My husband has asked me to write you for sometime now. As we contemplate life and the future of our children he always suggests a letter to you. He wants me to communicate that #Iamnotsad. I am using a little tool called a hashtag because that is how we people communicate these days. I want this letter to you to be searchable so that you can use it as a teaching tool. I don’t want you to keep this to yourself. Please share.
You are probably wondering where this letter is going. Here goes. Today is World Down Syndrome Day and I thought today was as good a day as any to let you know. 4 years ago my daughter was born with one measly little extra 21st chromosome. That chromosome was a complete game changer for her. Because of that teeny little extra piece of genetics she will live the rest of her life as a person with Down syndrome. Even though we as her parents advocate for you to use her name first, you still so often forget and refer to her as a Down’s child. Although that drives me crazy I want you to know that #Iamnotsad.
My daughter works every day to have stronger legs and clearer speech. She often engages you with her crystal blue eyes but because of her developmental delays you look away. I want you to know #Iamnotsad.
We dream for her the same way we dream for her brothers. We strive for independence and employment. We hope she develops a passion for something that makes her really happy. I look forward to watching her daddy walk her down the aisle in a beautiful wedding dress. Even though in your eyes these dreams seem unrealistic. #Iamnotsad.
Her Dad and I are not sad that our daughter has Down syndrome. We don’t even see that tiny extra chromosome most days. We see her smile and her feisty personality. We think she is beautiful. In fact I would take almond eyes any day of the week. She is Grace to us. That is what we call her. No need for a description, just Grace works perfectly for us.
If you are asking yourself why I am writing this note, I am getting to that. I would like you to go out and spread the word. I want you to let your people know that #Iamnotsad because I am raising a beautiful young girl with Down syndrome. I want you to tell your people that they do not have to look away. Let them know that you do not have to fear her or us. We have the same skin we did 4 years ago. It takes some time to get where we are but we are there and we are definitely not sad.
In fact we are very happy. We have the opportunity to raise both boys and a girl. We have the opportunity to look at the world through unfiltered glasses. We see everyone, all the time. We are compassionate toward others. Now that you know all these things you have to be realizing that I am telling you the truth about our feelings. #iamnotsad.
I am not here to say we live happily all the time. There are moments in our weeks that bring sadness but that has nothing to do with our daughter. Our worries come from you and the way you measure value in others. We lay in bed at night concerned about your acceptance of all our children. We see you judge others based on ability and that is what makes us sad.
So today on March 21st, 2014 we celebrate our loved ones that just happen to have that 1 extra chromosome. Today that makes them extra sparkly and exciting. It calls for a party with crazy socks and funny instagram pictures with #WDSD. We celebrate how far we have come as a family and how far we plan to go. I would love for you and your people to join in! Play a little air guitar and lift those hands. Celebrate what makes us all unique no matter what that is. Don’t make it about you versus us. Make it about everyone. Every single person who is lucky enough to call your big self their home.
Let this be a reminder to you that parents of children who happen to have that extra chromosome are not sad. They are very very happy. Please don’t ruin it for them. Let them be happy. Let them dance in the rain if they want to. It sure would be more fun if you jumped in too. I can see it now, a whole world of people drenched with their hands in the air laughing and celebrating life – together.
Sincerely – Katie