Every year I think about what I will write on World Down Syndrome Day about where I am, where my daughter is and where our family is going as we navigate the diagnosis of Down syndrome that we received a little over 6 years ago. Over the years my posts have changed. They started out vulnerable, celebratory and sometimes emotional. Each year I get stronger, we all get stronger. When Grace was younger these days were important to me. I often wondered why? What was needed about a day that says, “hey world my child is different”? I guess it had everything to do with my own feelings. The insecurity about her future, our families future and I thought if I personally brought attention to her difference that others would be more accepting. I don’t think Grace ever needed the celebration, nor did she ask for one. I think she has always wanted to be a kid. To have good friends surrounding her and have the feeling of love and security just like her brothers. Most of all I think she wants to be a part of the world she lives in. As a little girl, and not someone different from everyone else.
So here I am today. Sitting in my favorite spot in the kitchen of our family cottage wiith life just happening in ways that I am not always in love with. New challenges, new worries, coupled with the excitement of being with friends and family on spring break next week.
When I have personal bumps in my own life I try and evaluate how I am handling the curve balls that come barreling at me out of no where. I often think about my daughter. As I personally get stronger I question if I am handling her future with the care I always hoped too. I search for better ways to teach her the confidence she is going to need to be better and do better than I have. This year I determined that means not celebrating what makes her different.
The answer came in this video a new friend had shared with me. It doesn’t speak directly to having a disability but it doesn’t have to.
There is so much truth in the hashtag #nomorelabels. I mean, I can not image a label following me around every hour of every day of my life like she and many others have. I don’t think anyone wants to be defined by a label yet we continually look for ways to celebrate those labels.
You know what I am talking about right? downs, downs kid, Down syndrome, special child, special needs, disabled, downs girl and soon to be downs women. Those are just the tip of the ice berg. We all know the additional labels that come with what makes her different. For myself, for her, for my family I feel like continuing to drawing attention to her diagnosis is to continue to feed into more labeling. Politically correct labels and just down right mean labels, all of them.
It is 2016 and we know so much more. We are all doing so much more. I ask every day for the disability community to be seen as valuable consumers. Another Mom asks the fashion industry to take notice that this community deserves to have clothing produced and sold in big box stores that will fit and work for them. There are parents working to create more opportunity in colleges and even more parents fighting on Capital Hill for more employment opportunity. Because employment leads to even more independence. We are all raising stronger and more capable humans that will be in the position to control their own lives as well as live them they way they want to.
So I choose to check myself this year. I choose to remind myself that if I want more I need to encourage my girl to be who she wants to be. Encourage her to slide down an even bigger slide. That is what she wants to do anyway.
I will focus less on continually reminding her that she has this label that defines her as being a person who will probably not achieve what her brothers will, because that is no longer true.
I often talk about Grace over coming Down syndrome. I know that is not realistic. She will have her disability for the rest of her life. What it doesn’t mean is that we will not continue to work at over coming some of the things that come along with that diagnosis just like everyone else. But one thing is for sure, I am not going to label her anymore.
She is Grace and Grace she will always be.
So celebrate YOU this week, this day and this year. We sure will. In fact we don’t even need a reason to celebrate!
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