Now I find myself wanting to know
“I got married fairly young, around 20 years. At that time no testing was available. My husband-to-be was completely informed on Huntington disease, all that we knew at that time. There were no secrets. He could see all the full effects in my mother. At that time my mother was quite advanced and exhibited all the symptoms of HD. My husband, the special man that he is, has great insight and even with the twisting movements, and ever changing moods and behaviour, he could see a flicker of my mother’s beautiful character. She was a special lady and my husband had, and still holds, high regards toward her. She passed away in 1987. We still remember her. This same man told my parents, as we sat together discussing wedding plans and HD, if we have 20 good years, it will be worth marrying your daughter. If we have 10 good years, it will be worth it. Boy! How proud I was of him to be so courageous in the face of such a horrible disease. This gave me courage and strength to be able to live our life together, no matter what.
At that time, in my mind, HD was far away. It seemed it would take an eternity to ever show up. I felt that I could have my family and raise my children without ever having any signs of HD. Nevertheless, we talked about having children, because we felt it was an important part of our life together. We tried to plan them early in our marriage. This was to enable myself to raise my children without too much threat from HD. One of the reasons I chose to get married and have children is because I believe in hope and quality of life. For me a life without children was not complete. I had hopes for a better life for myself and for my children.
Besides, there were no guarantees that I was absolutely going to have HD or that my children would inherit the gene. I had a 50% chance. I took a chance for the better. If the worse came, I still prepared myself in the event HD would show up. Soon after the birth of my second daughter, I gave my life to Jesus. I was born again, and this made a big difference in my life. Jesus gave me a new hope and a new strength in my life. This changed my outlook on my life and HD. I see things from a new perspective. Families with HD hide behind a lot of shame and fear. This shame and fear seems to take over our life, till there ‘ain’t no more’ life to look forward to. People with HD in the family are not ‘nothing people.’ We can accomplish many things. We are people who can recognize people’s hurt and sympathize with them. I’ve never seen a group of people so dedicated, warm-hearted and willing to help those in need.
Isn’t that what living is all about? Caring and helping one another in our time of need? Who can say for sure that they will never need anyone’s care or help? There will always be a time when you will appreciate a kind heart and warm smile. People who face the risk of having HD every day are such people of concern.
You will never know if you get into an accident and get paralyzed or handicapped, and there are other diseases like heart disease, stroke, Alzheimer’s, multiple sclerosis. We can all be victims of such horrible circumstances. People at risk are real people, people with feelings, needs and something to give.
There are people who will criticize a couple at risk for having children. Why? Our society would like to have the perfect society. In some societies, if their first born is a female, they will get an abortion until they are pregnant for a boy. Hitler tried to make a perfect society by eliminating all those people who had any defects. Is society any better today? Our society will not be better by murdering babies before they are born. I don’t believe in abortion. I feel it’s wrong and God calls it sin. I ask you who has the right to rob another person’s life because it is less than perfect?
“ People with HD can accomplish many things. We are people who can recognize people’s hurt and sympathize with them. I’ve never seen a group of people so dedicated, warm-hearted and willing to help those in need.”
Now at 36 years old, and celebrating our 17th anniversary, I count myself lucky. My beautiful daughters are 12 and 13 and a half. I love my husband, I love my daughters and I love my life with them. I feel good about having my family, whether I have HD or not. I don’t know if at 20 years I would have been tested, but now I find myself wanting to know the truth. I feel positive about getting tested; it will give me a sense of control over my life. It will help me to make some important decisions about my future and my family’s future. This will help me prepare mentally and physically for the challenge that lies ahead. To anyone who is at risk of HD, I would like to say that a different perspective is needed, one that will accommodate a challenge to change, and a challenge to meet the needs of a different stage in your life and to do the best you can with what you have.
Whatever happens, if I test positive or negative, I don’t regret my decisions, and my trust and hope is in God Almighty. I know that God doesn’t throw away people because they’re less than perfect. He loves them greatly.
Who can stand and say you have no right to fulfill your life? Who has the right to take away your hopes and your dreams for a better life? It’s not a matter of eliminating those who are less than perfect. It’s a matter of hope, caring, sharing and love.”