Not Your Fault

This is my 14 year old granddaughter's response to her Mother's illness:

It’s Not Your Fault


“I’m sorry you guys,” her voice repeats in my mind. She said she was sorry. Like it was her fault, like she could prevent it. It’s not your fault Mom…

I can remember everything that happened at that moment. It’s almost frozen in time. A single, horrible memory, that won’t go away. I was thinking ‘why her?’ Why did she have to stand in front of her two children and tell us that she has Huntington’s Disease? She looked at us and said sorry for the disease that had been in her genes since birth. She had no way of knowing that she had it.

In case you didn’t know, Huntington’s is a rare disease. The only way you can have it is if your parent had it. Children of a Huntington’s patient have a fifty/fifty chance of having the disease too. You are born with it and there is no cure. Unless you get tested you won’t realize you have it until around your late thirties. Huntington’s causes your mind to deteriorate, or in simpler terms, you start to loose control of yourself. Some signs that you might see are uncontrollable shaking, memory loss, stuttering or slurring of words, and reactions are a lot slower. The biggest sign is a rise in the anger level. The disease causes the patient to be very moody and unpredictable.

The scariest part about it all is that one day I might have to tell my children that I have Huntington’s. My children telling their children, and so on in a never ending circle. One day my children might be writing a paper just like I’m doing now. It’s creepy to look into my future and see me in my mother’s position. I see myself looking down at my children with tears in my eyes, just like my mother had to. My mother’s fate effects how I now look upon my life. Things seem different now, yet nothing is different. I want to be able to look into my future and see how my life will play out. I want to prepare myself for what is to come. I want to be able to understand what might or might not be inside of me.

When my mother told me that she had the disease I didn’t know much about it. I remember wondering what it meant, what would be different. I knew that my grandfather had the disease, so did my aunt, but not my mom. There was no way my mom could have it. Her test results came in early, so it was a slap in the face when she told me. I wasn’t expecting it at all. In fact I was angry because when they told me they had to talk to me I thought I was in trouble. I was mad that she was going to ground me or make me clean my room.

I remember her telling my brother and me to sit at the table. I was in the process of making a sandwich and she told me to bring everything to the table and eat while we talked. I made my sandwich and started to eat it. My brother sat across from me looking up at my parents. He had that, ‘I didn’t do it’ look on his face. I was mad at him too, because I knew that he’d get away with whatever he was in trouble for. I was mad at all of them, and I shouldn’t have been. I shouldn’t of had thoughts of anger when my mom needed me the most.

I guess my point is that I’m sorry. One moment before she told me she had the disease I was mad at her. I was angry for something as stupid as having to clean my room or getting grounded. I can’t help feeling that I owe her something, like I hurt her in the worst possible way. All I can give her is my love. I know that it doesn’t change anything, but it does help.

I remember the darkness outside the house. It contributed to my feelings, my want for understanding of what was going on. What was going to happen. Everything seemed so unreal within the house. Time stopped, for a single moment, everything froze. I remember the words, the way they weakly fell from her lips and into my memory.

“I’m sorry you guys,” her voice repeats in my mind. She said she was sorry. Like it was her fault, like she could prevent it. It’s not your fault Mom…

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Bethany has some poetry she wrote, so I created a page for her. I feel it's important for her to be able to get her feelings out. She's so grown, at such a young age. My first grandchild, and so like her Mother...