A few days ago a question was posed on one of my online parent forums.
The question was, "Do you celebrate Down syndrome or just celebrate your child?"
It's an interesting question. I know a number of people who love their children with DS, but don't love Down syndrome. People that aren't really ready to celebrate the presence of DS in their lives. (For beautiful and poignant words on this, read this post by Gillian Marchenko.)
It's true that Down syndrome comes with challenges. Some of these concerns can be significant: medical and developmental concerns, concerns about inclusion and acceptance, prejudice and "ableism", and each parent's individual process of coming to terms with their child's diagnosis.
Most people don't wish for their unborn child to have Down syndrome. Many, if not most of us experienced grief and disappointment when we learned of our child's diagnosis. And we're all in different places in our feelings about it. Even for parents who feel that they've moved past that grief, sometimes it still bubbles up, surprising us.
No, I don't think about it all the time. No, I don't always look at her and see it. Of course so much of the time she is just Cora to me. But I guess I am early enough into parenting her that I still think about it a lot. There always seems to be something that we are working on, or working through, or trying to accomplish or resolve that is affected by the fact that she has DS.
Because I don't have any other children, I don't really have the perspective to know how much DS affects my parenting and my feelings. I don't have the experience to know how much of my feelings come from simply being a parent or whether they are because I am a parent to a child with DS. I can't tell you that parenting Cora is not much different than parenting my other children. In fact, when we consider the idea of having more children, I admit that the idea of having a child without a disability seems like a foreign and even intimidating prospect. I feel like my perspective has been so shaped shaped by the fact that Cora has DS that I can't envision parenting without it.
But as Cora's parent, I am in love with Cora, Down syndrome included. I don't love her in spite of DS and I don't love her because of DS.
I just love her.
Down syndrome is a part of her, in each and every tiny little cell. It affects many aspects of her life, and in turns, affects my life, as well.
It is part of what makes her who she is. I can't imagine the idea of seeing her without it, because then she wouldn't be her. So, when it comes down to it, that means that I love DS. Would I take it away if I could? I don't think so. I'd consider taking away some of the challenges, the heartache, the health concerns, sure. And I do still have my own moments of sadness here and there. But would I take away something that is so much a part of her? Especially since I have truly come to appreciate so many individuals with DS?
Whether it's a stereotype or not, I definitely find something valuable and important in people with DS, and I have learned to celebrate it.
As one of my favorite blogging friends, Meriah at With a Little Moxie has written, "And that is perhaps the best gift – the most unique gift – that people
with Down syndrome bring: gifts from their heart that have the potential
to make the world captivating, caring, delightful. Exquisitely unique." (Check our Meriah's published article in Parents or read her blog for more of her insights.)
I celebrate our community, and my incredible group of friends, online and in our local community. I celebrate this life-changing, inspirational thing that has entered my life.
So yes, I'd say that I celebrate having Down syndrome in our lives, even if it's not always black or white.
What do you think? Do you celebrate DS?