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55463 Posts in 5940 Topics by 6277 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: When 2 thal minors want to have children.  (Read 58945 times)
Poirot
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« Reply #75 on: August 02, 2006, 10:14:06 AM »

Well, Poirot, I think you successfully distorted each point I made.

Fine, Andy. You do not understand me, and I distort what you are saying. Enough said from my side.

Peace.

Poirot
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TruBlue
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« Reply #76 on: August 02, 2006, 02:52:24 PM »

Hello again Jemma,

I’ve spent a lot of time considering this issue today {Six hours driving at  work afforded me the luxury} and discussed it some more with my wife and even my daughter when I arrived home. My wife made some great points, but being only 3 yo  my daughters input was pretty limited.  I did learn a lot about whoever Captain Feathersword from the Wiggles is though??? Anyway, I too have lost a child and can certainly relate to your pain.  I believe I have allowed the pain of my own lost child to cloud my judgement regarding the decision you are faced with and attempted to appraise it again in a fresh light.  It has proved incredibly difficult for me and the basic result of my soul searching is that I am eternally hopeful that I will never be faced by such a momentous decision.

I tried assessing your situation from as many objective perspectives as I could visualise and soon arrived at the conclusion that my own daughters passing has clouded my ability to make any type of unbiased assessment or suggestions.  Arriving at this conclusion helps me in some small way to deal with the passing of my own child and leads me to conclude that I owe you an apology.  I am in no position to offer an  opinion or advice that will not simply collapse into an outpouring of raw emotion.  I am completely and inherently unable to proffer an unbiased opinion on this issue due to my own experiences and, thusly, should have refrained from commenting.  For my error in judgement I apologise to you.  I apologise to for my part in your very serious post becoming derailed to such an extent in a pointless duel with the administrator and his lieutenant…oh no….that’s definitely going to earn me a vitriolic three page monologue in point form    Oh well, they don’t seem to change much in form or content so I guess I can just refer back to an earlier one? Yikes! There’s another two pages! Maybe I do shoot myself in the foot sometimes? Or put my foot in my mouth….and then try to shoot it? {You can just hear the cheers for that one} Anyway, I must apologise for the weak humour as well { A nervous defence mechanism I guess}

In closing, I don’t envy you your position at all and though I feel that I am in a position to address some points such as community pressures, and actually living with someone who has Thal Major. I feel my emotional closeness to the subject matter due to the loss of my own child precludes me from contributing further and should have dissuaded me from doing so in the first place.

I wish you and your family all the best for the present and the future, and you have my unqualified apology for the antagonism I exhibited.
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Danielle
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« Reply #77 on: August 02, 2006, 06:14:24 PM »

I apologise to for my part in your very serious post becoming derailed to such an extent in a pointless duel with the administrator and his lieutenant

 

I'm going to ignore that comment.   

Anyway, I'm sorry about your daughter, and I realize now why this subject is touchy for you.  I'm glad to see that you apologized, though. 
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jemma
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« Reply #78 on: August 02, 2006, 11:03:59 PM »

Dear TruBlie,

I am so sorry to hear about the loss of your daughter.  Your apology has been accepted.  I realise that coming onto this forum and talking about this issue will upset some peolple and that is fine.  However i believe that it is a very important issue and i have been amazed that it wasnt bought up earlier.  I hope i have opened up the doors for other couples in our position to talk about there views openly and honestly without being attacked.

I wish you and your family all the very best....  Take care


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Andy Battaglia
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« Reply #79 on: August 03, 2006, 03:45:45 AM »

Jemma,

I am very sorry that you were attacked in this forum. At our previous group at MSN, we had someone come to the group who had already had one abortion of a thal major and this type of reaction was absent. We are normally a very caring group of people and aside from a couple members who continually seem to believe the whole world should live by their standards and religious beliefs, we have only seen people trying to help each other.

I am going to say something and it may offend many people but I am already quite offended. I am utterly disgusted by the behavior of some members of this group in relation to this thread. When people, most of whom profess strong religious beliefs, feel justified in attacking a woman who has been through her own personal hell and is obviously still learning how to deal with her loss, I simply don't understand it. How does this fit into the concept of Christian compassion? I don't think this concept is unique to Chistianity and I do feel that the concept of compassion is a universal one held by most if not all religions. I have just gone back and read through Jemma's posts and I see no justification at all for the comments and attacks that have been made. I see a woman who came to us for help and who was very confused about what course of action to take and who is also trying to deal with a great loss.

People, this is a SUPPORT group. There are countless forums online where you can go and vent about abortion or any other issue. This is NOT one of them. We are not here to attack or condemn each other. We are here to help each other. As I said before, this group is based on tolerance. If you think tolerance is some politically correct rubbish, I will be more than happy to show you the door. I will also ask that you please check your attack mode at the door. And mostly, I will ask that you THINK! Think about the effect your words will have on those reading them. Have you said anything that others can find something positive in? Have you tried to help or have you added to the problem? Have you been honest or have you left things out in order to support some agenda?

Jemma, I want to get back to your original posts. I have been involved with this group for several years and I have seen posts from many parents of thal majors and also frequently communicated by email or on MSN with many parents of majors and never have I heard a single parent say they were overjoyed to find out that they had a thal child. In fact, the experience has been quite the opposite. I have most commonly heard the word devastated to describe their feelings at discovering their child's condition. Almost always the parents will ask about the possibility of a bone marrow transplant. I would ask you to read Khalifa's posts about the year spent in Italy for his son's bmt and then ask yourself why parents are willing to put their child and themselves through this dangerous life-threatening ordeal in order to cure their child of thalassemia rather than live with thal. Over the years we have heard many stories of parents who feel overwhelming guilt for bringing their children into this world and have also heard of the guilt many patients feel over putting their parents through the life of caring for a child with thal. Read through the many posts here and at our old MSN group about thal and the health problems associated with it. Early on you mentioned Lisa. I will tell you something. In spite of how wonderful modern care is, Lisa suffered for over two years before she finally passed away. The pain in her final months could not be alleviated by any drugs. The helplessness felt by the people around her, including myself was overwhelming. I have seen what thal has done to her mother's spirit. She lost both her husband and daughter to thal. I wish so much that I could do something to lessen her pain and grief but the only thing I know to do is carry on this group in her daughter's name in the best way that I can in Lisa's spirit.

Today I talked to a young man who calls me his dad and he told me that he can't find a girlfriend. He is 26 years old. He asked me why no girl would have him. I asked one thing...thal? He said should he just die? Let me ask. Is this the voice of someone with a chip on their shoulder? I am currently talking to at least half a dozen other thals who have the same experience. And each and every one of them has asked this question of themselves. Should they just die? What does life hold for them if not even human companionship? This needs to change and believe me, I work hard to convince these people that life has value and to teach everyone that thals are just as deserving as anyone else. As part of my role in the world of thals I have counseled many thals and far too often I find people who see nothing positive about their lives and sometimes even embrace death as a release from the pain of their lives. Before anyone calls these people names because of what is perceived to be nothing more than a bad attitude, I say wake up! This is the reality of thals in so many places around the world and denigrating them may make someone feel more potent in his own life, but it does nothing to help anyone and is quite frankly demonstrates an attitude of one who could use some sensitivity training at the least. 

I had hoped that you would hear from some parents of thals and hear their stories, because you have all along been asking about whether YOU can handle being a mom to a thal and only YOU can judge if you have the strength and willingness to do so. For us to judge for you is impossible. We can only try to present an honest picture of what it is for a parent to raise a thal child. I feel very few of the posts in this thread have actually tried to do that. You might be surprised to learn that some of the people who posted have parents who have never come to terms with their own child's thal.

Jemma, your decision is up to you and your husband. It is not up to us and never was or will be. I realize you do understand this and hope that every single member of this group can also understand that. I do hope you will continue with us as long as this is a question in your life. I promise that I will do my best to offer support and encourage others to do the same.
« Last Edit: August 03, 2006, 10:44:40 AM by Andy » Logged

Andy

All we are saying is give thals a chance.
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« Reply #80 on: August 03, 2006, 06:37:51 AM »

Hello everyone!

Why are we going around in circles?!?!?

I thought this issue was settled!
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TruBlue
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« Reply #81 on: August 03, 2006, 09:02:15 AM »

Its not settled until Andy decides it is apparently.  Might be best just to let him have the final word and leave it at that?
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jemma
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« Reply #82 on: August 03, 2006, 10:02:26 AM »

Well i thought since i started this thread i might as well be the one to finish it off.  I appreciate everyone for replying to my post.  I understand this was a very emotional issue to all of us and i thank you for your input.  In future may i suggest as Andy said that people do not attack another person because no one knows exactly hw that person is feeling.  I cannot tell you how many times i have read some posts that were either attacking me or being really sarcastic  and then i could not get no sleep.  However the beauty of the internet is that you cant see the emotions and that is what made me feel "safe" (cause i did not have to face you}

Special thanks to Andy for speaking so obectively.  You have really helped me in more ways than one.  I think you are doing a great job.

Dannielle, I wish you all the best of luck with your studies and also thank you for your help.  You gave me a good insight to the life of a Thal major person.  Before you i had heard only good stuff and i actually started to believe that the genetic counsellor was lying to me.....  Thank you for sharing with me your insights...

May God bless you all.....

Lots of Love   :hug

 
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