I titled this post after a very negative employee's words at work. An employee of mine just found out we are doing a Make A Wish trip next week. Well, I thought I had told her. She was quite nuts about the entire thing, starting off by saying that she thought it was for very, very sick kids. I was ticked off at that point. I told her, well, it is for kids with many situations, of which DMD is still a fatal illness and technically, they like to work with kids who aren't in constant nursing or doctor care, as that can make it very difficult for arrangements. It was Make A Wish who wanted to plan our trip, right away, not us. Then she proceeded to say that kids now live a lot longer, into their 20ties, etc. and that well, we will all die some day. I told her, it depends on the kids, as many don't. I also said it is due to what our children and families are going through, every day for the rest of our lives. Of course, we pray that a cure will come soon, so that no one has to keep saying this, but, unfortunately, this is not the case, just yet. I went home ticked off, could hardly believe someone could be so disrespectful, but then I thought, I bet others have dealt with this as well. I then thought about what the best answer would have been. Here goes.
"If you could live just one day and experience what it feels like to hear your child say - When I grow up I..................., then you'll understand what we go through daily as a parent of a child with DMD."
I don't know if other kids talk like Kelvin, but nearly every single day, he talks about what he wants to do when he grows up. I know each and every one of you understand how I feel. I don't need to explain it. It tears at my heartstrings.
Sorry, I just had to vent and you are all there for me as support. Thanks,