Huntington Disease Lighthouse Families

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My Son's Test Results

Posted by Patricia 
Re: My Son's Test Results
June 23, 2009 08:10PM
I AM SO DARN HAPPY FOR YOU! CONGRATULATIONS!

TELL HIM WE REJOICE WITH HIM OKAY?

The wave
Re: My Son's Test Results
June 23, 2009 08:12PM
Hooray! I am so happy for all of you!!!!!! smiling smiley
Re: My Son's Test Results
June 23, 2009 08:49PM
I live for this news - thank you so much for sharing. and CONGRATULATIONS!!
Re: My Son's Test Results
June 23, 2009 10:32PM
That is fantastic news!!!!! I am so happy for you and your family- Congratulations!!! I'm your cheerleader
Re: My Son's Test Results
June 24, 2009 07:52AM
That's wonderful!! Such a joy to know a child is negative!
Re: My Son's Test Results
June 24, 2009 08:35AM
Absolutely wonderful news....I'm your cheerleader

champagne and chocolate all round.
Take Care

Yvonne
Re: My Son's Test Results
June 24, 2009 08:44AM
Patricia-

What great news!

I am so happy for you.

Sharon
Re: My Son's Test Results
June 24, 2009 01:16PM
Yay! Congratulations!
Re: My Son's Test Results
June 24, 2009 05:09PM
Hallelujah -- Praise ye the Lord!
Re: My Son's Test Results
June 25, 2009 12:04PM
Thanks again everybody! I can't even describe the emotions I felt but I'm glad my son lived through his wife and I hugging the heck out of him when we heard the news! grinning smiley

By God's good grace no future generations in my line of the family will have to deal with HD.

Patty
Re: My Son's Test Results
June 26, 2009 11:20AM
Congratulations, you and son must be very happy
Re: My Son's Test Results
June 27, 2009 11:03AM
Thanks Brian, we are estatic!

Patty
Re: My Son's Test Results
June 27, 2009 09:54PM
I hope i don't sound selfish with this, but its how i feel...

I hope this experience has made you and your son live better and more humble lives.

This is the kind of moment i always thought i would have,
but as so many of us have learned, HD is blind.

please watch this:
[www.youtube.com]

Respectfully,

Christian
Re: My Son's Test Results
June 28, 2009 08:47AM
Saving Private Ryan was one of my favorite movies. But survivor's guilt is not a good way to live one's life. I am sure Patti and her son will live good lives because it's the right thing to do, and not because anyone owes fate for being "lucky". Patty's son was merely born normal like most everyone else is. He was born without a gene mutation causing HD but he is not genetically perfect just like none of are. He doesn't owe extra for the privilege of being normal. He was supposed to be normal. It's not fair of people with the HD gene or other family to expect more from people who don't have it. It's not his doing if he has or doesn't have the gene. And no one took on HD themselves so he wouldn't have it. I really, really hate to hear of people who inflict survivor's guilt on themselves. It's just being a victim of HD in a different way. And being held hostage to it. That's not fair or right. I understand some pangs of that guilt immediately after the news.. but it's not a good motivator to feel guilty for an entire lifetime. That would be a life built around a falsehood. I want patty's son just have whatever life he makes for himself .. no better or worse because his gene status. He's just a normal guy. That's what we want for everyone isn't it.. just normalcy?
Re: My Son's Test Results
June 28, 2009 10:14AM
Eric, very well said. Thank you.

Christian, I appreciate you sharing your feelings with us. Believe me, there won't be a day that goes by that I don't thank God for my son's negative results. I am HD+ so I know first hand what it is like to receive the news that you are gene positive. But I've always been thankful for my blessings in life and don't believe I've taken them for granted. HD hasn't humbled me but it has made me appreciate life "in the moment" a lot more. What humbled me about health issues was taking my son to Children's Hospital in Washington, D.C. every six weeks for the first year of his life. There were so many kids there with very serious and debilitating health issues. Yet these children were usually laughing and playing while waiting their turn to see their doctor. I believe that is the point I stopped taking health for granted.

I consider my son to be very courageous. He tested at such a young age (he's 23 as well) so that if he was positive, he could put a stop to HD in our line of the family. I consider that an extremely unselfish act. His Grandfather didn't know he was hd+ until he was 68 years old. So my son could have lived out a good portion of his life without having the burden of knowing he was gene positive (if that had been the case). Instead, he stepped up to find out so that future generations would not suffer from HD. I would not want him to live with any type of guilt for being healthy. There is no benefit in that.

I have to say this to everyone that is gene positive or at-risk. I honestly believe there are worse things than HD. My husband had two cousins that were brothers. They both had MD and were disabled at a very young age and died very young, one in his teens and one in his very early 20's. Most of their lives they were confined to a house with no internet, no cable TV with hundreds of channels, they lost their lives before these came about. With HD, *most* of us get to live at least part of a so called normal life. And that is just health wise. There are millions of people who live with extreme hunger every day. There are hundreds of thousands who live with the chaos of war right at their front doors. I don't like HD, I wish it could be magically gone from everybody's lives, but it only takes over your life at the presymptomatic and at-risk stages if you let it. I try not to. I'm not perfect and know I'll have days when it upsets me, but I'm trying to not let it take over.

I do feel like I need to say one more thing, I'm not trying to make light of people who have been caregivers to pHD's. I know it's an extremely hard job both emotionally and physically. I also realize there are people who have had to deal with the "harder" symptoms of HD their entire lives. These people must have unbelievable strength and courage. What I am trying to do is to give people who are at-risk or gene positive another way to look at HD so that it won't take over the healthy portion of their lives.

Thanks to listening to me ramble...

Patty
rj
Re: My Son's Test Results
June 28, 2009 12:10PM
Thanks Patty.....I really needed to hear that. It makes perfect sense to me. HD is BAD, but not the worse thing that could happen, I have to remember that frequently and it puts things in perspective for me.
dcb
Re: My Son's Test Results
June 28, 2009 03:23PM
Congrats!!!! I am so happy for you and your son !! This is the best news EVER!!!!

and very well said Eric!!! I loved your post as well!!

DCB
*Living for today*
Re: My Son's Test Results
June 28, 2009 08:38PM
17/17 who knew two numbers could be so beautiful! That's great news!
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