The day your child said "I have cystic fibrosis".

[MOM247]

Hi there, this is SARAHSARAH253. I've been unable to login for months;( Tonight I needed to post, and just created a new account. I'm the proud Mommy of Johnny who is now 5 w/cf & Bailey a few weeks away from turning #3. Bailey doesn't have CF. Summer was great! Johnny has been doing awesome still no scary cultures or major events to report Busy lil man w/swimming lessons, pre-school a few hours a day.

We have gave Johnny information as we went along, and plan to continue on that path. Tonight as the kids were talking before bed he said it "I have Cystic Fibrosis". I heard it and paused the tv, and their lil people conversation continued "Lil Sister you don't have Cystic Fibrosis". Ahhh my heart about stopped. Johnny finished it up with talk on his lungs and switched to the heart, that lead to gross boy talk about blood. I didnt interupt. Their fast asleep now, and I'm sitting here wanting to wake up my husband. Thought I share with our CF family. It's a big day to hear him say it for the first time. Just breathe I'm telling myself.

 

[Valerie Keith]

wow thats cool to hear u have some good kids my baby has CF and my other 2 dont and ive bn trying to get around how to say bubby is sick well they no that hes bn in the hosp sence July 13th(date of birth) but to tell them bubby well b sick all his life

 

[Aboveallislove]

I bet that was bittersweet. You hate that he has cystic fibrosis and knows it, but at the same time proud he knows he has it and his sibbling doesn't and that that's part of life. I had a similar one a few weeks past when DS who is 3 said he after 40 minutes of inhalled treatments "all done, I want to play." And I said "no, the medicine is still coming out, we need to finish it." He had just started why stage so asked "why?" I said because we need to do all the medicine. Another why and then I remembered to stop the why-parade with a question and so I said "why do we need to do all your medicine." He paused, put on his thinking face and then said "because I want to stay healthy and not get sick." "Yes that's right, I said." His next why was "why mommy have happy tears." "Because I love you so much and am so proud of you." hugs dear mom.

 

[welshwitch]

I think I was finally able to say it out loud when I was 25. Congrats to your son. (I'm 32 now LOL!)

 

[JENNYC]

Sarah that is something!! I'm so glad to hear that Johnny is doing so well!! It makes me feel good to know that they somewhat understand and aren't afraid to talk about it. I know I had that kind of moment when Abby started gymnastics last month. Her eye is messed up do to some of the surgeries she's had and none of the kids in her class has ever noticed it or if they did I didn't hear about it and I have the teachers watching for me But one of the girls at gym noticed it and asked her why her eye didn't move and my heart stopped!! I wasn't sure how this was going to play out, but Abby very matter of factly (thank God) said I was born that way and the little girl accepted it and they went on playing. So when we got in the car to go home I quizzed her about it and she didn't remember the surgery that only happened a few years ago. As traumatic as it was she didn't remember!! I explained to her that her eye was not like that since birth that her CF had caused a few problems, she didn't ask any questions. But next time we went to gym, I couldn't believe it but the same little girl wasn't through with the conversation so again I listened intently and this time she said My CF made my eye like this, still matter of factly and without a care in the world!! Thank you God!! It worries me so much because she is so noticeably different, where before she wasn't. It was hard to hear but so proud of how she handled it!! I couldn't wait to get home and tell my husband as well!!

 

[MOM247]

Hi Jenny, I'd love for you to message me. I believe my old account SARAHSARAH253 account had messages from you. My son has the same mutation as your daughter the 2585delT. I'd love to hear how your daughter is responding to Kalydeco. Also are you on Kalydeco for the DF08 or 2585delT? I don't much about his mutations? Love to hear from you?

Glad to hear your daughter is also very confident Love that!!

Sarah

Mommy to Johnny 5 w/cf & bailey almost 3 no/cf

 

[Rebjane]

Sarah,

It is bittersweet. Our kids put up with so much. I actually can not remember when my daughter said she had CF. It's just always been the way it is. Things come up as time passes. The day my daughter asked me if she is going to die from CF tore my heart out.

Today she wore a shirt to school that says "I outrun CF". It was actually my shirt but she saw me wearing it and said she should be wearing it. SO I gave it to her; and it fits her which freaks me out in itself...When I saw her wearing that shirt it again turned my heart out; but she is a strong 9 year old. She makes me proud.

 

[JENNYC]

Wow Rebjane!! That is my worst fear!! I fear the day that she googles CF or one of her friends does and tells her that she has a life expectancy. We don't make a big deal about it, we let her know that she is different but it's nothing that she should be concerned about. She has such a spectacular personality and I fear that that will change when she finds out all of the scary stuff that goes along with CF. How did your daughter take all of that? And 9 is such a young age to find out I feel like when the time comes that she asks me that question I'll tell her that only God knows when that day will be and that as long as she does everything her dr's tell her to do that there is no reason why she can't outlive me. May I ask how you handled it? I would be very proud of her too, she sounds like a very strong your lady!!

 

[Allansarmy]

I think it probably just made it more real when he said it. Like he was taking ownership. My son was diagnosed at 4 months and he is now 16 years old. I really can't remember when he started saying it. Probably close to 5 I guess as he would explain it to his teachers.

 

[Rebjane]

Jenny,

Hmm, how did I handle my daughter questioning her mortality? I think it's a hard concept for any child. I felt I wanted to tell her the facts first instead of her looking something up online or someone at school saying something stupid to her(kind of like the sex talk).

I pretty much said everyone dies. We all have turn on this earth. This is our turn. So, we do our best to make the most of our turn. I did let her know there is no cure for CF. That yes children can die from CF but that doctors and scientists are working very hard to find better treatments and medications to fix the underlying cause of CF. I also let her know how important it is to do her treatments. And that I will do everything in my power to make sure she stays healthy.

The conversation happened in the car; totally took me off guard....She looked a little scared but she knows what I said was true. I think she was ok with it.

 

[JENNYC]

Wow thanks!! It just scares the mess out of me! That's one thing I have going in my favor is I NEVER lie to her. I don't tell her everything but I make it a point to never lie about what I do tell her so that she can trust what I say.

 

[CrisDopher]

You're a wise Mommy, Jenny.

 

[JENNYC]

Thanks, I am trying really hard not to mess this up

 

[zeeannie]

Yes, I remember that moment when my daughter first "took ownership" of her CF. We always talked about it and didn't try to hide it. To her it was like, I have blue eyes, I have CF, etc.
When she was in 2nd grade she came up with an idea to tell her whole class about what CF is. I helped her make a display board, and with an outline for her speech. We scheduled a time with her teacher and we went in with her board, and a video. She gave a presentation in front of the whole class explaining what she has and what it means for her at home and at school. I was so proud of her I had tears in my eyes the whole time!
I was amazed at how confident she was, and even more amazed at how the kids questions were so frank and intelligent. I expected a little negativity, but there was only curiosity. So cool...

 

[ryry11]

The day your child said "I have cystic fibrosis".

When I was in 3rd grade, a mom found out I had CF and told her daughter I was going to die. The daughter came to school and told me. And my entire class. It was EXTREMELY traumatizing. I then googled it an got even more upset. So, uh, I don't know how to solve it, but avoid that particular chain of events.

 

[littlemisscoughsalot]

When I was in 3rd grade, a mom found out I had CF and told her daughter I was going to die. The daughter came to school and told me. And my entire class. It was EXTREMELY traumatizing. I then googled it an got even more upset. So, uh, I don't know how to solve it, but avoid that particular chain of events.

I just read something by Lisa Greene saying you should have the talk about dying from cf around the age of 8. not looking forward to that talk, but i guess it beets your experience.