luke

[anonymous]

I must respond to this Luke.

You dissapoint me in so many ways with this response. Obviously you do <blockquote>Quote<br><hr>When I read this post yesterday I was very irritated with the mother who posted this. So quite different from my normal knee jerk reaction I gave myself a cool down period. I have now read it again and can say with all certainty that this mother is probably one of the most selfish, self-involved people to ever post on this site. I realize that you help your child and you may want "credit" but that is not what a good parent does. You should take care of your child not for recognition but for the fact you have a sick child and that is your responsibility. I have made it a point in my life that when I am able to help others I should, but to never expect or want recognition. To give time, money or gifts to gain favor or popular opinion is disingenuous and negates any personal selflessness initially meant by the act. And after all...as unpopular of a statement that this may be you are half of the reason your child has CF. Now my rant is over I will say this, your child is your responsibility and he might always take you for granted. But at least that is better than being held forever accountable for neglecting his care and most likey worsening his condition. <hr></blockquote>

You have truly dissapointed me in so many ways. As a mother of a child w/cf and a health care worker I must respond to this. You have no idea what it is like to be a parent of a CFer...and believe it or not you are NOT the only one who suffers...it affects the whole family.

Let us now discuss being selfish. You obviously have never realized how many people have dedicated THEIR lives to better YOURS. All of the people who donate their money to help find a cure...all of the drug companies that work 24/7 trying to come up with better drugs to make YOUR life longer and better...all of the health care workers that take care of YOU in the hopital when you are at your lowest...Is this the end result...YOU are not thankful of all of the people who have given up their quality of life to make YOURS better. I have met MANY CFers in my lifetime and you are the best example of how a disease of the body can become a disease of the mind. You have allowed CF to sink you into a dark place where all that exists is your pain/suffering. I know that most CFers appreciate complete strangers that dedicate their lives to people like YOU...Do parents of CFers deserve a pat on the back...HELL YES<img src="i/expressions/face-icon-small-smile.gif" border="0">

I have read your many posts ... I belive you are religious....I forgive for your comments ...and so will Jesus.

 

[anonymous]

To the poster who typed this, CHILL OUT. Luke just hit a milestone b-day (30th). Plenty of "healthy" people experience a crisis of sort at milestone b-days, let alone someone who, as Luke said, doesn't know if he has 1, 5, 10, 20 or more years left. My dh's best friend was in a major depression after his 40th b-day and he's healthy, very financially successful, and has a good life. It happens. Let's face it, as parents, unless we've come close to death, we can NOT understand how that feels. IT IS different for us and to not acknowledge that difference is horribly unfair. Do we have a lot to deal with, YES. Is it difficult for us, YES. Do we occasionally need affirmation from someone other than ourselves that we're doing a good job in a difficult situation, YES. However, to expect that you should get that from an adult cfer whose health is probably worse than our young children's is unrealistic and unfair. It's especially unfair to expect it from an adult cfer who has told us that he does NOT have loving, caring parents and did not have a good childhood. Save the requests for affirmation from other parents, your cf medical team, friends and family. Do not expect it from the adult cfers on this board. They have enough on their plates without us trying to burden them with guilt over the sacrifices that their loved ones make for them. As a loved one, I don't need or want that from my child. His happiness is much more important to me than that.

Luke, since the original poster did direct this post to you, have you ever considered counseling or therapy to help you deal with the anger/frustration that you feel toward your parents? Not so much to mend that relationship but to help you move past it?
Peace,
Mel

 

[anonymous]

Obviously Luke you have alot more issues than CF.

I do not think we should allow Luke to bash parents of all CFers just because he has alot on his plate. Not good enough for me sorry. Everyday people have all sorts of problems and as an adult if you are litterally at this point of being such a hater you need professional help Cf aside. Why is it OK for him to spew hate and it is not OK for family members ( who have alot on their plate as well) to tell him he is out in right field.

I agree with the original poster.

Luke I am sure you are a good person but you have had alot of bad experiences. Remember though that maybe your parents failed you, but it is all of the other CFers parents in the world that fought against the system /challenged doctors,researchers just so they could help ALL CFers have a better quality of life. They wanted a better life for EVERYONE affected by CF. YOU included. Show some gratitude man.

 

[anonymous]

For the record, I don't think it's ok to "spew hate" and I do disagree with the harsh tone in Luke's post. Likewise, I agree, it sounds like he has "issues" BUT then, don't we all? My point is just that personally, I think before we go around bashing other people, we need to put ourselves in their positions which is somewhat possible since LUke is a regular poster with history on the board. I agree, there are MANY things for him to feel greatful for. And, I'm sure he probably does have gratitude for the researchers, the meds, etc, etc. (At least I hope he does). I guess I was just thinking how I would feel if Luke were my son 20 some odd years from now... Posting during a low point, struggling with issues regarding his mortality, and then everyone attacks him when he's already down... Didn't sit well with me. I apologize if my posts sounded as though I were trying to "attack" any parents. THat was NOT my intention.
Peace,
Mel

 

[anonymous]

okay I agree with both sides of the fence here if that is possible. Parents of CFer's have a lot on their plates. Taking care of us, the hospital stays, the worries. But CF kids have probably twice on their plates then the caregivers. We are the ones dealing with the pains. Putting up with missing out on experiences that other "normal" kids get to experience. Dealing with the fact that we might not have a future, the wedding that we always dreamed of, graduating college like all of our peers. So you have to forgive us sometimes if the parents are not shown all of the gratitude that they deserve. Every cf child is greatful for the hours that researchers put in, the time and financial obligations that our parents had to go through.
When I got my transplant my family and I had to move down to Louisiana from New Jersey. Still to this day I am told constantly that I did not appreciate my family and what they did for me. First of all, of course I did. How do you show gratitude and ever repay someone who has dedicated their lives to you. Its impossible. Second of all, what about the things that I had to give up...my senior year of college, many nights with friends and family that I wasn't there for. Sitting with an oxygen tank hooked up to me and watching as all of my friends moved on with there lives and graduated without me. A guilt trip from caregivers is the last thing that a cfer needs. This disease was not our faults just as it is not the caregivers. It is something that happened and we all need to just shut up and deal with it. The thing is, we both as cfers and parents have a lot on our plates. Both groups should equally be respected for what they put up with and what they go through. the last thing we need is CFers and their parents pitted against eachother.
Margaret
Post Double lung tx 11-11-04

 

[IG]

I don't believe we should be judging somebody's opinion.
Whatever luke thinks/feels/decides is up to him and we should not judge.
If you feel disappointed with him and desperately feel the need to tell him that then take it up privately, via e-mail or IM or some other form of communication but posting on this site is not the most appropriate place to do it.

 

[anonymous]

The thing is.....none of the moms on the other post were implying they had it worse than their children with CF. Luke just has a major chip on his shoulder and took the posts the wrong way. These moms were comparing stories and talking about how they felt when their children were diagnosed. Luke had no right posting that kind of message on that post. Are parents not allowed to compare notes on this message board. Do you need to make it a CF only board and have the parents go somewhere to seek solace? I'm sick of looking on this board for comfort and only finding drama and mean posts. It's a shame we can't all get along and fight this disease. Luke has made it about something different than what it was. Luke, do you like all the attention you have recieved?

 

[anonymous]

Thank, you, Margaret. As a parent, I totally agree with you... THanks for posting that!

 

[Mockingbird]

oh, SHUT UP! You people are completely taking this out of context. Read seana's post that luke was replying to. No, Luke is not having a midlfe crisis, no he is not seeking attention. If anyone is looking for attention, its seana. What else do you call it when someone comes on here and says "Do you CFers realize how much sacrifice everyone gives because of you" <i>Excuse me?</i> Put yourselves in our shoes for a minute. Have we done <i>anything</i> on this board to deserve that kind of question? Come on, I KNOW the parents on here are not like that, so why the HELL are you bashing Luke? WAKE UP! Look, I don't know whhat seana's problem is, but maybe you might want to consider Luke has a history on this board as a good person, and seana, who just showed up, has been causing problems. Shame on all of YOU, for turning your backs on Luke the moment he says something that stings a bit. I think a harsh comment from Luke can be trusted more than some flowery worrds from someone we don't even know. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[Mockingbird]

And one more thing, NOBODY said parents don't deserve a pat on the back. What Luke SAID, is its selfish to run around looking for gratification, which is true for everyone.

 

[anonymous]

I think the postings on this thread need to STOP! The purpose of these boards is not to single out one particluar person and start a thread with his name so that you can tell everyone what a terrible person he is - you weren't even outraged enough to leave YOUR name. Lets be adults people, and move on.

Barb 33 w/cf