Who should I tell or not tell

M

Mommafirst

Guest
Hi!  I've been lurking around here about a month.  I'm
new to the CF world.  My 6 month old daughter was
recently diagnosed with "genetic" CF, but right now
is being considered asymptomatic.  Other than MI at birth, she
is doing well.  She did culture staph at our diagnosis clinic
appt, so they may not think she's asymptomatic anymore.
 Anyway, before my daughter was born we moved to a new town.
 I'd like to join a moms group with playgroups for my kids,
but I'm not sure whether I should discuss the CF in a brand new
situation.  I'm concerned mostly about my daughter getting a
label that will follow her at least through high school.  We
live in a small town and these moms will likely be the PTA moms of
the future.<br>
<br>
If I keep it to ourselves they'll likely think I'm a lunatic with
the purell and cleaning, but  I'd rather be the one with the
weirdo tag.<br>
<br>
Any thoughts from those who have been there on who I should and
shouldn't tell?<br>
<br>
thanks,<br>
Heather<br>
<br>
mom to Alyssa --6mos w/cf  and Richie (5) & Reese (2.5)
both being tested
 
R

Ratatosk

Administrator
Staff member
We too were/are concerned that DS might be treated differently and want him to lead a normal life. It's not as if we're embarrased, but some people just react strangely. Act as if we're faking it because "he doesn't look sick" or give us that look of pity and say they're sorry when they find out.

He does got to a preschool/daycare and as far as CF, enzymes are the only thing we send with him. Otherwise all meds and treatments are done at home. Friend of mine's daughter goes to her daughter's daycare to give her CPT and we just feel it'd be very disruptive and would draw attention to him.

Basically his teachers and the director of the center know he has cf so they can give him his enzymes, make sure he gets plenty to drink when it's warmer and give him some extra salt. Otherwise he's a normal little boy.
 
H

Hughett

New member
Do the teachers tell you if there is a sick child or a bug running
around the school?  I was wondering about the same thing when
our little one gets older.  I just worry about sickness.
 Have you had good teachers that keep you informed?
 
L

LisaV

New member
iI'd suggest being pretty open. Since she'll have to take her enzymes in front of everyone it's not really like you can keep it a secret. Her friends at playgroup and their parents won't think she's weird if you don't think so. They'll pick up on your take on all of this. If you act like it's some awful secret, they'll act the same way and whisper in the background which I think is more damaging than being open about it. (CF will be the elephant in the room)

Yes, it's true if you're open that some folks in town who hear about her illness but don't know her might think of her as "the girl with CF" but her friends will know her as herself. And by being open you have a better chance of counteracting any misinformation.

I think of my friend's daughter with diabetes. Never a secret. Shots in front of kids (now she does it herself unselfconsciously). Included in everything. Then I think of my nieces where even family members aren't supposed to say CF outloud (even now when one is being evaled for transplant). Two extremes I know, but still....

Open and matter of fact, undismayed- not "horrible" family secret - I think leads to more normal interactions - especially in a small town (like the one I grew up in) where there really aren't any secrets - just some things that are talked about in whispers behind your back rather than right out loud in front of you.

[edited to add some of the missing "g"s]
 
M

Mommafirst

Guest
Thank you, Lisa, I do believe in the open and honest approach.
 And I do want my daughter to grow up with CF as just one part
of who she is.  I have shared with all my current friends and
family, as I've really needed the support lately.  I'm very
comfortable discussing CF with anyone, and don't mind questions
that may come from an uninformed place  -- because it gives me
a chance to set them straight.  I guess my main concern is how
my daughter is going to feel when she is like 14 and meets a boy in
highschool, maybe one she doesn't want to know about her CF yet,
and because its something I've shared with other moms,  his
mom will tell him before my daughter can.  <br>
<br>
I didn't think about the enzymes, because you are right -- if she
has to take those it would  be better for everyone to
know.  But right now my daughter is pancreatic sufficient, so
I didn't even think about the enzymes being an issue.  But
since there are no guarantees with pancreatic sufficiency, that
certainly could be an issue.  <br>
<br>
It honestly seems impossible right now to have a discussion where
CF doesn't come up -- but I just don't want to take away some of
her rights of control for when she is old enough to care.
 
B

blackchameleon

New member
wow Heather u r newer in here than i am!, anyway how do u think u
respond to a new mother of your playgroup joining and explaining
openly and honestly, without self pitty, that their little one has
a disease called "wotever" ? always better in the open
wiyhout being  harped on!! my thoughts any way. BC  35 m
with C effing F ..<br>
 
T

tammykrumrey

Guest
Heather,
I have two daughters with CF (as well as a nephew). Our family has never kept it a secret regarding the childrens CF. And I have never felt that any of the three kids are pitied. They are treated just like any of the other kids. I love to educate others about CF, so I welcome all questions about the disease. I am very active in raising funds for the CFF, so it would be kind of hard for my girls to hide the disease I'm afraid. They are still pretty young, but never feel any different than any of the other kids. And I have found this one thing funny---even when the girls were about 5 years old, and we would be attending a birthday party or something, these little 5 year old friends would say things like "Mrs. K.-did you give Kayla (or Hannah) their enzymes" when they would be eating cake. And their friends still to this day say things like that when they are at our house.
I think that it's good for the adults who are around my children know, so that way they may think twice about bringing their sick child around my girls. And they will also know that just because they may be having a coughing fit when jumping on the trampoline- that they are ok, that they just may need a break from it.
After rambling on-I'm not sure that I helped you.
I guess you have to go with what you are comfortable with. There is really not a clear cut answer.
 
R

Ratatosk

Administrator
Staff member
At the preschool they let us know if someone comes down with something. They are fairly strict about ANY child coming there sick and they'll post a note if someone comes down with chicken pox, stomach bug, head lice. They're great about disinfecting, hand washing, keeping the germy toddlers away from the babies.

He gets his enzymes at school, at family events we give him his CPT & nebs or give him his other meds in front of everyone. Actually during CPT, it's party central 'cuz we've got a portable DVD player and it's the gathering place for all the cool kids. If people ask about CF, we tell them all about it. We're not embarrassed or ashamed of DS, it's more that we're concerned with the looks of pity. My best friend in Jr. High/High School had lupus and I was horrified when people would say to me that I shouldn't get too attached 'cuz "she's not supposed to make it thru high school" She lived to be 35 and was my maid of honor at my wedding.
 
L

LisaV

New member
I appreciate your wanting to let your daughter be the one to decide who to tell when she's 14.

But there are years to go before she's 14 and the decisions you make now - and how you deal now- will have a lot to do with how comfortable she is with being who she is at 14 (CF and all) and how comfortable she is with friends knowing then.

Truth be told, parents with kids with CF or diabetes are not raising "normal" kids--if by normal you mean a kid without a chronic illness or invisible disability (even tho' in the younger years that invisibile disability might be very very slight). Instead they are raising kids with disabilities who will grow up to be adults with disabilities. And tho' it's true that disability is still a stigma in the US (and I suppose other countries), those with disabilities are more able to deal (and feel less stigma) when they are open and empowered. Being raised that one needs to "pass as well" or "stay in the closet" to gain acceptance does not empower someone with a disability.

If you never ask her to pass as well - never put her in the closet yourself - then she'll never be in the closet and won't have to worry about how to come out of it and how to tell her friends when she's 14 - or 18 - or 38 - or ....... She'll just be her powerful complete open self.

P.S. For those of you that feel pity oozing your way, you could buy the whole family the "No Pity" t-shirts ;-)
 
T

tammykrumrey

Guest
LisaV,
What great points you made! I never thought of it the way you spelled it out, although for me it really never was an issue as to or not to tell someone. But those are just great points! Thank you for your wisdom<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

sue35

New member
I also agree that the best thing would to be open with everyone now and then it will never be a problem. If she is never given a reason to want to keep it a secret then she won't. Also, if everyone grows up knowing then why would a boy care when she is 14? He would just know she had this but not think twice about it because he has always known.

I was the opposite and did not tell anyone. Because it is nearly impossible to hide completely all the kids knew something was up. Well, before you know it there was a rumor that I had AIDS, because that is the only disease that 14 year olds really know of. Ruined that year of my life. So don't even give this happening the option.
 
I

izemmom

New member
We moved to a new neighborhood about a month ago. Before we moved, I thought long and hard about whether to tell everyone about Em's cf up front or just lay low. As it turned out, our next door neighboors had (by coinidence) joined our Great Strides team with mutual firends. (We didn't know they would be our neighbors until we moved in...small world!!!). Anyway, that let the cat out of the bag, so to speak, and I"m so glad. OUr neigbbors have been so helpful and thoughful about it. They are reading and learning about cf on line, planning to form a subdividsion team for next year's walk, reminding neighbor kids who want to play with Emily to wash and sanitize first, even asking us to teach them to do pt, etc...so that they can babysit. I did wonder if Emily would later resent everyone knowing about her cf later in life. But, I'd rather the neighborhood kids know that Emily's just going home for a treatment, and not have them thinking that she is in trouble, or snooty, or anti-social when she has to leave the park before everyone else. I, like previous posters, want this to be just a part of life for all of us.

By the way, Emily will start daycare on Monday. (Yikes!!!) The staff will be doing pt - I went last week to teach them - they had already read up on it and had asked a mom of another child who is an rt to come in ad demo it for them. I have every confidence that they will do a great job in helping us care for Emily. They will let us know asap by phone when other kids come down with the really bad stuff so that we can decide if Emily should attend or not. They will also be keeping a really clode eye on the toys that are used by all the other kids and bleach them before Em gets them. When Isabelle was in the baby room with these same teachers, she had maybe two little colds from Jan. - May, so I already know that they do a good job of keeping things pretty germ free.

Obviously, I'm pro-telling everyone. For me, trying to keep track of who I've told and who shouldn't know is just too exhausting. The support we get when people find out is well worth the possible negative outcomes. Sorry - I'm not checking this for spelling - Emily needs to eat! LOL!
 
L

Lungboy911

New member
I also agree that you should not hide it. I am glad my parents told people I had CF. I know that most of the hockey parents knew I had CF, back in 1972 when I was four years old. When I was a teenager, I didn't hide it, but my friends knew. However, even though I was open and my teammates on the High School Basketball Team knew I was still teased by a couple of stupid teenagers. You will always run into idiots no matter if you're open or not. But, even you will admit, if each person just has one good, close friend, that they would be pretty lucky.

Anyways, I also wanted to share this story with you. I met my wife when she was 17 and I had just turned 19. She was Freshman in college and one of my roommates told her I had CF. I didn't know this had happened and a few days later I shared with her that I had CF. I still remember this moment in my life, because I took her to a tree near our dorm rooms and decided to make it romantic like. Just to keep the tension as loose as possible. That's when she told me, she already knew and had no problem with it. We've been together since 1987. So my point is, and I have a 9 year-old daughter. So maybe it's the dad in me, but if it's the right guy for our daughters. They will not care what is right or wrong with them, they will just love them for who they are.

By the way, my 38th birthday is tomorrow and I still play in 3 different hockey leagues. By the way when I tell people I have CF. and they say I'm sorry. That gives me the opportunity to tell them about the great progress the CF Foundation & doctors have made since 1970 and how a contribution would go a long way.
 
M

Mommafirst

Guest
Thank you so much Scott, for sharing all that with me.  I came
to this board because I wanted to know people who have been living
with CF for some time and seek their wisdom!  I have learned
so much in the last few months about CF, but its all clinical
information, not about the humanity of living with it.  I know
I am going to make mistakes, I've made other parenting mistakes
with my other kids, but I can only hope I won't mess any of them.
 
D

Dad89

New member
 Let it be in the open.  We have a teenage daughter with
CF.  We never hid it.  Just let it be part of our lives.
 And now that our daughter is a teenager, it is important that
she does not have all that added self inflicted social pressure on
her.  Being a teenager is tough enough.  <br>
<br>
 
E

EnergyGal

New member
Always be upfront and be honest with all parties. I agree with everyone on the subject that more damage can be done to a childs mind if things are hush hush. We live in a society where hush hush no longer exists. There is nothing to be embarassed about. when I would have a coughing attack in public I would always tell others do not worry I have CF it is not contagious and I felt others felt a sense of relief knowing that they could not catch something rather than feeling sorry for me or feeling pity for a stranger or a potential friend. People think of themselves first and you second so do what is best for you and your family.

I remember when I was dating before i got married and a older man friend of mine said you will probably meet more men who are interested in you with your cf than a healthy single woman with children who are divorced. Everyone today views life's challenges differently and having a disease does not make you different unless you act and let others treat you differently.

I am sure you will make the right decision.
 
E

EnergyGal

New member
A child who is told taught to keep their CF a secret will probably grow up feeling embarassed that they have their cf and probably resent their illness. This could have a damaging effect on how they view their CF and how they take care of themselves in the future.

I have a friend with CF whose parents did not tell him until he was older and he resented his family for this. Oddly he does not tell his kids he has cf so he is repeating his parents mistake. I am sure he does not realize his intentions but he learned it unconsciously.
 
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