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
Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.