I didn’t know that the actor, Ashton Kutcher, is a twin, or that his twin brother Michael was born with Cerebral Palsy. I didn’t know that Kutcher, who is mostly known for his lighthearted acting roles, could be thoughtful and introspective, as he was when he said these words, as part of a speech he gave in Iowa on Saturday:
My brother was born with cerebral palsy and it taught me that loving people isn’t a choice and that people aren’t actually all created equal,” the actor said, fighting back tears. “The Constitution lies to us. We’re not all created equal. We’re all created incredibly unequal to one another, in our capabilities and what we can do and how we think and what we see. But we all have the equal capacity to love one another, and my brother taught me that.
These spiritual window-shoppers, who idly ask,
‘How much is that?’ Oh, I’m just looking.
They handle a hundred items and put them down,
shadows with no capital.
What is spent is love and two eyes wet with weeping.
But these walk into a shop,
and their whole lives pass suddenly in that moment,
in that shop.
Where did you go? ‘Nowhere.’
What did you have to eat? ‘Nothing much.’
Even if you don’t know what you want,
buy something, to be part of the exchanging flow.
Start a huge, foolish project,
It makes absolutely no difference
what people think of you.
Late last night, we were driving home from town in the dark, when about a dozen mule deer appeared in our headlights. Deer on the road is not unusual, when you live in the country. They’d jumped the barb wire fence along the side of the road, and were milling about, trying to figure out what to do next. We were each in our own little worlds–the older boys were mostly asleep, Tom was concentrating on the road, I was thinking about what I needed to do once we got home, when Avery looked up and said, “WOW!”
We all sort of woke up when he said it, and agreed, it was absolutely a WOW moment. Avery was the only one who truly saw it–and without him, we would have missed it.
Do you know Kelly Rae Roberts? Her website makes me feel so happy, and full of inspiration!
Here’s a conversation we’ve been having a lot at my house, lately:
Avery: I’ve got good news!
Me: Terrific! I love good news. What’s up?
Avery: I’m a big one!
Me: Yes! You’re not a little boy, anymore. You’re big!
I love that he’s so proud of himself, and that he’s embracing all the changes that adolescence brings. I love that he’s not scared, or worried about the future. And I love that he makes me want to try to be brave, and hopeful, and not resistant to change, too.
because every day is World Down Syndrome Day, at our house! Lately, Avery has been saying he wants to go to college (I think he really just wants to go to the college cafeteria, where he can drink unlimited Dr. Peppers. But we will work on that…). So it’s wonderful to know about places that will support his dream.
I can’t think of a better way to show how universal life with Down syndrome is, or how full of possibility, than this video. I love it!
3-21 is World Down Syndrome Day, because of the significance of the numbers (3 for a trisomy, 21 for the 21st chromosomal pair where the trisomy occurs in T-21, or Down syndrome). And in honor of my family’s connection to T-21, here’s a list of 21 things we love about Avery:
- He’s a snappy dresser. Especially, he likes bow ties.
- His favorite food is shrimp.
- He loves to draw.
- He loves to play Xbox, particularly football.
- He has a guitar and he makes up beautiful songs.
- When we sit down to dinner, after the prayer, he gives a little toast in which he says nice things about everyone at the table. Things like, “You’re a nice guy,” or “You’re a good friend,” or “You’re a good brother.”
- He always sets the table for dinner.
- He likes to go camping.
- He likes to stay in hotels, particularly ones with room service.
- He loves Dr. Pepper.
- He’s very deliberate in his actions.
- He doesn’t lie.
- He notices when people need a hug, or a pat on the back, or encouragement, and he gives it freely.
- He likes to have long chats about his future.
- He changes what he wants to do in his life often. He has no problem with change.
- He believes everything is possible.
- He says “thank you” about a hundred times a day.
- He loves animals, especially Sam, our dog.
- He has no trouble asking for help.
- He has no trouble giving help.
- When he laughs, it’s a whole-body laugh, and it’s contagious.
I feel as if I’ve been waiting for something to happen for so long that waiting has become a habit. It’s not a good habit! To help myself get unstuck, I’m trying new things. One of them is here: Make Your Own Magic With Andrea Scher. She’s a superhero. And I love that she says, “No capes, just courage.”
Words aren’t our easiest thing. By “our” I mean Avery, but I also mean the whole family. I wrote about it a little bit in my book–the “taxi driver” syndrome, where we all step in to help, but really, we’re just making it harder for Avery to do the things he needs to do for himself. We’re a bunch of enablers.
Which is why Avery has begun using, with the help of his excellent speech therapist, an AAC. He’s using the LAMP Words For Life app on an iPad. He’s getting quite good at it, which brings me to the tears part.
As I was trying to explain to our wonderful speech therapist why the AAC would never really work, about how it was going to cause all these problems, I started to cry. And then I was so embarrassed I lost my train of thought and just sat in the little chair in the media center of the school, which is where we go for speech therapy, trying not to cry more.
We eventually got it all figured out–by “we” here I mean the therapist, Avery and me. It became clear that the person with the problem with the AAC was me, and that it was a problem because it represented a time, some time in the future, when Avery wouldn’t have me around to help him navigate the world, wouldn’t need me around to help him.
And that thought overwhelmed me. I mean, wasn’t that my biggest fear, back when Avery was a baby? That he wouldn’t have a big, beautiful life? And now, I’m surprised at how much a part of me doesn’t want to ever let him go.
On our way home, I asked Avery if he understood everything that had happened. He said he did. He understood it all even better than I did. He said, “Mommy’s going to miss Avery.”
It’s been quite a while, much longer than I originally thought.
I’m rusty! And out of the habit of writing daily, and also blogging has changed so much in the last many years. But I’m ready to try.
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”
The days are getting shorter and the air, especially at night, has a new chill to it, which is a long way of saying, it feels like fall!
Things we’re loving at our house right now: French toast with real maple syryp, Richard Scarry books, Goosie cards, BOB books, garden tomatoes, the reprintable resources from DSFOC, Melissa and Doug’s play food set, this pretend clock, this zucchini bread, and fresh eggs from this chicken (now all grown up!).
What do you love, at your house?
Today I’m over here, with a short essay I wrote a few years ago. It feels as true today as it did then, perhaps even more-so after Avery’s surgery. I hope it rings true for you, too.
And by that I mean: supplements.
Recently a new mom to a baby with DS wrote me and was wondering if the thoughts I shared in my book about supplements, such as Nutrivene-D and others, were the same.
A lot of things have happened since I first was thinking about the subject of supplements, when Avery was just a baby. Some things had me leaning toward trying it; others had me shying away from the idea. Continue reading “One of the tricky questions about Down syndrome”