Monday, October 23, 2017

I Never Thought...Day 2

This week for Down syndrome awareness month, I'm going to share some moments that I never thought would happen when I heard my daughter had Down syndrome. The way Down syndrome was presented, I was sure her life (and therefore mine) would be limited. I pictured a million scenarios after her diagnosis, but I never imagined she would have such a full life with amazing experiences.

When I was told of my baby's Down syndrome and associated problems, I never thought I'd see my daughter grow up to be in a pageant that allowed her to shine. First, let me say that I'm not a pageant person, but our town does have a local pageant each year for the annual Fall Festival celebration. I never felt I could sign Jaycee up for the local event because she couldn't speak at that time. Participants had to be able to answer questions for the competition, and I didn't want to be the only mom on stage interpreting her signs, gestures, and vowel sounds. There was a tiny, tiny moment in which I wished my daughter could do this like so many girls her age, but it just wasn't to be. Or was it? 

Through social media, I found out about Butterfly Dreams, which hold an annual pageant in my state for individuals with Intellectual Disabilities. When I came across Butterfly Dreams, we had just gotten home from a hospital admission with Jaycee. I needed a positive moment to replace the one Jaycee had just endured. So, I signed Jaycee up for it, and a pageant mom I became. 

For the past two years, Jaycee has participated in the yearly Illinois Butterfly Dreams pageant. The pageant is a big production and aims to provide the participants with an amazing experience. There's an opening number with a group choreographed dance. There's a short interview on stage where participants answer questions using their devices, gestures, speech, or an assigned PAL speaking for them if needed. An evening wear portion allows all the guys and gals to look their absolute best. There is also an optional talent show too. The first year, we watched the talent show to see what everyone did. The second year, Jaycee played her tambourine to a favorite Christian song. She rocked it out by the way! The pageant night is a joy to watch and is so much fun for the participants. 

Jaycee waving at the crowd after answering a question with her communication device.

Every participant receives a trophy and a crown at the end. 

Some people may think a pageant for people with Intellectual Disabilities is not that important. But, it has made a lasting impression on my daughter and gave us a new bonding experience. Jaycee and I had a reason to go dress, shoe, and jewelry shopping. What mom wouldn't like that? This year, we shopped online for her dress. Jaycee chose the pink color, and she was so excited to try it on when it arrived in the mail. The whole family helped Jaycee's tambourine routine practice for the talent show, and we all were excited to see her shine on stage. Jaycee even had her grandparents and a few cousins in the audience clapping and cheering her on.

If anyone new comes to our house, Jaycee will show them her trophy and crown from the pageant. She will sign butterfly and try to tell you what she did. Jaycee had fun, and she loved dressing up as much as I loved seeing her dress up.  

Jaycee in evening wear this year. She loved her pink dress. 

The princess and her family this year
So yes, I never thought I would see my minimally verbal daughter with Down syndrome have an opportunity to be in a pageant, showcase a talent, answer questions in front of an audience, and enjoy the spotlight. But, she did! 

Her life hasn't been what I thought it would be, and that's a good thing!

Watch the video of her talent performance HERE!

Many thanks to Butterfly Dreams board of directors and volunteers for giving people like my daughter this opportunity of a lifetime. 

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