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Happy Mothers Day !

S

StillFighting

New member
Joni,
<br />
<br />Thank you for the invitation! Unfortunately, I will not be on the boards tomorrow evening. As a matter of fact, I will be at a fund raising event being held tomorrow evening in Montreal, Quebec, Canada. Wish me luck in raising funds and CF awareness!
 
K

kiwilady

Member
Hello Joni & Stillfighting,
Thanks for the invite tonight Jodi, have friends for dinner tonight, will check later in the evening to see if anyone is still up.
Good luck with your fundraiser this evening stillfghting.  Hey,  I got around to updating info on LittleDebbies thread!
Cheers
Eileen.<img src="i/expressions/sun.gif" border="0">
 
K

kiwilady

Member
Hello Joni & Stillfighting,
Thanks for the invite tonight Jodi, have friends for dinner tonight, will check later in theeveningto see if anyone is still up.
Good luck with your fundraiser this evening stillfghting. Hey, I got around to updating info on LittleDebbies thread!
Cheers
Eileen.<img src="i/expressions/sun.gif" border="0">
 
K

kiwilady

Member
<p>Hello Joni & Stillfighting,
<p>Thanks for the invite tonight Jodi, have friends for dinner tonight, will check later in theeveningto see if anyone is still up.
<p>Good luck with your fundraiser this evening stillfghting. Hey, I got around to updating info on LittleDebbies thread!
<p>Cheers
<p>Eileen.<img src="i/expressions/sun.gif" border="0">
 
S

StillFighting

New member
Hi Joni and Eileen,
I am back from the fundraiser and doing my treatments. I thought I would check in.
The event was sensational. It was my coming out speech. I have kept it a secret for 7 years. Not many knew. The elephant was in the room as I spoke. There were lots of emotions this evening. Researchers were present and got to hear first hand as to what it is living with this disease. I am waiting to hear from the Association as to how successful we were in terms of fundraising.
Eileen, I recall when we wrote seven years ago, your were awaiting the arrival of your grandson. It is so nice to hear that he is now 6. Time has gone by too quickly. My daughter is now 8. She is absolutely amazing. I am so proud of her. I am also pleased to read that you are living life to the fullest. I am now trying to do the same. I enjoyed reading about your listening to the rain, as I do the same!
Joni, Eileen, my daughter understands that her mommy is ill, but does not know the seriousness of the illness. I have kept it from her that there is no current cure. I believe my daughter is still young to know the entire truth. Any advice you can give me on how to ease into the topic of mortality. She understands the concept of death, but does not know that her mommy has an illness that will eventually take her life. Also, any advice can be given on what age we should discuss this issue. My daughter has asked me outright if I was dying when i was doing my treatment one evening. I responded "not today, probably not tomorrow, and probably not next week". How do I continue responding to her as she continues to ask questions.
Keep on fighting the fight.
Ana
 
S

StillFighting

New member
Hi Joni and Eileen,
I am back from the fundraiser and doing my treatments. I thought I would check in.
The event was sensational. It was my coming out speech. I have kept it a secret for 7 years. Not many knew. The elephant was in the room as I spoke. There were lots of emotions this evening. Researchers were present and got to hear first hand as to what it is living with this disease. I am waiting to hear from the Association as to how successful we were in terms of fundraising.
Eileen, I recall when we wrote seven years ago, your were awaiting the arrival of your grandson. It is so nice to hear that he is now 6. Time has gone by too quickly. My daughter is now 8. She is absolutely amazing. I am so proud of her. I am also pleased to read that you are living life to the fullest. I am now trying to do the same. I enjoyed reading about your listening to the rain, as I do the same!
Joni, Eileen, my daughter understands that her mommy is ill, but does not know the seriousness of the illness. I have kept it from her that there is no current cure. I believe my daughter is still young to know the entire truth. Any advice you can give me on how to ease into the topic of mortality. She understands the concept of death, but does not know that her mommy has an illness that will eventually take her life. Also, any advice can be given on what age we should discuss this issue. My daughter has asked me outright if I was dying when i was doing my treatment one evening. I responded "not today, probably not tomorrow, and probably not next week". How do I continue responding to her as she continues to ask questions.
Keep on fighting the fight.
Ana
 
S

StillFighting

New member
Hi Joni and Eileen,
<br />I am back from the fundraiser and doing my treatments. I thought I would check in.
<br />The event was sensational. It was my coming out speech. I have kept it a secret for 7 years. Not many knew. The elephant was in the room as I spoke. There were lots of emotions this evening. Researchers were present and got to hear first hand as to what it is living with this disease. I am waiting to hear from the Association as to how successful we were in terms of fundraising.
<br />Eileen, I recall when we wrote seven years ago, your were awaiting the arrival of your grandson. It is so nice to hear that he is now 6. Time has gone by too quickly. My daughter is now 8. She is absolutely amazing. I am so proud of her. I am also pleased to read that you are living life to the fullest. I am now trying to do the same. I enjoyed reading about your listening to the rain, as I do the same!
<br />Joni, Eileen, my daughter understands that her mommy is ill, but does not know the seriousness of the illness. I have kept it from her that there is no current cure. I believe my daughter is still young to know the entire truth. Any advice you can give me on how to ease into the topic of mortality. She understands the concept of death, but does not know that her mommy has an illness that will eventually take her life. Also, any advice can be given on what age we should discuss this issue. My daughter has asked me outright if I was dying when i was doing my treatment one evening. I responded "not today, probably not tomorrow, and probably not next week". How do I continue responding to her as she continues to ask questions.
<br />Keep on fighting the fight.
<br />Ana
<br />
 
K

kiwilady

Member
Well done Ana, you were a brave girl, it takes alot of courage to stand up and openly discuss what you have been secretly shielding over the years. I love your use of the English idiom 'the elephant was in the room'!, so apt for what can be an obvious truth.

Regarding the topic of mortality, I would love you to address this to the open forum as I feel there maybe other Mums out there sharing your experience.

Children do have a naturally enquiring mind, I feel you did well with your response, she may not broach the subject again for a while. I believe children need certain protection from the raw truth, their little minds should have the freedom to enjoy life while they can.

I know if my struggles were end-stage I would have no option, I would need to be gentle, loving and open all the way. I would want my loved ones to have the understanding and the knowledge that I would always be in their hearts.

My son was too young to remember my brother's death, however my sister passed when he was 16, he was more aware then of the fragility of our CF lives.

Ana, I'm travelling to Christchirch tomorrow [returning next Thursday] for an long over-due Cf Clinic app. I look forward to possibly reading a new thread. I feel I haven't answered your questions as thoroughly as I would like.

Take good care now
Cheers
Eileen.
 
K

kiwilady

Member
Well done Ana, you were a brave girl, it takes alot of courage to stand up and openly discuss what you have been secretly shielding over the years. I love your use of the English idiom 'the elephant was in the room'!, so apt for what can be an obvious truth.

Regarding the topic of mortality, I would love you to address this to the open forum as I feel there maybe other Mums out there sharing your experience.

Children do have a naturally enquiring mind, I feel you did well with your response, she may not broach the subject again for a while. I believe children need certain protection from the raw truth, their little minds should have the freedom to enjoy life while they can.

I know if my struggles were end-stage I would have no option, I would need to be gentle, loving and open all the way. I would want my loved ones to have the understanding and the knowledge that I would always be in their hearts.

My son was too young to remember my brother's death, however my sister passed when he was 16, he was more aware then of the fragility of our CF lives.

Ana, I'm travelling to Christchirch tomorrow [returning next Thursday] for an long over-due Cf Clinic app. I look forward to possibly reading a new thread. I feel I haven't answered your questions as thoroughly as I would like.

Take good care now
Cheers
Eileen.
 
K

kiwilady

Member
Well done Ana, you were a brave girl, it takes alot of courage to stand up and openly discuss what you have been secretly shielding over the years. I love your use of the English idiom 'the elephant was in the room'!, so apt for what can be an obvious truth.
<br />
<br />Regarding the topic of mortality, I would love you to address this to the open forum as I feel there maybe other Mums out there sharing your experience.
<br />
<br />Children do have a naturally enquiring mind, I feel you did well with your response, she may not broach the subject again for a while. I believe children need certain protection from the raw truth, their little minds should have the freedom to enjoy life while they can.
<br />
<br /> I know if my struggles were end-stage I would have no option, I would need to be gentle, loving and open all the way. I would want my loved ones to have the understanding and the knowledge that I would always be in their hearts.
<br />
<br />My son was too young to remember my brother's death, however my sister passed when he was 16, he was more aware then of the fragility of our CF lives.
<br />
<br /> Ana, I'm travelling to Christchirch tomorrow [returning next Thursday] for an long over-due Cf Clinic app. I look forward to possibly reading a new thread. I feel I haven't answered your questions as thoroughly as I would like.
<br />
<br />Take good care now
<br />Cheers
<br />Eileen.
<br />
 
S

StillFighting

New member
Eileen,

Have a safe trip! Best of results with the appointment! Speak with you next week.

I do not know if you have ever seen the movie PS I Love you. Essentially, the character`s husband is ill and while he is alive writes these inspiring messages for her to read when he is gone. I am thinking of doing the same for my daughter, but have not yet had the courage to go ahead as planned.

Will be waiting to hear from you.

Ana
 
S

StillFighting

New member
Eileen,

Have a safe trip! Best of results with the appointment! Speak with you next week.

I do not know if you have ever seen the movie PS I Love you. Essentially, the character`s husband is ill and while he is alive writes these inspiring messages for her to read when he is gone. I am thinking of doing the same for my daughter, but have not yet had the courage to go ahead as planned.

Will be waiting to hear from you.

Ana
 
S

StillFighting

New member
Eileen,
<br />
<br />Have a safe trip! Best of results with the appointment! Speak with you next week.
<br />
<br />I do not know if you have ever seen the movie PS I Love you. Essentially, the character`s husband is ill and while he is alive writes these inspiring messages for her to read when he is gone. I am thinking of doing the same for my daughter, but have not yet had the courage to go ahead as planned.
<br />
<br />Will be waiting to hear from you.
<br />
<br />Ana
 
B

beleache

New member
Good Morning Eileen & Ana & anyone else reading lol ...  
Ana, I give you so much credit for speaking in public !!  It is something I wish I could do but know I wont..  Good for you!
As far aa your daughter goes,  I think answer her questions as she poses them to you (kinda like when they start asking about the birds & the bees, go as far as you have to to answer that question)  I think writing something for your daughter to read later in life is a wonderful idea & have been putting it off for a long time mysel.
I also want to do a 5 wish list & instructions about my service etc.  I prob told my sons to much when they were little, having been dxd @ 44 I thought well with the statistics I will prob be dead soon..
 My youngest was 3 at the time he is now 18 !!  So I advise ppl not to jump the gun like me lol ..
 Eileen ,   I hope you appts go well & am looking forward to your responses on this matter as well..
 Take care & God Bless  <img src="i/expressions/heart.gif" border="0">  joni
 
B

beleache

New member
Good Morning Eileen & Ana & anyone else reading lol ...
Ana, I give you so much credit for speaking in public !! It is something I wish I could do but know I wont.. Good for you!
As far aa your daughter goes, I think answer her questions as she poses them to you (kinda like when they start asking about the birds & the bees, go as far as you have to to answer that question) I think writing something for your daughter to read later in life is a wonderful idea & have been putting it off for a long time mysel.
I also want to do a 5 wish list & instructions about my service etc. I prob told my sons to much when they were little, having been dxd @ 44 I thought well with the statistics I will prob be dead soon..
My youngest was 3 at the time he is now 18 !! So I advise ppl not to jump the gun like me lol ..
Eileen , I hope you appts go well & am looking forward to your responses on this matter as well..
Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
<p>Good Morning Eileen & Ana & anyone else reading lol ...
<p>Ana, I give you so much credit for speaking in public !! It is something I wish I could do but know I wont.. Good for you!
<p>As far aa your daughter goes, I think answer her questions as she poses them to you (kinda like when they start asking about the birds & the bees, go as far as you have to to answer that question) I think writing something for your daughter to read later in life is a wonderful idea & have been putting it off for a long time mysel.
<p>I also want to do a 5 wish list & instructions about my service etc. I prob told my sons to much when they were little, having been dxd @ 44 I thought well with the statistics I will prob be dead soon..
<p>My youngest was 3 at the time he is now 18 !! So I advise ppl not to jump the gun like me lol ..
<p>Eileen , I hope you appts go well & am looking forward to your responses on this matter as well..
<p>Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
S

StillFighting

New member
Joni,

I would imagine that knowing as a child would have caused anxiety for your son as he was growing up. I am in fact doing as you suggested, as a need to know basis.

I am glad to see that others have the same feelings as myself. I know I should start those letters but I just can't seem to bring it to fruition.

I spoke about this in my presentation at the fundraiser. I must admit, that evening was very difficult for me. I had my closest friends supporting me that evening. When my presentation was over, I feel into their arms crying. They recioprocated. It was a very emotional evening.

I am a firm believer that everyone has the courage to speak about it in public, only when they are finally ready. After 7 years, I have finally made it to that point. I am now the spokesperson for CF for my local Association. I will continue to make presentations in an effort to raise funds. My next public appearance is in June.

Take care,

Ana
 
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