Letters to the Today Show

[just1more]

Everyone, I have been in contact with Sarah (Connor's mom). Here is her response:

<div class="FTQUOTE"><begin quote>
you know i've heard the same thing. while we had no part in planning or starting this movement, if it's going to raise awareness then i'm all for it. honoring conner and putting cf in the face of the us!!! so i guess i'll just go with the flow...
</end quote>

 

[just1more]

Everyone, I have been in contact with Sarah (Connor's mom). Here is her response:
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />you know i've heard the same thing. while we had no part in planning or starting this movement, if it's going to raise awareness then i'm all for it. honoring conner and putting cf in the face of the us!!! so i guess i'll just go with the flow...
<br /></end quote>

 

[jennylivingston]

I have been away from this website for several days, and was completely shocked to return to ALL OF THIS. Wow!

I never intended to stir up these emotions in anyone. I simply did something I was asked to do, and thought I'd spread the word so anyone here could join in this cause if they felt inclined to do so.

I cannot speak for Sarah. I do not know her personally. I follow her blog, we are FB friends and we share several mutual friends (one of whom made the call for these letters). But does that mean I know her personal wishes? No.

When I heard people were writing to the show, I simply couldn't ignore that. I do understand that the family needs time to process this tragedy and most importantly, to HEAL. My family also lost someone--my oldest sister--to CF when she was 14. I understand the anguish, the difficult emotions, the despair and the turmoil that emcompass a family when something like this happens. Our family was featured in a couple news stories before my sister passed and the response we recieved was incredible. We were grateful to be a part of something to spread awareness. I can't say though, how my parents would have felt if this was done AFTER Shannan died. It's very true that it may have been just too painful, especially when the wound was so fresh.

I have known people who have contacted the Today Show (unrelated to the Jones' story) and the response from the show is always the same--a generic email response thanking them for their letter/email/call, whatever. I don't know how many others have written concerning little Conner, and I honestly don't know that the show will do ANYTHING to feature his story. I hope that if they do respond, they will do so in a way that is amicable and only after the family has had sufficient time to grieve their loss.

All of this, I suppose, is to say that I wrote a letter because I was encouraged to do so, and it simply felt right--FOR ME. I think all we can ask of someone is to do whatever feels right by them. I also think it's tragic that anyone would be judged for their decision, whether or not they have chosen to participate in this matter. I'm certainly not here to pressure or judge anyone, and I sincerely apologize if what I have posted concerning this matter has offended or upset anyone.

Peaceful things to everyone here, as well as the Jones family.

 

[jennylivingston]

I have been away from this website for several days, and was completely shocked to return to ALL OF THIS. Wow!

I never intended to stir up these emotions in anyone. I simply did something I was asked to do, and thought I'd spread the word so anyone here could join in this cause if they felt inclined to do so.

I cannot speak for Sarah. I do not know her personally. I follow her blog, we are FB friends and we share several mutual friends (one of whom made the call for these letters). But does that mean I know her personal wishes? No.

When I heard people were writing to the show, I simply couldn't ignore that. I do understand that the family needs time to process this tragedy and most importantly, to HEAL. My family also lost someone--my oldest sister--to CF when she was 14. I understand the anguish, the difficult emotions, the despair and the turmoil that emcompass a family when something like this happens. Our family was featured in a couple news stories before my sister passed and the response we recieved was incredible. We were grateful to be a part of something to spread awareness. I can't say though, how my parents would have felt if this was done AFTER Shannan died. It's very true that it may have been just too painful, especially when the wound was so fresh.

I have known people who have contacted the Today Show (unrelated to the Jones' story) and the response from the show is always the same--a generic email response thanking them for their letter/email/call, whatever. I don't know how many others have written concerning little Conner, and I honestly don't know that the show will do ANYTHING to feature his story. I hope that if they do respond, they will do so in a way that is amicable and only after the family has had sufficient time to grieve their loss.

All of this, I suppose, is to say that I wrote a letter because I was encouraged to do so, and it simply felt right--FOR ME. I think all we can ask of someone is to do whatever feels right by them. I also think it's tragic that anyone would be judged for their decision, whether or not they have chosen to participate in this matter. I'm certainly not here to pressure or judge anyone, and I sincerely apologize if what I have posted concerning this matter has offended or upset anyone.

Peaceful things to everyone here, as well as the Jones family.

 

[jennylivingston]

I have been away from this website for several days, and was completely shocked to return to ALL OF THIS. Wow!
<br />
<br />I never intended to stir up these emotions in anyone. I simply did something I was asked to do, and thought I'd spread the word so anyone here could join in this cause if they felt inclined to do so.
<br />
<br />I cannot speak for Sarah. I do not know her personally. I follow her blog, we are FB friends and we share several mutual friends (one of whom made the call for these letters). But does that mean I know her personal wishes? No.
<br />
<br />When I heard people were writing to the show, I simply couldn't ignore that. I do understand that the family needs time to process this tragedy and most importantly, to HEAL. My family also lost someone--my oldest sister--to CF when she was 14. I understand the anguish, the difficult emotions, the despair and the turmoil that emcompass a family when something like this happens. Our family was featured in a couple news stories before my sister passed and the response we recieved was incredible. We were grateful to be a part of something to spread awareness. I can't say though, how my parents would have felt if this was done AFTER Shannan died. It's very true that it may have been just too painful, especially when the wound was so fresh.
<br />
<br />I have known people who have contacted the Today Show (unrelated to the Jones' story) and the response from the show is always the same--a generic email response thanking them for their letter/email/call, whatever. I don't know how many others have written concerning little Conner, and I honestly don't know that the show will do ANYTHING to feature his story. I hope that if they do respond, they will do so in a way that is amicable and only after the family has had sufficient time to grieve their loss.
<br />
<br />All of this, I suppose, is to say that I wrote a letter because I was encouraged to do so, and it simply felt right--FOR ME. I think all we can ask of someone is to do whatever feels right by them. I also think it's tragic that anyone would be judged for their decision, whether or not they have chosen to participate in this matter. I'm certainly not here to pressure or judge anyone, and I sincerely apologize if what I have posted concerning this matter has offended or upset anyone.
<br />
<br />Peaceful things to everyone here, as well as the Jones family.

 

[teemteem]

Hi Jeny,
Congrats for the wonderful thoughts. i write from a different perspective of being in a place where C& F are just two alphabets and 95% of people do not knpw the disaster it can spell when the two alphabets are written beside one's name as a diagnosis.
Despite my repeated cough and cold and antibiotic need in childhood and my parent's best efforts ,nobody in our small town suspected CF(They have never heard of such a disease).I came to know about Cf from a Readr's Digest article about Brain, a CFer who went ahead to become a doctor.
I have always held a special place for all the CFer and written a poem saluting the strength n spirit of them, but never in my wildest imagination, did think that i too might have a form of Cf. I have been treted for asthma and despite the CT scan showing bronchiectasis at 25 years, none of my Docs suspected it even when i was living and working in a very big hospital in a Metro city.
Only recenty my current Pulmonologistwho has practiced in UK for long) suspects a mild CF.With PA colonization, repeated infections and weight issues (though i am pancreatic sufficient), its not always very easy to deal with this disease. People do not understand why i am sick so often,why i get tired easily, n they ask when i will be fully cured!!Wish i knew the answer, not just for myself but for thousands of fightrs worldwide.
Connor's story is really unique and touched millions of hearts.
There are many more Connors in India, dying helplessly, dying with pain - no doctor to suspect CF, no CF clinic,no medications like TOBI, Pulmozyme.I am struggling to get tobramycin since it is so expensive and out insurance does not cever any home treatment.
I try to manage my Ivs at homw with port a cath.Now my Pulmo has asked for a PEG and it is raisng so many eye brows as they think i shud be able to eat sufficiently orally.
i made a youtube video on CF awareness .The link is
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>i try to talk about it as openly as possible. In India the scenerio for a chronic patient is tough, socially,financially and emotionally- No community effort, no Great Strides,no CF crafts fair...you are in a world alone , where people hardly understands your unique needs.
i am trying my best to fight the condition so that the kids can have a better chance in the coming days.
its a blessing taht i have a great doctor and my parent's support.
Lets all strive towards the day when Cf will be Cure Found for Cute Faces.
till then, keep marching

cheers
teemteem

 

[teemteem]

Hi Jeny,
Congrats for the wonderful thoughts. i write from a different perspective of being in a place where C& F are just two alphabets and 95% of people do not knpw the disaster it can spell when the two alphabets are written beside one's name as a diagnosis.
Despite my repeated cough and cold and antibiotic need in childhood and my parent's best efforts ,nobody in our small town suspected CF(They have never heard of such a disease).I came to know about Cf from a Readr's Digest article about Brain, a CFer who went ahead to become a doctor.
I have always held a special place for all the CFer and written a poem saluting the strength n spirit of them, but never in my wildest imagination, did think that i too might have a form of Cf. I have been treted for asthma and despite the CT scan showing bronchiectasis at 25 years, none of my Docs suspected it even when i was living and working in a very big hospital in a Metro city.
Only recenty my current Pulmonologistwho has practiced in UK for long) suspects a mild CF.With PA colonization, repeated infections and weight issues (though i am pancreatic sufficient), its not always very easy to deal with this disease. People do not understand why i am sick so often,why i get tired easily, n they ask when i will be fully cured!!Wish i knew the answer, not just for myself but for thousands of fightrs worldwide.
Connor's story is really unique and touched millions of hearts.
There are many more Connors in India, dying helplessly, dying with pain - no doctor to suspect CF, no CF clinic,no medications like TOBI, Pulmozyme.I am struggling to get tobramycin since it is so expensive and out insurance does not cever any home treatment.
I try to manage my Ivs at homw with port a cath.Now my Pulmo has asked for a PEG and it is raisng so many eye brows as they think i shud be able to eat sufficiently orally.
i made a youtube video on CF awareness .The link is
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a>i try to talk about it as openly as possible. In India the scenerio for a chronic patient is tough, socially,financially and emotionally- No community effort, no Great Strides,no CF crafts fair...you are in a world alone , where people hardly understands your unique needs.
i am trying my best to fight the condition so that the kids can have a better chance in the coming days.
its a blessing taht i have a great doctor and my parent's support.
Lets all strive towards the day when Cf will be Cure Found for Cute Faces.
till then, keep marching

cheers
teemteem

 

[teemteem]

Hi Jeny,
<br />Congrats for the wonderful thoughts. i write from a different perspective of being in a place where C& F are just two alphabets and 95% of people do not knpw the disaster it can spell when the two alphabets are written beside one's name as a diagnosis.
<br />Despite my repeated cough and cold and antibiotic need in childhood and my parent's best efforts ,nobody in our small town suspected CF(They have never heard of such a disease).I came to know about Cf from a Readr's Digest article about Brain, a CFer who went ahead to become a doctor.
<br />I have always held a special place for all the CFer and written a poem saluting the strength n spirit of them, but never in my wildest imagination, did think that i too might have a form of Cf. I have been treted for asthma and despite the CT scan showing bronchiectasis at 25 years, none of my Docs suspected it even when i was living and working in a very big hospital in a Metro city.
<br />Only recenty my current Pulmonologistwho has practiced in UK for long) suspects a mild CF.With PA colonization, repeated infections and weight issues (though i am pancreatic sufficient), its not always very easy to deal with this disease. People do not understand why i am sick so often,why i get tired easily, n they ask when i will be fully cured!!Wish i knew the answer, not just for myself but for thousands of fightrs worldwide.
<br />Connor's story is really unique and touched millions of hearts.
<br />There are many more Connors in India, dying helplessly, dying with pain - no doctor to suspect CF, no CF clinic,no medications like TOBI, Pulmozyme.I am struggling to get tobramycin since it is so expensive and out insurance does not cever any home treatment.
<br />I try to manage my Ivs at homw with port a cath.Now my Pulmo has asked for a PEG and it is raisng so many eye brows as they think i shud be able to eat sufficiently orally.
<br />i made a youtube video on CF awareness .The link is
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=kqV1IU5YS0I
">http://www.youtube.com/watch?v=kqV1IU5YS0I
</a><br />i try to talk about it as openly as possible. In India the scenerio for a chronic patient is tough, socially,financially and emotionally- No community effort, no Great Strides,no CF crafts fair...you are in a world alone , where people hardly understands your unique needs.
<br />i am trying my best to fight the condition so that the kids can have a better chance in the coming days.
<br />its a blessing taht i have a great doctor and my parent's support.
<br />Lets all strive towards the day when Cf will be Cure Found for Cute Faces.
<br />till then, keep marching
<br />
<br />cheers
<br />teemteem

 

[jennylivingston]

Just wanted to pass a few more words along from Sarah herself (per FB messages exchanged tonight):

"i'm aware of it absolutely...and i'm fine with it my dear...i don't feel bullied or exploited into it, nothings come of it so far but if it was i'd love to spread cf awareness...and that my dear you can pass along!"

Thank you everyone for your thoughts on this issue. After taking a few hours to think about things, I truly believe that everything said in this thread was out of concern. It's just unfortuante that things got a little carried away. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I consider myself VERY fortunate to be part of such a caring community!

 

[jennylivingston]

Just wanted to pass a few more words along from Sarah herself (per FB messages exchanged tonight):

"i'm aware of it absolutely...and i'm fine with it my dear...i don't feel bullied or exploited into it, nothings come of it so far but if it was i'd love to spread cf awareness...and that my dear you can pass along!"

Thank you everyone for your thoughts on this issue. After taking a few hours to think about things, I truly believe that everything said in this thread was out of concern. It's just unfortuante that things got a little carried away. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I consider myself VERY fortunate to be part of such a caring community!

 

[jennylivingston]

Just wanted to pass a few more words along from Sarah herself (per FB messages exchanged tonight):
<br />
<br />"i'm aware of it absolutely...and i'm fine with it my dear...i don't feel bullied or exploited into it, nothings come of it so far but if it was i'd love to spread cf awareness...and that my dear you can pass along!"
<br />
<br />Thank you everyone for your thoughts on this issue. After taking a few hours to think about things, I truly believe that everything said in this thread was out of concern. It's just unfortuante that things got a little carried away. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I consider myself VERY fortunate to be part of such a caring community!
<br />

 

[kaylasdad]

Let me start by saying my heart goes out to the Jones family.
I just sent a letter (email) to the today show.
I hope if enough people send a letter that they will help spread awareness.

 

[kaylasdad]

Let me start by saying my heart goes out to the Jones family.
I just sent a letter (email) to the today show.
I hope if enough people send a letter that they will help spread awareness.

 

[kaylasdad]

Let me start by saying my heart goes out to the Jones family.
<br />I just sent a letter (email) to the today show.
<br />I hope if enough people send a letter that they will help spread awareness.

 

[MaksNana]

Hi Sweet Jenny,
Glad to see you are back. Please do not feel bad about anything in the thread. Like I said already in the Adult section, we may vent , misunderstand, etc, but, I can say this much. No matter what is said, I believe I can speak for many , we all care and love each other.

Thank you for giving us the information about the Today's Show, and especially ,, the sweet words from Sarah.

I sent a cover letter, a long with a copy of her blog. For those that don't know about Sarah and Conner, you can visit her blog at "not so bright and shiny".

Please cont. to pray for Sarah and her family, love to all,karla<img src="i/expressions/brokenheart.gif" border="0">

 

[MaksNana]

Hi Sweet Jenny,
Glad to see you are back. Please do not feel bad about anything in the thread. Like I said already in the Adult section, we may vent , misunderstand, etc, but, I can say this much. No matter what is said, I believe I can speak for many , we all care and love each other.

Thank you for giving us the information about the Today's Show, and especially ,, the sweet words from Sarah.

I sent a cover letter, a long with a copy of her blog. For those that don't know about Sarah and Conner, you can visit her blog at "not so bright and shiny".

Please cont. to pray for Sarah and her family, love to all,karla<img src="i/expressions/brokenheart.gif" border="0">

 

[MaksNana]

Hi Sweet Jenny,
<br />Glad to see you are back. Please do not feel bad about anything in the thread. Like I said already in the Adult section, we may vent , misunderstand, etc, but, I can say this much. No matter what is said, I believe I can speak for many , we all care and love each other.
<br />
<br />Thank you for giving us the information about the Today's Show, and especially ,, the sweet words from Sarah.
<br />
<br />I sent a cover letter, a long with a copy of her blog. For those that don't know about Sarah and Conner, you can visit her blog at "not so bright and shiny".
<br />
<br />Please cont. to pray for Sarah and her family, love to all,karla<img src="i/expressions/brokenheart.gif" border="0">