The Kid can't stop talking about Cystic Fibrosis.

[MOM247]

Hi there,

My Oh My, my lil #5 Year Old has turned into Mr. Knowledgable on the CF front During each holiday or football game he makes sure the entire room know he needs his enzymes, and why "My tummy needs extra help, because I have cystic fibrosis". If his lil sister is struggling with a task he jumps in with his arms curled and screams "I'm tough, I'm a fighter, I have Cystic Fibrosis".

Its been months of why's and how comes. I've been proud of us! Until yesterday We had put up all of the Christmas. I was setting out the New Years Eve decorations. I put the kids framed Baby New Years Pics-from their 1st New Years Eves. Well Johnny walked up w-his lil sis and said "Look that's me, I used to not have Cystic Fibrosis when I was a baby". I responded with the truth that "No, you have always had cystic fibrosis-you were born with it. I felt that stab in your heart, and changed the subject. Did I goof? Should I tried to further the discussion? Was a coward because my happy mommy face wasn't working Yes, Yes...I guess I just needed to share, because I don't know anyone in my world who could understand how how I feel. Thanks for all you great adults w/cf that help us crazy parents. Best advise I ever got was to roll with it & give info as we go. No need to sit down & have the CF 101 talk

Thanks,

sarah
mommy to Johnny 5 w/cf & bailey 3 no cf

 

[sroeseler]

Honesty is the best policy

Both of our boys, Tanner (5) and Caleb (2) have Cf. Since day one we speak openly and honestly about cf with them. I think its important that they know and understand for themselves what is happening. Tanner is the same way, he informs his whole class as well as teachers and adults when they have questions about his medicine or breathing treatments. It makes him feel in control and not different. We let him see his xrays when the doctor talks with us, he can identify his lungs and knows what infection looks like. We hope as parents that this keeps him from being isolated as a kid or as an adult and lets him see the importance of his treatments. My youngest sister was born with cancer and my parents let us see some things and I think it made it harder that we didn't know what was real and what might happen. I don't want my kids to not know, I want to help anyway I can, so I know its really hard at times but choke back the tears and be honest, let them know, its their life. There are support groups all over if ever need help. Best I can do is be strong and be honest and help them through each day

 

[AmalynRose]

Always the truth

I have always found that being upfront and honest with children is the best approach. I personally believe that telling children little white lies because it is less uncomfortable and easier on the adult is a bad idea. Although your son may not understand what genetics are or how babies are made, there will come a time where he is going to start asking much harder questions about CF that may be more difficult to answer. The more honest you are with him now about his condition, the easier those questions will be to answer later.

Try and remember that young children are very perceptive and feed on the emotions and reactions of their parents. Often times, the reaction of those around them is more traumatizing then the actual event itself. Stay calm and positive and your son will pick up and adopt this attitude. You didn't do anything wrong by correcting him. If you are worried about him, sit down with him and ask him how he feels about it. Let him decide if it is something to be concerned about and go from there.

Don't forget, he loves you very much and when you are happy, he's happy.

Best wishes.

AmalynRose

 

[AleksandraKaczynska]

My daughter is also 5 and talks about cf - sometimes she has a day or two of asking many questions and talking about it. I believe it's also a way of getting attention. But she stops as soon as she can dance around and sing and do other things little kids love to do to get attention
However I also tell her the truth - like others wrote .
she is also at the stage of asking again and again - did she always have cf - was she born with it and why her sister - also 3 - does not. I tell her she got it from her genes from us and Zuzia just got half of it. She then asks: genes? and I tell her it's what we get from our parents so whe have white or dark hair and light blue eyes while other get dark hair and brown eyes and so on..
Before she used to ask why she needs nebs and what different meds do for her.
I don't think you did wrong and even showing your emotions is good also - he loves you and he'll understand and if needed he'll ask you why are you sad about it. I tell my daughter it's cause I wish she didn't have cf and add how much I love her. She sometimes get a bit mad at cf - esspecially when we need to stop her playing around for treatment. I let her and agree with her - but also say that there is nothing whe cen do with this for now and better to have it over and done and.. after nebd we'll change dresses , dance around or go for her favorite snack so far it works.

 

[JENNYC]

Hi Sara!!! Abby is 7 now, and we take the same approach as you. We answer what questions are asked. She doesn't like to talk about it with anyone else, she seems to be embarrassed by it, which breaks my heart. Also she has been through so much that I be sure to be completely honest with her about what ever she asks so that she will trust me when the hard stuff comes to the surface. She also seems to always keep CF on the back burner, she doesn't ever seem to think about it. She only asks questions when she knows we are going to the dr....like are there going to be needles on this trip. And she I over heard her one day telling another kid that asked why her eyes look different that she was born that way....so on the way home I asked her why she said that and she said because it's true... I told her no you just had all of the surgeries last year...don't you remember? She said oh yeah and shrugged her shoulders. So I try to keep her straight but honestly I really don't think she cares all that much which is a relief to me. I absolutely dread the day when the hard questions start...but honestly I am hoping that our "almost cure" will be there by then Good to talk to you again and hope you have a blessed new year!!!!