I started to write this in response to this thread [www.hdac.org] but decided to start another so more people might see it.

Phyllis stated "My love for my son and the guilt that we may have passed it to him ate me alive inside." I've heard this a lot from parents and I just wanted to comment.

As a phd, I would not want my parents to feel quilt about having passed on the gene. I don't see it as something "they gave me", I see it as a medical condition, plain and simple. After all, if they hadn't of given me the HD gene, I wouldn't have gotten all the rest of them as well and wouldn't be the person I am.

It would make me very, very sad to think that either of my parents were spending precious moments of thier lives feeling guilt. I'd much rather they be spending those moments being proud of who I am and enjoying my personality. Of course I don't mean to hog time, they can also spend the time enjoying their own lives and their other five children and nine grandchildren.

I smiley'd (like that word?) the above because I really, really mean it. I realize that any parent would feel sad that their child has the mutated gene. Sad, worried about them, etc. That is only normal and expected. But guilt can kill someone's spirit. Please, parents, your child might have inherited the gene from you or your spouse, but you didn't "give it to them" and it was out of your control. Please celebrate your child's life, even with the HD.

Patty

Patty,

I so agree, every word you said.
We value every family member, whether they are healthy or not.
As a phd., with a great family, I wish I wasn't. We take in stride, the good and bad. All of our 4 kids, and grand-kids, have valuable, worthwhile, lives. I acknowledge, that our lives, are easier, since I seem, to have late onset HD.

I think my Dad did suffer from a lot of guilt. That's why he was in a state of denial up to the day he killed himself.

I was not close to my dad for reasons unrelated to HD.

I've no idea whether he was proud of me.

My mom has always been. She never regretted having four kids. Well, maybe OCASIONALLY!

But like everything else in life - she took it all in stride.

jl

Thanks for your post patty!! I too, have periods where I struggle with guilt. I wonder if my boys are going to me "mad" if I end up passing the gene on to them. I would do anything for them not to end up with it......but in reality, they are here and I love them soooo much, I hope they will understand.

thanks for posting that x



Edited 1 time(s). Last edit at 04/17/2009 07:35PM by trying 2 cope.

Yes, I have to say as well that I don't blame my parents at all. This situation is so out of anyone's control that I couldn't blame anyone.

I hope our son never gets sick, but I know that is definitely a possibility and that does bring some guilt as well...

I just hope to tell him and show him that he was our miracle baby and we love him more than he can imagine.

And, I hope if he does have it, there is more effective treatment or a cure....

That was a really nice post Patty, and so very true

Thanks Barb and thanks everybody for sharing your thoughts on this.

Patty

I know I can't speak on this personally, but my husband has told me more than once that he is very glad he was born, even with hd and his sister has also told me the same thing.

Patricia-

Thank you so much for a much needed post and a true one. You have helped many today.

Sharon

Guilt is like any emotion. It has it's uses and it has it's drawbacks. Unlike most negative emotions though, there isn't a pill for it. So it's up to you to use it wisely and productively. If you beat yourself up because you didn't say all the things you wished you had after a person has passed away, it's to late and beating yourself up isn't productive. If you evoke the same guilt to make sure you say what you want to those you live with now, it is a constructive and worthwhile exercise. It's important to know for what reason you are using the guilt. Many times guilt is for a one time action that won't be repeated and can't be changed. In those instances one might chalk things of that nature to the "life experience" category. And exercising some common sense, coupled with a little self forgiveness can go a long way.

patty thank you for you post it made me cry. the post to me was beautiful. my husban has hd. i have 2 girls and i feel guilty alot knowing they might inherited the gene and my girls dont know about hd yet. i just hope they are as STRONG as you are when we tell them about hd

Thanks again everybody, it came from my heart so I'm glad it has touched others.

Patty