When Emmy was first diagnosed, I found myself wondering how close to normal we could still be. I even wondered if Emmy could be all but “normal” and maybe people wouldn’t even know she had Williams Syndrome. I hate admitting that but I guess it was possibly a grasp at holding on to our old life. I found other people wanting the same thing though…and this truly doesn’t make me upset with them. I think it is just a picture of our natural tendency to fit in, to not want our loved ones to struggle with being different. When people would ask about her, they wanted to know how severe her diagnosis was, and ultimately what would she be like when she’s older? Everyone breathes a sigh of relief when the possibility remains that Emmy could be “highly functioning”. But what if she’s not? I had to ask myself how I felt about that and the answer surprisingly has come around to, “yes”. Not all at once, but yes, I am ok with the fact that Emmy might not be able to do all that I hope she can.
Pete and I recently went to a conference for parents and caregivers of kids with Williams Syndrome. The children and young adults with WS were there too as there was a weekend of activities planned for them. Walking through the front door of that hotel was a very emotional experience. I’ve never met anyone else with Williams Syndrome. As soon as we walked in, a little girl with WS who was probably about 6 or 7 years old, greeted us with a cheerful “Hello!!”. I had to catch my breath. It was like seeing Emmy in a few years. Individuals with Williams Syndrome have very similar facial features, so they are easy to identify, especially now after seeing it in Emmy everyday. As we walked through the lobby and down the hall, we saw more children, teens, and adults with WS and it was so overwhelming. It was sweet. But it was overwhelming. Then we went on to the many breakout sessions to learn about the latest research in their health issues, managing behavior, advocating for them, and planning financially for their future. It was a glimpse into our future…a real glimpse, not just a picture on a website or words on a page about what life might be like. That day we had to face the many possible realities of what lies ahead for Emmy…not for the first time or course, but it was the most poignant of those times.
All that to say, here is what having Emmy in our lives is forcing me to do: keep my hands open. She is not mine to control. That is up to Someone else. I have to do my absolute best to make sure she is getting the most effective therapy, the best health care, and the most positive environment at home. But ultimately, I embrace who she is no matter what. She is Emmy. And I hold her future loosely, learning to be content in any circumstance. I’m learning not to “white knuckle” my way through life. I can delight in the unexpected, the ordinary, the average, the unknown. It’s really hard. But it can be good too, an adventure of sorts and we don’t know the ending. Come to think of it, none of us know the endings…What I do know is I get to be Emmy’s mommy and she blesses us every day.
Thank you my readers for following what I call my “streams of consciousness” that do not always flow perfectly. 🙂 I hope they make some sort of sense.