Something to get off my chest...

M

mneville

Guest
The perspectives are interesting and I agree with it all.

I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples.

I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it. He is way too busy loving life. I also FIRMLY believe in teaching him how to care for himself. Doing the VEST is like brushing his teeth for Aidan. At two years old, he knows the names of all his meds, can operate the VEST himself for an hour everyday, does his own nebs, swallows up to 8-9 Creon pills at a time, knows what throat cultures are ect...

We say "Yeah you have CF. It means the VEST and Creon. No big deal" and right now we are very lucky that it's not. Thanks for the perspectives!

Megan
 
M

mneville

Guest
The perspectives are interesting and I agree with it all.

I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples.

I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it. He is way too busy loving life. I also FIRMLY believe in teaching him how to care for himself. Doing the VEST is like brushing his teeth for Aidan. At two years old, he knows the names of all his meds, can operate the VEST himself for an hour everyday, does his own nebs, swallows up to 8-9 Creon pills at a time, knows what throat cultures are ect...

We say "Yeah you have CF. It means the VEST and Creon. No big deal" and right now we are very lucky that it's not. Thanks for the perspectives!

Megan
 
M

mneville

Guest
The perspectives are interesting and I agree with it all.

I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples.

I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it. He is way too busy loving life. I also FIRMLY believe in teaching him how to care for himself. Doing the VEST is like brushing his teeth for Aidan. At two years old, he knows the names of all his meds, can operate the VEST himself for an hour everyday, does his own nebs, swallows up to 8-9 Creon pills at a time, knows what throat cultures are ect...

We say "Yeah you have CF. It means the VEST and Creon. No big deal" and right now we are very lucky that it's not. Thanks for the perspectives!

Megan
 
M

mneville

Guest
The perspectives are interesting and I agree with it all.

I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples.

I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it. He is way too busy loving life. I also FIRMLY believe in teaching him how to care for himself. Doing the VEST is like brushing his teeth for Aidan. At two years old, he knows the names of all his meds, can operate the VEST himself for an hour everyday, does his own nebs, swallows up to 8-9 Creon pills at a time, knows what throat cultures are ect...

We say "Yeah you have CF. It means the VEST and Creon. No big deal" and right now we are very lucky that it's not. Thanks for the perspectives!

Megan
 
M

mneville

Guest
The perspectives are interesting and I agree with it all.

I think it is a parent's instinct to protect no matter what, whether the child have CF or not. It kills me to have my child hurt in anyway. However; as parents, the best thing we have to do sometimes is suck it up and let our children live and learn while providing good examples.

I hate that Aidan has CF but I don't think I will ever let him see that I am upset by it. He is way too busy loving life. I also FIRMLY believe in teaching him how to care for himself. Doing the VEST is like brushing his teeth for Aidan. At two years old, he knows the names of all his meds, can operate the VEST himself for an hour everyday, does his own nebs, swallows up to 8-9 Creon pills at a time, knows what throat cultures are ect...

We say "Yeah you have CF. It means the VEST and Creon. No big deal" and right now we are very lucky that it's not. Thanks for the perspectives!

Megan
 
A

AnD

New member
"Fragile little flower"? lol- I think the "Stubborn gene" and the "Will of Iron" gene may somehow be connected to the cf gene! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And my daughter would be a "symptomatic carrier" for those traits -lol .

And that just goes to show how widely variable circumstances can be- and we probably won't know all the details the vast majority of the time in how a parent (and their child's doctors) make decisions like that (unless we talk about it <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).
 
A

AnD

New member
"Fragile little flower"? lol- I think the "Stubborn gene" and the "Will of Iron" gene may somehow be connected to the cf gene! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And my daughter would be a "symptomatic carrier" for those traits -lol .

And that just goes to show how widely variable circumstances can be- and we probably won't know all the details the vast majority of the time in how a parent (and their child's doctors) make decisions like that (unless we talk about it <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).
 
A

AnD

New member
"Fragile little flower"? lol- I think the "Stubborn gene" and the "Will of Iron" gene may somehow be connected to the cf gene! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And my daughter would be a "symptomatic carrier" for those traits -lol .

And that just goes to show how widely variable circumstances can be- and we probably won't know all the details the vast majority of the time in how a parent (and their child's doctors) make decisions like that (unless we talk about it <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).
 
A

AnD

New member
"Fragile little flower"? lol- I think the "Stubborn gene" and the "Will of Iron" gene may somehow be connected to the cf gene! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And my daughter would be a "symptomatic carrier" for those traits -lol .

And that just goes to show how widely variable circumstances can be- and we probably won't know all the details the vast majority of the time in how a parent (and their child's doctors) make decisions like that (unless we talk about it <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).
 
A

AnD

New member
"Fragile little flower"? lol- I think the "Stubborn gene" and the "Will of Iron" gene may somehow be connected to the cf gene! <img src="i/expressions/face-icon-small-wink.gif" border="0"> And my daughter would be a "symptomatic carrier" for those traits -lol .

And that just goes to show how widely variable circumstances can be- and we probably won't know all the details the vast majority of the time in how a parent (and their child's doctors) make decisions like that (unless we talk about it <img src="i/expressions/face-icon-small-wink.gif" border="0"> ).
 
K

kayleesgrandma

New member
TO SURVIVE THE STRUGGLE
A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force the body through that little hole.

Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck.
Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening was the way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health.

Sometimes struggles are exactly what we need in our life. If we were to go through our life without any obstacles, we would be crippled. We would not be as strong as what we could have been. Give every opportunity a chance, leave no room for regrets.

Peace to all who survive the struggle.

I stole this from my daughter's blog (kayleessmile). She won't know, she never comes to forum anyway. It is so hard as parents, to step back and let our kids be kids. But the only thing we can do is trust our judgement, and know that parenting is a learning process. It's easy to judge when you aren't wearing the same tight shoes we are....
 
K

kayleesgrandma

New member
TO SURVIVE THE STRUGGLE
A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force the body through that little hole.

Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck.
Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening was the way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health.

Sometimes struggles are exactly what we need in our life. If we were to go through our life without any obstacles, we would be crippled. We would not be as strong as what we could have been. Give every opportunity a chance, leave no room for regrets.

Peace to all who survive the struggle.

I stole this from my daughter's blog (kayleessmile). She won't know, she never comes to forum anyway. It is so hard as parents, to step back and let our kids be kids. But the only thing we can do is trust our judgement, and know that parenting is a learning process. It's easy to judge when you aren't wearing the same tight shoes we are....
 
K

kayleesgrandma

New member
TO SURVIVE THE STRUGGLE
A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force the body through that little hole.

Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck.
Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening was the way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health.

Sometimes struggles are exactly what we need in our life. If we were to go through our life without any obstacles, we would be crippled. We would not be as strong as what we could have been. Give every opportunity a chance, leave no room for regrets.

Peace to all who survive the struggle.

I stole this from my daughter's blog (kayleessmile). She won't know, she never comes to forum anyway. It is so hard as parents, to step back and let our kids be kids. But the only thing we can do is trust our judgement, and know that parenting is a learning process. It's easy to judge when you aren't wearing the same tight shoes we are....
 
K

kayleesgrandma

New member
TO SURVIVE THE STRUGGLE
A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force the body through that little hole.

Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck.
Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening was the way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health.

Sometimes struggles are exactly what we need in our life. If we were to go through our life without any obstacles, we would be crippled. We would not be as strong as what we could have been. Give every opportunity a chance, leave no room for regrets.

Peace to all who survive the struggle.

I stole this from my daughter's blog (kayleessmile). She won't know, she never comes to forum anyway. It is so hard as parents, to step back and let our kids be kids. But the only thing we can do is trust our judgement, and know that parenting is a learning process. It's easy to judge when you aren't wearing the same tight shoes we are....
 
K

kayleesgrandma

New member
TO SURVIVE THE STRUGGLE
A man found a cocoon of an emperor moth. He took it home so that he could watch the moth come out of the cocoon. On the day a small opening appeared, he sat and watched the moth for several hours as the moth struggled to force the body through that little hole.

Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and it could go no farther. It just seemed to be stuck.
Then the man, in his kindness, decided to help the moth, so he took a pair of scissors and snipped off the remaining bit of the cocoon. The moth then emerged easily. But it had a swollen body and small, shriveled wings.

The man continued to watch the moth because he expected that, at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time. Neither happened! In fact, the little moth spent the rest of its life crawling around with a swollen body and shriveled wings. It never was able to fly.

What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the moth to get through the tiny opening was the way of forcing fluid from the body of the moth into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Freedom and flight would only come after the struggle. By depriving the moth of a struggle, he deprived the moth of health.

Sometimes struggles are exactly what we need in our life. If we were to go through our life without any obstacles, we would be crippled. We would not be as strong as what we could have been. Give every opportunity a chance, leave no room for regrets.

Peace to all who survive the struggle.

I stole this from my daughter's blog (kayleessmile). She won't know, she never comes to forum anyway. It is so hard as parents, to step back and let our kids be kids. But the only thing we can do is trust our judgement, and know that parenting is a learning process. It's easy to judge when you aren't wearing the same tight shoes we are....
 
S

Sakem

New member
mb101:

While I may at times have thought to myself that there were some overprotective parents on this site, It is not really my place to judge them. Probably because they are only doing what they think is best for their child, so how is that really harmful. To me being overprotective truly shows that someone wants the best for their child. It's very easy to be neglectful, but takes a lot of effort to overprotect. But there is no one right way of raising a child with CF, or even any child. A good parent should always be open to learning and getting opionions from others, which is probably why most of them are here on this board. But until you raise your own kids you can not say for sure how you will manage it. But an adult CFer your are a good person to give advice, but it can be done it the right way.

I find it interesting that you are so quick to tell people in this post that you have always been raised to take care of your own health, but at the age of 21 you are still living at home on SSI, and not sure about how to go about getting your own apartment. (all this was stated in your first post when you first joined the board). While I have no problem with you still living at home. It does make me wonder how you can judge people, but still at 21 rely on your parents, or whose parents never prepared them to know how to go out into the world on their own.
 
S

Sakem

New member
mb101:

While I may at times have thought to myself that there were some overprotective parents on this site, It is not really my place to judge them. Probably because they are only doing what they think is best for their child, so how is that really harmful. To me being overprotective truly shows that someone wants the best for their child. It's very easy to be neglectful, but takes a lot of effort to overprotect. But there is no one right way of raising a child with CF, or even any child. A good parent should always be open to learning and getting opionions from others, which is probably why most of them are here on this board. But until you raise your own kids you can not say for sure how you will manage it. But an adult CFer your are a good person to give advice, but it can be done it the right way.

I find it interesting that you are so quick to tell people in this post that you have always been raised to take care of your own health, but at the age of 21 you are still living at home on SSI, and not sure about how to go about getting your own apartment. (all this was stated in your first post when you first joined the board). While I have no problem with you still living at home. It does make me wonder how you can judge people, but still at 21 rely on your parents, or whose parents never prepared them to know how to go out into the world on their own.
 
S

Sakem

New member
mb101:

While I may at times have thought to myself that there were some overprotective parents on this site, It is not really my place to judge them. Probably because they are only doing what they think is best for their child, so how is that really harmful. To me being overprotective truly shows that someone wants the best for their child. It's very easy to be neglectful, but takes a lot of effort to overprotect. But there is no one right way of raising a child with CF, or even any child. A good parent should always be open to learning and getting opionions from others, which is probably why most of them are here on this board. But until you raise your own kids you can not say for sure how you will manage it. But an adult CFer your are a good person to give advice, but it can be done it the right way.

I find it interesting that you are so quick to tell people in this post that you have always been raised to take care of your own health, but at the age of 21 you are still living at home on SSI, and not sure about how to go about getting your own apartment. (all this was stated in your first post when you first joined the board). While I have no problem with you still living at home. It does make me wonder how you can judge people, but still at 21 rely on your parents, or whose parents never prepared them to know how to go out into the world on their own.
 
S

Sakem

New member
mb101:

While I may at times have thought to myself that there were some overprotective parents on this site, It is not really my place to judge them. Probably because they are only doing what they think is best for their child, so how is that really harmful. To me being overprotective truly shows that someone wants the best for their child. It's very easy to be neglectful, but takes a lot of effort to overprotect. But there is no one right way of raising a child with CF, or even any child. A good parent should always be open to learning and getting opionions from others, which is probably why most of them are here on this board. But until you raise your own kids you can not say for sure how you will manage it. But an adult CFer your are a good person to give advice, but it can be done it the right way.

I find it interesting that you are so quick to tell people in this post that you have always been raised to take care of your own health, but at the age of 21 you are still living at home on SSI, and not sure about how to go about getting your own apartment. (all this was stated in your first post when you first joined the board). While I have no problem with you still living at home. It does make me wonder how you can judge people, but still at 21 rely on your parents, or whose parents never prepared them to know how to go out into the world on their own.
 
S

Sakem

New member
mb101:

While I may at times have thought to myself that there were some overprotective parents on this site, It is not really my place to judge them. Probably because they are only doing what they think is best for their child, so how is that really harmful. To me being overprotective truly shows that someone wants the best for their child. It's very easy to be neglectful, but takes a lot of effort to overprotect. But there is no one right way of raising a child with CF, or even any child. A good parent should always be open to learning and getting opionions from others, which is probably why most of them are here on this board. But until you raise your own kids you can not say for sure how you will manage it. But an adult CFer your are a good person to give advice, but it can be done it the right way.

I find it interesting that you are so quick to tell people in this post that you have always been raised to take care of your own health, but at the age of 21 you are still living at home on SSI, and not sure about how to go about getting your own apartment. (all this was stated in your first post when you first joined the board). While I have no problem with you still living at home. It does make me wonder how you can judge people, but still at 21 rely on your parents, or whose parents never prepared them to know how to go out into the world on their own.
 
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