Monthly Archives: October 2014

Ain’t Nobody Got Time For Indoor Flames

The evening was proceeding swimmingly.

I had maneuvered the boys in a swinging, waltz-like round from basketball pickup to the pharmacy to home where everyone ate dinner, played, and did their jobs without drama. For real. Things were going so well, I even made butterscotch cookies. On a weeknight. Just for kicks.

I felt this cool sense of competence, thinking of all I had accomplished with Dutch working late and four kids in tow. And then, as I was adding bleach to a batch of laundry, Henry yelled from the kitchen, “There’s a fire!”

Which was true, because Jack set fire to the house.

Sort of. When no one was watching, Jack held some paper towels over the lighted scented candle by the sink. He then dropped the fiery wad on the counter, where Henry found it.

I learned some things:

1. Candles are verboten here now.

2. I am not super great in an emergency. I was hyperventilating and waving my arms around, trying in vain to think what to do.

3. Henry is great in an emergency. He was cool as a cucumber, snatching the flaming mess, throwing it in the sink, and dousing it with water. He caught the hot embers that drifted above our heads and extinguished them too, all while speaking calmly about Jack and candles being a bad mix.

The kitchen smells like char, despite the open windows and spinning fans. It has lavender undertones because Henry was liberal with the Febreze.

“Sheesh!” said Henry.

“Jack, we do not set things on fire,” I said.

“Hot,” said Jack.

“I scared of fire!” cried Truman.

“Fire is not allowed in the kitchen,” said Charlie.

I threw out the candle.

All is well.

Things That Change

I used to have an ongoing mental list that looked like this:

Things We Can’t Do Because of Disabilities

1. Eat normal food all together at the table as a family.
2. Expect that people will keep their clothes on.
3. Ride in the car without people shrieking, throwing things, or removing their pants while crawling around on the seats and mooning people in the other cars on the freeway.
4. Go out to dinner.
5. Travel.
6. Have Family Home Evenings that last longer than 3 minutes; attend church without drama.
7. Potty train our children.

Sometimes I still construct pointless mental lists like this:

Dumb Things I Ask Myself From the Bottom of the Pit

1. Do people with typical children realize what they have?
2. Will random people ever see the precariousness of my family’s daily life and stop pestering us to do all the things that normal families do?
3. Does God really think all this is necessary?

Other times, I breathe deeply enough to still the turmoil and find fragments of clarity. I think to turn the spyglass around and look through it properly from the correct end, so I can see things magnified clearly.

When that happens, the list is more like this:

Things Disabilities Have Given Us That We Wouldn’t Otherwise Have

1. An understanding of suffering.
2. A measure of patience.
3. An actual relationship with God.
4. Compassion for people who are different.
5. A disinclination to care about things.
6. An appreciation for life as a temporary state, framed between a whole history which happened before, and something glorious to come after.

Like my lists, things can change for something better.

IMG_9670.JPG

Hashtag Thank You

It’s not Thank You Note Friday. And I am not Jimmy Fallon. I do want to give thanks, however, for the things that keep my fingers from slipping from their clutch on the figurative railing from which I dangle.

Thank you, Cracklin Oat Bran, for basically being tiny little oatmeal cinnamon cookies that I didn’t have to make.

Thank you, Stickers Doctor and nurse Chantelle, for treating my traveling freak show and me like we are the nicest people you’ve ever met when we stop by for a simple strep culture and require the entire office staff to help swab Jack’s throat.

Thank you, Portlandia, for cracking up Dutch and I before bed with that Battlestar Gallactica episode. Keep Portland weird.

Thank you, shop vac, for holding onto important documents for us when Jack sucks them up from off the counter.

Thank you, Eldest Son, for inviting your six-year-old brother to ride bikes with you to the gas station, and for buying him peanut butter cups with your own money. Brothers are cool.

Thank you, twelve-year-old Sunday school class that I teach, for being you. I heart your little sass pants as much as you heart the Kit Kats and Milky Ways I bring for those who participate.

Thank you, fall break, for being over.

Thank you, October, for being so pretty. And for reminding me that nothing gold can stay.

IMG_9624.JPG

Best Books

I’ve seen lists of people’s top ten favorite books cropping up everywhere, and why not? People who love books enjoy hearing what strikes their reading friends’ fancy. It’s a reader’s version of the Ragnar sticker. People who run slap Ragnar stickers in their car windows or post pics of their races; readers talk about and post about the books that change them.

They don’t even have to be transformative. Books can just be. Books present stories and give us a space to think deeply about the stuff of life. Even better, they give us a way to escape.

IMG_1002-0.JPG

I recently finished a couple of pretty dark books. They were interesting and the writing wasn’t bad, but after reading them, I felt a little creeped out and ready to forsake humanity.

It’s approaching that time of year when I need to find some reeeeeeally good reads to get me through the winter months. Who am I kidding. I feel this way most of the year.

Basically, I must read and I would prefer to find those books which sink their plot and character claws into my mind swiftly and make my heart yearn for a block of uninterrupted time, a soft chair, and a quilt.

I made a list of ten books that I just absolutely love. It was easy because these books came quickly to mind. It was also painful because I lopped of dozens more that I also love, just maybe not as fervently.

Anyway, here is my list, not that anybody asked:

1. Jane Eyre by Charlotte Bronté.
2. Angle of Repose by Wallace Stegner.
3. To Kill a Mockingbird by Harper Lee.
4. These Is My Words by Nancy Turner.
5. Precious Bane by Mary Webb.
6. Caleb’s Crossing by Geraldine Brooks.
7. Peace Like a River by Leif Enger.
8. East of Eden by John Steinbeck.
9. Prairie Songs by Pam Conrad.
10. Beauty by Robin McKinley.

The trouble with this list is it leaves out Barbara Kingsolver, Willa Cather, Kate Morton, Roald Dahl, Charles Dickens, Ivan Doig, Isabelle Allende, Jane Austen, Sandra Cisneros and too many others.

It makes no mention of Gone With the Wind, which consumed me my junior year of high school. There is no mention of the Arthurian retellings which I devoured as a teen or the ghost stories I can’t stay away from even though they freak me out. I didn’t say anything about Harry Potter or Bridget Jones. I never even mention A Girl Named Zippy or The Rosie Project, for Pete’s sake.

It’s an incomplete list.

The book that has stuck with me most recently is Me Before You, by JoJo Moyes. It reminded me of my favorite book in the world, Jane Eyre, if Mr. Rochester were a contemporary quadriplegic man, without the hidden mentally ill wife in the attic. If you read it, I’d love to hear your take on life and suffering and choices that this book presents in such an edible, readable form.

Eat, Pray, Store

I’ve got food storage on the brain.

This could mean:
A) My brain is super sexy.
B) I’m a Mormon.

Other reasons I’m stocking up on food:
A) I’m married to Dutch, who is basically The Dude when it comes to readiness. He’s a little bit ancient Egyptian with the plentiful reserves of wheat for times of famine and a little bit MacGyver with the knack for fashioning impressive and useful things out of materials at hand. He once pulled a rare video cable from a hidden crevasse in our car on a family road trip, fixing a portable DVD player situation, and thus saving the vacation for everyone who was riding in the same car as my sister’s two wailing toddlers.
B) Our bishop has been posting memes like this on the ward Facebook page all week:

IMG_9627.JPG
And this:

IMG_9628.JPG
And also this:

IMG_9626.JPG

It’s all part of a neighborhood-wide effort to take inventory of what we have on hand and determine how ready we are for a disaster.

I took inventory of our cold storage room and decided that in an emergency, Dutch and I would eat just fine, but our über finicky children would freak out over the lack of crappy kid food on which they subsist.

“They’ll eat the food storage when they get hungry enough,” you might say. Or, if you are my dad, you might say, “They’ll eat it before they eat their front feet,” which is a strange, nonsensical phrase for bipeds.

But with my kids, desperation does not lead to a sudden willingness to try the things they’ve always rejected due to sensory issues. Before consuming strange new foods, my boys would devolve into a downward behavioral death spiral spurred by hunger, anxiety, and sensory overload. Also, I’ve heard studies which reveal that in times of stress, people will not eat rather than eat disliked foods.

So I went grocery shopping with the hubs on our date night (sexy!) and we made these crucial purchases:

IMG_9625.JPG

Our shopping cart filled us with:
A) Shame
B) The urge to laugh, and
C) A weighty sense of the ridiculousness of trying to nutritiously feed children with autism.

Whenever I feel bad about my special-needs boys’ decidedly not paleo diet, I always think of our behaviorist, Lacey, who told me about a little boy she used to work with who only ever drank Coke Zero. Morning, noon, and night, it was his only beverage. She spent months trying to introduce water into his repertoire. While I don’t know that boy’s mom, I want to nod my head solemnly at her as a gesture of solidarity. “I get it, Coke Zero mom,” I would tell her if we met.

We spent three years of daily ABA therapy trying to expand Jack’s diet. We tried everything. You know what three years of daily sessions of attempting to spoon-feed a disgruntled nonverbal boy got us? GoGurt. That’s it. We increased Jack’s strange and limited diet with the addition of dyed, sugary yogurt in a tube. At one point, Lacey said to me, “We can keep beating our heads against a brick wall with the new foods program, or we can pick some other battles to focus on.”

She was right. So we accepted our behaviorist’s recommendation to practice acceptance with Jack’s diet and focus our energies on potty issues and not hitting people with flying objects.

Similarly, our pediatric gastroenterologist warned me against removing foods from Jack’s diet in the hope of limiting unhealthy items. “If you take those foods away, he will not suddenly start eating new, healthier foods,” she said. “He will instead become even more limited in his diet. Look at how big and healthy Jack is. He’s a strapping boy! Embrace the fact that he is big, rosy, happy, and nice.”

So basically when I buy Cheetos and Dino nuggets, I’m following doctor’s orders.

The cashier at Ridley’s quietly scanned our cart load of crap. When she got to the end and bagged the lone head of broccoli and three tomatoes, she kindly said, “See, you got a couple of healthy things there. Don’t feel bad.”

There are Hostess cupcakes and Doritos in the house. The special-needs boys will survive another day.

IMG_9629.JPG

Miracles

I’ve been sitting on a hard wooden bench of late watching Eldest Son at basketball tryouts. The kid has hustle and makes a pretty decent point guard. He is the same kid who came screaming and colicky into the world on Thanksgiving Eve thirteen years ago and made us parents.

Henry screamed for the first four months of his life and rarely slept. Since he was our first, we naively thought all babies were nightmares like ours. As we shuffled around like zombies, we couldn’t figure out why anyone would have more than one child. Fools! We couldn’t even handle it—that everyone in the whole world started out life this way, shrieking and sleepless, turning their formerly charming parents into the vacant-eyed undead. People would scoff at our descriptions of our screamer, but after spending any amount of time in our house or our car with our infant, the same people would leave, shell-shocked and haggard.

And then he grew up.

I can’t figure out how it happened. How did the tiny splotchy screamer become this big, graceful boy who dribbles a ball and makes shots and laughs with his friends? He can do so many things. He intuitively picks things up and figures things out. He can play organized sports, follow directions, and wait his turn. He makes friends easily. He is easygoing, funny, and can just be cool.

Everything he does naturally seems miraculous to me because his brothers can’t do it.

At one point during the tryouts, a dad near me on the bleachers was lecturing his son on all the things he was doing wrong on the court. He rattled off a list of things his kid needed to be doing differently, while the kid himself looked rather close to tears. I know this dad was trying to help. The competition was stiff, with 50-ish boys vying for just a few spots on the team. If he were in my green suede booties, though, maybe he would see the miracle that is a big, healthy, smart, capable boy who has the guts and the ability to even try out for a team. Who cares if he makes it or not! The kid is amazing. Dude, just look at him.

It made me think back to when Jack was a toddler working with Early Intervention. My friend Mandi, whose son was in the same structured play group, told me about some parents at Costco who were bragging to their friends about how their young daughter was learning to sign.

“Sign ‘dog,'” they prompted her.

“Dog,” she enunciated perfectly.

“No, no, don’t say it. Sign it!” They pressed.

“Dog,” the little girl said.

Mandi shook her head as she pushed her giant shopping cart away, thinking how parents like us spent our days in classes and therapy and sensory activities, trying to get our kids to speak, sign, point—anything to communicate. And these clowns wanted their daughter to stop talking and show off her signing skills.

Oh my stars.

A little perspective makes the miracles stand out in bas-relief.

The Luckiest Girl

I’m going to say something that risks sounding saccharin and gooey.

First, though, the prelude. I’ve been in the trough of the waves for awhile. It’s been hard. I’ve felt low. Much of the difficulty of special-needs parenting for me is not the daily trials and the fairly constant catastrophes, but the endlessness. It just never stops.

And I’ve really felt it lately.

Strangely, at the same time I’ve also begun to feel like the luckiest woman who ever lived (this is the syrupy part). Between the hard parts and the meltdowns (mine and theirs), I realized something. My children have essentially stripped me of pride, materialism, a tendency to cast judgement, and an inflated sense of my own competence. Our house is a forge, wherein my boys are pounding into me empathy, acceptance, simplicity, and a sharp awareness of my limitations.

Being their mother is a daily exercise in earnestly communing with God, because there is no other way I could make it. It isn’t hyperbole when I say that my boys compel me to drop the unnecessary, shed the undesirable, and jettison (literally) stuff. It’s fiery and intense, and I need help from the Source.

From the ashes, my family climbs, kinder, sadder, softer, and wholly reliant on truth and mercy.