Down Syndrome. A term that was so rarely brought up in Alberta and yet a vibrant underlying thread in our everyday lives. The hours I would spend in the car driving to and from Calgary for “Down Syndrome”. The friends that Ella had because of “Down Syndrome”. The friends I had because of Down Syndrome”. The aids, the therapists, the appointments. I have almost begun to forget that Ella has Down Syndrome because, as I have mentioned it is not a part of our lives here in Cambridge.
But October is Down Syndrome Awareness month in the United States and there are things to be said. Why? Because Ella still does have Down Syndrome and regardless of whether I notice it or not, others do. And regardless of whether the gap between her and her peers remains the same or gets larger, there will be judgement. Judgement that could be hurtful and will be out of ignorance.
So we fight against ignorance. On behalf of our children, the stars of our lives and our heros, we educate, we answer questions, we share the victories.
And I think to myself if I had a stage in front of thousands of people, listening with unhindered attention and anticipation what would I say? What do I want the world to know about Down Syndrome?
It’s not scary. When I had Ella, I was terrified. I was terrified of the unknown. I was terrified at the thought of my child seeing heaven before me. But it’s okay. It’s all okay and it is part of life: life with or without Down Syndrome. And that life is a blessing. And it is a life worth living: a life that can be full and rewarding. A life that will bring joy to so many people.
But too many parents don’t know that and they find out that their child might have Down Syndrome and abort. They do not see the value in that life – they do not think it is a life worth living and/or their comfort is of greater value. A life worth living for who? For you, the parent? Who might have to work a little harder, who might not get to brag about their child being the first to walk, or talk or get into Harvard? Or the life who doesn’t have the power to choose.
Friends, I was not given Ella because I am “special” (those who know me well, know how much I detest that word) and I am not her mom because I am “stronger”. I am her mom because God chose to bless me with a child who just happened to have 47 chromosomes. And like any child entrusted to me, I care for her and do everything in my power to raise her in a way that pleases God.
What do I want you to know? Most of you who read my blog already know. Because you have read about Ella, you have seen our lives and how wonderful they are. So what do I want you to know?
It’s up to you- In how you love your neighbour, respect your enemy and seek justice for the oppressed.
I am not going to blog about DS everyday this month because I feel our lives are a clear enough testimony of what life with DS looks like. But there are many out there who will. They will fight ignorance, raise awareness and one blog at a time change the world’s view of Down Syndrome. Here are just a few:
I am sure there will be more so check my sidebar for posts from some amazing women with amazing stories.