CF Anniversary???

proverbs3

New member
I have a strange one here!!! Faith knows that her 1 year anniversary is coming up this Friday on when she found out she has CF. She has marked it on the calendar and everything. It's not like she excited about it like she would be on her birthday or Christmas, but she does talk about it. She has been remarkable this year. Strong, courageous, enduring a lot of pain, still maintains her laughter (thanks to her dad!), and has a strong faith.

Any suggestions on how to mark this somewhat date. I can't call it a celebration or a milestone. I'm stumped! I want to be able to do something since she talks about all the time and never lets us forget that it's coming up.

Ideas!?!?!?!?
 

proverbs3

New member
I have a strange one here!!! Faith knows that her 1 year anniversary is coming up this Friday on when she found out she has CF. She has marked it on the calendar and everything. It's not like she excited about it like she would be on her birthday or Christmas, but she does talk about it. She has been remarkable this year. Strong, courageous, enduring a lot of pain, still maintains her laughter (thanks to her dad!), and has a strong faith.

Any suggestions on how to mark this somewhat date. I can't call it a celebration or a milestone. I'm stumped! I want to be able to do something since she talks about all the time and never lets us forget that it's coming up.

Ideas!?!?!?!?
 

proverbs3

New member
I have a strange one here!!! Faith knows that her 1 year anniversary is coming up this Friday on when she found out she has CF. She has marked it on the calendar and everything. It's not like she excited about it like she would be on her birthday or Christmas, but she does talk about it. She has been remarkable this year. Strong, courageous, enduring a lot of pain, still maintains her laughter (thanks to her dad!), and has a strong faith.

Any suggestions on how to mark this somewhat date. I can't call it a celebration or a milestone. I'm stumped! I want to be able to do something since she talks about all the time and never lets us forget that it's coming up.

Ideas!?!?!?!?
 

JRPandTJP

New member
THis is a tough one since our litttle one was a baby I can't imagine it being marked with anything but a bit of sadness. It is a tough time of year, but at the same time we found the answer we so much needed to find at the time. We were in the dark before.

Perhaps you can create a journal/story together about how you were in the dark for so long, walking through a forest with no map or guide book. As you wandered you came across many creatures (perhaps symbolic of the symptoms or troubles she had before). Suddenly a path appears and all the creatures gather together to take her to a castle. Here is were each creature reveals their true identity (CF), showing her what she can now do to help each of them. She could explore the castle and come across certain things she'll need on her journey foward (nebulizer = ancient mask), vest = suit of armor, meds = ancient tinctures, ect. She could draw or sketch things/photo collage or even gather things in a special chest to represent all she has learned. Then she could meet a special guide who can tell her she now has all the answers she had been looking for, now it is time to focus on the journey ahead with so much possibility. Will she be a dancer, an artist, a doctor, a vet....anything your know she is in love with as a preteen.

This could happen up until the date or after it, you could really make it fun and she may have a beautiful journal/book at the end of it. It might be theraputic for the whole family. It is indeed a milestone to come full circle from diagnosis to incorporating all the uncertainty if can sometimes bring. Art can be a wonderful way to release things and make sense of them.

Warmly,
Jody
 

JRPandTJP

New member
THis is a tough one since our litttle one was a baby I can't imagine it being marked with anything but a bit of sadness. It is a tough time of year, but at the same time we found the answer we so much needed to find at the time. We were in the dark before.

Perhaps you can create a journal/story together about how you were in the dark for so long, walking through a forest with no map or guide book. As you wandered you came across many creatures (perhaps symbolic of the symptoms or troubles she had before). Suddenly a path appears and all the creatures gather together to take her to a castle. Here is were each creature reveals their true identity (CF), showing her what she can now do to help each of them. She could explore the castle and come across certain things she'll need on her journey foward (nebulizer = ancient mask), vest = suit of armor, meds = ancient tinctures, ect. She could draw or sketch things/photo collage or even gather things in a special chest to represent all she has learned. Then she could meet a special guide who can tell her she now has all the answers she had been looking for, now it is time to focus on the journey ahead with so much possibility. Will she be a dancer, an artist, a doctor, a vet....anything your know she is in love with as a preteen.

This could happen up until the date or after it, you could really make it fun and she may have a beautiful journal/book at the end of it. It might be theraputic for the whole family. It is indeed a milestone to come full circle from diagnosis to incorporating all the uncertainty if can sometimes bring. Art can be a wonderful way to release things and make sense of them.

Warmly,
Jody
 

JRPandTJP

New member
THis is a tough one since our litttle one was a baby I can't imagine it being marked with anything but a bit of sadness. It is a tough time of year, but at the same time we found the answer we so much needed to find at the time. We were in the dark before.

Perhaps you can create a journal/story together about how you were in the dark for so long, walking through a forest with no map or guide book. As you wandered you came across many creatures (perhaps symbolic of the symptoms or troubles she had before). Suddenly a path appears and all the creatures gather together to take her to a castle. Here is were each creature reveals their true identity (CF), showing her what she can now do to help each of them. She could explore the castle and come across certain things she'll need on her journey foward (nebulizer = ancient mask), vest = suit of armor, meds = ancient tinctures, ect. She could draw or sketch things/photo collage or even gather things in a special chest to represent all she has learned. Then she could meet a special guide who can tell her she now has all the answers she had been looking for, now it is time to focus on the journey ahead with so much possibility. Will she be a dancer, an artist, a doctor, a vet....anything your know she is in love with as a preteen.

This could happen up until the date or after it, you could really make it fun and she may have a beautiful journal/book at the end of it. It might be theraputic for the whole family. It is indeed a milestone to come full circle from diagnosis to incorporating all the uncertainty if can sometimes bring. Art can be a wonderful way to release things and make sense of them.

Warmly,
Jody
 

Seana30

New member
wow carol....this is a hard one.

Courtney was diagnosed at the age of 10 so she remembers it. I don't believe she knows what day it was. I sure do though.........April 16, a day I will never forget!

Maybe a dinner out just the 2 of you? Let her talk about her feelings now and at the time of diagnoses. Just let her talk her little heart out about whatever she wants.

I know my kids love when they get some alone time with mom or dad.

Please keep us updated and let us know what you decided to do.

Good luck and take care!

Seana
 

Seana30

New member
wow carol....this is a hard one.

Courtney was diagnosed at the age of 10 so she remembers it. I don't believe she knows what day it was. I sure do though.........April 16, a day I will never forget!

Maybe a dinner out just the 2 of you? Let her talk about her feelings now and at the time of diagnoses. Just let her talk her little heart out about whatever she wants.

I know my kids love when they get some alone time with mom or dad.

Please keep us updated and let us know what you decided to do.

Good luck and take care!

Seana
 

Seana30

New member
wow carol....this is a hard one.

Courtney was diagnosed at the age of 10 so she remembers it. I don't believe she knows what day it was. I sure do though.........April 16, a day I will never forget!

Maybe a dinner out just the 2 of you? Let her talk about her feelings now and at the time of diagnoses. Just let her talk her little heart out about whatever she wants.

I know my kids love when they get some alone time with mom or dad.

Please keep us updated and let us know what you decided to do.

Good luck and take care!

Seana
 

JazzysMom

New member
I have no idea what the date of my dx was, but I remember it vividly. I remember my Mom sitting in the telephone booth (yes the old fashion wooden ones) crying as she called home. I remember learning the CPT etc. I would come right out & ask your daughter what if anything she wants to do. I wouldnt say she was "happy" about it, but it was a life changing day for all of you. You might be surprised at the ideas she has in her head!
 

JazzysMom

New member
I have no idea what the date of my dx was, but I remember it vividly. I remember my Mom sitting in the telephone booth (yes the old fashion wooden ones) crying as she called home. I remember learning the CPT etc. I would come right out & ask your daughter what if anything she wants to do. I wouldnt say she was "happy" about it, but it was a life changing day for all of you. You might be surprised at the ideas she has in her head!
 

JazzysMom

New member
I have no idea what the date of my dx was, but I remember it vividly. I remember my Mom sitting in the telephone booth (yes the old fashion wooden ones) crying as she called home. I remember learning the CPT etc. I would come right out & ask your daughter what if anything she wants to do. I wouldnt say she was "happy" about it, but it was a life changing day for all of you. You might be surprised at the ideas she has in her head!
 
T

tammykrumrey

Guest
I agree with asking her if she would like to go out to dinner or something to maybe reflect on how things have been over the past year.
This is not exactly the same, but I had cancer almost three years ago. And I remember exactly what day it was that my husband and I found out. To my surprise, my husband did too, and he bought me two dozen roses to just let me know that he was thinking about me on that day of the 1st anniversay and that he hadn't forgotten all of the things that I had been through. I didn't feel like it was being treated as a celebration. It was just that he had remembered what a tough situation it was for us as a family and it was his way of saying that he loved me and that he wouldn't forget how it changed our lives.
Both of my girls were too young to remember when they were dx and they have never asked.
 
T

tammykrumrey

Guest
I agree with asking her if she would like to go out to dinner or something to maybe reflect on how things have been over the past year.
This is not exactly the same, but I had cancer almost three years ago. And I remember exactly what day it was that my husband and I found out. To my surprise, my husband did too, and he bought me two dozen roses to just let me know that he was thinking about me on that day of the 1st anniversay and that he hadn't forgotten all of the things that I had been through. I didn't feel like it was being treated as a celebration. It was just that he had remembered what a tough situation it was for us as a family and it was his way of saying that he loved me and that he wouldn't forget how it changed our lives.
Both of my girls were too young to remember when they were dx and they have never asked.
 
T

tammykrumrey

Guest
I agree with asking her if she would like to go out to dinner or something to maybe reflect on how things have been over the past year.
This is not exactly the same, but I had cancer almost three years ago. And I remember exactly what day it was that my husband and I found out. To my surprise, my husband did too, and he bought me two dozen roses to just let me know that he was thinking about me on that day of the 1st anniversay and that he hadn't forgotten all of the things that I had been through. I didn't feel like it was being treated as a celebration. It was just that he had remembered what a tough situation it was for us as a family and it was his way of saying that he loved me and that he wouldn't forget how it changed our lives.
Both of my girls were too young to remember when they were dx and they have never asked.
 

proverbs3

New member
Thank you all so much, this has been EXTREMELY valuable. Faith has always been very open with her disease and after about 3-4 months, she was throwing away her pills!! Shocked us completely - for this is our good child (1 out of 5)! But it gave us an opportunity to talk about this disease and she was very attentative. She now knows everything about it, is never down about it (except for having to get up at 5:00 am), and really takes everything in stride. That's why it took me back a little bit when she kept talking about her "anniversary".

I absolutely love the idea of a journal and my husband loves to write and I love to scrapbook, so between the two of us we should be able to create something really good. I also love the idea with dinner and the roses. My husband tries to take the kids out one on one for dinner, kind of like a date night. They're with me all the time and this is something that will be pretty special for them.

I was apprehensive about putting this up, but I'm so glad I did. You have made my day!!

Thanks again.
 

proverbs3

New member
Thank you all so much, this has been EXTREMELY valuable. Faith has always been very open with her disease and after about 3-4 months, she was throwing away her pills!! Shocked us completely - for this is our good child (1 out of 5)! But it gave us an opportunity to talk about this disease and she was very attentative. She now knows everything about it, is never down about it (except for having to get up at 5:00 am), and really takes everything in stride. That's why it took me back a little bit when she kept talking about her "anniversary".

I absolutely love the idea of a journal and my husband loves to write and I love to scrapbook, so between the two of us we should be able to create something really good. I also love the idea with dinner and the roses. My husband tries to take the kids out one on one for dinner, kind of like a date night. They're with me all the time and this is something that will be pretty special for them.

I was apprehensive about putting this up, but I'm so glad I did. You have made my day!!

Thanks again.
 

proverbs3

New member
Thank you all so much, this has been EXTREMELY valuable. Faith has always been very open with her disease and after about 3-4 months, she was throwing away her pills!! Shocked us completely - for this is our good child (1 out of 5)! But it gave us an opportunity to talk about this disease and she was very attentative. She now knows everything about it, is never down about it (except for having to get up at 5:00 am), and really takes everything in stride. That's why it took me back a little bit when she kept talking about her "anniversary".

I absolutely love the idea of a journal and my husband loves to write and I love to scrapbook, so between the two of us we should be able to create something really good. I also love the idea with dinner and the roses. My husband tries to take the kids out one on one for dinner, kind of like a date night. They're with me all the time and this is something that will be pretty special for them.

I was apprehensive about putting this up, but I'm so glad I did. You have made my day!!

Thanks again.
 
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