I have been checking out the forums for awhile now and have found alot of useful info. I just joined a few weeks ago and this is my first time entering anything. I am from a small town where I know no one with CF, and its nice to know that there are others out there who are experiencing the same fears and uncertainities as I sometimes do. The doctors here are always eager to "get their hands on me" since my condition is a rariety in my area. I am 33 years old and I have 2 boys w/o CF (i thank God everyday for that blessing). I have a wonderful husband whom I don't know what I'd do w/o him and his support. My brother is 39 and he also has CF but he lives in CA and Im in Va, so its not always easy to get in touch with him. My boys are now 8 and 11. My question is this, at what age are they capable of handling the details of my disease?? I don't want to overwhelm them but at the same time I want to be honest about the way things could go as I get older. I am also diabetic, as if CF wasn't enough!! How much should then know and at what age??? You experience with this will help me greatly. This place is like my safe place......thanks for letting me share!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
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Just want to introduce myself
- Thread starter dragonfly
- Start date
Emily65Roses
New member
I have a very simple idea for when children should be told this type of stuff, whether they are the CFer, or a parent or sibling is. When the child knows enough and cares enough to ask a question, they're ready for whatever the answer is. That's not to say if they ask something like "Are you sick?" you say "Yes, mommy's going to die." You just answer the exact question they've asked. "Yes, mommy's sick." Once they get to the point where they can handle the death situation, they'll ask that particular question.
I suppose not everyone will agree with this line of thinking, but at least take it into consideration. Kids can usually handle a lot more than parents like to think. And whatever you do, whether or not you take my advice, at least take this much with you:
Do NOT lie to them. Ever. Kids really resent that, especially when it's about something serious like CF. Allie's daughter Ahava is only 5. Her dad Ry died back in May (when she was still 4), and they were both 100% honest with her. A lot of people don't understand that, but I think it's smart as hell. And Ahava will one day really appreciate that they didn't lie to her.
I suppose not everyone will agree with this line of thinking, but at least take it into consideration. Kids can usually handle a lot more than parents like to think. And whatever you do, whether or not you take my advice, at least take this much with you:
Do NOT lie to them. Ever. Kids really resent that, especially when it's about something serious like CF. Allie's daughter Ahava is only 5. Her dad Ry died back in May (when she was still 4), and they were both 100% honest with her. A lot of people don't understand that, but I think it's smart as hell. And Ahava will one day really appreciate that they didn't lie to her.
Honesty is always the best policy. When Ahava was old enough to understand, we told her what was wrong with Ry, that's why he had to take all those medications and stuff, as age appropriate as possible. As she got older she asked more questions, and we ave the simplest answers possible, while still sticking to the whole truth. And so, when she asked if Ry was going to die, we told her the truth. And we got a lot of criticism for it, but I think it was the right thing to do. When she was younger, we had her hamster die. We took that as an opportunity to tell her about the difference between body and soul, and all of that. We also refused to send her away when Ry was dying, as she was just as much a member of the family as the rest of us, and I thought it would be more traumatic for her to leave and return to her father having disappeared.
Your kids are older than Ahava, so they may not ask because they are afraid of the answer. But I encourage being as forthcoming with them as possible, in my opinion, they are old enough to hear it. Most Cfers know by this age that eventually they will die, and I think kids deserve a lot of credit for understanding things adults don't trust them with. It's better that they find out from you than a textbook.
if you have any other questions you can Im or email me, all the info is in my profile.
Your kids are older than Ahava, so they may not ask because they are afraid of the answer. But I encourage being as forthcoming with them as possible, in my opinion, they are old enough to hear it. Most Cfers know by this age that eventually they will die, and I think kids deserve a lot of credit for understanding things adults don't trust them with. It's better that they find out from you than a textbook.
if you have any other questions you can Im or email me, all the info is in my profile.
So far I havent had the ??? on death connected to my CF. I will be honest should it come up tho. Jazz has asked in general about us all dying & I answer those ??? honestly. Her Dad really hates the death talk & that concerns me because it is something that cant & shouldnt be avoided. I agree with not having Ahava go somewhere & then come home to her Daddy being gone. We had a taste of that just with me going into the hospital & the affects that last to this day. So now I let Jazz know everything (within reason of course) so there are no surprises anymore. The difference I do believe like Allie said is with kids being older they might not ask because they dont want to hear the answer. Death is a bit more comprehensible at a later age.
I am about 2 hours north of Richmond. My specialist is in Charlottesville, UVA. I also have a local resp. specialist that is super!!! thanks for the responce. My boys are great kids, and; i firmly believe that honesty is the best way to go. We take it one day at a time and deal with things as they happen. The rest just always seems to fall into place.
Dragonfly:
Shawn 33 w/ CF ; mother of Doug and Kevin w/o CF
Dragonfly:
Shawn 33 w/ CF ; mother of Doug and Kevin w/o CF