What would you do differently?

[pjspiegle]

My parenting style would not change. I treat my son the same way his siblings are treated. I had the benefit of having a friend with severe diabetes,she lost her sight and kidneys to it and died at 35. She taught me the need to treat him the same as the other kids as far as discipline went because he needed to learn acceptable behavior just as much as the others did.

I would have more time to give to the other kids though if I didn't have to do treatments and IV's and insulin shots for him and so forth.

I would probably still worry about his future as I do with all of my kids just because I want the very best for each of my kids and I know that none of them came with any guarantees for how long I will have with them. I learned early on in life just how precious life is because of my father being a preacher and doing funerals for babies that died from sids, teens who died in care accidents, and so on.

I also learned that "normal" is very different for each family so what we have is "normal" for us and if it wasn't CF it could be something else, something worse.

I have always tried to thinkg about the fact that the life expectancy is getting longer every year and I would not be helping my child any if I didn't teach him the same things I teach my other kids. I always thought about my parenting from the prespective of "what if they cure CF tomorrow will I regret not setting the boundaries and rules?" Our rules apply to everyone equally and disease is not an exception to the rules.

 

[pjspiegle]

My parenting style would not change. I treat my son the same way his siblings are treated. I had the benefit of having a friend with severe diabetes,she lost her sight and kidneys to it and died at 35. She taught me the need to treat him the same as the other kids as far as discipline went because he needed to learn acceptable behavior just as much as the others did.

I would have more time to give to the other kids though if I didn't have to do treatments and IV's and insulin shots for him and so forth.

I would probably still worry about his future as I do with all of my kids just because I want the very best for each of my kids and I know that none of them came with any guarantees for how long I will have with them. I learned early on in life just how precious life is because of my father being a preacher and doing funerals for babies that died from sids, teens who died in care accidents, and so on.

I also learned that "normal" is very different for each family so what we have is "normal" for us and if it wasn't CF it could be something else, something worse.

I have always tried to thinkg about the fact that the life expectancy is getting longer every year and I would not be helping my child any if I didn't teach him the same things I teach my other kids. I always thought about my parenting from the prespective of "what if they cure CF tomorrow will I regret not setting the boundaries and rules?" Our rules apply to everyone equally and disease is not an exception to the rules.

 

[pjspiegle]

My parenting style would not change. I treat my son the same way his siblings are treated. I had the benefit of having a friend with severe diabetes,she lost her sight and kidneys to it and died at 35. She taught me the need to treat him the same as the other kids as far as discipline went because he needed to learn acceptable behavior just as much as the others did.

I would have more time to give to the other kids though if I didn't have to do treatments and IV's and insulin shots for him and so forth.

I would probably still worry about his future as I do with all of my kids just because I want the very best for each of my kids and I know that none of them came with any guarantees for how long I will have with them. I learned early on in life just how precious life is because of my father being a preacher and doing funerals for babies that died from sids, teens who died in care accidents, and so on.

I also learned that "normal" is very different for each family so what we have is "normal" for us and if it wasn't CF it could be something else, something worse.

I have always tried to thinkg about the fact that the life expectancy is getting longer every year and I would not be helping my child any if I didn't teach him the same things I teach my other kids. I always thought about my parenting from the prespective of "what if they cure CF tomorrow will I regret not setting the boundaries and rules?" Our rules apply to everyone equally and disease is not an exception to the rules.

 

[pjspiegle]

My parenting style would not change. I treat my son the same way his siblings are treated. I had the benefit of having a friend with severe diabetes,she lost her sight and kidneys to it and died at 35. She taught me the need to treat him the same as the other kids as far as discipline went because he needed to learn acceptable behavior just as much as the others did.

I would have more time to give to the other kids though if I didn't have to do treatments and IV's and insulin shots for him and so forth.

I would probably still worry about his future as I do with all of my kids just because I want the very best for each of my kids and I know that none of them came with any guarantees for how long I will have with them. I learned early on in life just how precious life is because of my father being a preacher and doing funerals for babies that died from sids, teens who died in care accidents, and so on.

I also learned that "normal" is very different for each family so what we have is "normal" for us and if it wasn't CF it could be something else, something worse.

I have always tried to thinkg about the fact that the life expectancy is getting longer every year and I would not be helping my child any if I didn't teach him the same things I teach my other kids. I always thought about my parenting from the prespective of "what if they cure CF tomorrow will I regret not setting the boundaries and rules?" Our rules apply to everyone equally and disease is not an exception to the rules.

 

[pjspiegle]

My parenting style would not change. I treat my son the same way his siblings are treated. I had the benefit of having a friend with severe diabetes,she lost her sight and kidneys to it and died at 35. She taught me the need to treat him the same as the other kids as far as discipline went because he needed to learn acceptable behavior just as much as the others did.
<br />
<br />I would have more time to give to the other kids though if I didn't have to do treatments and IV's and insulin shots for him and so forth.
<br />
<br />I would probably still worry about his future as I do with all of my kids just because I want the very best for each of my kids and I know that none of them came with any guarantees for how long I will have with them. I learned early on in life just how precious life is because of my father being a preacher and doing funerals for babies that died from sids, teens who died in care accidents, and so on.
<br />
<br />I also learned that "normal" is very different for each family so what we have is "normal" for us and if it wasn't CF it could be something else, something worse.
<br />
<br />I have always tried to thinkg about the fact that the life expectancy is getting longer every year and I would not be helping my child any if I didn't teach him the same things I teach my other kids. I always thought about my parenting from the prespective of "what if they cure CF tomorrow will I regret not setting the boundaries and rules?" Our rules apply to everyone equally and disease is not an exception to the rules.
<br />

 

[izemmom]

Good responses! Good topic!

My parenting style wouldn't change. I will admit that I find myself parenting Emily differently than I did Isabelle at this age...but it is 100% personality related and not Cf related. Well, I suppose you could make a case that it's, like, 95%/5% since I have to emply the the "Choose your battles" theory with Em A LOT more than I did with Iz, and when it comes down to it, I will save the battles for the non-negotiable CF stuff. She wants to color with markers all over her hands? Go for it. The markers would have been taken away from Isabelle and she would have been offered a distraction. Emily will
A. not settle for a distraction,
B. Scream bloody murder if I even suggest that she not do it
C. Willingly comply with the Vest as soon as she's done coloring...IF I don't rock the boat too much. So, she regulary has blue hands and a purple cheek.

The only other thing that comes to mind has actually been bugging me a lot lately. I think that if it weren't for CF we'd be able to take the girls on some vacations. We want to, but really can't afford it. We are becoming more strapped for cash each month. Co-pays, non-insured feeding tube supplies, extra trips to the doc...it adds up! And, even if we had the money, the thought of traveling with the feeding pump, the formula, the nebs, the meds...it overwhelms me. On the rare occasion that EMily sleeps over at her uncle's house, the back of the truck is FULL of her stuff. Flying would be less than convienient. I do hope that we'll be able to take a short trip in the next year or so. Maybe when she's a bit older and can travel with out the possibility of a tantrum every hour the rest will seem less daunting. I'm saving my pennies for a trip to Disney - it seems like every kid should get there once.

I'm sorry if this sounds whiney. I just read it back to myself and rolled my eyes. Life is not really as bad as this makes it seem. LIke I said, missing out on trips has been on my mind lately. I've been having the green envies every time friends and co-workers pack up and take off. It seems so easy for them. *sigh*

 

[izemmom]

Good responses! Good topic!

My parenting style wouldn't change. I will admit that I find myself parenting Emily differently than I did Isabelle at this age...but it is 100% personality related and not Cf related. Well, I suppose you could make a case that it's, like, 95%/5% since I have to emply the the "Choose your battles" theory with Em A LOT more than I did with Iz, and when it comes down to it, I will save the battles for the non-negotiable CF stuff. She wants to color with markers all over her hands? Go for it. The markers would have been taken away from Isabelle and she would have been offered a distraction. Emily will
A. not settle for a distraction,
B. Scream bloody murder if I even suggest that she not do it
C. Willingly comply with the Vest as soon as she's done coloring...IF I don't rock the boat too much. So, she regulary has blue hands and a purple cheek.

The only other thing that comes to mind has actually been bugging me a lot lately. I think that if it weren't for CF we'd be able to take the girls on some vacations. We want to, but really can't afford it. We are becoming more strapped for cash each month. Co-pays, non-insured feeding tube supplies, extra trips to the doc...it adds up! And, even if we had the money, the thought of traveling with the feeding pump, the formula, the nebs, the meds...it overwhelms me. On the rare occasion that EMily sleeps over at her uncle's house, the back of the truck is FULL of her stuff. Flying would be less than convienient. I do hope that we'll be able to take a short trip in the next year or so. Maybe when she's a bit older and can travel with out the possibility of a tantrum every hour the rest will seem less daunting. I'm saving my pennies for a trip to Disney - it seems like every kid should get there once.

I'm sorry if this sounds whiney. I just read it back to myself and rolled my eyes. Life is not really as bad as this makes it seem. LIke I said, missing out on trips has been on my mind lately. I've been having the green envies every time friends and co-workers pack up and take off. It seems so easy for them. *sigh*

 

[izemmom]

Good responses! Good topic!

My parenting style wouldn't change. I will admit that I find myself parenting Emily differently than I did Isabelle at this age...but it is 100% personality related and not Cf related. Well, I suppose you could make a case that it's, like, 95%/5% since I have to emply the the "Choose your battles" theory with Em A LOT more than I did with Iz, and when it comes down to it, I will save the battles for the non-negotiable CF stuff. She wants to color with markers all over her hands? Go for it. The markers would have been taken away from Isabelle and she would have been offered a distraction. Emily will
A. not settle for a distraction,
B. Scream bloody murder if I even suggest that she not do it
C. Willingly comply with the Vest as soon as she's done coloring...IF I don't rock the boat too much. So, she regulary has blue hands and a purple cheek.

The only other thing that comes to mind has actually been bugging me a lot lately. I think that if it weren't for CF we'd be able to take the girls on some vacations. We want to, but really can't afford it. We are becoming more strapped for cash each month. Co-pays, non-insured feeding tube supplies, extra trips to the doc...it adds up! And, even if we had the money, the thought of traveling with the feeding pump, the formula, the nebs, the meds...it overwhelms me. On the rare occasion that EMily sleeps over at her uncle's house, the back of the truck is FULL of her stuff. Flying would be less than convienient. I do hope that we'll be able to take a short trip in the next year or so. Maybe when she's a bit older and can travel with out the possibility of a tantrum every hour the rest will seem less daunting. I'm saving my pennies for a trip to Disney - it seems like every kid should get there once.

I'm sorry if this sounds whiney. I just read it back to myself and rolled my eyes. Life is not really as bad as this makes it seem. LIke I said, missing out on trips has been on my mind lately. I've been having the green envies every time friends and co-workers pack up and take off. It seems so easy for them. *sigh*

 

[izemmom]

Good responses! Good topic!

My parenting style wouldn't change. I will admit that I find myself parenting Emily differently than I did Isabelle at this age...but it is 100% personality related and not Cf related. Well, I suppose you could make a case that it's, like, 95%/5% since I have to emply the the "Choose your battles" theory with Em A LOT more than I did with Iz, and when it comes down to it, I will save the battles for the non-negotiable CF stuff. She wants to color with markers all over her hands? Go for it. The markers would have been taken away from Isabelle and she would have been offered a distraction. Emily will
A. not settle for a distraction,
B. Scream bloody murder if I even suggest that she not do it
C. Willingly comply with the Vest as soon as she's done coloring...IF I don't rock the boat too much. So, she regulary has blue hands and a purple cheek.

The only other thing that comes to mind has actually been bugging me a lot lately. I think that if it weren't for CF we'd be able to take the girls on some vacations. We want to, but really can't afford it. We are becoming more strapped for cash each month. Co-pays, non-insured feeding tube supplies, extra trips to the doc...it adds up! And, even if we had the money, the thought of traveling with the feeding pump, the formula, the nebs, the meds...it overwhelms me. On the rare occasion that EMily sleeps over at her uncle's house, the back of the truck is FULL of her stuff. Flying would be less than convienient. I do hope that we'll be able to take a short trip in the next year or so. Maybe when she's a bit older and can travel with out the possibility of a tantrum every hour the rest will seem less daunting. I'm saving my pennies for a trip to Disney - it seems like every kid should get there once.

I'm sorry if this sounds whiney. I just read it back to myself and rolled my eyes. Life is not really as bad as this makes it seem. LIke I said, missing out on trips has been on my mind lately. I've been having the green envies every time friends and co-workers pack up and take off. It seems so easy for them. *sigh*

 

[izemmom]

Good responses! Good topic!
<br />
<br />My parenting style wouldn't change. I will admit that I find myself parenting Emily differently than I did Isabelle at this age...but it is 100% personality related and not Cf related. Well, I suppose you could make a case that it's, like, 95%/5% since I have to emply the the "Choose your battles" theory with Em A LOT more than I did with Iz, and when it comes down to it, I will save the battles for the non-negotiable CF stuff. She wants to color with markers all over her hands? Go for it. The markers would have been taken away from Isabelle and she would have been offered a distraction. Emily will
<br />A. not settle for a distraction,
<br />B. Scream bloody murder if I even suggest that she not do it
<br />C. Willingly comply with the Vest as soon as she's done coloring...IF I don't rock the boat too much. So, she regulary has blue hands and a purple cheek.
<br />
<br />The only other thing that comes to mind has actually been bugging me a lot lately. I think that if it weren't for CF we'd be able to take the girls on some vacations. We want to, but really can't afford it. We are becoming more strapped for cash each month. Co-pays, non-insured feeding tube supplies, extra trips to the doc...it adds up! And, even if we had the money, the thought of traveling with the feeding pump, the formula, the nebs, the meds...it overwhelms me. On the rare occasion that EMily sleeps over at her uncle's house, the back of the truck is FULL of her stuff. Flying would be less than convienient. I do hope that we'll be able to take a short trip in the next year or so. Maybe when she's a bit older and can travel with out the possibility of a tantrum every hour the rest will seem less daunting. I'm saving my pennies for a trip to Disney - it seems like every kid should get there once.
<br />
<br />I'm sorry if this sounds whiney. I just read it back to myself and rolled my eyes. Life is not really as bad as this makes it seem. LIke I said, missing out on trips has been on my mind lately. I've been having the green envies every time friends and co-workers pack up and take off. It seems so easy for them. *sigh*
<br />
<br />
<br />

 

[Ratatosk]

Max does the same thing with markers. Usually colors his tummy or arms and says they're tattoos. One day he drew a black mustache on his face. Thank GOODNESS they're all washable, I'd hate for him to discover the permanent ones I have stashed in the office.

Parenting style the same. Though would have a MUCH earlier bedtime, but with that last vest & neb treatment, he's up later. Would also be able to be a bit more flexible -- have sleepovers with relatives at the drop of the hat, take more day trips -- do fun things all day long and come home late in the evening instead of either taking along a nebulizer, cooler with meds or making sure we're home for the early evening beatment.

Max still drinks bathwater, but I wouldn't worry about wiping down grocery carts with antibacterial wipes, wouldn't require washing hands at the park. Wouldn't worry about going to a family event and who was going to be sick this time. Wouldn't constantly be using the antibacterial foam at the clinic or worrying about the community toys or the other children.

 

[Ratatosk]

Max does the same thing with markers. Usually colors his tummy or arms and says they're tattoos. One day he drew a black mustache on his face. Thank GOODNESS they're all washable, I'd hate for him to discover the permanent ones I have stashed in the office.

Parenting style the same. Though would have a MUCH earlier bedtime, but with that last vest & neb treatment, he's up later. Would also be able to be a bit more flexible -- have sleepovers with relatives at the drop of the hat, take more day trips -- do fun things all day long and come home late in the evening instead of either taking along a nebulizer, cooler with meds or making sure we're home for the early evening beatment.

Max still drinks bathwater, but I wouldn't worry about wiping down grocery carts with antibacterial wipes, wouldn't require washing hands at the park. Wouldn't worry about going to a family event and who was going to be sick this time. Wouldn't constantly be using the antibacterial foam at the clinic or worrying about the community toys or the other children.

 

[Ratatosk]

Max does the same thing with markers. Usually colors his tummy or arms and says they're tattoos. One day he drew a black mustache on his face. Thank GOODNESS they're all washable, I'd hate for him to discover the permanent ones I have stashed in the office.

Parenting style the same. Though would have a MUCH earlier bedtime, but with that last vest & neb treatment, he's up later. Would also be able to be a bit more flexible -- have sleepovers with relatives at the drop of the hat, take more day trips -- do fun things all day long and come home late in the evening instead of either taking along a nebulizer, cooler with meds or making sure we're home for the early evening beatment.

Max still drinks bathwater, but I wouldn't worry about wiping down grocery carts with antibacterial wipes, wouldn't require washing hands at the park. Wouldn't worry about going to a family event and who was going to be sick this time. Wouldn't constantly be using the antibacterial foam at the clinic or worrying about the community toys or the other children.

 

[Ratatosk]

Max does the same thing with markers. Usually colors his tummy or arms and says they're tattoos. One day he drew a black mustache on his face. Thank GOODNESS they're all washable, I'd hate for him to discover the permanent ones I have stashed in the office.

Parenting style the same. Though would have a MUCH earlier bedtime, but with that last vest & neb treatment, he's up later. Would also be able to be a bit more flexible -- have sleepovers with relatives at the drop of the hat, take more day trips -- do fun things all day long and come home late in the evening instead of either taking along a nebulizer, cooler with meds or making sure we're home for the early evening beatment.

Max still drinks bathwater, but I wouldn't worry about wiping down grocery carts with antibacterial wipes, wouldn't require washing hands at the park. Wouldn't worry about going to a family event and who was going to be sick this time. Wouldn't constantly be using the antibacterial foam at the clinic or worrying about the community toys or the other children.

 

[Ratatosk]

Max does the same thing with markers. Usually colors his tummy or arms and says they're tattoos. One day he drew a black mustache on his face. Thank GOODNESS they're all washable, I'd hate for him to discover the permanent ones I have stashed in the office.
<br />
<br />Parenting style the same. Though would have a MUCH earlier bedtime, but with that last vest & neb treatment, he's up later. Would also be able to be a bit more flexible -- have sleepovers with relatives at the drop of the hat, take more day trips -- do fun things all day long and come home late in the evening instead of either taking along a nebulizer, cooler with meds or making sure we're home for the early evening beatment.
<br />
<br />Max still drinks bathwater, but I wouldn't worry about wiping down grocery carts with antibacterial wipes, wouldn't require washing hands at the park. Wouldn't worry about going to a family event and who was going to be sick this time. Wouldn't constantly be using the antibacterial foam at the clinic or worrying about the community toys or the other children.

 

[Rebjane]

If Maggie did not have CF, my parenting style would be different. I would be more relaxed. I know because I had a non CF child before maggie for 4 years and I was more relaxed with him. He drank his bath water(ewww) played at the park and would not wash his hands and eats snacks. I would take him to my place of work(the hospital.. and let him watch the cardiac monitors) I would not worry he may pick up PA, MRSA while waiting for his mom at a staff meeting. Having Maggie made me Slow down... Realize that Life is so precious. That's what would be different.

 

[Rebjane]

If Maggie did not have CF, my parenting style would be different. I would be more relaxed. I know because I had a non CF child before maggie for 4 years and I was more relaxed with him. He drank his bath water(ewww) played at the park and would not wash his hands and eats snacks. I would take him to my place of work(the hospital.. and let him watch the cardiac monitors) I would not worry he may pick up PA, MRSA while waiting for his mom at a staff meeting. Having Maggie made me Slow down... Realize that Life is so precious. That's what would be different.

 

[Rebjane]

If Maggie did not have CF, my parenting style would be different. I would be more relaxed. I know because I had a non CF child before maggie for 4 years and I was more relaxed with him. He drank his bath water(ewww) played at the park and would not wash his hands and eats snacks. I would take him to my place of work(the hospital.. and let him watch the cardiac monitors) I would not worry he may pick up PA, MRSA while waiting for his mom at a staff meeting. Having Maggie made me Slow down... Realize that Life is so precious. That's what would be different.

 

[Rebjane]

If Maggie did not have CF, my parenting style would be different. I would be more relaxed. I know because I had a non CF child before maggie for 4 years and I was more relaxed with him. He drank his bath water(ewww) played at the park and would not wash his hands and eats snacks. I would take him to my place of work(the hospital.. and let him watch the cardiac monitors) I would not worry he may pick up PA, MRSA while waiting for his mom at a staff meeting. Having Maggie made me Slow down... Realize that Life is so precious. That's what would be different.

 

[Rebjane]

If Maggie did not have CF, my parenting style would be different. I would be more relaxed. I know because I had a non CF child before maggie for 4 years and I was more relaxed with him. He drank his bath water(ewww) played at the park and would not wash his hands and eats snacks. I would take him to my place of work(the hospital.. and let him watch the cardiac monitors) I would not worry he may pick up PA, MRSA while waiting for his mom at a staff meeting. Having Maggie made me Slow down... Realize that Life is so precious. That's what would be different.