If We Were a Movie, I’d Have a Pity Party

Six years ago when Hannah Montana was singing “If We Were a Movie,” I had no idea that God was sending me a direct message.  Rachel loves Hannah Montana. She has separated Miley Cyrus and Hannah Montana into two completely different individuals. Rachel has a very strong moral compass. In fact sometimes her strong sense of right and wrong creates challenges. There could be worse things like being boy crazy.

Rachel loved that song. When she met Joe Meares at the NDSC Conference, he sang it and danced with her.

ndsc joe & rachel

A lifelong friendship was formed, and she invited him to sing it with her at a Down Syndrome Affiliates in Action “AIA Idol” event.


The two of them were quite the hit. The girl loves to dance and has a few people who love it like she does. She and Joe and “Lexi” had a tons of fun.

leslieracheldance aia

Silly me, I thought this was all about a song about movies, but I didn’t know then that Rachel sees life like a movie. Last summer, I heard Dr. Dennis McGuire say that is often true in individuals with Down syndrome. It has only been in the last week that I can see the “If We Were a Movie” moment was a predictor of the future.

Like many teen girls, Rachel is boy crazy. Rachel has always loved boys. When you ask her what her favorite part of Cinderella is, she responds when the Prince kisses Cinderella.  She has always been that way. When the other girls go “yuck,” she would say “How sweet.”  Someone told me the other day that she is a romanticist. It is unlikely that anyone would characterize me in this way. There is challenge number one.

Last week, she got her feelings hurt. She overheard a boy saying that she was not his friend and other not very nice things. Before you get all worked up, she had done something that caused this to happen. I’m not defending what the boy said. He was wrong, too but it was bound to happen. She fantasizes about being in love with these boys and then tells her “so-called” friends that she is dating the boy. You can imagine where it goes from there. So when I posed the stupidest question you can pose to any teenager “why?” – I did not, do not and will not get a fulfilling answer. She told me that she is a drama person. I figured that out without her telling me. Then she told me that it was hard for her, and I nipped that in the bud. I told her she wasn’t blaming this on Down syndrome. But truthfully, adding Down syndrome to the mix does make things even more convoluted. Finally, I got this answer, “It just popped into my head mommy.” Then is when I really felt I understood that Rachel does see her life as a movie. Where I can freeze and isolate the frames, she has one long and continuously running Disney movie, “Rachel in Love” or “Rachel’s Teen Beach Movie” or better yet, “Rachel Lives the High School Musical.” This was simply another scene. In the end that didn’t get me any better interrogation results but at least we had a conversation.

Even though she did bring some of this on herself, sometimes I would like to say to some of other players in her movie, “Really, she has Down syndrome.  What’s your excuse?” Of course they are mostly guilty of being middle school kids. Down syndrome or not, it is just a hard time. But some days, I do just want to have my own little movie called “Jawanda Has a Pity Party.”



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One comment

  1. Is no fun when our kids have issues, Downs Syndrome or not. Your heart just wants to heal it, but it is life and sometimes all you can do is hold your crying child. Been there still doing that.

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