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.