My daughter is scared, what do I tell her ?

[lmattaway]

I know every child is different in how they deal with their CF, but I was (and am) always grateful that my parents were completely open with me about CF. They let me read whatever I could get my hands on about it, with the understanding that I would come to them with any questions I might have. I gave health lessons about it in elementary school, so that my classmates would know why I took those "horse pills" and why I sometimes missed days of school. By the time I was in high school it was a "non event" everyone knew I had CF, and could probably explain it to anyone who asked.

That being said, yes, I went through a period where I thought "am I going to die?" and I struggled with that. I was raised with a strong faith and that ultimately kept me from wallowing in self pity. But I think that process is one that every CF person has to go through on their own. We all have to decide just how we're going to let it affect us.

Be supportive, teach her she can do anything she puts her mind to. Emphasize the importance of being educated about CF and taking responsibility for her treatments and her overall health.

 

[lmattaway]

I know every child is different in how they deal with their CF, but I was (and am) always grateful that my parents were completely open with me about CF. They let me read whatever I could get my hands on about it, with the understanding that I would come to them with any questions I might have. I gave health lessons about it in elementary school, so that my classmates would know why I took those "horse pills" and why I sometimes missed days of school. By the time I was in high school it was a "non event" everyone knew I had CF, and could probably explain it to anyone who asked.

That being said, yes, I went through a period where I thought "am I going to die?" and I struggled with that. I was raised with a strong faith and that ultimately kept me from wallowing in self pity. But I think that process is one that every CF person has to go through on their own. We all have to decide just how we're going to let it affect us.

Be supportive, teach her she can do anything she puts her mind to. Emphasize the importance of being educated about CF and taking responsibility for her treatments and her overall health.

 

[lmattaway]

I know every child is different in how they deal with their CF, but I was (and am) always grateful that my parents were completely open with me about CF. They let me read whatever I could get my hands on about it, with the understanding that I would come to them with any questions I might have. I gave health lessons about it in elementary school, so that my classmates would know why I took those "horse pills" and why I sometimes missed days of school. By the time I was in high school it was a "non event" everyone knew I had CF, and could probably explain it to anyone who asked.

That being said, yes, I went through a period where I thought "am I going to die?" and I struggled with that. I was raised with a strong faith and that ultimately kept me from wallowing in self pity. But I think that process is one that every CF person has to go through on their own. We all have to decide just how we're going to let it affect us.

Be supportive, teach her she can do anything she puts her mind to. Emphasize the importance of being educated about CF and taking responsibility for her treatments and her overall health.

 

[lmattaway]

I know every child is different in how they deal with their CF, but I was (and am) always grateful that my parents were completely open with me about CF. They let me read whatever I could get my hands on about it, with the understanding that I would come to them with any questions I might have. I gave health lessons about it in elementary school, so that my classmates would know why I took those "horse pills" and why I sometimes missed days of school. By the time I was in high school it was a "non event" everyone knew I had CF, and could probably explain it to anyone who asked.

That being said, yes, I went through a period where I thought "am I going to die?" and I struggled with that. I was raised with a strong faith and that ultimately kept me from wallowing in self pity. But I think that process is one that every CF person has to go through on their own. We all have to decide just how we're going to let it affect us.

Be supportive, teach her she can do anything she puts her mind to. Emphasize the importance of being educated about CF and taking responsibility for her treatments and her overall health.

 

[lmattaway]

I know every child is different in how they deal with their CF, but I was (and am) always grateful that my parents were completely open with me about CF. They let me read whatever I could get my hands on about it, with the understanding that I would come to them with any questions I might have. I gave health lessons about it in elementary school, so that my classmates would know why I took those "horse pills" and why I sometimes missed days of school. By the time I was in high school it was a "non event" everyone knew I had CF, and could probably explain it to anyone who asked.
<br />
<br />That being said, yes, I went through a period where I thought "am I going to die?" and I struggled with that. I was raised with a strong faith and that ultimately kept me from wallowing in self pity. But I think that process is one that every CF person has to go through on their own. We all have to decide just how we're going to let it affect us.
<br />
<br />Be supportive, teach her she can do anything she puts her mind to. Emphasize the importance of being educated about CF and taking responsibility for her treatments and her overall health.
<br />
<br />

 

[jdprecious]

My daughter is only six but her attitude is great. She obviously wishes she didn't have "sixtyfiveroses" but our conversations always include the words "healthy and happy". We dont dwell on the negative and she knows everything we must endure is to keep her healthy. Its a word we use ALOT. And I say we endure it bc I am right beside her during treatments, hospitalizations, blood draws etc. I dont ever want her to feel as if she is alone in this journey. Also, She knows there could one day be lung transplants and more hospitalizations and even death. I do not sugar coat anything for her bc when she grows up I dont want to hear "Mom, why didn't you tell me the truth?". I try to prepare her mentally as best I can and still try to be age appropriate. So, when you two discuss just try to be as optimistic as possible. Nothing good ever came from negativity. As far as the friends are concerned, Id suggest just telling them she has a lung disease which causes her to need additional treatments than say someone with asthma. They dying thing is just rude and uncalled for. Id address that with the school faculty!

 

[jdprecious]

My daughter is only six but her attitude is great. She obviously wishes she didn't have "sixtyfiveroses" but our conversations always include the words "healthy and happy". We dont dwell on the negative and she knows everything we must endure is to keep her healthy. Its a word we use ALOT. And I say we endure it bc I am right beside her during treatments, hospitalizations, blood draws etc. I dont ever want her to feel as if she is alone in this journey. Also, She knows there could one day be lung transplants and more hospitalizations and even death. I do not sugar coat anything for her bc when she grows up I dont want to hear "Mom, why didn't you tell me the truth?". I try to prepare her mentally as best I can and still try to be age appropriate. So, when you two discuss just try to be as optimistic as possible. Nothing good ever came from negativity. As far as the friends are concerned, Id suggest just telling them she has a lung disease which causes her to need additional treatments than say someone with asthma. They dying thing is just rude and uncalled for. Id address that with the school faculty!

 

[jdprecious]

My daughter is only six but her attitude is great. She obviously wishes she didn't have "sixtyfiveroses" but our conversations always include the words "healthy and happy". We dont dwell on the negative and she knows everything we must endure is to keep her healthy. Its a word we use ALOT. And I say we endure it bc I am right beside her during treatments, hospitalizations, blood draws etc. I dont ever want her to feel as if she is alone in this journey. Also, She knows there could one day be lung transplants and more hospitalizations and even death. I do not sugar coat anything for her bc when she grows up I dont want to hear "Mom, why didn't you tell me the truth?". I try to prepare her mentally as best I can and still try to be age appropriate. So, when you two discuss just try to be as optimistic as possible. Nothing good ever came from negativity. As far as the friends are concerned, Id suggest just telling them she has a lung disease which causes her to need additional treatments than say someone with asthma. They dying thing is just rude and uncalled for. Id address that with the school faculty!

 

[jdprecious]

My daughter is only six but her attitude is great. She obviously wishes she didn't have "sixtyfiveroses" but our conversations always include the words "healthy and happy". We dont dwell on the negative and she knows everything we must endure is to keep her healthy. Its a word we use ALOT. And I say we endure it bc I am right beside her during treatments, hospitalizations, blood draws etc. I dont ever want her to feel as if she is alone in this journey. Also, She knows there could one day be lung transplants and more hospitalizations and even death. I do not sugar coat anything for her bc when she grows up I dont want to hear "Mom, why didn't you tell me the truth?". I try to prepare her mentally as best I can and still try to be age appropriate. So, when you two discuss just try to be as optimistic as possible. Nothing good ever came from negativity. As far as the friends are concerned, Id suggest just telling them she has a lung disease which causes her to need additional treatments than say someone with asthma. They dying thing is just rude and uncalled for. Id address that with the school faculty!

 

[jdprecious]

My daughter is only six but her attitude is great. She obviously wishes she didn't have "sixtyfiveroses" but our conversations always include the words "healthy and happy". We dont dwell on the negative and she knows everything we must endure is to keep her healthy. Its a word we use ALOT. And I say we endure it bc I am right beside her during treatments, hospitalizations, blood draws etc. I dont ever want her to feel as if she is alone in this journey. Also, She knows there could one day be lung transplants and more hospitalizations and even death. I do not sugar coat anything for her bc when she grows up I dont want to hear "Mom, why didn't you tell me the truth?". I try to prepare her mentally as best I can and still try to be age appropriate. So, when you two discuss just try to be as optimistic as possible. Nothing good ever came from negativity. As far as the friends are concerned, Id suggest just telling them she has a lung disease which causes her to need additional treatments than say someone with asthma. They dying thing is just rude and uncalled for. Id address that with the school faculty!

 

[Cherylwithone]

Gina, I have a daughter who is 15 now. When she was younger her friends knew nothing about her health except that she missed alot of school. Her best friend knew. She was asked if she was going to die. Her reply was we are all going to die someday. I don't have any plans on going anywhere soon. With that said during her freshman year she started out ok and then December hit and it went down hill. Hospital, PICC lines etc. She decided to tell her class what was going on. They had someone from the CF Foundation come out an explain CF and they did a answer and question session. Well, the class decided they would form a team for the CF walk to help find a cure for CF. I realize there is a big difference between the ages. But, you would be surprised at how well kids take things compare to us adults.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

Gina, I have a daughter who is 15 now. When she was younger her friends knew nothing about her health except that she missed alot of school. Her best friend knew. She was asked if she was going to die. Her reply was we are all going to die someday. I don't have any plans on going anywhere soon. With that said during her freshman year she started out ok and then December hit and it went down hill. Hospital, PICC lines etc. She decided to tell her class what was going on. They had someone from the CF Foundation come out an explain CF and they did a answer and question session. Well, the class decided they would form a team for the CF walk to help find a cure for CF. I realize there is a big difference between the ages. But, you would be surprised at how well kids take things compare to us adults.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

Gina, I have a daughter who is 15 now. When she was younger her friends knew nothing about her health except that she missed alot of school. Her best friend knew. She was asked if she was going to die. Her reply was we are all going to die someday. I don't have any plans on going anywhere soon. With that said during her freshman year she started out ok and then December hit and it went down hill. Hospital, PICC lines etc. She decided to tell her class what was going on. They had someone from the CF Foundation come out an explain CF and they did a answer and question session. Well, the class decided they would form a team for the CF walk to help find a cure for CF. I realize there is a big difference between the ages. But, you would be surprised at how well kids take things compare to us adults.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

Gina, I have a daughter who is 15 now. When she was younger her friends knew nothing about her health except that she missed alot of school. Her best friend knew. She was asked if she was going to die. Her reply was we are all going to die someday. I don't have any plans on going anywhere soon. With that said during her freshman year she started out ok and then December hit and it went down hill. Hospital, PICC lines etc. She decided to tell her class what was going on. They had someone from the CF Foundation come out an explain CF and they did a answer and question session. Well, the class decided they would form a team for the CF walk to help find a cure for CF. I realize there is a big difference between the ages. But, you would be surprised at how well kids take things compare to us adults.

Cheryl mom to Malora 15 w/cf

 

[Cherylwithone]

Gina, I have a daughter who is 15 now. When she was younger her friends knew nothing about her health except that she missed alot of school. Her best friend knew. She was asked if she was going to die. Her reply was we are all going to die someday. I don't have any plans on going anywhere soon. With that said during her freshman year she started out ok and then December hit and it went down hill. Hospital, PICC lines etc. She decided to tell her class what was going on. They had someone from the CF Foundation come out an explain CF and they did a answer and question session. Well, the class decided they would form a team for the CF walk to help find a cure for CF. I realize there is a big difference between the ages. But, you would be surprised at how well kids take things compare to us adults.
<br />
<br />Cheryl mom to Malora 15 w/cf

 

[laulau555]

when I was 10 I was in fourth grade and we had to do a report on anything we chose. I chose to do the report on CF. I brought in my vest (which my peers LOVED and i even let some try it out on low) and nebulizer, made a poster, and educated my class about exactly what CF was. it helped them to understand why i was in the hospital or why i was coughing and it helped to stop any misunderstandings they had. it also helped me to understand more about the disease as well. my mom nicely told me that some of the stuff i read may be discouraging and assured me new treatments are coming every day and i would be alright. maybe she could ask her teacher if she could do this for the class in a positive manner. the more they know about it, the more they will accept her, and the more SHE knows about it the more she can accept the disease.

 

[laulau555]

when I was 10 I was in fourth grade and we had to do a report on anything we chose. I chose to do the report on CF. I brought in my vest (which my peers LOVED and i even let some try it out on low) and nebulizer, made a poster, and educated my class about exactly what CF was. it helped them to understand why i was in the hospital or why i was coughing and it helped to stop any misunderstandings they had. it also helped me to understand more about the disease as well. my mom nicely told me that some of the stuff i read may be discouraging and assured me new treatments are coming every day and i would be alright. maybe she could ask her teacher if she could do this for the class in a positive manner. the more they know about it, the more they will accept her, and the more SHE knows about it the more she can accept the disease.

 

[laulau555]

when I was 10 I was in fourth grade and we had to do a report on anything we chose. I chose to do the report on CF. I brought in my vest (which my peers LOVED and i even let some try it out on low) and nebulizer, made a poster, and educated my class about exactly what CF was. it helped them to understand why i was in the hospital or why i was coughing and it helped to stop any misunderstandings they had. it also helped me to understand more about the disease as well. my mom nicely told me that some of the stuff i read may be discouraging and assured me new treatments are coming every day and i would be alright. maybe she could ask her teacher if she could do this for the class in a positive manner. the more they know about it, the more they will accept her, and the more SHE knows about it the more she can accept the disease.

 

[laulau555]

when I was 10 I was in fourth grade and we had to do a report on anything we chose. I chose to do the report on CF. I brought in my vest (which my peers LOVED and i even let some try it out on low) and nebulizer, made a poster, and educated my class about exactly what CF was. it helped them to understand why i was in the hospital or why i was coughing and it helped to stop any misunderstandings they had. it also helped me to understand more about the disease as well. my mom nicely told me that some of the stuff i read may be discouraging and assured me new treatments are coming every day and i would be alright. maybe she could ask her teacher if she could do this for the class in a positive manner. the more they know about it, the more they will accept her, and the more SHE knows about it the more she can accept the disease.

 

[laulau555]

when I was 10 I was in fourth grade and we had to do a report on anything we chose. I chose to do the report on CF. I brought in my vest (which my peers LOVED and i even let some try it out on low) and nebulizer, made a poster, and educated my class about exactly what CF was. it helped them to understand why i was in the hospital or why i was coughing and it helped to stop any misunderstandings they had. it also helped me to understand more about the disease as well. my mom nicely told me that some of the stuff i read may be discouraging and assured me new treatments are coming every day and i would be alright. maybe she could ask her teacher if she could do this for the class in a positive manner. the more they know about it, the more they will accept her, and the more SHE knows about it the more she can accept the disease.