Day at the Movies

Today I saw fragile x for the first time. I attended a Family Fun Day for the So Cal Fragile X Association. We went to a free showing of Hotel for Dogs. It was hard, but at the same time, not. When I considered going I was scared, because besides Pup, I haven't ever met anyone with fragile x. With Pup I really can't tell yet, so I was worried about what I would see, how it would look, what the behaviors would be like.....I didn't know if I was ready for the reality of what fragile x is really like. I'm so glad I went.

It was hard "seeing" what it meant to have fragile x, but there were so many degrees of severity. I realize now that so many times I've probably seen people with fragile x and didn't realize that's what it was. It's funny how they are all so different, yet somehow all very similar. Some of the kids were hilarious. When I got home my husband asked how it was. I told him it was hard but wonderful at the same time. He can handle the various behaviors, etc, but his biggest worry are the tantrums we hear so much about. He's a man who loves going to restaurants, etc, and worries his life is going to drastically change. (Well....I told him to get ready cause it is!) He asked if any of the kids had any. There was one boy in front of me who was having a hard time. When I told him, yes, that there was one, he looked sad. But what was so amazing to me, and what I told him, was how no one bothered to even look. It was just so matter of fact. I loved that. I also told him that out of the entire room, there was only one tantrum and the rest of the group were laughing and enjoying themselves. When the movie was over, one boy stood up and shouted, "Movie dismissed!" It was so sweet. My husband looked so relieved. I reminded him that our "normal" kid has more tantrums than we can count. I guess what's scary to him (and me, too) is that the terrible 2s/3s seem to just last a little longer. No matter how they were, however, it was obvious that they were all so loved by their family members around them.

I met so many wonderful parents who are envious that I know so early. I am lucky to have the knowledge about my little guy. I know for many parents the hardest part is just getting a diagnosis. I will never have that worry, and for that I feel blessed. And I also wonder if how he is as a baby has any indication for how he'll be later. Who knows? I know he is going to be who he is and I will love him unconditionally. I hate myself sometimes for harping on it.