Ethan wrote a wonderful piece on what it’s like for us to raise a child with a terminal illness. I have added below. I know a lot of people don’t like me saying terminal illness but that is what it is. He isn’t “sick”. It won’t “go away.” I don’t want to trivialize it. Unless something changes-it’s terminal. We live with that notion every day. We choose to live life. I am lucky I have friends and family who truly care and have decided to take the journey with us, no matter how scary, difficult or painful. When I say we are lucky, I mean it. To steal from another DMD family I admire – #makeeverydaycount!
Here is Ethan’s beautifully written explanation.
People often ask us (Peyton’s Parents) how is Peyton doing. How do you answer that? By no means am I upset with the question so often asked. It’s an obvious question that I would ask myself. I usually answer it by saying, “He seems the same.” However, how do I really answer that question. I’ll try an explain it with this. We don’t really know what is happening inside his body, nor do the doctors. There is no cure to this disease. Heck, there really isn’t any treatment. We are working with “maybes,” “hopefullys,” “don’t know if this works but we will try it.” The conclusion is always the same with DMD. Some boys have very short lives, 10 years and even younger. Others live into their 30s and 40s. But the average boy is in a power wheelchair around the age of 12 and has an average life of 24-25. Just writing this and thinking about it is difficult.
The average DMD boy enters mid-life about Peyton’s age. See, Peyton is in the phase of the disease (DMD) known as the “Honeymoon” period. He is still walking, appears to be doing well and seems ok to the average person. This is very common with DMD. Just like with cancer, when people can see you are not doing well, it is too late. As parents, it is extremely difficult to cope knowing that your child’s body is deteriorating every minute and there is nothing you can do to stop it. As a parent, this disease is on your mind consistently, as if raising kids didn’t give enough to worry about.
I posted this article because I think it is great and it explains why our kids are always off on some adventure. Parents have a few ways to deal with DMD. Denial, bathe in self-pity and sorrow or get all the life experiences in that you can in a short period of time. DMD forces you to re-evaluate what is important in life. It assists you by changing your perspective and how you view the world. Staying late at work and putting in extra hours to “Get Ahead” may not seem as important as it once did. “Getting Ahead” now means spending as much time with your children as you can. You understand that life is going to get tougher as the disease progresses. You also understand that you only have one chance to raise your children, they won’t be young for long.
If you know us or have seen some of our recent posts, you obviously know we have chosen to live-life and experience as much as we can TODAY. That’s right, TODAY. This is something you should also consider even if your child is healthy. Everyday across America and the world, parents often lose children to variety of tragic situations. It should remind all of us that we have been given no guarantee to a long life.