Am I overreacting?

hmw

New member
Here is my take.

First, I have to admit i wouldn't spend the day upset if I caught my child drinking out of someone else's cup or eating someone else's food etc. There are just bigger things to worry about in the big scheme of things. Important note- this is coming from a parent who did not know about cf until I my kids were 7,9 and 11. And it's one of the very, very few things I'm grateful for, to be honest, when it comes to my daughter's late dx. It would have made me stark raving mad to worry about every little germ and thing in the mouth and whatnot ...and so she had her toddlerhood and early childhood to do exactly what her brothers did, with no more concern over her in this area than I would for them. However- did I encourage her brothers to be unsanitary? No. Did I encourage hand washing and teach personal hygiene? Absolutely. But life happens, especially with little kids. Kids are going to be disgusting sometimes. You use those moments to teach them how you would like them to behave, cf or not (honestly, we want all our kids to be civilized, don't we?) but in the long run it's pointless to worry too much since we will only succeed in making both ourselves and them worry all the time. And in general we WANT life to happen. Emily dug in the dirt and played at the park and tromped through the woods after the boys and caught frogs and bugs and gardened and still does any of that stuff she wants to do, with them or with me. At the time of dx she cultured staph. That is it. And it hasn't been till the last 18mo that things have gotten worse and we suspect PA but haven't caught it on culture yet. I think Twistofchaos and Jonathon are right- these things grow when the conditions are right for them, the exposure is there via everyday life all the time no matter how we try to shield them. I think a lot of factors aside from mutation play a role (modifier genes and whatnot) play a role, but being overprotective is not one of them.

However, I also notice that some- not all, but some- of those with cf who berate parents in the harshest fashion for reacting in a protective manner are not parents themselves, and this being the case cannot possibly understand that the nature to protect is a MASSIVE RESPONSIBILITY, and one that extends far beyond things related to cf. They can be unnecessary hard on us parents without having any idea, really, what they are talking about if they haven't lived the responsibility of keeping a child- ANY CHILD- alive, healthy, and happy. It's a hard job and it takes time to navigate the steep learning curve of protecting vs letting go, taming their impulsiveness vs letting them fly. We all as parents need to hear about your perspective as adults with cf, since we will NEVER understand it personally, but please- if anyone reading this thread (I am not referencing anyone in particular, it's more a general statement) feels inclined to harshly judge a parent, and is not a parent themselves- try to realize there are factors here you simply cannot understand.
 

hmw

New member
Here is my take.

First, I have to admit i wouldn't spend the day upset if I caught my child drinking out of someone else's cup or eating someone else's food etc. There are just bigger things to worry about in the big scheme of things. Important note- this is coming from a parent who did not know about cf until I my kids were 7,9 and 11. And it's one of the very, very few things I'm grateful for, to be honest, when it comes to my daughter's late dx. It would have made me stark raving mad to worry about every little germ and thing in the mouth and whatnot ...and so she had her toddlerhood and early childhood to do exactly what her brothers did, with no more concern over her in this area than I would for them. However- did I encourage her brothers to be unsanitary? No. Did I encourage hand washing and teach personal hygiene? Absolutely. But life happens, especially with little kids. Kids are going to be disgusting sometimes. You use those moments to teach them how you would like them to behave, cf or not (honestly, we want all our kids to be civilized, don't we?) but in the long run it's pointless to worry too much since we will only succeed in making both ourselves and them worry all the time. And in general we WANT life to happen. Emily dug in the dirt and played at the park and tromped through the woods after the boys and caught frogs and bugs and gardened and still does any of that stuff she wants to do, with them or with me. At the time of dx she cultured staph. That is it. And it hasn't been till the last 18mo that things have gotten worse and we suspect PA but haven't caught it on culture yet. I think Twistofchaos and Jonathon are right- these things grow when the conditions are right for them, the exposure is there via everyday life all the time no matter how we try to shield them. I think a lot of factors aside from mutation play a role (modifier genes and whatnot) play a role, but being overprotective is not one of them.

However, I also notice that some- not all, but some- of those with cf who berate parents in the harshest fashion for reacting in a protective manner are not parents themselves, and this being the case cannot possibly understand that the nature to protect is a MASSIVE RESPONSIBILITY, and one that extends far beyond things related to cf. They can be unnecessary hard on us parents without having any idea, really, what they are talking about if they haven't lived the responsibility of keeping a child- ANY CHILD- alive, healthy, and happy. It's a hard job and it takes time to navigate the steep learning curve of protecting vs letting go, taming their impulsiveness vs letting them fly. We all as parents need to hear about your perspective as adults with cf, since we will NEVER understand it personally, but please- if anyone reading this thread (I am not referencing anyone in particular, it's more a general statement) feels inclined to harshly judge a parent, and is not a parent themselves- try to realize there are factors here you simply cannot understand.
 

kitomd21

New member
I share the same concern. Regardless of CF status, my child will never learn it's okay to drink from others. If we were all bound to get the same germs/viruses from others anyway - then why don't I get always sick from my co-workers, family, friends, etc.? When everyone else is sick and I'm not - either I've already become immune to that virus, or I have better hygiene. Not that difficult of a correlation to make. We must be more careful with our CF children and exercise caution when and where we can. Simple fact. Nobody can tell me otherwise. Each sickness may or may not lead to an exacerbation. Why do CF centers practice a 3 foot rule? This is not only a guideline among clinic days, but also a guideline when you're around others who are sick and don't have CF.

I understand that we cannot protect our children from acquiring viruses/bugs all the time - especially in a day care or school situation - HOWEVER, teaching them not to drink after others is pretty basic. I don't even do it with my own "non-sick" family members. Yuck.

Yes, let your children lead normal lives - teach them proper hand-washing and hygiene just as you would practice yourself. I'm not talking about restricting them from being outdoors or other events...but teach them basic ways to avoid getting sick. Will they get sick? Yes. Would they acquire more colds, flu, etc. if you aren't conscientious? Yes.
 

kitomd21

New member
I share the same concern. Regardless of CF status, my child will never learn it's okay to drink from others. If we were all bound to get the same germs/viruses from others anyway - then why don't I get always sick from my co-workers, family, friends, etc.? When everyone else is sick and I'm not - either I've already become immune to that virus, or I have better hygiene. Not that difficult of a correlation to make. We must be more careful with our CF children and exercise caution when and where we can. Simple fact. Nobody can tell me otherwise. Each sickness may or may not lead to an exacerbation. Why do CF centers practice a 3 foot rule? This is not only a guideline among clinic days, but also a guideline when you're around others who are sick and don't have CF.

I understand that we cannot protect our children from acquiring viruses/bugs all the time - especially in a day care or school situation - HOWEVER, teaching them not to drink after others is pretty basic. I don't even do it with my own "non-sick" family members. Yuck.

Yes, let your children lead normal lives - teach them proper hand-washing and hygiene just as you would practice yourself. I'm not talking about restricting them from being outdoors or other events...but teach them basic ways to avoid getting sick. Will they get sick? Yes. Would they acquire more colds, flu, etc. if you aren't conscientious? Yes.
 

imported_Momto2

New member
hmw and kitomd21, I hear what your saying about that protective urge. Our two are competitive gymnasts...I watch the older do flips on a beam where one bad move means something is going to break and it aint gonna be the beam. Its scary as all *****, and frankly makes me a little bit nauseous to watch most days. It just kills me when one of them falls off their bike, etc. The converse side is that I spent a large fraction of my childhood in hospitals. I saw a LOT of sick kids, lived with them, saw them again year to year, knew their parents. I came to the conclusion that very little good comes out of overprotecting your kids. Taking usual precautions, yes, absolutely. Teaching good habits and safety are a must. Freaking out over a single misstep however, is not going to be that helpful in the overall scheme of life. Its very easy for chronically ill children to get into the habits of making excuses why they cant or shoudlnt do things (I am not saying that anyone here does that, just as an observation I made years ago) and they seem to often learn that as kids from their parents.
 

imported_Momto2

New member
hmw and kitomd21, I hear what your saying about that protective urge. Our two are competitive gymnasts...I watch the older do flips on a beam where one bad move means something is going to break and it aint gonna be the beam. Its scary as all *****, and frankly makes me a little bit nauseous to watch most days. It just kills me when one of them falls off their bike, etc. The converse side is that I spent a large fraction of my childhood in hospitals. I saw a LOT of sick kids, lived with them, saw them again year to year, knew their parents. I came to the conclusion that very little good comes out of overprotecting your kids. Taking usual precautions, yes, absolutely. Teaching good habits and safety are a must. Freaking out over a single misstep however, is not going to be that helpful in the overall scheme of life. Its very easy for chronically ill children to get into the habits of making excuses why they cant or shoudlnt do things (I am not saying that anyone here does that, just as an observation I made years ago) and they seem to often learn that as kids from their parents.
 

hmw

New member
I completely agree, Momto2. (and my son was a gymnast for quite a long time.... boy do I understand that one!!)
 

hmw

New member
I completely agree, Momto2. (and my son was a gymnast for quite a long time.... boy do I understand that one!!)
 

Ratatosk

Administrator
Staff member
Okay, here's my newest germ horror story...

Yesterday I was unloading my 8 year old's backpack from school --- homework, library books, valentines and in the front pocket a plastic eyeball toy he found and a nerd flavored lip gloss. See where I'm going here yet...?

So I ask DS if he also found the lip gloss. Yes, Mommy it's nerd flavored. I see that, how 'bout I buy you a new one because you know you shouldn't use it because it could have germs. The person who had it could be sick.

Mommy, if they were sick, the wouldn't have been in school. Ugh! So not much we can do about this after the fact. Horrifying!!! But in a kinda sad funny sort of way.
 

Ratatosk

Administrator
Staff member
Okay, here's my newest germ horror story...

Yesterday I was unloading my 8 year old's backpack from school --- homework, library books, valentines and in the front pocket a plastic eyeball toy he found and a nerd flavored lip gloss. See where I'm going here yet...?

So I ask DS if he also found the lip gloss. Yes, Mommy it's nerd flavored. I see that, how 'bout I buy you a new one because you know you shouldn't use it because it could have germs. The person who had it could be sick.

Mommy, if they were sick, the wouldn't have been in school. Ugh! So not much we can do about this after the fact. Horrifying!!! But in a kinda sad funny sort of way.
 

imported_Momto2

New member
Yup, kids will insist on being true to their nature...which is being kids.

My favorite one with my eldest daughter was when she was about 18 months she snatched a flying moth (on the wing! can you say "reflexes?!?!?!) out of the air, jammed it in her mouth and swallowed before I could even blink. I rushed over and pried her mouth open, but that sucker was gonzo. Wow. As a relatively new mom (she was adopted at 1 year) I was in shock and awe....... now with number 2, I just shrug and snicker.....
 

imported_Momto2

New member
Yup, kids will insist on being true to their nature...which is being kids.

My favorite one with my eldest daughter was when she was about 18 months she snatched a flying moth (on the wing! can you say "reflexes?!?!?!) out of the air, jammed it in her mouth and swallowed before I could even blink. I rushed over and pried her mouth open, but that sucker was gonzo. Wow. As a relatively new mom (she was adopted at 1 year) I was in shock and awe....... now with number 2, I just shrug and snicker.....
 
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