Today 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.
As 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?