Happy Birthday and I’m Sorry You Don’t Have Down Syndrome

IMG_0763Today is my Adelle’s first birthday! She is whip smart like her brother, and fiery like her sister.  She loves sneezing and dancing and she thinks that the proper farewell to anyone, anywhere is “Bye-bye, Daddy!”  When she looks at a book or watches a video, she doesn’t sit – she takes a knee.  Delle is a serious observer, just like her father, watching and absorbing everything around her.  She both worships and fears Evelyn, who is her only playmate and her only persecutor.  I am pretty sure she thinks Brady is just some little guy who happens to live in our house.

Last night, after celebrating World Down Syndrome Day with our local Down syndrome association, I came home to bake her birthday cake.  I made her the same cake my grandma made for me every year, at my request – a Jell-o cake.  As I enjoyed the sweet, strawberry scent that filled my happy, little house, I wondered how it will be for her, and her brother, growing up with a sister with Down syndrome.

I don’t mean that in the way you may think.  I don’t worry she will be a burden to her siblings.  I hope all three will consider it a privilege to love and support each other, as my sisters and I do.  No, my concern is that somehow my other children will feel…well…ordinary compared to Evelyn, constantly sitting in the shadow of her Down syndrome.

For instance, each March, we celebrate World Down Syndrome Day, and every October we build a Step Up team that is, essentially, a parade for Evelyn and Down syndrome.  Additionally, we attend fun parties and playgroups all because Evelyn has Down syndrome.   Then, we sit in waiting rooms at doctors’ offices because Evelyn has down syndrome.  If I add up the hours my children spend waiting in doctors’ offices…actually, I don’t want to.

IMG_0024As an adult who has survived adolescence, I know all the pains of growing up that Brady and Adelle will experience will be visited upon Evelyn two fold, if not more.  While they may occasionally be ignored, mocked or underestimated, Evelyn will face those obstacles on more occasions and, most likely, well into adulthood. I also believe they will be better people because they love her.  They will presumably be more patient, empathetic, and considerate than their peers.

However, they are children who can’t and shouldn’t know that yet.  Therefore, I worry they will constantly feel outshined by Down syndrome.  Good or bad, when people meet our family, it is probably what they notice first.  Somewhere in it’s shadow lie my other wonderful children, as unique and exceptional as Evelyn.  Just as I don’t want Evelyn to feel defined by her Down syndrome, I don’t want them to feel excluded by their lack of it.

Today, as I honor my last born by hanging streamers and balloons, lighting a candle, and singing with family and friends, I ponder a question:  In my quest to carve out a space for Evelyn in this world, how can I be certain my Brady Bean and my Delle-Belle know they are just as important?

Advertisements

6 thoughts on “Happy Birthday and I’m Sorry You Don’t Have Down Syndrome”

  1. One year old, already?! Happy Birthday Beautiful, Adelle! To answer your question… to be certain that Brady and Adelle know that they are just as important as Miss. Evelyn….. YOU already do that… and they know it! You spend time with each child, you include each of them in activities, You play with them and read to them and let the have dance parties. You hang up their artwork and you tell them how proud that you and daddy are of them! And every day… you tell them that they are loved! You are an awesome person, the best friend a girl can have and wonderful mother! You inspire me… and I know you inspire each of your children! Keep doing what your already do… and your children will always know how important they truly are!

  2. I don’t know what it’s like to have a younger child of a kid with a disability (yet!) but I do know that most of the positive and awesome things about my older son Sam is directly due to his empathy and kindness which developed from being the big brother to a sister with disabilities.

  3. My only advice is to re-read what your friend Kristen wrote!!! Well said! Each child brings a special gift to the world – and I believe the parents job is to help their children become aware of those individual “gifts”, talents, unique qualities. You already do this and do it well!! I guess you could declare a National Brady Day and a National Adelle Day. But if you do that, you would have to have a National Meredith, Daniel, Mary, James, ……… Well, you get the idea! 🙂

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s