Monthly Archives: July 2015

Jeffrey

Dutch, who is not really named Dutch, left for work really early this morning. People who know him know that his name is Jeff, and they wonder aloud to him why ye olde blog refers to him as Dutch. If you care to find out the reason, which isn’t super interesting but is basically that he gave himself the nickname and now can’t believe I’m running with it, read this. 

But that is not the point of this post.

Dutch left early this morning after kissing me goodbye and tiptoeing past our sleeping kids’ bedrooms. I rolled over and fell back asleep, at which point I had this dream:

Jeff/Dutch was leaving for work and I was walking down the stairs behind him. He stopped midway down and clutched his chest, leaning back to recline on the steps. He couldn’t speak. He was struggling to breathe. I crouched beside him and cradled his head.

“Are you okay? Should I call for help?”

“Maybe,” he whispered.

I pulled my phone out of my pocket and dialed 9-1-1. I asked for help and had to repeat our address three times because I couldn’t get it out. I was speaking in a choked whisper.

While we waited for help to arrive, this is what happened:

1. I stroked Jeff’s face and asked him to please stay with me.

2. He whispered brokenly, “I’ll try…”

3. There were no children around us. We were alone. This doesn’t happen much.

4. Everything was oddly calm and quiet, yet terribly sad.

5. At the bottom of the staircase, there was a wagon filled with vacuums and kitchen implements, which actually isn’t a strange dream sequence touch, but a nice bit of reality.

6. When I looked back at Jeff after noticing the wagon, he had scooted himself up the stairs and, while still lying down, was fixing a broken smoke detector with his multi-tool. This is so Jeff. He may be expiring from the world, but he will go ahead and fix that thing first.

 

I woke up sad. The kind of sad that doesn’t instantly go away when you realize it was just a dream. I was also grateful, and not just because it was only a dream, but grateful for us. Then I laughed, because fixing a broken smoke detector as you lay possibly dying is funny.

Jeff is my happy place.

   

Heritage Weekend

Every summer near Pioneer Day my family convenes at the cabin for a reunion. The point is to celebrate the people in our lives who have gone before and left a positive legacy for us. It’s about remembrance.

At Heritage Weekend, we talk about ancestors like my great-great-great grandmother Rhoda Stone, who was orphaned at age two in England, and whose life adventures are way better than any fancypants episode of Downton Abbey. 

She worked as a seamstress when she was a girl until her eyesight declined, then she worked in a rope factory to earn her own passage on a sailing ship to America. She lived in a dugout in Plain City, Utah with her husband, William England. One day the timbers holding up the earthen roof began to shake and dirt started falling around her. She grabbed her baby, Annie, and tossed her up the dugout steps, just as the roof collapsed. 

Her home was a hole in the ground that literally imploded, but she rose from it unharmed and hopeful. The message I take from Rhoda’s life is that with an abiding hope that one’s life can move forward and get better, it will.

I really needed an ancestor like Rhoda Stone England. God knew it.

I need her in my life because I need to know that I come from a family filled with tough, resilient, faithful, and capable women, who made things happen and really lived.

They did, and I am.

It was a lovely weekend, which would have been nicer if Dutch didn’t have to stay home with Jack, who was beating people up and being otherwise unruly and unpredictable. Real life includes lame reality checks like the family reunion that is missing half your family because of mental disabilities and unchecked aggression.

*sigh* 

But. It was still a good weekend.

We played pioneer games. Sack races are kid-pleasers, because jumping.    

 
Alice is a charmer.

  
Greg, showing us how roasting marshmallows for s’mores over a cowboy cauldron is done. There are six marshmallows on that roasting stick, people. Dude.

  
Cowpokes.

 

 Campfire songs.

We planted a burr oak tree in honor of Matt’s grandpa, Harrison “Pete” O’Brien, in Legacy Grove.  

We had a real-life square dance with a caller named Lucky. There was hooting and hollering.  

A rowdy match of kickball was reminiscent of my second-grade year when kickball ruled recess.

Seriously, Idaho. Stop showing off.

   

Moonrise over barn dance. Preschoolers on hay bales.  

 
Heritage weekend, I can’t quit you.

 

Mindful not Fretful

I’ve been writing this post for two days, which is pretty sad since I just can’t seem to make it come together in any meaningful way. This post is like Gertrude Stein’s description of L.A., “There’s no there there.”

Let’s press on and Just go with it, okeydoke?

I’m in a mindful state these days, sometimes dipping down into melancholy, occasionally drifting into a sense of wholeness.

I’ve been employing the old live-in-the-moment tactic, and frankly, it’s working for me. I’m not fretting so much about the future. I’m only sporadically fretting about the messes which spring up and multiply around us like the giant dogwoods that are trying to take over my front yard.

I went through boxes and drawers and cupboards yesterday in search of something from college, which I never did find because apparently I am a free spirit about neatness. Meaning, nothing is neat. Organization is kind of like a pale memory from a past life.

Whatever.

When I was the most organized, I was also stressed about it. Casual housekeeping and being sane are better.

I can’t ignore Jack and Charlie’s good summer behavior, because I know it’s helping me practice mindfulness in the face of summer’s frenzy of children.

The guys are being mostly good. I mean, this summer is just going swimmingly compared to recent years. Charlie is blowing me away with the listening and getting his work and therapy done and being generally congenial. Jack is also being generally good, except when he randomly decides to lean over and bite Truman’s foot while they are both sitting on the couch, sending Baby into justified theatrics.

That’s the story: we are mostly well, yet sometimes crap blows apart the tableau. It’s always there, the possibility of the veneer of normalcy falling away in a blink as some violent/loud/loco thing happens. I’m trying to take it in stride and not fret about it.

It will happen. And we will deal with it when it happens. Okeydoke.

And with that, here’s this other thing: I’m on a podcast about special needs families. Listen in and take a gander:

Bringing Up Betty
  
 

Beach Ball Bingo

I’ve been in this mood where I wish I had a big beach ball I could carry around and bounce off people’s faces when they make me crazy.

And today I ate my feelings in lemon cake. The cake is dead. Long live the cake.

image

Also, church is where my littlest people act like live wires.

I dreamed today of leaning over and resting my head on Dutch’s arm during sacrament meeting, and falling into a sound, restorative sleep. It was that kind of day. I wanted children to stop yapping about coloring books so I could hear the speakers. I wanted Truman to stop elbowing me in the stomach. I wanted to weep softly during “Come, Come Ye Saints” with nobody pecking at me for anything.

I handed a sobbing three-year-old off to the Primary president, who now just holds out her arms for my wailing wreck of a Sunbeam every single week.

I taught a Sunday school lesson to a bunch of twelve-year-old cool cats like I do every-other-Sunday. Then I taught a lesson to a bunch of twelve-year-old boys on how to teach a lesson.

Here’s the thing about twelve-year-old boys: they are so diaphanously easy to read. Want to know what they are thinking? No you don’t, but they’ve already told you 87 times, so there’s no need to wonder. I did not feel the need for a beach ball in either class today, but there were a couple moments when I would’ve welcomed an air horn.

Anyhoo, I dreamed of Cokes on the 45-second drive home from church. I got home and poured a can over ice, which Jack instantly drank when I wasn’t looking. He did this with three more Cokes this afternoon. Again, beach ball.

Jack did the angry tongue face something like 18 times today. He had to reboot in time out probably 6 times. The lunging and the squeezing and the grabbing happened off and on all day.

Charlie had separate meltdowns about church pants, church shirts, Primary, shorts, and going potty.

Sundays are my death march.

 

The Mouse-Proof Kitchen

I’m reading The Mouse-Proof Kitchen, a novel about a couple and their first baby, who is disabled. They’re Brits who relocate to the rocky, wild hills of France near the Pyrenees.

I think I expected the story to be rather magical, because despite their daughter’s special needs, Anna and Tobias decide to pursue their dreams anyway, moving to this romantic place and starting exciting new career projects. I felt that it might be a whitewashed perspective of what it is like to have a disabled child.

It’s not.

The story has the raw feeling that accompanies learning that your child isn’t normal. Anna’s isolation is spot on, not just in her remote home but in her ragged new emotional status as a mother of a child whose life will be limited in every way.

For me, reading this book is kind of like picking a scab. It’s uncovering memories of my own wrenching process of becoming Jack and Charlie’s mom. The wounds are old and more or less healed, but if you pick at them, they still weep.

Maybe that sounds melodramatic, but I feel an affinity for Anna and her shifting emotions. I do not live in the mountains of France in a crumbling house infested with mice. I do not have a resentful, distant husband. But I get how she feels.

Her life is out of her hands in so many ways, and she is figuring out how to move forward with the sea change of suddenly being responsible for a child who will always be dependent on her for everything.

And I sort of hate Tobias, even as I see the fear that drives his decisions.  He is the foil to Anna, who is rising to the occasion as she loves her imperfect little girl. She is selfless, yet conflicted. He is selfish and copes via escapism and anger directed at his wife and daughter.

It makes me extra grateful for Dutch, who is nothing like that. He read the back of the book, lying next to me on the bed, and said, “We have a Jack-proof kitchen.”

I do like reading fiction about having a special needs child. It’s another lens into the process of coming to terms with one’s completely different life. And, frankly, it makes a good story.

I like a book that takes me someplace new, yet speaks to me where I currently am.

Books into Movies

One of the most delicious surprises for a book nerd is sitting in a dark movie theater with one’s husband, who isn’t a book nerd but who loves one, and seeing a movie trailer play, realizing as the story unfolds that it is for a movie adaptation of a book that the book nerd has read and loved.

It gives me chills. I am the nerd.

This happened Saturday on date night when Dutch and I were sitting in a theater full of baby boomers (because we see movies with baby boomers) waiting for Love and Mercy to start (two thumbs way up for that one, btw). The lights went down, the previews fired up. A trailer began, outlining a story of a girl living alone in an untouched valley after the world has been destroyed by nuclear holocaust.

I leaned over and whispered to Dutch, “I’ve read this book. It. Is. Good.”

“What’s it called?” He asks.

Z for Zachariah,” I say, moments before the movie title, Z for Zachariah fills the screen.

We watch with interest until the trailer ends.

“I read it in elementary school. Well, actually, one of my elementary school teachers read it aloud to us every day after lunch. It was the best part of the school day and I LOVED it.” I whispered, because apparently I am one of those annoying people who whispers to their husband during the previews.

“You had a teacher who read THIS story aloud to an elementary school class?” Dutch laughed, incredulous.

“Gather round, little children,” he quipped. “I will read you a tale of the end of the world, where only a couple of people are left alive, and it is super creepy and scary.”

“She’d get canned for that these days,” he added.

“It’s true,” I laughed quietly. “She read it to us and we were all riveted, because that book was THRILLING. I went to a book fair at the school with my mom a couple of years later, saw that book, and told my mom I was going to use some of my saved-up $7.00 to buy it. The book fair lady launched into this big warning about how it was a ‘scary’ book for ‘mature readers.’ I was all, ‘Yeah I know, I’ve already read it.”

“Book fair lady looked horrified as she rang up my purchase.”

It wasn’t until much later, after we got home from watching Brian Wilson’s story of torment, creativity, and sadness that I remembered that when I read Z for Zachariah, I did not picture the guy who shows up in the valley looking like Chris Pine. Actually, I don’t remember that character at all.

But people, in the movie, Caleb, who may or may not be totally psycho shows up as possibly the last man left on earth, and he is also seriously Chris Pine.

CHRIS PINE. And somehow handsome scary, seems scarier than average-looking scary.

You Can’t Go Back

During my first pregnancy, Dutch and I bought our first house. Built in WWII, our tiny Sugarhouse bungalow sat beneath the old, large leafy trees that reached up and over Hartford Street to touch in the center.

Our first Sunday at church, I noticed a dainty little girl with physical differences holding her mother’s hand in the chapel. Her name was Chelsea and her mom’s, Karen.  They would become my dear friends over the next few years and teach me a whole lot about acceptance, devotion, and strength.

“When one decides to have a baby, one has to be ready for every possibility,” said a voice in my head that first day at church.

I wondered if my first baby would be different. When he wasn’t, I believed it was because I had done a wonderful job of being pregnant, thus growing a perfectly lovely person in my womb. Parenting, while not necessarily easy, still felt like something I had control over.

I was so green.

The year before we moved to Hartford Street, we lived in Cache Valley in our little white clapboard rental house on a quiet corner near USU’s campus. We were students and life felt busy, but in hindsight it was just completely, luxuriously unpopulated by children.

While we lived in Logan, my visiting teaching partner lost her first pregnancy at twenty-two weeks due to the horribly-named (and just plain horrible) condition called incompetent cervix. The loss of her baby girl stunned me. She was the first pregnant friend I’d had. We had talked about baby names and morning sickness. I was quietly preparing myself for the day when Dutch and I could start our own family.

I took her flowers and homemade calzones. Then I went on a walk around the park, where I considered that my friend had been planning for her daughter’s birth, but instead she was now preparing for her burial service.

There I stood on the cusp of finishing graduate school, ready to embark on the child-raising leg of my adult life. As I rounded the park, the voice in my head said, “Being a parent has no guarantees, but plenty of surprises. Remember this.”

A cold sense of awareness blew through me, a premonition maybe.

Parenthood was a vast, rocky frontier. It scared me. I was going to do it anyway.

Now I’m entrenched in parenting, yet I still sometimes walk through my house and wonder where all these giant man-children came from and why they are eating so much food.

At this point in my life, when I see pregnant people I can’t help but think about all the ways their unborn babies could be affected by physical, mental, and behavioral differences. It’s jaded, I realize this. But from my family’s experience, how could I not see such possibilities?

I also get that most babies are healthy and typical, that not all children are dramatically affected by disabilities.

Some are, though.

I know this intimately now. And I’ve never been able to shake the realization that life can’t be controlled.

Only lived.

  

 

Things people said at book club this week

a) “We need to read something without Nazis in it.”

b) “This month’s book seemed very romance novel-ish at the beginning. So many references to ‘broad-shouldered, narrow-hipped men.'”

c) “Let’s read something uplifting.”

d) “Uplifting isn’t good for discussion.”

e) “Oh come on, The Rosie Project yielded a great discussion.”

f) *nods and murmurs of agreement around the room*

g) “Norwegian by Night was one of the best books we have read. Hands down.”

h) “Agreed.”

i) “Every time I thought life couldn’t get worse for the characters in The Nightingale, it got worse.”

j) “This is what I mean about Nazis.”

k) “Let’s read some classics.”

l) “Yes! How about Dickens?”

m) “Dickens. Suffering. Gah. I don’t know if I can take it.”

n) “Doesn’t have to be Dickens. There are so many great choices.”

o) “If we want happy, let’s read Jane Austen. Everyone gets married in the end.”

p) “Ann Patchett’s Bel Canto?”

q) “George Eliot’s Middlemarch?”

r) “We ought to do some Young Adult lit. The Fault in Our Stars?

s) “Yes. YA is great. Remember how much we loved Wonder?”

t) “Even that had Nazis in it.”

u) *sad realization by everyone that Nazis permeate our book choices.*

v) “I Loved The Hiding Place.”

w) “An amazing book. Again, Nazis.”

x) *sighs*

y) “I have a crazy idea. Let’s all bring a book—the best book we can find—to our next meeting. We can review them for each other. It will be a deep pool of possible candidates.”

z) “You are a genius.”

July…She Will Fly

Our Fourth of July weekend began Friday evening with Cul-de-Sac of Fire (Sing this in your head with an imaginary hair/metal band screaming on a couple of electric guitars.) It’s an annual tradition with my neighbors where we all drag camp chairs, explosives, and young children outside to the circle and light it up.

Jack was in heaven. I got the feeling that he felt we should be doing this every night, always, because it was just the right amount of sensory input for his mental well-being. Jack simply needs a neighborhood fireworks display in front of our house every single night of the whole year, guys. No biggie.

We also hosted a few cousins Friday night, bringing the number of boys at my house to EIGHT. It was an hours-long gaming war in the basement, and of course everyone went to bed waaay too late.

Saturday morning, I cooked hash browns, sausage, pancakes, and eggs in vast cafeteria amounts and fed the troops.

Before we left home for my parents’ house, Dutch said, “We are forgetting something. I know it.”

When we arrived at the pool, we found out what it was we forgot—Jack’s swimsuit, a wet-suit type affair that he keeps on in the pool because it’s hard to take off. I put some old swim trunks of my dad’s on him, which he rejected because they were wrong, duh.

So with cousins and neighbors all around, Jack loped around the backyard—a gleaming white nudist, while Dutch and I tried to corral him. We tried a different set of trunks. He allowed it for roughly five minutes.

The thing about autism is when you forget something and have to be flexible and change things around, just know that it doesn’t ever work. Forgotten items or changed plans are a disaster unfolding before your eyes, and that’s the way it is.

We left the pool and made our way to Grandma Joyce’s cabin for dinner, where Jack ate Otter Pops nonstop for two hours. He also rocked in the porch rocker and made the Little Tikes engine whistle on repeat. He has loved that train since he was a toddler.

July 4th has always been kind of an ordeal for me because it happens in the summertime, which is our chaos season. This year it was manageable. Tiring, but pretty good. It is a rare, satisfying thing to compare ourselves to years past and see that it’s better. Still messy, but a lot less awful to live with.

And I can’t feel too much animosity for a holiday that gives me brats and watermelon, baked beans and homemade ice cream. Summer wearies me, but I can still appreciate it for it’s really good parts.