When Betty Predmore asked me to write a guest blog, of course I knew exactly what I would write about. I’ve always spoken about it, but have never written about it, so this will be a first for me.
I live with a disease that most have never heard of. It’s terminal & unlike some diseases, there is absolutely no cure. My husband was diagnosed with Huntington’s Disease Chorea (HD) four years ago. It’s hereditary & you have a 50% chance of passing it onto your child. He inherited it from his mother & she from her father. We have three children at risk, two being my step-children & the other being my 7 year old son.
If the positive father conceived a child later in life, such as in our case with my 7 year old son, the higher the risk for Juvenile Huntington’s Disease (JHD), which means an earlier onset & a shorter life expectancy, factoring in the quality of life.
It’s been written in many articles that it is the worst possible disease you could have, as it takes away your ability to walk, talk, feed yourself & it takes your memory.
I’ve gone through many phases of emotions with this disease, from mad, to sad, bitter & absolutely puzzled as to why God chose one of the smartest guys in the world, someone who graduated with honors from both high school and college. Why not give it to me instead of him? It’s not fair.
But then I realized that this is God’s journey for me. He picked me to be This man’s wife because He had enough faith in me that I would take care of him through every moment. And what an honor that God believes in me that much.
We all have our crosses to bare and I have already been through so much in my life that the only way I can describe it is like this:
Throughout our lives we are faced with many obstacles, call them crosses that are maybe a little lighter to carry than others. Kind of like strength training. God was building me up for some of the greatest challenges of my life. He was making me stronger each step of the way so that when the crosses got heavier, I would be able to carry them.
Every day I watch my husband get just a little worse. We are still in a great place. There is no day that will be better than today. I make sure I keep him active, doing things that are balance related that will help him with his coordination, such as paddle boarding.
Then I look at my 7 year old and wonder if he has it. I look for signs every day. I wonder how much time I’m going to have with him. You can’t get them tested unless they are symptomatic and right now my decision is not to have him tested because right now I cling to a 50% chance of hope he doesn’t have it. It’s better than no hope at all, in my eyes.
There are some people that opt out of having children for fear of passing it on. I think about this a lot. I’ve asked myself if we had know would we have changed our minds about having kids. Then I look at my seven year old and I think to myself, I would rather have 7 years of his precious life than never having it at all. God gave me this gift, rather it be for a little while or for as long as I’m alive.
I’m going to take this life that God has given us and I’m going to embrace this journey with the power of God guiding me every step of the way, because He believes in me that much.
I hope that whatever struggles you are having today, please know that God believes in you and that you can and will get through it.