She’s 39 now, my Lauren, and tonight is the big Night to Shine Dance (sponsored by the Tim Tebow Foundation). We’ve been doing all the things that girls do when you prepare for prom or a formal dance. Fittings, alterations, accessories, hair and make-up. She’s as excited about this as she was about the prom (which she did attend) in high school.
I’m thinking about the good things. The celebrations. The pure joy. The way she finds magic in everything; Christmas, birthdays, Disney… She still believes in magic just like it was when she was 5 and she refuses to believe there is no Santa.
These are the things I want to tell you about her. I’ve told the hard stuff in the past. There were lots of really hard things. But this is not about that. This is about who she is now. The well-mannered, pretty, kind adult.
She works so hard at life. She does the daily exercise. She tries to stick with the PWS program. She tries to get along and be cheerful. She still says yes ma’am, please and thank you.
Some days are better than others when it comes to food-seeking, OCD, and the other PWS things that I choose not to mention on this special day.
I used to make plans and set deadlines. I did that lots of times. Plans to have her in independent living before my husband retired. Plans for life living with her best friend. Plans to live in a specialized PWS group home. Those things didn’t work out. I am sixty and my girl is still with me and I cherish every single day. Even the hard ones, even the stubborn ones…. Even the ones when I fail her.
She getting into her formal dress now. Her caregiver is here, helping her. I hear them chattering. We’ll drive over and pick up her best girlfriend in a few minutes. I wish you could see them together. No two women ever enjoyed each other’s company more. Kitty is the ying to Lauren’s yang. And they will dance, and giggle, and gossip till the clock strikes midnight. And there will be pictures and memories and more joy.
And tomorrow I still won’t know what the future holds and I will still remember the hard things that happened because she was born with a rare diagnosis with life-changing consequences. Both of us will be a day older. And I will do my very best for her, as she always does for everyone else. And I won’t think about what happens 20 years from now because today is all I can manage.
~ Submitted by Melanie, Lauren’s mother