Article on a CF Family

[Ratatosk]

This is an article on a newly diagnosed child in our area. It's just interesting to see other viewpoints and information on treatments -- that they can't send their kid to daycare. ??? I guess what really bothers me is when parents complain about how expensive food or medication is -- what's your option? Don't get prescriptions filled? Don't put your child on pregistimil?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.times-online.com/articles/2006/04/28/news/01keaton.txt">http://www.times-online.com/ar...4/28/news/01keaton.txt</a>

 

[anonymous]

What's a "proclamation for cystic fibrosis"? Glad the government is finally addressing health care.

 

[anonymous]

Every year the US Senate does something like this -- declares May CF awareness month and we've contacted our Governor and had him sign a proclamation last year and this year. Just a piece of paper, but helps with awareness.

 

[anonymous]

Wow, only 12 weeks old and has been in and out of the hospital with troubles...I would be keeping him home for awhile too (especially since he was born during cold/flu season). Luckily for them, the parents can work different shifts.

Always hate to hear of a new CF patient but glad to hear they are raising $$ for the CFF.

Thanks for sharing the article!

 

[Scarlett81]

I think they weren't complaining about the meds or stress of the disease-they were educating people.

Something similar happened to me a year ago-A minister in our church wanted to share some personal stories about people in the community dealing with large obstacles and problems-and how they cope and keep going. So he chose one family who was living with their ill and aged parents, a mom whos son had died, and he asked me if I'd be interviewed too. And I adamently said -no way. I'm not gonna get up in front of the congregation and have a self pity party and talk about my problems.
Then he said think about how many people you'll educate about Cf, think how you'll encourage everyone-how you might inspire others to keep going. He told me I had to view it as not complaining-but educating people. So I did it-and I actually changed my life, and how I view my disease.

It can be really intimidating to those interviews-look at what Amy just did-wow-talk about intimidating. But it's gotta be done so people can learn the facts about living with this. Thanks for sharing the story!!!

 

[anonymous]

Well, I read the article looking for what made you cranky.

I think the reporter may have just asked questions about food costs and daycare.

I didnt see it as they were complaining, did you?

I actually thought it was awesome that they took their childs illness seriously and decided to sacrifice their own comforts so that their child didnt have to go in daycare.

I have a friend on this board that does the same thing. Her husband and her work different shifts so that their child doenst have to go to daycare.

Troys Mom worked 3rd shift for the same reason.

Just curious your viewpoint on the article, I am not a parent so I dont ever pretend to understand your interpretation.

Did you take it that there is no choice in the matter, you do what you have to and its just the right thing to do? Like these are just obvious decisions that the reporter is glorifying? Just curious. I always wonder how parents feel on these issues.

Thanks for bringing to our attention ~

 

[Ratatosk]

I think what made me cranky is I can hear the local pulmonologist talking word for word -- put the child in a bubble -- no dust, no pets, no school, sports... At least I'm relieved to hear they're doing cpt -- when we started attending the clinic they were shocked that we were already doing cpt and nebs on a 3-month old. We also got reprimanded for using albuterol and atrovent? And I'm wondering why they're spending that kind of money on pregistamil. When DS was first diagnosed, he was started on it and the social worker at the hospital in the City found us the cheapest resource for it.

 

[ClashPunk82]

I had no idea May was Cf month, lol. And if I have CF and don't even know then I am pretty sure that most other people don't know it either. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Thanks for showing the article. i think every family deals with CF in their own way and this changes as they get used to dealing with the disease. My daughter had 2 major abdominal surgeries before she was 6 months old. I'm certain i was overprotective the first year, took me a while to loosen up a bit. One pulmonologist told us to get rid of our cats, before my daughter was born, we did not. Animals are important to us. When the cats die, we'll probobly get some sort of dog. I think they were trying to educate people about CF. I think the general population doesn't understand chronic illness and the effect is has on a whole family.

Rebecca

 

[anonymous]

Probably was the way the reporter wrote the article, too! The tugging at the heart strings, small town news. We did an interview for the local paper, too and we were concerned that it not just be about us or ds, that it not be one of those poor sickly child stories -- that they talk about the 55+ people in our state who have cf, they talk about symptoms, carriers, cf awareness type issues.

 

[thelizardqueen]

The only reason I know that May is CF awareness month, is because our local walk is May 27th I believe. If not for the walk, I don't think I'd know. That's kind of sad.

 

[JennifersHope]

I thought that the article was awesome. I didn't see it as them complaining at all. I think people should know how much CF meds and special formulas cost. I recently did a talk in my class about the finacial strain on a family that has a child with CF. My classmates were in shock, Real shock.

I also think at that age a child should not be allowed in daycare. IMO 12 weeks is to young. ( I used to be a daycare director and I think daycare can be a good place)

I am sure this is the same for all people with allergies, not specifically CF, but when we got hard wood floors put in and the carpets ripped up, my breathing improved a great deal. Really it did. I think it is good to avoid molds, dust and pollen and if they can do it or if they chose to stay home with their kid, they shouldn't be judged anymore then you who choses to put your kid in daycare. I would feel really bad if and when the parents find this website and see us talking about them...

I am not trying to discredit you or your feelings at all, to me you seem the most cranky at the care your son gets which I can't say that I blame you, you local center seems like knuckleheads.

Jennifer

 

[anonymous]

People should know more about CF. No doubt about that. And respect those who live with it. And maybe even help in some respectful way (what a concept ;-)

But maybe I'm a bit grumpy today too, but the tone of this story (any fundraising story) is sort of offputting to me as well. I hate when the stories seem to be asking for pity or the story tellers sort of being made to seem pathetic.

But in my old age I think I'm getting a bit like my favorite author, Harriet McBryde Johnson, who pickets against the Jerry Lewis telethon each year .

"We don't want pity," she quotes a fellow protester against the Lewis bathos as saying, "Pity gets in our way when we are looking for jobs and a place in the community."

Book by Harriet McBryde Johnson "Too Late to Die Young : Nearly True Tales from a Life " reviews at <a target=_blank class=ftalternatingbarlinklarge href="http://www.amazon.com/gp/product/0312425716/104-6737304-7892768?v=glance&n=283155">http://www.amazon.com/gp/produ...2768?v=glance&n=283155</a> .

 

[anonymous]

that last one was me (LisaV)
at work and not signed on

 

[Scarlett81]

I think the parents seem pathetic b/c it is pathetic- sym-pathetic. It sucks to have cf, and to be a parent of a cfer-especially when its new to you and its your new teeny helplesss baby.

And I have to agree with someone who said a few posts ago-in my opinion-a 12 week old baby period should not be in day care. At 12 weeks?! Especially a sick baby with special needs. Gosh-when you have kids, you desperately will do anything to help them, protect them and keep them alive.

I look at myself-all the fun parties I've missed b/c I didn't want to catch the cold the hostess had, the bars I wouldn't go to to avoid the smoke........so we do it too.

 

[LisaV]

Yup, I agree that a sick 12-week old baby does not a good day care candidate make.

About the sympathetic thing. Yup that's what the foundation's go for when they are raising money - cute, helpless little things - brings in the pity money.

I suppose if we just want the money that's fine.
If we want to empower those kids as adults, I think it has bad consequences.
Those ads are one reason that everyone goes (suck in breath) "oh you have CF" (when you tell them that when you an adult ) and then looks at you like your the living dead and will croak any moment. Makes it a whole lot harder to get a job, and be treated like an equal powerful person.

Not at all sure the money as donation trade off is worth loosing that much power as an adult.

Now if the pity for babies would guarantee free excellent health insurance for life?
Well, then maybe that would be worth it....

But that's just me

 

[JennifersHope]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>

I suppose if we just want the money that's fine.

If we want to empower those kids as adults, I think it has bad consequences.

Those ads are one reason that everyone goes (suck in breath) "oh you have CF" (when you tell them that when you an adult ) and then looks at you like your the living dead and will croak any moment. Makes it a whole lot harder to get a job, and be treated like an equal powerful person.



Not at all sure the money as donation trade off is worth loosing that much power as an adult.


I couldn't agree more... I can't stand being treated or looked at differently.. I think it is so important to be empowered as an adult. I work so hard to prove to non cf adults that I am on the same playing field as them professionally.

Jennifer

 

[anonymous]

thought you might get it, jen (you overachiever, you

the other thing those ads do when seen by young CFers is to contribute to those kids thinking they won't grow up to be adults. They stress the word "terminal" so much that it is hard to hear anything else (that brings in the money too.)

As CF becomes less and less a disease that kills children and more and more a disease that adults live with, IMHO the CF community is going to have to think about these tradeoffs.

If I had a kid with CR, I would give up a trip to Disneyworld, to have a fiesty 25-year old who thought/acted like he/she had the world by the balls. (Not that those are mutually exclusive, just hard to go from role of "pitiful child" to "powerful adult".)

 

[anonymous]

whoops that last one was me (lisav)
not signed in yet once again....

 

[Ratatosk]

When DS was first diagnosed and we participated in the first GS walk in our state in a long time, the local paper was after us to do an article and we just didn't feel comfortable about it -- about having it be all about him -- the poor little sick boy and his parents. We didn't want him treated differently. But that's what sells papers. We suggested an interview with someone who had a lung transplant a few years ago, someone who was awaiting a transplant, but they wanted the new kid.

My husband and I did do an interview this year for great strides, but we focused on the walk, awareness, that our state is now doing newborn screening and 4 children had been diagnosed since January. We talked about life expectancy, research, medications, where the money goes that people raise for the CFF.

Like I said, maybe I was having a cranky day. I usually google CF every week or so and there are some excellent articles about families with cf -- the ones that annoy me are the when you hear that little timmy can't play outside on his swingset if there's dew or can't have a dog. Or one that comes to mind a few years ago was a woman who broke her arm and failed to do cpt on her kid for several months -- hello?!!!