The rain started late last night, or very early this morning. I could hear it hitting the metal roof of the house. It’s a peaceful sound, one we don’t hear often in the arid West. When I awoke this morning, it was cloudy and cool, and still threatening rain. We’d planned lots of outdoor work today, but plans change! One thing rainy days are really good for is washing indoor windows. And also, reading books. And also, also, taking naps. I think I’ll do all three.
I’ve been reading a blog by a wonderful woman named Lisa Leonard, do you know of her? What’s not to love about this post? She’s honest and brave and I find those qualities to be inspiring. I particularly love this part:
My heart needed to grieve. Caring for two boys with such different needs was really, hard—and that was okay. I didn’t have to pretend it wasn’t hard. I could be honest. I could say it was hard. I could ask for help. I could take breaks. None of these things affected my love for David or Matthias. None of these made me a ‘bad mom’ or a failure. They simply made me human.
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.
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.
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?
The kids and I just got back from a camping trip in Glacier National Park. It was full of all the usual things: campfires and scary stories and mosquitoes and starry skies and hiking, lots of hiking.
Which to me, felt like a small miracle. Continue reading “An amazing thing happened”
Avery loves to draw circles. Sometimes, we call them “O”s, sometimes it’s “zeros” but really, they’re all circles, and he’s very good at making them. When he works, his face tightens with concentration as his little fingers grip the pencil. His tongue peeks out, a wisp of golden hair falls in his eyes. Continue reading “Circles”