- CureHD Foundation -
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| Robert Bishop Introduction HD family tree Why I do this Family photos What is HD? Definition The HD secret How many have HD The cruelest illness The HD nightmare My experience Other experiences HD research Hope for a cure North America How can I help? Make a donation Contact the media Ask legislators... News & events Articles & stories I need your help Contact info CureHD Foundation CureHD sponsors HD web sites Other info Content © 1999-2009 |
As told by Sherry Lee... "Research is needed to halt the progress of the illness in those who already carry the gene. But the destruction of HD is already available to all who know it is present; we don't have to pass it on! Let it die with the DNA of those who suffer from it, let that be the finest and most courageous sacrifice a pHD [person with Huntington's Disease] can make." —Daleah Caprice Thiessen I was an at-risk individual, who, in my teen years, made decisions to have children early in life. By doing this, I thought, I would be free from Huntington’s Disease long enough to raise them. I was educated in the genetics of the disease, but obviously not old enough to be realistic about what my children would have to live with. I now know it was a given that my children would be affected by HD. Whether living to take care of me, living only to inherit the disease themselves, or living with a parent who continually obsessed about if she had the disease, they would be affected. It was, at the very least, an incredibly selfish decision. I was only thinking of myself. At eighteen, I already had two children, and was secure in my mind that I had made the right decision. I love my children more than life itself; but as I grew older, the question of whether I had made the right decision haunted me. I would cry at night, watching them sleep, thinking, "How could I do this to them? What will life really be like for them ten years down the road?" I knew first hand what it was like having a parent with HD. I had lived with my father’s rages and unforgivable beatings. I had endured the staring from school mates when he committed suicide. Is this what I wanted for the people I loved? Did I make the right decisions? Can anyone really answer that? I am a good mom. I wipe noses, and rock away bad dreams. I meet the teachers, and I pack the lunches. But if you asked my mother when the parenting stops, she would surely say that it never does. At twenty-eight, I need to call her and ask for wisdom. I feel robbed of the father that I should have had; he wasn’t there to give me away at my wedding. I didn't have a father to be proud of me, or mad at me. What made me think that my children would need me any less than I needed, still need, my father? Even by having them so young, did I really ensure that they would be OK if I did have HD? When I went through the predictive testing a year ago, my worst fear was that my husband would leave me, and my children would despise me. I hated wondering if I had destroyed my children's lives. I truly regretted my decision to have them, even if I did love them. It seemed like abuse to me that I would willfully let them live with the fear of this monster. I had thought of leaving them all, to run away like a child some place else. I would just live alone. And die alone. But it wouldn't erase what they would inevitably have to face themselves. Had I made the right decisions? Yes, and no. I escaped it because I tested negative. It took almost a month to stop crying. I could look at my children and breathe for the first time in years. If I had to live my life over, would I have had them? Probably. I am selfish, I will admit that, and I love my children. I love them with the kind of love that is hard to give up. But I do owe them an apology. I should have cared enough to think of them completely before I had them. Used with permission; Faces of Huntington's by Carmen
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