Letters to the Today Show

[MaksNana]

We become aware of people and their lives through others....<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br /> Just because she is not a MEMBER on this site,does that mean she shouldn't be noticed or loved or prayed for ?
<br />Is this what this site is about? Is this now what awareness of CF is about???? How sad.. Do you HEAR WHAT YOU ARE SAYING? This is to those only that know who you are.<img src="i/expressions/face-icon-small-shocked.gif" border="0">
<br />
<br />I do think she has been a little bit busy!And on the one month day of Conner's death, she was fundraising for Cystic Fibrosis, for our loved ones!<img src="i/expressions/light.gif" border="0">
<br />
<br />Tonya , harriett, I know you know her story, and like I said , if you listen to her, she is crying out for HELP, PEACE, HEALING,AND MOST OF ALL "NOT TO BE LEFT ALONE".
<br />
<br />Tom, I am surprized, most of her interactions were about His Cystic Fibrosis, he was also born with a mild case of prune belly syndrome. I don't know why you would so say so bluntly, that 'most people on this site don't know Conner'? Conner's story didn't have to take 7 yrs to be well known Tom, it only took less than a year for them to be known ALL OVER THE GLOBE !<img src="i/expressions/face-icon-small-shocked.gif" border="0">
<br />
<br />He had to do every treatment possible for CF
<br />It's like you are saying that anyone known with any other
<br />conditions along with CF, they should be overlooked ?It
<br /> shouldn't be about CF? I'm not sure what you are trying to say.I'm just surprized you took one sentence out of something I wrote, and take a look at the ones that couldn't wait to jump on here with their words of knowledge..Should I be surprized ?
<br />
<br />
<br /> There's not 2 people with CF that are the same. Should he be overlooked because he had prune belly also?
<br />
<br />Stacy, I won't even respond to anything you have to say, and you know why.
<br />
<br /> If you dont' know her Sarah, this is someone who needs all of OUR SUPPORT. She might not even know about this site. But, someday she might, and it would be very sad for her to think because she was on facebook and blogged, that they should be overlooked because she didn't sign in to CF.Com, or because her child had prune belly,then
<br />his suffering with CF didn't mean anything.
<br />
<br /> I totally agree with Jenny,, I will fight this disease until I die, and will never SIT IN JUDGEMENT
<br /> bcause they havn't signed on to this site,and have 2illness's.<img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br /> ESPECIALLY when what Sarah has gone through , and is still fighting for CYSTIC FIBROSIS!<img src="i/expressions/rose.gif" border="0">
<br />
<br /> Let's get back on the oringinal post, which was about sending a LETTER,for those who want to.<img src="i/expressions/wine.gif" border="0">
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[Ratatosk]

Karla, I believe the main concern of the above posters is whether the family is on board with this. Not whether she was a member here and if we should support them. But in the midst of their grief is this something they want?

 

[Ratatosk]

Karla, I believe the main concern of the above posters is whether the family is on board with this. Not whether she was a member here and if we should support them. But in the midst of their grief is this something they want?

 

[Ratatosk]

Karla, I believe the main concern of the above posters is whether the family is on board with this. Not whether she was a member here and if we should support them. But in the midst of their grief is this something they want?

 

[JORDYSMOM]

None of us are saying that we don't want to help Sarah because she is not a member here. We are saying that we don't want to do something that concerns Sarah and her family without her permission.

Stacey

 

[JORDYSMOM]

None of us are saying that we don't want to help Sarah because she is not a member here. We are saying that we don't want to do something that concerns Sarah and her family without her permission.

Stacey

 

[JORDYSMOM]

None of us are saying that we don't want to help Sarah because she is not a member here. We are saying that we don't want to do something that concerns Sarah and her family without her permission.
<br />
<br />Stacey

 

[just1more]

I think those that know me are comfortable that my intentions were to never imply anything negative about the Jones family or to state that membership her or anywhere matters.

That said, I would ask everyone involved to take a deep breath and focus on what is best for the Jones family.

 

[just1more]

I think those that know me are comfortable that my intentions were to never imply anything negative about the Jones family or to state that membership her or anywhere matters.

That said, I would ask everyone involved to take a deep breath and focus on what is best for the Jones family.

 

[just1more]

I think those that know me are comfortable that my intentions were to never imply anything negative about the Jones family or to state that membership her or anywhere matters.
<br />
<br />That said, I would ask everyone involved to take a deep breath and focus on what is best for the Jones family.

 

[TonyaH]

Karla,
I had to step away from the computer this afternoon after reading your response. I really did not want to reply in a way that would offend you or confuse you any more.

If I am understanding you correctly, you think people here don't take Sarah's story seriously, or feel her family is deserving of our support because she is not a registered member here.

That could not be further from the truth. Everyone here who has heard Conner's story has been touched by him and his family. You told me to read Sarah's blog. I have read Sarah's blog thoroughly and have been following it for a long time. I spent this past week in the hospital with my son thinking of Sarah, and realizing that we don't have it so bad..just a tune up. Nothing compared to what their family has endured. So yes, Sarah recieves my prayers and support.

But my point in Sarah's support system is that she is surrounded by those she needs most right now. This is a very personal time for her and her family. Her blog is her outlet. Her CF activism is her therapy. I commend her for both. But I think there is also a time for privacy, a time for grieving,,,a time for healing. If you want to send letters to share Sarah's story, that is your choice. But please...please do not down other members here for trying to respect her right to privacy right now. While she has shared her story so openly, we cannot lose sight that she still needs her privacy.

I can't even imagine the pain Sarah is feeling right now. But all moms here fear that pain, and for that reason, Sarah has our utmost respect and support. I hope you can understand where we are coming from.

 

[TonyaH]

Karla,
I had to step away from the computer this afternoon after reading your response. I really did not want to reply in a way that would offend you or confuse you any more.

If I am understanding you correctly, you think people here don't take Sarah's story seriously, or feel her family is deserving of our support because she is not a registered member here.

That could not be further from the truth. Everyone here who has heard Conner's story has been touched by him and his family. You told me to read Sarah's blog. I have read Sarah's blog thoroughly and have been following it for a long time. I spent this past week in the hospital with my son thinking of Sarah, and realizing that we don't have it so bad..just a tune up. Nothing compared to what their family has endured. So yes, Sarah recieves my prayers and support.

But my point in Sarah's support system is that she is surrounded by those she needs most right now. This is a very personal time for her and her family. Her blog is her outlet. Her CF activism is her therapy. I commend her for both. But I think there is also a time for privacy, a time for grieving,,,a time for healing. If you want to send letters to share Sarah's story, that is your choice. But please...please do not down other members here for trying to respect her right to privacy right now. While she has shared her story so openly, we cannot lose sight that she still needs her privacy.

I can't even imagine the pain Sarah is feeling right now. But all moms here fear that pain, and for that reason, Sarah has our utmost respect and support. I hope you can understand where we are coming from.

 

[TonyaH]

Karla,
<br />I had to step away from the computer this afternoon after reading your response. I really did not want to reply in a way that would offend you or confuse you any more.
<br />
<br />If I am understanding you correctly, you think people here don't take Sarah's story seriously, or feel her family is deserving of our support because she is not a registered member here.
<br />
<br />That could not be further from the truth. Everyone here who has heard Conner's story has been touched by him and his family. You told me to read Sarah's blog. I have read Sarah's blog thoroughly and have been following it for a long time. I spent this past week in the hospital with my son thinking of Sarah, and realizing that we don't have it so bad..just a tune up. Nothing compared to what their family has endured. So yes, Sarah recieves my prayers and support.
<br />
<br />But my point in Sarah's support system is that she is surrounded by those she needs most right now. This is a very personal time for her and her family. Her blog is her outlet. Her CF activism is her therapy. I commend her for both. But I think there is also a time for privacy, a time for grieving,,,a time for healing. If you want to send letters to share Sarah's story, that is your choice. But please...please do not down other members here for trying to respect her right to privacy right now. While she has shared her story so openly, we cannot lose sight that she still needs her privacy.
<br />
<br />I can't even imagine the pain Sarah is feeling right now. But all moms here fear that pain, and for that reason, Sarah has our utmost respect and support. I hope you can understand where we are coming from.

 

[TonyaH]

And Jenny,
Please let me apologize for taking this further with Karla. I know you started this thread to help. Your letter is beautiful. I respect this letter as your way of showing Sarah your support, and appreciate the fact that you have not faulted anyone else for their choice not to write a letter just quite yet.

 

[TonyaH]

And Jenny,
Please let me apologize for taking this further with Karla. I know you started this thread to help. Your letter is beautiful. I respect this letter as your way of showing Sarah your support, and appreciate the fact that you have not faulted anyone else for their choice not to write a letter just quite yet.

 

[TonyaH]

And Jenny,
<br />Please let me apologize for taking this further with Karla. I know you started this thread to help. Your letter is beautiful. I respect this letter as your way of showing Sarah your support, and appreciate the fact that you have not faulted anyone else for their choice not to write a letter just quite yet.
<br />

 

[MaksNana]

Sorry Tonya, There was no intention for you to think I downed people for their choice. I replyed back to those I felt posted a responce directly to me.

Something that was meant to be so lovly and graceful has been turned into something so negative and that is very hurtfull.I must point one thing that is vital, there are several blogs , where Sarah is begging "not to be left alone", she wanted and wants us to respond to her, those are her words.

I do appreciate you making your statement clearer. I'm just pleading , for everyone to not make this a negative thread.

Let's be honest , and back to the oringinal post. I'm really not that interesting, so no need for people to keep applying things with my name.

This is about Sarah and more awareness of CF, and yes, she wants to spread awareness !<img src="i/expressions/face-icon-small-smile.gif" border="0">

Best to all, karla<img src="i/expressions/rose.gif" border="0">

 

[MaksNana]

Sorry Tonya, There was no intention for you to think I downed people for their choice. I replyed back to those I felt posted a responce directly to me.

Something that was meant to be so lovly and graceful has been turned into something so negative and that is very hurtfull.I must point one thing that is vital, there are several blogs , where Sarah is begging "not to be left alone", she wanted and wants us to respond to her, those are her words.

I do appreciate you making your statement clearer. I'm just pleading , for everyone to not make this a negative thread.

Let's be honest , and back to the oringinal post. I'm really not that interesting, so no need for people to keep applying things with my name.

This is about Sarah and more awareness of CF, and yes, she wants to spread awareness !<img src="i/expressions/face-icon-small-smile.gif" border="0">

Best to all, karla<img src="i/expressions/rose.gif" border="0">

 

[MaksNana]

Sorry Tonya, There was no intention for you to think I downed people for their choice. I replyed back to those I felt posted a responce directly to me.
<br />
<br />Something that was meant to be so lovly and graceful has been turned into something so negative and that is very hurtfull.I must point one thing that is vital, there are several blogs , where Sarah is begging "not to be left alone", she wanted and wants us to respond to her, those are her words.
<br />
<br />I do appreciate you making your statement clearer. I'm just pleading , for everyone to not make this a negative thread.
<br />
<br />Let's be honest , and back to the oringinal post. I'm really not that interesting, so no need for people to keep applying things with my name.
<br />
<br />This is about Sarah and more awareness of CF, and yes, she wants to spread awareness !<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Best to all, karla<img src="i/expressions/rose.gif" border="0">

 

[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></div>