This post is part 2 of a series in response to World Down Syndrome Day and a campaign entitled “Who I am.”
I read a book to Amelia occasionally. We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen. If you’re a fellow Ds mom, chances are you’ve read this book, cried huge tears, and probably wanted to burn it at least once. It’s a wonderful piece of children’s literature, and so the burning only comes into play, because…well, let’s just be honest: I never wanted to buy this book. And the feelings are sooooooooo real, and it’s sooooooooo much more real when your child is sitting next to you listening to your choking sobs as you try to stifle them. Amelia doesn’t understand it, isn’t aware of why it makes me cry (okay, sob), and that’s the way I like it.
She will never know a world without Down syndrome in it. Her sister was born when she was 3, and while Amelia will begin to notice Olivia’s extra chromie someday, it won’t make a lick of difference. “Olivia is my 4th best friend,” she says. Works for me. And, so, I suppose the above book was written more for the parent than the child. It’s so difficult for us to not put our hang-ups on our children, isn’t it?
That being said, I highly recommend the book to anyone and everyone. If you’re in the Ds community, you’ll relate big-time. If not, you’ll probably understand how some parents feel when their child with Ds comes into this world. This scary world that seems unwelcoming to those who don’t fit in…just. right. (Round hole, square peg. You get the idea.)
So who is Amelia (Ya Ya, as Olivia calls her) as a result of Down syndrome? Hmmmm…I wish she were old enough to write this herself. If I asked her right now, she’d say, “What?” And she might roll her eyes. And rightly so, because what in the world should that mean to her? I don’t want to point out that she should have a particular feeling toward Ds: good, bad or ugly.
What I do know is that Amelia is 7. She’s in first grade, loves her friends to a fault, talks a lot, and loves to tell silly jokes (“Why was the nose tired? Because it was too tired.” It’s supposed to be “because it ran all day”, but I bet you knew that). She wants her sister to leave her alone most of the time, is good at math, and is super awesome at Chutes and Ladders. She also hates mashed potatoes, which I think is really weird.
She takes a cheer class, thinks she needs new toys daily, loves to paint, and has these amazing eyes. Windows to your soul? More like through it. They see so much beauty in this crazy world. I hope those eyes never change.
Amelia’s sensitivity both frightens and enchants me. It will surely guarantee a wonderful life–rich with emotion and sometimes agonizing, but hey that’s life. A good one anyway.
She’s compassionate and caring, sometimes whiney. And she loves her dog, even though he simply tolerates both girls.
Sometimes I wonder how different Amelia would be if her sister didn’t have Down syndrome. Which is hilarious considering how I wished and wished for a sign on how to teach Amelia good things. Read that post here. Would they be closer? More alike? Would shopping with them be more fun? Would our mother-daughter slumber parties be less chaotic? Maybe, I don’t think so, I don’t really know. And ultimately I know it does not matter. Things are as they should be; as they are meant to be for the Stolls. And like Amelia, we are making it a good life.