Yesterday was World Down Syndrome Day. I wanted to write a post but time escaped me. And my thoughts escaped me. I wanted to do it justice. I wanted my words to somehow transform people’s minds into knowing what I know. What do I know?
A couple of weeks ago, my husband’s mom went into hospital for a routine surgery to remove part of her bowel. She had diverticulitis and the pain had tormented her for months previous. Of course, for those months, they didn’t know what it was. Anyway, after she had the operation, she got an infection, as is often the case with this type of surgery. Three weeks later, her body is still riddled with infection, she is intubated and barely responding. I keep thinking, I wonder if they had any idea, if they ever thought that three weeks later, she would still be in ICU precariously hanging onto life. Of course not.
But life rarely goes as planned.
Moments after Ella was born, I looked into her big black eyes and I knew. And a thick black cloud settled over my head and I could never look at her with the purity that comes right after birth ever again. I look back at pictures of her and of me in the days that followed her birth. My eyes are red and puffy and there is fear.
Because the unknown is so incredibly scary.
Then I took a baby step because, honestly, I couldn’t go back and she needed me to move forward. I recall, just now, how Ben and I would say that to each other. One step at a time. One day at a time. I am sure that is how Ben’s dad feels because what more can you do? We don’t have crystal balls that show us what our future holds. We can’t know where the rough patches will hold us back, or the joy that will propel us forward. Ben’s mom and dad are still at the beginning of this chapter in their journey and it is hard to know how to move forward. And I am not saying that the two situations are any more similar than that they share a common fear that is born when things don’t go as planned.
When Ella was born, people would come up to me in the post office and start weeping. “I’m sorry,” they would say. Their fear would cause us to second guess our celebration and I guess I just tell you that because, in a way, that is how I feel. How can I write about celebrating World Down Syndrome Day, how can I write about anything, when this black cloud lingers?
Well, I can move forward with hope, which is exactly what we had to do with Ella and while there are times when the same fear, (fear of the unknown), still creeps up, I can confidently say that I no longer fear Down Syndrome and the fear only comes from not knowing the future, but then again, how can we know anyone’s future – Ella’s, Jakob’s, Audrey’s or even my own?
Down Syndrome is what makes Ella who she is – a beautiful, vivacious and charismatic little girl. She does not let society’s expectations of her keep her from being who she is. Today, I watched as she helped her friend put on her snow pants and zip then up. Thankfully, her friend is patient enough to allow Ella to do this. But this is who Ella is. When I asked Jakob about things that Ella was good at, he said, “making friends”. She is empathetic and kind. She makes sure to say hello to all her friends when she goes into school and watches carefully as they all prepare to leave. She is a good big sister and is a big goof. She loves to make people laugh.
Now you tell me, what is so scary about that?
Friends, Down Syndrome was not in Ben and my plans, but it was just as God intended. That is why we celebrate World Down Syndrome Day on the 21st day of the 3rd month of the year.
I hope that through Ella, you might see Down Syndrome a little differently and if you do, please tell me. I love it when I hear that Ella has inspired someone and so does she.