quick question

[NoDayButToday]

OK a few things I feel I have to say
1) Emily and I are patients, and have had CF as a part of our lives for 20 and 15 years, respectively. You are parents, of what seem to be fairly young children with CF. When we give advice, it's from experience of living day to day life with CF- which can be different than what doctors say. I don't think either of us (and correct me if I put words in your mouth, Emily) ever doubted anyone's parenting skills- I've seen firsthand how hard it can be to be a CF parent.
2) I will reiterate what Emily said earlier- pseudomonas is everywhere. I've cultured pseudomonas for about 10 years (culturing it at 4 years old after following doctor's protocols for delaying the culture- so much for that- and it just goes to show you), and am doing relatively well. Obviously following reasonable precautions (avoiding water fountains, carefulness in public restrooms and at CF centers etc.) is a good idea, but sheltering your child from a full life will do NOTHING to help them in the long run. I think Tyler has the right idea.
3) I don't think Emily has anger issues at all. I think she writes bluntly at times, but she doesn't do it to be mean or in an angry way. It was a bit out of line to say she has "major anger issues", if you ask me, and I think saying that was a "personally offensive" thing to say.

Emily, correct me if anything said doesn't apply to you- I don't want to put words in your mouth. And to the parents on this thread- we never doubted your parenting skills at all. I'm sure you are great parents- I mean, you're on this thread because you care deeply about your children and what's best for them <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I just wanted to say that I think it can really hurt parents when it is suggested that they are paranoid or overprotective.
Yes, we don't have CF ourselves but we do suffer as well.
Maybe our way of coping is to do everything that we feel we can to try and keep them healthy and sometimes it might involve not putting them in a situation where say there may be a higher risk of pseudomonas or something else.
I am not going to apologize for that.
My son cultured pseudomonas at 11 months old and that is far from ideal, and it has been clear for 5 months now.
I don't want him to culture them again for as long as I can help it.
If it means that he doesn't swim in a indoor pool while he is younger so be it, he can swim outside at the beach in summer or a outdoor salt pool.
He does many other things that all the other kids his age without CF do and he is a very happy child.
When he is old enough to make decisions for himself I won't stop him but in the meantime I will take these measures.
I don't mean to offend the others with CF but it has bothered me some of the responses to questions that parents might ask, we are just doing what we think is right for our children.
Rebekah
Mother to Matt 16mths w/CF

 

[anonymous]

I am shocked at the replies on this message. I am the parent of a CF child who is doing well. I have never found Emily to be offensive. I like to read postings from CF patients as well as parents. Hearing what the patients think gives me some insight into what my child may feel in years to come. I will never know what it is like to have CF so reading the postings has taught me a lot. In the same respect I think patients can get some insight into what their parents go through.
Let's face it.........as parents we are paranoid about our kids getting sick. I wish I wasn't that kind of parent but it is a fact of life in dealing with the disease. No, Emily is not a parent but that doesn't mean we can't learn from her experiences, after all she does have a different perspective on the disease. I let my daughter do more than I thought I would because I hear from the patients that they just want to live normal lives.
When you read things on this forum you need to walk away with the information that applies to your situation. If you don't like what is said (and others have said much worse) then disregard it and move on.

Heather

 

[anonymous]

This is just my personal opinion but I can see why Carey would be a little upset. Not because Emily expressed her opinion and stressed how important it is to not smother our children, but because she singled her out in a response. Personally, I didn't read anything in Carey's post that would make me think she is a "paranoid" mother who would pull her child from swimming just because of pseudomonas. Instead, I saw a mother who wanted to make an <i>informed choice</i>, that's all. I also don't think Emily really meant to offend anyone, she just feels very passionately about letting cfers lead as normal lives as possible. And, as Coll said, she is a bit blunt. I agree with Heather, we need to try NOT to take things personally. Instead, take the advice that applies to your situation, discard the "bad" advice and make the best choice you can, based on <b>all </b>the information you have. That's really the best any of us can do. I do think though that we should try really hard not to single each other out since it is harder not to take it personally when it <i>is</i> personal. Just my opinion.

 

[anonymous]

I'm just a lurker. Two of my children were tested for cf. Several drs really thought my ds had cf but his sweat tests were neg and his genetic testing didn't reveal any genes. We didn't do ambry so there''s a slight chance he could really have it although not really likely. At this time, he doesn't have an official diagnosis other than reflux, chronic sinusitis, allergies, and asthma. He does seea pulmo w/a cf center. And, I can't relate to PT since I've only had to do that when their lungs were really bad. Likewise, I can't relate to the worst part - not knowing what the future holds in terms of prognosis but I can relate to countless breathing treatments, multiple meds, constant antibiotic usage, stomach aches, lack of weight gain, "failure to thrive", frequent illness, etc, etc. Anyway, as a parent of a non-cf child I just wanted to say that it's all well and good to tell someone to treat their child like "any" normal child and to not "worry" and not "smother" but it's so much harder to <b>actually do that</b> as a parent. My children don't have cf but I still worry about them (and I am not at all trying to compare my worry to that of parents of cfers just trying to make a statement to the cfers who say not to smother your child, treat them like any other child, etc, etc, etc.) Being a parent is so much more difficult (and wonderful) than you can possibly imagine before you have children. When you love your child so much, it is very hard not to want to protect them. That desire to protect them is all the more strong when you find out they have a chronic illness and you have to live with it day in and day out. Personally, I think most of the parents on this site do try to do what's best for their children and that includes providing them as normal of a life as possible. I guess what I'm trying to say is that it's so easy to tell someone what they <b>should do</b> when you haven't <b>walked in their shoes.</b>

 

[allie1]

What happened to my innocent gymnastics question???? Who knew it would have led to all this <img src="i/expressions/face-icon-small-smile.gif" border="0">

Amy

 

[EmilysMom]

okay...I have been reading the posts fairly quietly and have said nothing, but I am going to jump in now with my two cents. Emily is very blunt...she always has been and probably always will be. But you have to remember that she is almost 21 and we have been dealing with CF for 21 years. She has the advantage (or disadvantage) of having lived with all the problems that her dad and I have lived (as CF parents) with over the years. We have never hidden anything from her. She has heard all the stories from when she was little and they irk her so over the years, she has grown to be an advocate for "let the kids lead a normal life".
When she was 5, I took her to the movies to see a new Disney cartoon that had come out. We were asked to leave the theatre because her coughing was "disruptive" to the other theatre patrons. When we went back-to-school shopping one year, a perfect stranger told me I was a bad mother for taking a sick child out in the bad weather (she was having a bad coughing spell). There are many stories like this that she grew up with. Consider how you would feel as a parent and as a Cf child, teen and now a young adult when society treats you this way and tell me you might not be a little angry. Now she works to be an advocate for CF kids in her own way for them to grow up "as normal" as possible. She doesn't think anyone is a bad parent; obviously take the normal parental considerations and protect your children....she just doesn't want them to live quantity of life without quality!
I'm done ranting! <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

Barbara and parents,

I can see your point. It seems like you are a great parent and a wonderful advocate for Emily. She's lucky to have you as her mother. My upset that day was because my question was simple and I made no personal attacks to Emily, but recieved one in return. I don't care if she is "blunt", her response was extremely rude. I'm not sure what I have done to offend your daughter, but everything I say is attacked and I'm tired of it. I come here to get support and advice from other people in the same boat. While I greatly appreciate other CF patients' responses to my questions, I do not appreciate people that are inconsiderate and rude. I'm sure she had a difficult time growing up, as most CF kids probably do at many points in their life. My main goal is to try and become the best support for my son. I do this by educating myself and asking other people, like you, how they deal with various issues. I am always impressed when those with CF give me their opinions - they are so valuable because I'm able to see things a little clearer (or at least from the patients' point of view). It's not WHAT Emily has said to me, it's how she SAYS it that I'm not impressed with. I GREATLY appreciate those parents and CF patients who CONSIDERATELY give me their opinions and advice, regardless of the fact that you may or may not agree with me. We can all disagree with kindness and consideration. It's not hard.

Carey

 

[AbsintheSorrow]

I never meant to be rude. Trust me, it wasn't the intention. I just have to make sure I'm heard when talking about letting CF kids grow up 'normal." And the thing I have to wonder is... you weren't irked by what I said, but how I said it... let me ask, how can you tell how I said it online? It may have sounded rude to you, but it wasn't coming out of my mouth, or fingertips rude. The internet is a terrible place to try and judge reactions and emotions. Everyone who spoke for me was pretty much right. I'm terribly blunt and sometimes don't think thoroughly before I "speak" (type) and it comes out rude when not intended. I never thought I was attacking you, Carey. And I do apologize that it came off that way.

Please don't refer to my having children someday and learning again.... because it upsets me being that I can't naturally have my own kids and I don't know yet whether or not we'll find a way. (Hysterectomy age 18). And you're right, I'm no parent, but living with CF for almost 21 years, (and again, not meaning to be offensive), I'm sure I know more about living with CF than you do. That's all I meant. That's the only reason I butt in. That and because, as my mother said I have heard too many stories of children being smothered and I hate it so I'm extra-passionate about it.

 

[anonymous]

Well said, Carey. Well said.

Tyler

 

[anonymous]

"you weren't irked by what I said, but how I said it... let me ask, how can you tell how I said it online?"

Emily,

I appreciate your post and hope that in the future we can correspond a little more clearly. I'll try and be more understanding of your point of view. When you said, "Carey has come off to me as the type that would avoid swimming lessons altogether because of the chance of culturing pseudomonas. Granted, I don't know her from Joe Shmo down the street, but that's the feeling I get from her." I can't audibly "hear" you, but your choice of words is clearly not nice. Making assumptions about someone's parenting skills (the job I consider most important in this world) is never appreciated, especially if you've never even met the person. While I appreciate your input, I would appreciate it more if you'd just try to be a little bit nicer. I'll try my best too, ok? <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[AbsintheSorrow]

Though it may seem like I was questioning your parenting skills, it's not what I was purposely doing. Even being smothered (not saying you do this, just making one of my many points) must be better than not being loved at all. And I can tell from your posts that you love your child(ren?). I was more questioning your experience with CFers. And even that wasn't meant to be questioning so much as making my point. I can be very pushy with my "point making.' I've known many CFers, and (this is generally speaking, of course), either we tend to be quiet and shy, or outgoing and bossy. I'm outgoing and bossy. Heh.

I don't doubt you know a lot more about being a mother than I do being that I'm no one's mother. And if I ever get to be so lucky, it won't be for quite a few years.

Either way, I'm glad this has been resolved, and from now on if I respond to any questions you put forth, I'll try to be more careful in my word choices and phrasing. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Hey Emily,

Thanks a lot for your willingness to try and understand. While we have had our differences, your point of view has made me try to stand in my son's shoes a little more. I always appreciate input and hope we can continue to correspond because I always need to hear different sides of the story! I can see my son as the "outgoing and bossy" type too. And, if I had to choose, I would hope he would be more like this vs. quiet and shy. I think it can help him become a fighter! If it's what you want, I hope you get the opportunity to be a mother someday too - - but, you're already doing a lot of good by helping others know more about the disease and helping them see that you are living life to its fullest. Thank you!

Carey

 

[AbsintheSorrow]

CF kids are a lot better off if they're bossy and outgoing, because you can learn to control the bossy as you get older. Heheee. I'd love to be am other someday and hopefully will get there, but I'm glad in the meantime I can be of help at all. Hey, I don't know if you've said this before or not, but what is your son's name??