Why do my kids have to die in such a sick way if I have passed this gene to them? Didn't some god already die in a sick way for our sins? Why would my kids even have to think about this sick disease if there is a god? IF there is, why is he so selfish...that kids have to die for him? so sick and sad...

My heart and prayers go out to you. I can only respond based on my personal faith. This a very deep and personal subject and I pray I don't make you feel worse.

God is with you and your child. We all die, each in our own way. Even Christ died - also in a painful way, but not to keep our bodies from dying but our souls. For God gave his Son that whosoever believes in him shall not perish [in hell] but have everlasting life. Be concerned more for the soul of your child as I am for the soul of my daughter who is at risk, for that is what lasts forever. You are NOT at fault for your daughter inheriting this horrible disease and yes God knew that your daughter would inherit this disease but he placed you here to protect, care for and love her.

And we are here to help you.

Steve

People have been trying to answer the "Where is God" question for as long as we have been on this earth. I'm certainly not going to pretend I know all the answers, or that I don't ask myself that same question most days.

What I am certain of is that you can ease your burden, and that of your children, by finding support from other humans just like you: people in HD families who have asked the same questions and have found answers that somehow help them go on. Please try to join us in one of the weekly Yahoo chats. I'll say a prayer.

Always love,
Cristy

This showed up in my inbox today. It brought tears to my eyes as I thought about you. I hope it helps.

"Tomorrow morning," the surgeon began
"I'll open up your heart.
"You'll find Jesus there," the boy
interrupted. The surgeon looked up, annoyed. "I'll cut
your heart open," he
continued, "to see how much damage has
been done..."
"But when you open up my heart, you'll
find Jesus in there."
The surgeon looked to the parents, who
sat quietly. "When I see how
much damage has been done, I'll sew your
heart and chest back up and
I'll plan what to do next."
"But you'll find Jesus in my heart. The
Bible says He lives there.
The hymns all say He lives there. You'll
find Him in my heart."
The surgeon had had enough. "I'll tell
you what I'll find in your
heart. I'll find damaged muscle, low
blood supply, and weakened
vessels. And I'll find out if I can make
you well."
"You'll find Jesus there too. He lives
there." The surgeon left.
The surgeon sat in his office, recording
his notes from the surgery,
"...damaged aorta, damaged pulmonary
vein, widespread muscle
degeneration. No hope for transplant, no
hope for cure.
Therapy: painkillers and bed rest.
Prognosis: " here he paused, "death
within one year." He stopped the recorder, but there
was
more to be said. "Why?" he asked aloud. "Why did You do
this? You've put him here;
You've put him in this pain; and You've
cursed him to an early death.
Why?"
The Lord answered and said, "The boy, My
lamb, was not meant for your
flock for long, for he is a part of My
flock, and will forever be.
Here, in My flock, he will feel no pain,
and will be comforted as you
cannot imagine. His parents will one day
join him here, and they will
know peace, and My flock will continue to
grow." The surgeon's tears were hot, but his
anger was hotter. "You created
that boy, and You created that heart.
He'll be dead in months. Why?"
The Lord answered, "The boy, My lamb,
shall return to My flock, for
he has done his duty: I did not put My
lamb with your flock to lose him, but to retrieve
another lost lamb."
The surgeon wept. The surgeon sat beside the boy's bed;
the boy's parents sat across from him.
The boy awoke and whispered, "Did you cut
open my heart?"
"Yes," said the surgeon.
"What did you find?" asked the boy.
"I found Jesus there," said the surgeon.

- Author Unknown

There is a god. god does everything for a reason he doesn't cause things to happen to be mean or cruel. It's not your fault that you pass the HD. You didn't ask it have it or be a carier. I am 18 and I and I am carrier and my soon to be husband wants a child and like you I have to disided if I'm willing to take a chance a pass on the HD.

Steve,
Read the poem, really hit home. Could I impose upon you to e-mail it to me?
Thanks, Don

Bfloabbott*at*cs.com

You asked where is God?

I believe He is right here in the midst of these responses so full of love and compassion.

God is here alright. He is smack dab in the middle of it. But God did not invent HD. He is a loving God who as in Romans 8:28 works all things together for good.
Yes sounds hard to take in doesn't it? But see only God could take something so painful in our lives like HD and do something in the middle of it.

That is where God is. Not in bringing HD but in helping us through it.
My mom has HD. My three siblings are at risk and I tested negative in 99.
It was so hard those 4.5 years being at risk. Wondering, asking, praying.
Why me? What about my kids? I know those fears for our kids.

I did test negative. I do not have this gene and neither do my boys.
But I knew back then that God was walking me through my fears, through my testing, through getting the results. He walks with me still as I see my sister show what I believe to be early signs. Through each time I cry when my mom loses another precious part of herself.

I have gotten mad, I have cried, I have questioned. All this of God. I am a Christian and have been for years. I learned in the darkest of times that He did not bring this to me but He did help me through it.

Ask where God is and that is okay. God will show himself to you. But the God you look for is not in the making or bringing of the HD. He is with us who contend with it wanting to walk us through it. Because only He can. AND sometimes, sometimes if we are fortunate in this very difficult journey he uses others to meet us as his ambassadors right when we need it most. And he uses them to tell us to hang on. To not doubt. To know that God loves us and is with us in this.

Maybe somehow in these imperfect words....you will sense a touch of his love and presence in your situation. He loves your children far more than you could ever know. Trust them and yourself to Him.

Sincerely,

Julie

Is there anybody out there who is brave enough to say, "I don't believe in god?" I struggled to have faith for many years. Then I said one day, I don't believe in God. What a freedom of my spirit! I no longer blamed anyone for my problems and I no longer felt guilty that my problems, including a diagnosis of HD, were caused by my not believing enough to get my prayers answered. But a person hardly dares say she doesn't believe for fear of all the believers' scorn. I say, Try it, if you are struggling to believe. Try accepting nature and science and no life after death. You might live better right now.

Jules expressed so eloquently our belief. What she didn't tell you was how two women who never met one another became soulmates. Two women who are struggling with the devestating effects of HD in their family..with their friends and everyone they encounter in the HD community. How did two women become so close like sisters..connected hearts across the states? One in Washington State and one clear across the country in South Carolina. How did two women become spiritual life lines for each other without even knowing each other personally? How did two women with wonderful husbands and gorgeous children reach out across the map to each other through a computer and realize that they'd be friends beyond eternity? The answer my friend...is God. God and his spiritual plan for all of us. God placed her in my life and Me in her life to encourage, support, comfort and trust one another..to become the closest of friends through our heart, body, and minds..to spiritually lift us higher then any cloud. Yes, I believe that God placed us exactly at the right time in each other's lives and I believe that God watches over all of us. If someone didn't die then we would all take life for grant..wouldn't we. I believe that my mother's suffering has taught strangers to reach out and help her..to learn from her..to understand her..Her HD is teaching others compassion..Her Hd has shown me to appreciate every second of every moment in life. I love God...I love life..and I love everyone courageous enough to be involved on this message board..God be with all of you..whether you believe or not...God still loves you and so do I..Especially you my dearest and closest friend..Jules..your the greatest soulmate a HD gal could have...Love and smoochie woochies...Sunshine Cindy