Thursday, March 21, 2013

Happy World Down Syndrome Day and Thank You

Today we are celebrating World Down Syndrome Day, a day to think about individuals carrying that extra chromosome and respect what they have overcome .

I feel like this is a place where I should get up on a soapbox and rant and rave about how my daughter doesn't get enough respect in this world, but the truth is- I don't know of a more respected or loved little girl.

I know her number of daily contacts is rather small right now- family, friends at church, friends from gymnastics/playgroup/NICU/other places, friends from preschool, random strangers in the grocery store. But honestly I can't think of anyone in Addison's life who has shown her anything other than true admiration for everything that she overcomes every day.

She is encouraged, smiled at, fought over, cherished, "just one of the girls", loved.

And so I want to say thank you. (I totally don't do this enough.)

I want to thank all of you who looked at my new little baby with her face covered in tubes, told me that she was beautiful and perfect, and truly believed it.

I want to thank all of you who then walked every step of the way from 'there' to 'here' with us.

I want to thank all of you who let me be open and honest about how Down syndrome has impacted our lives, never judging or saying an unkind word.

I want to thank all of you who teach your children to treat Addison just like any other child- including her, being sweet to her, and expecting the same behavior back from her.

I want to thank all of you who have shouted louder than I have when Addison accomplishes something new and amazing.

I want to thank all of you who tell me often how much hearing about Addison means to you.

I want to thank all of you who rejoice daily over Addison's life, almost as much as we do.

Addison is surrounded by support and love that goes much deeper than our small family of four. And I am beyond grateful.

I joked with Aaron the other day that my blog is 99% people checking up on Addison and 1% who actually put up with my writing nonsense. And that's OK. Because I feel that by putting Addison front and center here on the blog we spread Down syndrome awareness every day. You all let me do that with so much encouragement shouted my way as well. Thank you for that.

If you don't know anything about Down syndrome and you are visiting here for the first time? I thank you too. I do love blog visitors. But just so you know what I'm talking about...

Addison is different from most little girls because she has a third copy of the twenty-first chromosome. This is called "Down syndrome" (upper case D lower case s) because of the scientist who was the first to observe this to be true- John Langdon Haydon Down.

Because of her low muscle tone (hypotonia) and extreme flexibility, her first three years of life included a lot of therapy to help teach her body the correct way to achieve milestones. Children with Down syndrome accomplish all of the things that a typically developing child do. It just might take them a bit longer. To have the help of professionals through Early Intervention was hugely beneficial to Addison.

She is not suffering. She is living a normal life full of the ups and downs that you would find in any little girl's life.

Parenting a child with Down syndrome includes as much good as parenting any other child.

Last year I published a short ebook detailing our journey through the diagnosis and her first couple of years.

We have come a long way since then. 

Our lives are not all about Down syndrome. We are a happy family with two toddlers who often forget that there is even anything special about us at all.

With that being said, I raise my coffee mug high and wish you all a Happy World Down Syndrome Day. We celebrate every day. But today is as good a day as any (3/21 representing the third copy of the twenty-first chromosome) to celebrate it out loud.
(thank you, Aunt Andrea for editing this picture!)

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