Lately, I've been feeling pretty good Clare-wise. We have been dealing with her delay in gross motor skills, which can be frustrating, as well as some eating issues, but other than that, I've had very few "this isn't fair" moments. (There were MANY of those in the weeks and months following Clare's diagnosis!) However, I did have one hit me the other day.
We went to a Halloween party. The other kids were from Jamie's playgroup from when he was a toddler. Now there are younger siblings as well, so there were nine little ones ages 3 and under at the party. Clare was not the youngest, but she is the only one who is not mobile. She seemed to have fun, but didn't really seem to get what was going on. She did not get to participate in any of the activities (other than eating pizza and donuts), but I think she enjoyed watching (if watching intently and smiling means having fun). We lined all the costumed kids up to take a group photo in the living room (much easier said than done!). After all the craziness and sitting still, the kids decided they were done with taking photos, and they all scattered. I was in the kitchen by this point. When I saw all the kids streaking by, I went back into the living room, and there was Clare. Sitting on the floor all by herself in a big, empty room, when before she had been surrounded by friends. She just looked up at me and raised her hands up to me. My heart broke just a tad bit more in that moment. Those are the moments that catch me unaware. I think I'm doing good and accepting all this, and then it just all gets to me again. I know Clare is not always shut out or set apart or different, and I know that this happens to all children at one time or another, but it is still so incredibly tough on a mother to see. Maybe because I KNOW without a doubt that Clare will have these moments in the future. They are inevitable. One of the saddest things I saw on the videos we watched about Williams syndrome is that the older individuals know they are different. They talk about how it is hard to make friends or fit in. They may not be considered smart or intelligent by typical standards, but they are definitely smart enough to know what's going on. And I wish I could shield her from all that. We have this gorgeous, happy, little girl, and I do not want her to know any of that fear or pain or feelings of being different that I know she is going to experience later in life.
I'm a happy-ending kind of girl, and this story does have a happy ending. Just as I was stepping close to Clare to pick her up, we were once again surrounded by a bevy of kids. Instantly, they were all over Clare. She was kissed and hugged and squeezed. Clare basked in her shower of love, and I finally had to step in and rescue her before she got squashed too much. Because she IS loved, and that's also important. The children may be young, but they know that Clare is something special, and they love her. We all do.