If I Had Known...

I heard it again the other night. A statement somebody made that I had to bite my tongue harder than I ever have in my entire life to stop from saying anything...

"If I had known he had Huntington's Disease, I never would have had children"

We were at our monthly support group meeting and a mother made that statement. Now, to clarify, she was upset. She had lost her husband, one daughter and was dealing with a second daughter who was in denial that she has the life robbing disease. Her husband was diagnosed with the disease after they had children. The second daughter is refusing any treatment to manage the symptoms and is refusing to talk to her mother. So, I can understand how she would feel that way at the moment. I can only imagine what it would be like to bury a child. Nobody should ever have to do that. It is not the natural order of things. 

I can understand the thought process to an extent. Robert and I struggled with the decision to have children because we knew that we risked bringing a child with Huntington's Disease into this world. In the end, for reasons that have nothing to do with his diagnosis of Huntington's Disease, we did not have children. Plus, I can imagine that she feels a lot of guilt because she brought her children into this world and they have this disease. Hindsight is 20/20, though. It is much easier to look at how you might have done things if you had all of the information, but that isn't the way the world works.

That same statement is one that Robert's grandmother made on more than one occasion. She even told me that I should never have children, either. She said I had no business having children because they might have this awful disease. That always made me so upset. Saying that is wishing Robert away. To me, it is saying that his life wasn't important and that he doesn't deserve to be here. It is saying that the man that God chose for me shouldn't be here. I disagree with that. 

One of my favorite movies helps explain why I have a huge problem with what she said. It is defined as a Christmas movie because it takes place on Christmas Eve. However, the meaning applies every day of your life. I am referring to It's a Wonderful Life. If you are not familiar with the movie, the gist of it is that a man wishes he wasn't born and is shown how different life would have been for so many people he knew as a result. Once he realizes how much he helped those around him, he realizes that it does have a great life and that he had a huge impact of those around him. 

One of my favorite quotes is in this movie... 

"Strange isn't it. Each man's life touches so many others. When he isn't it around, he leaves an awful hole, doesn't he?"

I can tell you that if Robert wasn't around, there would be an awful hole in my life. I am betting that many of you reading this can say the same thing. Robert has touched the lives of his brothers, sister, daughter, co-workers and friends. Plus, there is all of the kids that he teaches on Sunday mornings. Kids who still run up to give him a hug when they see him at church years later. And that is only skimming the surface of the people who he has touched. If he wasn't around, what would we be like?

Her statement was also hurtful to Robert. He said that it made him feel like he had no right to be here. It was if she was saying that he wasn't good enough to be alive because he has Huntington's Disease. That is wrong. 

The reality if that any one of us could be hit by a car on the way to work tomorrow or have a some other catastrophic thing happen to us. For all I know, Robert may never develop symptoms of the disease because he will die some other way. Instead of making hurtful statements like that, we need to enjoy each moment we have with that person in our lives that has tested positive for Huntington's Disease. 

So, if you are thinking that you wish you didn't have your children because they have HD, don't dwell on it. Instead, be grateful for the time you have together and consider the impact he or she made on your life and the world around you. Chances are, the world is a better place because your child was a part of it.