Strange Music

 As I’ve mentioned before, Kellyanne is really into music and dancing. Every night after she takes her pills, she gets to listen to “the speaker” If its daddy’s phone, she’s listening to “rocker “ music. If it’s my phone she’s listening to 80’s hits, not that I choose 80’s hits, it’s just a playlist she likes. As I sit and listen to these songs of my youth,  it takes me back in time. I remember listening to this music in high school and college.  It was background noise at the time, Music has never been a big part of my life. I like it enough, but let’s just say, I can go on an 8 hour car trip without the radio. Funny how now when I listen to it, memories come flooding back…friends, places, events. I smile at the memories.  I think the music has more meaning for me now than it did back when I was younger. It has a way of taking me back to a time where life was just a little bit simpler which, I have to admit, is a nice little escape. 

Don’t Mess With My Dancing!

Kellyanne and I are by ourselves this weekend. Michael and Eilís went to visit Michael, Jr, in Providence. (Go Friars!! Great win against St. John’s.) We’ve spent most of our time listening to music, her favorite activity as of late.  Today, I decided to take Kellyanne to ZamDance which is an amazing program run by an amazing woman. It’s an hour of music and dancing for individuals with special needs. Very high energy! The bonus was that Kellyanne was happy to go. Lately she doesn’t want to go anywhere, so I considered this a win. We went and met some wonderful people and Kellyanne was loving showing off her stuff. As I was watching her dance, I noticed her bending at the knees and slowly going back. Luckily, I caught her before she fell and was able to drag her to the side. I was immediately flanked by very caring individuals who offered assistance. Kellyanne got it together and didn’t want to leave so she sat in a chair and clapped to the music. Eventually she got up and danced with another mom holding her hands. She finished out the class and wants to go back next week. While seizures are inconvenient and disruptive, they don’t stop her. Go, Kellyanne, Go! 

Love Shack?

 So, Kellyanne’s new favorite song is Love Shack. She plays it repeatedly, and for anyone who knows her dance moves, she spares none. Many, many years ago, the house that Michael lived in was referred to as “The Love Shack” Not quite sure how it actually became to be known as that! Less than many, many years ago, Michael, his cousin Karen, and I had quite the trip to NOLA. There was a bar called the Cat’s Meow (a karaoke bar). After too many Hurricanes someone got it in their head that we would perform The Love Shack, AND, have it videotaped! Not quite the B 52’s, but quite a performance nonetheless. I need to find the video and share it with Kellyanne. Being her grumpy self lately, she probably won’t find it amusing, unfortunately. Her grumpiness is rather unnerving! We get it mostly in the morning and at night. Maybe I’ll rewrite the song and call it The Scream Shack…

7 years Later…

 So it’s been 7 years since I’ve posted about Kellyanne. A lot has happened in those 7 years! Kellyanne will be exiting from Damascus High School in May. She’s been there for 7 years. That’s a long time to be with the same teachers and friends. I dread the day it ends. She ( and I) will miss them terribly. The plan is for us to move to our house in St. Mary’s City where she will participate in an adult day program through The Arc. It will be a lot for her to take in, moving to a new home in a new town, spending her day somewhere other than DHS, making new friends, etc. major life changes ahead which is going to be quite difficult for someone who resists change. While I’m excited about the move, I’m worried about Kellyanne. I just have to hope and pray that all will go as smoothly as possible. 

There’s so much more I could say about what’s been going on with Kellyanne lately, but I always wrestle with the thoughts of her dignity being respected and  not wanting to sound like a complaining parent. I have to admit that writing has always been an outlet for me. I could write in a private journal but I want other people who are going through what Michael and I are going through to hear our blessings and our struggles. There are a lot of people out there. I remember when she was first diagnosed, I went searching for anything I could find. I want people like me, who was so thankful when I stumbled upon information or a blog about Kellyannes’s diagnosis, to find someone else in their shoes.  That is my hope and prayer…to reach others in our position. Perhaps I will find a way to share what’s going on and protect her dignity at the same time. We will see.

God bless,

Beth