I was babysitting my 6 month old nephew a few days ago and my son was playing with him on the floor. He loves his baby cousin and started to massage his back and then he started to do CPT on the baby. I told him that his cousin doesn't need CPT because he does not have CF. He got pretty upset and wanted to know why he was the only one with a disease. I think it was the first time he has ever seen himself as different. We have always been open with him about CF and answered any question he may have, but I wasn't prepared for that one. I tried to get scientific (pretty basic because he is almost six) and explain why his friends and most kids don't have CF, but he was looking for a better answer. It broke my heart to see him crying and wishing his cousin had it too. He doesn't want his cousin to get sick, he just wants to "share" it with someone. I have never seen a child look more alone and confused. Did I do the right thing? It was such a profound moment for him and I pray that I didn't say the wrong thing, or maybe I told him too much. Has anybody experienced this? Should I talk to him again?
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why do I have this?
- Thread starter cfmomma
- Start date
Sheli,
How heartbreaking for you, I'm sure all the parents here have heard questions like this. Unfortunately its one of many times you will be faced with tough questions like this from your son. Just be honest with him and say you don't know. Let him know his feelings are ok. He needs reassurance and support from you. I used to point out to my boys that many people have things to deal with in life, some physical, some mental, some as children, some as adults and we all just do the best we can with what we're given. Sometimes there are no answers.
Its interesting to hear them try to figure out their disease at different stages. My son asked one time "so CF is a bad thing?". What do you say? Even yesterday my boys were talking about the fact that they both have cf. It was interesting to hear them say that they were glad they BOTH have it because it would be so hard to have one with and one without.
Its not easy. I feel for you.
How heartbreaking for you, I'm sure all the parents here have heard questions like this. Unfortunately its one of many times you will be faced with tough questions like this from your son. Just be honest with him and say you don't know. Let him know his feelings are ok. He needs reassurance and support from you. I used to point out to my boys that many people have things to deal with in life, some physical, some mental, some as children, some as adults and we all just do the best we can with what we're given. Sometimes there are no answers.
Its interesting to hear them try to figure out their disease at different stages. My son asked one time "so CF is a bad thing?". What do you say? Even yesterday my boys were talking about the fact that they both have cf. It was interesting to hear them say that they were glad they BOTH have it because it would be so hard to have one with and one without.
Its not easy. I feel for you.
I dont have a true answer for you, but I do have a thought. Please realize that CPT isnt just done on CF patients. Many people with respiratory illnesses & even acute cases of pneumonia get cpt depending on the area. The fact that he was doing it on his cousin wouldnt have hurt anything except if the cousin eventually didnt want it done & since he doesnt have CF wouldnt NEED it done. How to repair it now? Hmmm......Just let him know that we all have things "different" & his just happens to be CF. I realize this makes it difficult to mind the "differences" that might be large enough to satisfy him, but other than that.....its a part of life & although it sucks, it is what it is. Sadly this is what I had to tell my daughter when I went into the hospital last time. She didnt understand why I had to be admitted if I was doing everything I was suppose to at home.
Sheli,
My heart broke just reading about your situation. I think you did the right thing. Just tell them the truth, in a way that they can understand. My daughter is almost 4 and I know the question is coming my way someday. We have never hid the fact that she has cf from her, but to this point she hasn't quite figured out how she's different from the other kids. She does understand that she's the only person around that takes enzymes and we tell her it's because her tummy will hurt if she doesn't and that they will help her grow big and strong. It's all the truth she's ready for at this age.
My heart broke just reading about your situation. I think you did the right thing. Just tell them the truth, in a way that they can understand. My daughter is almost 4 and I know the question is coming my way someday. We have never hid the fact that she has cf from her, but to this point she hasn't quite figured out how she's different from the other kids. She does understand that she's the only person around that takes enzymes and we tell her it's because her tummy will hurt if she doesn't and that they will help her grow big and strong. It's all the truth she's ready for at this age.
spicyone18
New member
I don't have an answer for you either, but I do think you gave a good answer to him. My niece is 6 years old she doesn't have CF, but I do. She is always asking me why am I the only one getting sick all the time, or why am I the only one that has to go into the hospital. She also knows that I am going into the hospital more often. So she doesn't know that I have CF, but she knows I cough a lot and I am sick. Almost everytime I see her she asks these questions. Its hard. So I basically am faced with the same thing just in a different perspective.
Sheli, Reading your letter brought me back to when my daughter was about three. {she's twenty now}Me and my husband always rocked her and we would say mommie's or daddies little baby is so sick. One night she was laying on my chest and I said that and she looked up at me and said mommy when a'm I not going to be sick anymore?In tears I prayed silently that someday we could tell her she wasn't going to be sick anymore.She would ask why her brother didn't have to take medicine or do treatments.You did the right thing, You just tell what you think he is old enough to understand . I also have a five year old neice w/cf. My daughter is a very good role model for her .I wished there wasn't such a big age difference .
S
skh
Guest
Sheli, I think you handled it just fine. Giving too much information and information that they can not understand is not good - atleast that is how I feel. My daughter was diagnosed at age 11 and is now 15. She will discuss her disease with me but there are not too many other people that she will talk about it with. I let her set the pace, we both know she has cf but at this point she is very healthy and she doesn't want cf to be the main focus. Right or wrong that is how we are dealing with it for now.
Sheli,
I agree with Jane and everyone else, how heartbreaking for you. But I also feel you did the right thing for yourself and for your son by being honest with him. Just as it took you and your family time to adjust to his CF diagnosis, it will take him time- probably a lot more- to come to terms with it.
He's going to be coming out with a lot more questions now, or repeats of the same questions he's already asked. I don't dobut that you will be consistent and honest with him, but I am just encouraging you to do so. He needs his parents to be that, honest- of course keeping things age appropriate.
Mark still has hard feelings (only when he stops to think about it though) about things his mom never told him (things that she KNEW but just couldn't bear to tell him) that he had to learn from doctors or others. Just be honest with him.
I agree with Jane and everyone else, how heartbreaking for you. But I also feel you did the right thing for yourself and for your son by being honest with him. Just as it took you and your family time to adjust to his CF diagnosis, it will take him time- probably a lot more- to come to terms with it.
He's going to be coming out with a lot more questions now, or repeats of the same questions he's already asked. I don't dobut that you will be consistent and honest with him, but I am just encouraging you to do so. He needs his parents to be that, honest- of course keeping things age appropriate.
Mark still has hard feelings (only when he stops to think about it though) about things his mom never told him (things that she KNEW but just couldn't bear to tell him) that he had to learn from doctors or others. Just be honest with him.
coltsfan715
New member
Hi Sheli,
I think you did fine. I have CF and though I don't remember much about things before I was 10, I remember my first "serious" talk about CF with my mom when I was about 6-7.
My parents til that point just gave me my meds and I went to the doc and in the hospital - that was all I knew. I knew I had CF I had heard it discussed, but didn't know much more. Then I had 2 friends pass away from CF and I knew that was what had killed them. I had a bit of a breakdown thinking I was going to go next and asking why me? Why do I have to have this kinds of questions.
I remember my mom crying and telling me she didn't know why I had to have CF, but that it could always be worse. Of course being a dramatic little kid I cried "How!?!" Then my mom talked it out with me and made me realize that I loved to talk and I could have been born without the ability to talk or to hear or to see or without the ability to walk and so on. She knew things that I loved and would hate to lose and sat with me and made me realize that yes I had CF, but I could handle it and like we all know everyone has things they have to deal with.
I do think you will know when the right time is to tell your son things. You know your child best and what they are ready to hear. My parents didn't really take the steps to educate me about my meds until I got over 10, they didn't want me to have to worry about that. They wanted me to enjoy being a kid. Once I started asking the questions they knew I was ready to learn more and they took it from there.
I think you did fine handling the situation. I hate that he got so upset. I do agree with what Melissa said though, so long as he is not hurting his cousin and/or he is not trying to give medicine to other kids I don't think trying to do CPT on someone is a big problem. I used to do it on my dolls (I am an only child and all our family lives out of town) and I used to try and do it to my mom. It helped me to understand what I was having done to me as I was getting older.
Have a good one,
Lindsey
I think you did fine. I have CF and though I don't remember much about things before I was 10, I remember my first "serious" talk about CF with my mom when I was about 6-7.
My parents til that point just gave me my meds and I went to the doc and in the hospital - that was all I knew. I knew I had CF I had heard it discussed, but didn't know much more. Then I had 2 friends pass away from CF and I knew that was what had killed them. I had a bit of a breakdown thinking I was going to go next and asking why me? Why do I have to have this kinds of questions.
I remember my mom crying and telling me she didn't know why I had to have CF, but that it could always be worse. Of course being a dramatic little kid I cried "How!?!" Then my mom talked it out with me and made me realize that I loved to talk and I could have been born without the ability to talk or to hear or to see or without the ability to walk and so on. She knew things that I loved and would hate to lose and sat with me and made me realize that yes I had CF, but I could handle it and like we all know everyone has things they have to deal with.
I do think you will know when the right time is to tell your son things. You know your child best and what they are ready to hear. My parents didn't really take the steps to educate me about my meds until I got over 10, they didn't want me to have to worry about that. They wanted me to enjoy being a kid. Once I started asking the questions they knew I was ready to learn more and they took it from there.
I think you did fine handling the situation. I hate that he got so upset. I do agree with what Melissa said though, so long as he is not hurting his cousin and/or he is not trying to give medicine to other kids I don't think trying to do CPT on someone is a big problem. I used to do it on my dolls (I am an only child and all our family lives out of town) and I used to try and do it to my mom. It helped me to understand what I was having done to me as I was getting older.
Have a good one,
Lindsey
I do believe when a child with CF receives CPT they are also receiving a form of love at the same time. It could be your Son was trying to give his cousin love the same way that he receives it. That could be a small part and the other part is he is trying to figure out that if this CPT is good for me then it should be good for the next person. I think this is called mirroring. Perhaps he is trying to see himself in someone else to fully understand the whole concept and if this is true he will be doing other interesting explorations. You know children like to play doctor and this is probably what he was doing too. I often give CPT as part of a massage to my husband.
In your next explanation to your Son, mention that CF is not the only illness that affects children. He needs to see that other children have other illnesses. So he can appreciate and understand his CF. I remember seeing a slightly older child who was diabetic and I learned he had to take insulin. I was amazed at this young man and it helped me to deal with my CF in a different way. I cannot remember the thoughts I had but I know it made an impact on me. He looked healthy and was very active.
He could be searching for an inspiration as well so being creative with him will help and teach him too.
just my thoughts
Risa
In your next explanation to your Son, mention that CF is not the only illness that affects children. He needs to see that other children have other illnesses. So he can appreciate and understand his CF. I remember seeing a slightly older child who was diabetic and I learned he had to take insulin. I was amazed at this young man and it helped me to deal with my CF in a different way. I cannot remember the thoughts I had but I know it made an impact on me. He looked healthy and was very active.
He could be searching for an inspiration as well so being creative with him will help and teach him too.
just my thoughts
Risa
Thanks for all the support! I love it when my son gives me CPT, it's like a massage. It's a loving, normal thing in our family and I should have explained to him a little better why his cousin didn't enjoy it, rather than why he didn't need it. He hasn't talked about it in a few days, but I think I'm ready for him this time.
I was diagosed with Crohn's disease at the age of ten, I had been suffering for many years but it took a long time to diagnose (I'm sure some of you can relate!). I had horrible stomach pain, severe weight loss, and lots of blood in my stool. I never told anyone about the bleeding because I was ashamed and doctors said my stomach hurt because I was an "anxious" child. I spent a large chunk of my childhood hating myself, hiding my symptoms, and feeling completly alone. Once I was diagnosed and I realized it wasn't my fault, along with getting emotional support, I did feel better. I never, never want my son to feel how I felt back then. I guess that is why I was so upset, it brought back my bad memories, I don't want him to feel alone. I want him to be able to talk openly about CF, even if it sometimes hurts.
One of the best things my mom did, after I was diagnosed, was to buy a "bop" punching bag for me so I could get my anger out. I pretended it was those idiot Drs. that said everything was in my head. My son has already gone through two!!!!
Thank you so much for all the support, we could't get through this without all of you.
I was diagosed with Crohn's disease at the age of ten, I had been suffering for many years but it took a long time to diagnose (I'm sure some of you can relate!). I had horrible stomach pain, severe weight loss, and lots of blood in my stool. I never told anyone about the bleeding because I was ashamed and doctors said my stomach hurt because I was an "anxious" child. I spent a large chunk of my childhood hating myself, hiding my symptoms, and feeling completly alone. Once I was diagnosed and I realized it wasn't my fault, along with getting emotional support, I did feel better. I never, never want my son to feel how I felt back then. I guess that is why I was so upset, it brought back my bad memories, I don't want him to feel alone. I want him to be able to talk openly about CF, even if it sometimes hurts.
One of the best things my mom did, after I was diagnosed, was to buy a "bop" punching bag for me so I could get my anger out. I pretended it was those idiot Drs. that said everything was in my head. My son has already gone through two!!!!
Thank you so much for all the support, we could't get through this without all of you.