i didnt mean to.......................

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Seana30

New member
To all that got upset over my post......I am sorry. I was trying to show the other side of the story, was not trying to upset anyone!

To Luke and Mockingbird.....I do not understand how I was "out of line". I was not rude to anyone, never said a negative think about anyone, and did not tell anyone that they were "wrong". I do have to make one comment to you though............YOU HAVE NO IDEA WHAT IT IS LIKE TO KNOW THAT YOU MIGHT OUT LIVE YOUR CHILD, AND I TRUELY HOPE THAT YOU NEVER HAVE TO EXPERIENCE WHAT THAT FEELS LIKE!

To all of the moms and dads that responded to my post, I hope that will can start a new post so that we can share our feeling. Maybe it would be best if we went the the "family section" to do this.

I have to go get the kids from school right now, but will try to start a new post this evening. Would love to get to know everyone!

Seana

mom to Lauren, 14, no CF- Courtney, 12, with CF- Cameron, 10, no CF
 
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ClashPunk82

New member
You keep telling Mockingbird and Luke they will never understand until they have children but did you ever stop to think maybe they are never going to be able to have chidren and that saying that over and over is actually very hurtful. Maybe they would love to have kids and know they they really can't. Sometimes you have to think before saying things.
 
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anonymous

New member
Nicole,

I did think about that, and do realize that. It is something that I will never understand because I am able to have children. But if I have to stop and think about their feeling, and how hurtfully I am being.......THEY SHOULD DO THE SAME! This is the last I will post about this because I will not invade my life with negative people!!

Seana
 
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SeasonsOfLove

Guest
Initially I must say I was surprised by the reaction of many of the people with CF to the original post! (Part of the problem is the way the 1st post was worded).

After thinking about it some more, I realized the intense reaction illustrates something that most CF parents (including me) don't always realize or want to admit and something their children with CF feel hesitant to tell them: people with CF usually feel isolated even from their parents (since the parents don't have CF) and very much resent needing extra care. Although we know better than others what they go through, we still don't experience it the way they do!

Have a good night everyone,
 
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anonymous

New member
I am an adult pwcf. What make you think that you will out live your children. Do you have any idea how rude and hurtful that is? I was brought up with great parents and a great family that I love and respect. My loving father died at 87 years old. He did not out live me! What makes you think you are so special. Sometimes a positive attitude is helpful to your children. I am so sorry that your children will not ever understand what a truly helpful and positive parent can be like.
 
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Seana30

New member
MY GOODNESS SOME OF YOU ARE SUCH NEGATIVE PEOPLE. I EDITED MY MESSAGE TO SAY MIGHT OUTLIVE. YOU KNOW NOTHING ABOUT ME, HAVE MADE NO EFFORT TO UNDERSTAND WHAT I WAS TRYING TO SAY IN MY ORIGINAL POST, MADE NO EFFORT TO FIND OUT ANYTHING ABOUT ME, BUT YOU ALL JUMP REALLY FAST TO SAY WHAT A HORRIBLE, NEGATIVE PERSON I AM.

ONE THING THAT I HAVE LEARNED IS THAT WHEN SOMEONE SAYS SOMETHING NEGATIVE ABOUT YOU, IT HAS NOTHING TO DO WITH YOU. THEY SAY THESE THINGS BECAUSE THEY ARE UNHAPPY WITH THEMSELVES.

I HAVE A WONDERFUL FAMILY WITH 3 CHILDREN THAT KNOW NOTHING BUT LOVE AND HAPPINESS. MY CHILDREN ARE WELL ROUNDED, MAKE WONDERFUL GRADES, AND ARE GOOD KIDS INVOLVED IN MANY THINGS.

IF YOU GO BACK TO MY ORIGINAL POST YOU WILL SEE THAT I SAID NOTHING NEGATIVE. I SPOKE ABOUT WHAT IT WAS LIKE TO FIND OUT YOUR CHILD IS ILL. THAT'S IT. THAT'S ALL THAT POST IS ABOUT. I THOUGHT THAT GROUPS LIKE THIS WERE ALL ABOUT POSTING FEELINGS. IDEAS, ETC. WHY AM I NOT ALLOWED TO DO THIS WITHOUT YOU GUYS BASHING ME!?!?!?!?!?!?!?!?!? I DID NOT SPEAK BADLY OF ANYONE, OR SUGGEST THAT ANYONE SHOULD "UNDERSTAND" HOW I WAS FEELING AT THAT TIME. WHY IS LUKE AND MOCKINGBIRD ALLOWED TO DO THIS AND NOT ME?!?!?!?!?!?!?!?!?!?

SEANA
 
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anonymous

New member
I will tell you what makes most parents of children with cf worry about outliving their children: THE STATISTICS! (duh)

Also, as for the comment about having children, lots of people can't have (bio) children. My own parents could not. That did not stop them from having (adopting) me.

Seems like some people are really digging here.
ANONYMOUS
 
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CFHockeyMom

New member
I agree, I think the original post could have been worded a bit better but that's the hazzard of the written word; sometimes your intent is misread or misunderstood. If Seana is looking for some support then this is the place but you need to ask for support not accuse the CFers of not appreciating their parents, even if that wasn't the intent.

I was certainly one of the people that took offense to the original post.

This is the place to air your feelings and we don't always agree. Plenty of people have disagreed with me. You have to accept that when you let your feelings/opinions be known whether here or anywhere they are subject to criticism.

I don't think everyone that responded was being negative. In fact, I think many people thought Seana was the one being negative. You could also say that Seana's assumption that her child will die before her is negative.

Although having a child with a serious illness does increase your chances that your child will die before you, it is no guarantee. You can focus on that or you can focus on the life yet to live.

I dislike it when people throw their bad circumstances in my face. It's not a competition to see who has it worse because trust me when I say that someone always has it worse than you. I guess I'm more of a "suck it up and get on with it" type of person.

That said, Seana, my son was diagnosed shortly after birth so it's always been a part of his life. It was hard on all of us when he was diagnosed but we got through it and adapted. We've also have a good network of family support which it sounds like you may not have. I don't sit around feeling sorry for myself because I don't really want to convey that attitude to my CFer. I'm trying to teach my children that life isn't fair and you have to "play the cards you're dealt". I don't wonder what our lives would be like without it because 1) there's no point and 2) as much as I detest CF, it makes Sean who he is and I love the Sean I have. Don't get me wrong, I have my bad days to; one thing that does occasionally make me sad, however, is the prospect of my older son one day being all alone.

I do believe that there is a reason beyond the science that Sean has CF. Again, this is about being positive... he's taught me more about myself and life than I ever would have learned if he didn't had CF. He showed me how strong I can be and how good a mother I really am.
 
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Seana30

New member
I never said that I sit around and think about it all of the time. My post was about when we found out Courtney have CF. CF is a daily part of our life, but it does not control our family. I NEVER SAID IT DID. I do not understand how my post was so negative. I was speaking about the days right after diagnoses. I am suppose to say that our family was happy about her having CF......NO....it was a very sad time in our life!! I had my time of grief and adjustment, AND AS THE POST STATES.....then got on with life.

Seana
 
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roblake29

New member
Seana, I have to say, I thought your original message was very heartfelt and genuine. As an adult with CF I was touched by your words and pictured my own mother facing similar challenges that you went through. Thank you for posting, and please don't get discouraged by the negativity that is sometimes expressed on these boards. I have posted messages about negativity before but it generally goes in circles. I like to think this forum should be a place to encourage and learn; others think it should be a place to challenge and vent. A healthy compromise would be both, and it is engaging conversations such as these that highlight this dichotomy so clearly!
As for the original thread about parents and children with CF. It sounds to me as though we are comparing apples with oranges. Neither knows 'what its like' etc. So lets stop here. This doesnt have to be the final word, but I think we have said enough on this topic.

And I have to challenge what Jared (Mockingbird) said about Seana being newew to this sight than Luke, and suggesting that messages posted by people who have been here longer should be accepted more/first, compared to those who are new. Not too sure about that. Seana joined Dec 2003, Luke joined Jan 2005. She might post less often but thas not what you wrote, and that doesnt mean her opinion is any less valid.

Sounds like a bit of CF forum snobbery! I don't buy it, sorry.

Rob 24 wcf
 
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anonymous

New member
Seana,

I am completely on your side honey<img src="i/expressions/face-icon-small-smile.gif" border="0">)) I cannot believe the way these people are attacking you<img src="i/expressions/face-icon-small-sad.gif" border="0">( Your original post was exactly how most of us parents felt when our children were first diagnosed. For some reason CFers here are so pissed that we parents of CFers could have the nerve to express our fears / challenges of parenting a child with CF. Just try to remember that WE know how our lives have changed since the diagnosis and HELL YAH!! it was difficult on us and our family. You are being kind and honest and they are screwing with your words...Let them loath in self pity. Brush it off...keep strong and pray that our children do not turn out like them...full of negativity and hate.

I support you<img src="i/expressions/face-icon-small-smile.gif" border="0"> Do NOT let them chase you away...you have the right to be here and your feelings ARE justified. It is HELL on earth when you are told you have a child with a terminal illness. I know that..you know that....do not take it personally. THEY DO NOT GET IT...THEY HAVE NEVER HAD TO FOCUS ON ANYONE OTHER THAN THEMSELVES....OBVIOUSLY.

Take care <img src="i/expressions/face-icon-small-smile.gif" border="0">))
 
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anonymous

New member
i am a parent of a cfr. im not going to even try to speak how i feel on here i just wanted to say that out of all the cf support groups i go to on a daily basis this one is the most negitive of them all. its suppose to be a support group. people dont post here to get bashed!!!! if you dont have anything nice to say then just dont say anything! were all in this together remember!!!!!!!!!!!!!!
 
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Seana30

New member
Again....to the last 2 people that posted.....sorry, you did not leave names.......thank you for your kind words.

Seana
 
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anonymous

New member
No problem Seana I have your back!<img src="i/expressions/face-icon-small-smile.gif" border="0"> There should really be a PARENT section on this site so we can talk to each other openly and not have to worry about getting bashed. As parents we have alot of questions/concerns /and feelings and we should have a safe open forum to support each other.

What do you think...we should ask the administrator.

I am in Canada

Where are you Seana...
 
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anonymous

New member
I agree with the last posts. We are all here to support one another. Everyone is not going to have the same opinions...that is called real life. I agree with Seana on some issues, but also with Luke on other issues. There is no need to bash each other, or to make assumptions about anothers home/family life. We are all living in a world where CF is a reality, whether we are the ones with the disease, or if it is our children. I feel we should abandon the whole drama, and go on with productive posts.
Cindy - Mom of 22 mo Daughter w/CF
 
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