I need some advice about talking to our 7 year old about CF, again. We are going to the CF clinic in our area in a couple of weeks and we will obviously be talking about it in front of him. He knows his karate teacher has it. He has also done the Climb for the Cure so he knows how serious it all is since he knows our contributions are helping with research.
He has been through a bazillion tests for just about everything else. He was even checked for a brain tumor at one point though I don't know how much of that he really processed. When he had his sweat tests, we did tell him it was for CF. He asked at that point if people die from CF and we told him that, yes, people do die but that there are many many things that can be done to treat people and that prevention is the key. When he learned his sweat tests were negative, he said he was so happy.
And now, we are back in the saddle again. I am a Social Worker and dad is a teacher so we are well aware of age-appropriate conversations with kids but somehow it is so different this time around. I do not know whether to tell him he is being re-tested? SHould I tell him the doctors are really good at helping people even if they don't have CF which is why we are there? (we don't technically have a diagnosis so that isn't a lie). He is very sharp and because of all of his tests and ill health over the years, we won't get away with generalities for the most part.
Lately, he has been talking a lot about dying. He read some genetics notes I had written down while talking to Ambry. (that is shocking in and of itself since it was my chicken scratch cursive, I cannot believe he could read it!) He asked when he was going to die. Later, he asked if he would have died without his g-tube. For that, I said yes, thank goodness we have it! He is a really happy little seven year old kid but I know he really just wants more answers.
Any advice would be really helpful. Thanks a lot.
He has been through a bazillion tests for just about everything else. He was even checked for a brain tumor at one point though I don't know how much of that he really processed. When he had his sweat tests, we did tell him it was for CF. He asked at that point if people die from CF and we told him that, yes, people do die but that there are many many things that can be done to treat people and that prevention is the key. When he learned his sweat tests were negative, he said he was so happy.
And now, we are back in the saddle again. I am a Social Worker and dad is a teacher so we are well aware of age-appropriate conversations with kids but somehow it is so different this time around. I do not know whether to tell him he is being re-tested? SHould I tell him the doctors are really good at helping people even if they don't have CF which is why we are there? (we don't technically have a diagnosis so that isn't a lie). He is very sharp and because of all of his tests and ill health over the years, we won't get away with generalities for the most part.
Lately, he has been talking a lot about dying. He read some genetics notes I had written down while talking to Ambry. (that is shocking in and of itself since it was my chicken scratch cursive, I cannot believe he could read it!) He asked when he was going to die. Later, he asked if he would have died without his g-tube. For that, I said yes, thank goodness we have it! He is a really happy little seven year old kid but I know he really just wants more answers.
Any advice would be really helpful. Thanks a lot.