I had the pleasure of attending the Chicago Region gala for Gigi’s Playhouse a week ago. Gigi’s Playhouse is an organization with over 20 locations around the nation and Mexico that provides free educational and therapeutic programs to families with children with Down syndrome. I was really excited to get dressed up for this black tie event and to have a night out with my husband. Nearly 1,000 people attend this event and we would only know one couple and not much about the organization. We would just go and smile and have fun and blend into the crowd.
That’s pretty much how it went but what happened inside of me marked another step on this journey of having a child with Down syndrome.
You see, prior to having Cody as a child I was not very familiar with the world of Down syndrome. And I didn’t have a desire to. I always felt uncomfortable around people with special needs unless I knew them well. This is not something that I am proud of. Even after having Cody, I have continued to protect this discomfort. I have my three new mom friends that have children with Down syndrome, but I’ve had little or no interaction with their children. I have not attended any events or classes where people with Down syndrome would be. My extent of embracing the Down syndrome world has been Cody and caring for him as a newborn with the complications that his Down syndrome diagnosis brings.
We started the gala being welcomed at the door by about 20 young adults with Down syndrome. They were lined up in two lines for all the guests to filter between. They greeted us with smiles and handshakes as we entered into the event. We proceeded to get our picture taken by a professional photographer alongside a young lady named Aubrey, who politely asked us if she could join in on our photograph. It was clear that this event was going to highlight the people that benefit from this wonderful organization.
The program started with speeches from various individuals with Down syndrome and they were amazing. They spoke with such confidence and were even witty at times. I loved when one young man demanded the attention of the room and encouraged cheering and applause! I was so energized by his spirit!
The group of individuals then took over the dance floor and performed a choreographed routine. Their smiles and joy lit up the room. They were so proud to be out there but yet nervous as we would all be performing in front of so many people. I stood there watching them and couldn’t hold back the tears. Tears of joy. These people are amazing and I am a part of this world now and it is good. It is really good.
After dinner there was dancing and you should have seen this crew tearing up the dance floor. It was awesome and so much fun! At one point a bunch of them jumped up on the stage and started playing the instruments and singing with the band. They were all having a blast and I was right there with them.
Today, March 21, is World Down Syndrome Day. Down syndrome occurs when someone has 3 copies of chromosome 21, hence the choice of today’s date. Prior to this year, I didn’t know this day existed and if I would have, it honestly wouldn’t have meant much to me. Yet, today I proudly acknowledge World Down Syndrome Day as I celebrate my little Cody. Down syndrome is a big part of my world now and I want others to be aware of how wonderful people with Down syndrome are. There is nothing to be afraid or to be avoided. People with Down syndrome have purpose and dreams and desires and talents and deserve to be loved, respected and embraced. So it is with great joy that I celebrate my first World Down Syndrome Day!! I hope you will join me in spreading awareness about Down syndrome and end the stereotypes and misconceptions that so many people have. I cannot wait to dive even more and more into this wonderful world!
CODY UPDATE: It’s been a few weeks since Cody’s surgery and overall he is doing really well. He is not eating as much as we would like and therefore is struggling with his weight gain so we hope to see that turning around soon. Also, at his 2-week post operation appointment the doctor noticed some fluid around his heart so we go back this week to make sure that goes away. He is a little fighter and a joy in our lives. His smile is contagious and he continues to be a very easy, compliant little baby.