Round 2 : When 2 carriers want to have a child.

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Offline Miaki

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Round 2 : When 2 carriers want to have a child.
« on: August 03, 2006, 12:52:08 PM »
Jemma   I hope you find closure to all this and wish you all the  best of luck. Even though your topic was painful to some, it became very overheated I think it was well needed for all. As you said many nights you read over the posts I must admit that I read over and over these posts and thought about the issue even discussed it with my family. I have spend many sleepless nites and consumed many cups of coffee holding back my anger and frustrations.

However...........

Last parting words please dont take what you read here and walk away with it. I would advise you to ask to speak to some of the parents with thal major patients or even some of the patients themselves to really understand the good from tha painful issues that come with this genetic disorder. FACE to FACE that is.

Miaki.
« Last Edit: August 03, 2006, 01:10:44 PM by Miaki »

Re: Round 2 : When 2 carriers want to have a child.
« Reply #1 on: August 03, 2006, 07:07:27 PM »
Hi Maiki, Andy, Shilpa, Piorot, Danielle, Jemme....

 I was on this site after a long time and was surprised that there were so much of arguments over this issue.
As a parent, I can only say, yes, there are loads of good from bad and I too have got my rewards too. But at the same time, as a mother it becomes very difficult to see your child go through all that he or she has to go through in order to live. No matter how positive one is and how courageous one is, it is indeed very very difficult. It is okay  for you to go through any physical pain, but when your child suffers, it is the most painful experience one can have.

Even after so many years ( my daughter is 30) the pain never seem to go away. Does that mean I have not been positive or did not instill the correct attidude in her? Everyday of my  life I have prayed.. God, please give me all her troubles and make her better. Everytime I think of her, tears come to my eyes.

Yes, after reading all the posts, I feel Andy is right in so many ways. I think he understands what each Thal or their parents go through .. all their lives. Forget about who can afford and who cannot afford treatment or how much better it has become for Thals now in terms of medication etc.  That is a another issue alltogether.

You too have come a long way Maiki... seen a lot of suffering and pain. So has all the other Thal adults who are doing so well in life inspite of all the hardships.

 But you have still not felt what it is for a mother to see the sufferings day after day and will probably see all her life. Your mother me  and all the other mothers try to be  brave but there is still a lot of pain within us. And I am not sure if most of us would like to go through all this again? It still breaks our heart with each needle prick, with  each complication, not to talk of the fear of what might happen next all the time looming over us.
We have seen this for so many years. so you can imagine what a young mother might go through at first. You try to so hard to be brave, and instill that in your child. But behind closed doors, tears never stop.

One can argue, as i have seen in the posts.. that calamities can occur any time in life even if your child did not have Thal.. it could be somethimng else... or that no bed is a bed of roses... right!.. ... .. but again that is another matter altogether. But to struggle from day one of your life with something for which there is still no cure and the supportive treatment is so painful and complicated.... can be desparing for any mother.

I may be wrong in my thinking... but this is coming from my heart.. I hope you will understand.
So each woman will have to make their own decisions I guess..and there is no use of arguing as to what is right or wrong because what is wrong for you may not be wrong for another. And what is right for me may not be right for another.  No one can decide for anyone I guess. And the question of morality should never arise in anyone's decision.

Take care
shikha

« Last Edit: August 04, 2006, 05:40:39 AM by Shikha Mitra »

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Offline jemma

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #2 on: August 04, 2006, 04:06:38 AM »
Dear Miaki,

Thank you for your support.  I would love to meet some thal major patients and parents face to face....  Do you know how i could go about this.  I live in Melbourne...

Thanks love....

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Offline Miaki

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #3 on: August 04, 2006, 02:08:58 PM »
Hey Jemma

Good to hear from you. I will private message you with my contact details as I also live in Melbourne. I am more than happy to speak with you  ( I promise I will be good  :whistle)  If you didnt want to speak with me I can however put you incontact with a number of patients / paretns  that would be willing to help you out.

I thought this might be a avenue you can explore and hopefully help you in your decision making.

Take care Miaki

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Offline Isis

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #4 on: August 04, 2006, 03:26:04 PM »

    as a mother it becomes very difficult to see your child go through all that he or she has to go through in order to live. No matter how positive one is and how courageous one is, it is indeed very very difficult. It is okay  for you to go through any physical pain, but when your child suffers, it is the most painful experience one can have.

Even after so many years ( my daughter is 30) the pain never seem to go away. Does that mean I have not been positive or did not instill the correct attidude in her? Everyday of my  life I have prayed.. God, please give me all her troubles and make her better. Everytime I think of her, tears come to my eyes.

Yes, after reading all the posts, I feel Andy is right in so many ways. I think he understands what each Thal or their parents go through .. all their lives.

  But you have still not felt what it is for a mother to see the sufferings day after day and will probably see all her life.Your mother me  and  all the other mothers try to be  brave but there is still a lot of pain within us.  I am not sure if most of us would like to go through all this again?   It still breaks our heart with each needle prick, with  each complication, not to talk of the fear of what might happen next all the time looming over us.
We have seen this for so many years. so you can imagine what a young mother might go through at first. You try to so hard to be brave, and instill that in your child. But behind closed doors, tears never stop.

One can argue, as i have seen in the posts.. that calamities can occur any time in life even if your child did not have Thal.. it could be somethimng else... or that no bed is a bed of roses... right!.. ... .. but again that is another matter altogether. But to struggle from day one of your life with something for which there is still no cure and the supportive treatment is so painful and complicated.... can be desparing for any mother.

I may be wrong in my thinking... but this is coming from my heart.. I hope you will understand.
So each woman will have to make their own decisions I guess..and there is no use of arguing as to what is right or wrong because what is wrong for you may not be wrong for another. And what is right for me may not be right for another.  No one can decide for anyone I guess. And the question of morality should never arise in anyone's decision.
 

Too true, Shikha aunty,
 
Most parents would totally agree with you.  You have given invaluable insight in this matter, as a parent to another parent.  To bear the suffering for oneself, and seeeing/bearing the suffering of your own child, are two whole different ball games.

As a mother , as a parent, are the keywords here. You are the first thal minor parent to post about this.  :)

 Your thinking is shared by a lot many parents. They are certainly not wrong in thinking for their child's best. That is what parents do. :wub    
 Thanx for your input.  :smileblue  Frankly, I wish more thal minor couples and parents, would have posted in answer to this question. Who could know better about this, than a parent ??

Regards,
Shilpa.

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Offline jemma

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #5 on: August 05, 2006, 12:08:21 AM »
Dear Miaki,

Hi,  I am tottally excited :jumping  Yes i would love to meet up with you.  Please email me tomatoe@aapt.net.au.

I will be waiting.....

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Offline Ironman

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #6 on: August 05, 2006, 01:19:20 AM »
Hi, just wanted to leave a few words.

I myself wouldnt advise someone to give birth to a Thal. There is simply to much suffering and it is a struggle.

However I will say, if I could do it all over again, I still prefered to live with Thal.
I cant imagine a life without Thal, it has made me who I am and will be.

There is certain aspects of life you cant see, unless you are a thal. It opens your eyes in ways you didnt know. You learn to appriciate life every second.

If someone feels like they want an alernative way of seeing life, thal gives a good view...


Sorry, its a bit hard to express my feelings in english.


Take care y'all :wink
Fight yourself, before you fight others!

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Offline Isis

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Re: Round 2 : When 2 carriers want to have a child.
« Reply #7 on: August 05, 2006, 07:51:24 AM »
Hi, just wanted to leave a few words.

I myself wouldn't advise someone to give birth to a Thal. There is simply too much suffering and it is a struggle.
 
Take care y'all :wink


Hii Kocher,

It is good to see you posting  more often on the board !! :biggrin   Absolutely agree with you.
 
You are so right, thal does give you a very unique and different perspective in life, and brings out great reserves of strength in you....which no other person can ever even imagine.

 It is not your english, but your heartfelt words that matter, and you express it well.   :)

Shilpa.        
« Last Edit: August 05, 2006, 11:23:08 AM by Isis »

 

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