Today is March 21st, 2015 and in the community of people who know and love someone with Down syndrome and those who have that 1 extra chromosome it is a special day. It is a day that being genetically unique is celebrated. I celebrate with them. It is funny how emotions go. It has been a journey since Grace came into our life. We love her as much as we love all our boys but the extra chromosome that came with her is something that takes time to understand.
Over the years this day has had a lot of different meanings. In the beginning it was a day that helped explain what that extra chromosome meant to our daughters future. We felt connected to a community of people who were sharing our journey. It felt good to have the extra virtual hugs every year on this date. The virtual, “We get it’s” and “We are here to remind you that everything is going to be just fine.” Last year I really wanted people to know that “I wasn’t sad” with the hashtag #iamnotsad because I wasn’t and I am still not sad. We remain extremely proud of our family and that includes all our children.
This year has been different for me. I am not sure what has happened but I have not been interested in talking about Down syndrome. I have had many conversations with friends about the fact that I don’t want our life to be defined by Down syndrome and that means not talking about it as much as I have in the past. I guess my heart wants to live outside our house the same way we live inside our house. That is with our 6 kids not dwelling on the “can’ts” and focusing on the “cans”.
I also have to admit that over the past year there have been days that I have also said to my friends that our life has everything to do with Down syndrome. There have been moments when we as a family can not deny that one of our children is different and because of that difference there are opportunities that will be denied to her. As painful as those moments are they are also reminders of why days like this are important.
So I sit here conflicted. I sit her wanting my daughter to have the same opportunities as everyone else. I sit here fueled by those feelings to continue to push for a better future for not only her but all young adults living with a disability. I have the blinders off and my sleeves rolled up and will let that worry, fear and disappointment fuel something amazing. I want the bar raised. I want opportunities to present themselves to everyone who are looking for them. I want more young adults with Down syndrome in college. I want more programs that offer valuable training so that Grace can go out and make a real living. I want for her what I want for my boys.
I made a commitment Jan 1st to really live the change I want to see. That is a big reason you have not heard from me here regularly. Rest assured I am working. You can keep up over at changingthefaceofbeauty.org and across their social media channels. I am proud to say we have 78 companies across 4 countries committed to helping. Everyone one of those 78 companies are creating and sharing integrated imagery. Everyone of them is sending the message to the world that they see all people regardless of their ability. That right there is change. That is hope and those companies will change the world.
So bring it on 2015. I am not sure where I will be on the journey next year on March 21st but I sure hope that tiny extra chromosome continues to provide the inspiration I need to push through the fear and uncertainty it brings and ask for opportunity. I hope it continues to make me weak enough in the knees to ask for change.
We love The Mighty and are proud to be part of their #WDSD15 message!
Special thank you to Ac Moore for committing to using models of all abilities in their advertising and most of all for making the announcement today!
If you would like to support the dreams behind Changing the Face of Beauty and rock our cute little logo you can pick up the sweetest shirt from Freckles + Kitty over on Zulily today. They are available today – tuesday and proceeds will help us continue this mission! And don’t forget to drop them a line and let them know how much you appreciate both companies committing to Changing the Face of Beauty and including models of all abilities. We are really proud to have them on board and we couldn’t move forward without brands like this!
Happy World Down Syndrome Day to you and you and you.