Time is pouring out like water from a pitcher, passing through my hands so shiny and quick. There are little boys pulling open drawers in the kitchen, asking for toast and milk and apples, and I want to be with them. Continue reading “Leave the light on”
This is the longest interval between posts here at Pinwheels since I began scribbling down my notes and thoughts more than 2 years ago. I want to say I don’t know how this could have happened, but really, I already know the answer. Continue reading “How did this happen?”
Writing, for me, has always been a way of understanding things—a way of recording the events, to play back to yourself later, when you feel safe enough to look at them closely. Writing is like the TiVo of life. Continue reading “Becoming”
Recently, I had the opportunity to read Laura Shumaker’s book, A Regular Guy: Growing Up with Autism. a memoir about life with her autistic son, Matthew. It’s an honest and open look at the struggle to obtain a diagnosis (which is something I’d never experienced–I’d always thought the black-and-white pronouncement of trisomy-21 was exceptionally harsh; now I’m beginning to see it as a mixed blessing) and especially, the decision to place Matthew, as an adolescent and later, young adult, in an out-of-state residential facility/school. It’s a story many parents are reluctant to tell–about how they came to the point in their parenting where they felt out-of-home care was the best option.
Another mama I’ll point you to is Ellen of the blog, To the Max. In this post, Ellen answers the question, “What I wish I’d known” about life with her son Max, who had a stroke at birth. She got me thinking about how I might answer that question for myself, and my answer surprised me with its simplicity: I wish I’d known we were all going to be okay.
And of course, we are.
(Also? I’d tell myself the Legos will never, ever be completely picked up, so forget about it already.)
I’m wondering, for myself and especially for all the new moms and dads out there, what do you wish you’d known, right from the start?
Stacy and Michelle Tetschner have put together a collection of writing by parents and grandparents about the love and joy children with Down syndrome bring to our lives. Windows Into Heaven–Stories Celebrating Down Syndrome is just that: 30 personal family recollections with a positive spin (except my contribution about Avery, in which I grumble a bit about how I didn’t feel ready to be his mom, though of course I come around in the end.)
The book includes writing from moms and dads and even grandparents about babies/children/young adults/adults with Down syndrome. Some of my favorite parts of the book are when families share stories about kids older than mine, because it’s fun for me to imagine all the possibilites the future holds.
I have a copy to share! If you’re interested, leave your name in the comments and Mr. Avery will chose a winner next week.
UPDATED TO ADD: And the winner is Stacy W.! Congratulations!
Like most of my stories lately, this one is long and a little bit rambling. It involves fall and homeschool and books and reading and even, apples. So here we go:
A few days ago Bennett asked me where apples come from. To use one of Bennett’s very favorite expressions lately, Yike! Some homeschool! So I quickly set up a field trip to a neighbor’s apple orchard, where we could pick MacIntoshes and Golden Deliciouses and Braeburns in the fall sunshine.
The apples were all around; many of them were falling from the trees, hitting the ground with quiet thumps. It was an odd sound, disconcerting, but also a little comforting, too. A letting go, if you will. A stripping away of everything else but what is essential, to face the coming winter.
Later, in the night, when the kids were settled and the house was quiet, I picked up my reading, a book by Louise Erdrich called The Painted Drum (HarperCollins, 2005). And here is what I read:
Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself that you tasted as many as you could.
Tears filled my eyes, because it seemed as if the words were written directly for me; as if they lept off the page and became a voice whispering gently in my ear.
And I thought, I’m trying. I’m tasting as many apples as I can.