Who should I tell or not tell

[kayleesgrandma]

Kaylee is only 3yrs, but knows she has to take pills and Rx. She doesn't understand CF, but I think she knows she's different from the other kids in her daycare. She does her vest there 2x/day, and the kids gather around to hear her sing, 'cause it sounds so cool! Unfortunately, this all feeds into her "I'm the Princess"" attitude! Her big brother at 7 knows the seriousness of CF--(we haven't discussed the end result) so that when we went to test him, he said "I hope I don't have CF!"--he just didn't want to take so many pills! We tell everyone about CF, 'cause the more who know, the better. Ignorance is not bliss! It's good to get so many opinions from here--there is so much experience to learn from. Good luck in what you decide.

 

[anonymous]

At first, I felt like I had to tell EVERYONE (in my moms groups, library groups, - anything that I participated in with my daughter) but now over time I don't even think to tell people when I meet them bc I have realized that it just isn't that much of who my daughter (3wcf) is. Many of the moms in my "groups" know by now and I have no problem telling them about it - it just isn't the first thing on my mind anymore. I have gotten the occasionial "I can tell you are a first-time mom" type of comment when I get out my santizer but I just blow it off. Many of my friends are neurotic in their own ways too so we balance eachother out, lol.

Also, I don't want to keep her CF a secret by any means bc we do lots of fundraising for the CFF and because she takes enzymes, does Vest and will most likely continue to add therapies throughout her life. I don't ever want her to feel like she needs to keep it a secret bc that could lead to non-compliance (not wanting to do treatments, take meds, etc) so I don't keep it a secret either.

HTH!

 

[tessa55454]

Do what my mom did, "Tessa is not a retarded child, she has all her limbs and mental faculties. In fact, some CF children are known to be over achievers."

Be honest and tell people, but with every question, say she can do anything, but she has strict guildelines she MUST follow.

Take Care,
Tessa

 

[Scarlett81]

I don't think that it should be a secret. I can see that being a resentment issue once the kid is grown up. I would feel possibly ashamed if my family made it a secret. Even if that wasn't true, and not at all the motive in a parent not telling, I can still see a kid feeling that.

On the other hand I don't think the kid should wear a 'i have cf' sign on their head either.

It's a balance. It's part of life. I think that was the one thing my mom got right. Everyone knew I had it. She let me go out in the snow and play with everyone else, she didn't coddle me. But she expected me to do all my therapies too, and be strict with that. On the other hand, my one aunt did it to the extreme and associated my whole existance to me having Cf. To this day she still views me as a pitied child I feel.