I don’t want you to just accept my daughter. I don’t want you to just be aware of my daughter or her diagnosis. I want you to love my daughter. I want you to be her best friend, her biggest fan and her advocate.
October is Down Syndrome Awareness month. I have had five years now to think about what the word “awareness” really means and what value there is in devoting a whole month to Down Syndrome awareness. I suppose in a sense, this month is for everyone out there who still has no clue about what Down Syndrome is – a chance to tell them that it isn’t something to be afraid of – that Ella is not sick, or stupid or retarded. But I would be lying if I said that was all that I wanted…because it’s not.
Ella just started kindergarten. The other children in her class might accept her; they might tolerate her incessant wandering and unintelligible speech, they may even accept sitting beside her. But that’s not what I want. In fact, if that were the case, I would be heart broken. Children show us the truth. They take situations…and people for who they are, not for who we have made them out to be. It would seem to me, that the children in Ella’s class see Ella for Ella. They don’t know what Down Syndrome is. They don’t know what a chromosome is or what a Palmar crease looks like or why heart disease is such a big deal. All they know is that Ella is fun and a good friend who just happens to be difficult to understand at times and has trouble paying attention.
Children don’t say things like, “Isn’t she always supposed to be happy?” or “I’m so sorry you have to live your life suffering” because they can clearly see, Ella is not always happy and yet she clearly isn’t suffering.
Over the past two weeks, I have had the joy of watching the awareness move to acceptance and then to friendship. Two nights ago we attended the school’s “Welcome Back BBQ”.
Quietly, I watched as a little boy asked Ella to play hide and seek with him. She dutifully counted to 10 and then pursued him until she found him. I watched as two of her classmates called her over to play: they ran, they chased, they laughed.
Quietly, I listened as Ella’s teacher told me about how, when another little girl was crying in the lunch room, Ella sat beside her, consoling her, not by saying anything but simply by rubbing her back. And I listened as I heard of how her and another little girl giggle endlessly as they play in the classroom.
Friends, to be honest, these children are entirely unaware and yet, they accept, they befriend, they see Ella for who she is. This, this is my hope for Ella and for the thousands of individuals living with Down Syndrome.
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