel new, and this really helped. Keeley mom to Leila, 7m. wcf, and Hadley, 2.9yrs. nocf To parents new to CF Welcome to new parents on this list. we're sorry you have to be here but we're glad you found us. Dawn gave some very good advice -- go on automatic pilot for a while. Before long, if you stay strong and don't give into pessimistic and negative thoughts, then you'll find that you're absorbing all the new information without letting it overwhelm you. But you must make it a conscience decision right now not to let it overwhelm you. Don't let CF color your life a darker shade. You make it what you will. One of the blessings of CF (like there is a blessing to a disease?!) is that you will meet some of the most incredibly supportive, caring, nicest people. Your whole life will unfold in ways you never thought possible. You have the opportunity to rise to the occasion... or sink to the depths of bottomless pity party. Your actions -- how you handle the ebb and flow of CF -- teaches your children how to view themselves and how to handle CF. So think carefully how you want your children to grow up with a health impairment. Do you want to empower them... or break their spirit before they're even out of the starting gate? Christal, like you, early on my son had numerous respiratory infections and diarrhea. He also had ear infections one right after the other. Once tubes were put in his ears at age 10 months, he actually did really well -- despite the runny yellow goo seeping from his diapers, running down his legs into his little high-top shoes. Sigh... By the time he was two years old, he was actually a very chubby pink-cheeked strawberry blond, blue-eyed cherubic toddler... but that slowly changed. A month before his third birthday, his eyes turned green his hair darkened and he grew, played, laughed. It was rare indeed to see him without a twinkle in his eyes and the dimple in his cheek crinkled up when he smiled. But by the summer of his 4th birthday he was thin as a bean pole, had allergies and would pant like a worn out puppy in his sleep, and often cough-cough-cough until he vomited in his sheets. His CF diagnosis didn't come until a few months later -- at age 4.4 years -- two weeks after his sister's first birthday. By then, he'd seen three pediatricians, and ENT, an allergist, and a radiologist reviewed his first chest x-rays. They all missed diagnosising CF. When I told the third pediatrician (who was just 3 months out of doing his pediatric residency) that I wanted him sweated tested he responded, " Why? You don't have a family history, do you? And children with CF look like they're from Biafra and he doesn't look like that! " But that day I held fast, insisting on the test. That was November 1983. Today, my son is 6 ft. tall, weighs 165 lbs., and in December he graduated from Loyola University of Chicago with a bachelor of fine arts. He achieved his childhood dream of attending an out-of-state college -- this one was over 700 miles away from the home where he grew up. Ever since he could walk, he explored. Ever since he could run, he ran -- and he led his little league baseball team in stolen bases every summer. Ever since his first smile, he's been charming the socks off young ladies with his sensitivity, polite manners and shy smile. Ever since he could hold a crayon, he'd draw. Art has been his therapy whenever CF reared it's head. He still plays intramural sports to stay fit (and simply because he loves sports!) and he still draws and takes photographs because that's an intrinsic part of who he is. Close your eyes and imagine being 4 years old and doing all the things a normal 4-year old does: waking up each morning, running to the breakfast table for your favorite foods, going to preschool to play with friends, watching Sesame Street in the afternoon while eating a snack and playing with your baby sister -- running outside with your dog sitting beside you in the sandbox. Now overnight, imagine all that changing. Suddenly your mom and dad are opening a capsule to pour these little microbeads into your mouth before you eat a meal. Every night before bedtime, Mom tells you it's time to do your exercises, and she turns you upside down over her lap and thump, thump, thumps your back, sides, chest while you fall asleep after a busy day of playing. Maybe you wonder why things have changed but you don't know how to ask right now... My son's sweat test and diagnosis came on a Friday. We cried all weekend, friends commiserated with us while the grandparents looked at each other and said, " That couldn't have come from our side of the family! " or " I bet that came from my side of the family; I remember how 'sickly' my cousin always was and he died of liver disease... " Gee... thanks. Anyway, learn to ask for help when you need it. If you ever feel like your friends and family don't understand or aren't listening the way you need them to listen, then don't blame -- teach. Don't be afraid to say, " I just need to talk, and I just need someone to listen. You don't have to say a word, I promise. Please just let me talk out loud and then give me a hug when I'm finished. " It works. I promise. Buy lots of Lysol, toilet paper, stickers for rewards, never force your child to eat, learn the difference between good fats and bad fats, avoid over-processed foods, and smile before you brush your teeth every morning -- it's hard to stay grumpy when you're facing yourself in the mirror wearing a goofy grin. Lots of hugs and understanding, Kim Mom of (23 1/2 with cf and asthma) and (asthma no cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Thanks Kim, Always eloquent, always insightful, always makes my day Christy Mom of Wyatt 7wcf and Hunter 3wocf > Welcome to new parents on this list. we're sorry you have to be here > but we're glad you found us. > > Dawn gave some very good advice -- go on automatic pilot for a while. > > Before long, if you stay strong and don't give into pessimistic > and negative thoughts, then you'll find that you're absorbing all the > new information without letting it overwhelm you. > > But you must make it a conscience decision right now not to let it > overwhelm you. Don't let CF color your life a darker shade. You make > it what you will. > > One of the blessings of CF (like there is a blessing to a disease?!) > is that you will meet some of the most incredibly supportive, caring, > nicest people. Your whole life will unfold in ways you never thought > possible. > > You have the opportunity to rise to the occasion... or sink to the > depths of bottomless pity party. > > Your actions -- how you handle the ebb and flow of CF -- teaches your > children how to view themselves and how to handle CF. So think > carefully how you want your children to grow up with a health > impairment. > > Do you want to empower them... or break their spirit before they're > even out of the starting gate? > > Christal, like you, early on my son had numerous respiratory > infections and diarrhea. He also had ear infections one right after > the other. Once tubes were put in his ears at age 10 months, he > actually did really well -- despite the runny yellow goo seeping from > his diapers, running down his legs into his little high-top shoes. > > Sigh... > > By the time he was two years old, he was actually a very chubby > pink-cheeked strawberry blond, blue-eyed cherubic toddler... but that > slowly changed. > > A month before his third birthday, his eyes turned green his hair > darkened and he grew, played, laughed. It was rare indeed to see him > without a twinkle in his eyes and the dimple in his cheek crinkled up > when he smiled. > > But by the summer of his 4th birthday he was thin as a bean pole, had > allergies and would pant like a worn out puppy in his sleep, and > often cough-cough-cough until he vomited in his sheets. > > His CF diagnosis didn't come until a few months later -- at age 4.4 > years -- two weeks after his sister's first birthday. By then, he'd > seen three pediatricians, and ENT, an allergist, and a radiologist > reviewed his first chest x-rays. > > They all missed diagnosising CF. When I told the third pediatrician > (who was just 3 months out of doing his pediatric residency) that I > wanted him sweated tested he responded, " Why? You don't have a family > history, do you? And children with CF look like they're from Biafra > and he doesn't look like that! " > > But that day I held fast, insisting on the test. That was November > 1983. > > Today, my son is 6 ft. tall, weighs 165 lbs., and in December he > graduated from Loyola University of Chicago with a bachelor of fine > arts. He achieved his childhood dream of attending an out-of-state > college -- this one was over 700 miles away from the home where he > grew up. > > Ever since he could walk, he explored. Ever since he could run, he ran > -- and he led his little league baseball team in stolen bases every > summer. Ever since his first smile, he's been charming the socks off > young ladies with his sensitivity, polite manners and shy smile. > > Ever since he could hold a crayon, he'd draw. Art has been his therapy > whenever CF reared it's head. > > He still plays intramural sports to stay fit (and simply because he > loves sports!) and he still draws and takes photographs because that's > an intrinsic part of who he is. > > Close your eyes and imagine being 4 years old and doing all the things > a normal 4-year old does: waking up each morning, running to the > breakfast table for your favorite foods, going to preschool to play > with friends, watching Sesame Street in the afternoon while eating a > snack and playing with your baby sister -- running outside with your > dog sitting beside you in the sandbox. > > Now overnight, imagine all that changing. Suddenly your mom and dad > are opening a capsule to pour these little microbeads into your mouth > before you eat a meal. Every night before bedtime, Mom tells you it's > time to do your exercises, and she turns you upside down over her lap > and thump, thump, thumps your back, sides, chest while you fall asleep > after a busy day of playing. > > Maybe you wonder why things have changed but you don't know how to ask > right now... > > My son's sweat test and diagnosis came on a Friday. We cried all > weekend, friends commiserated with us while the grandparents looked at > each other and said, " That couldn't have come from our side of the > family! " or " I bet that came from my side of the family; I remember > how 'sickly' my cousin always was and he died of liver disease... " > > Gee... thanks. > > Anyway, learn to ask for help when you need it. If you ever feel like > your friends and family don't understand or aren't listening the way > you need them to listen, then don't blame -- teach. Don't be afraid to > say, " I just need to talk, and I just need someone to listen. You > don't have to say a word, I promise. Please just let me talk out loud > and then give me a hug when I'm finished. " > > It works. I promise. > > Buy lots of Lysol, toilet paper, stickers for rewards, never force > your child to eat, learn the difference between good fats and bad > fats, avoid over-processed foods, and smile before you brush your > teeth every morning -- it's hard to stay grumpy when you're facing > yourself in the mirror wearing a goofy grin. > > Lots of hugs and understanding, > Kim > Mom of (23 1/2 with cf and asthma) and (asthma no cf) Quote Link to comment Share on other sites More sharing options...
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