Monthly Archives: March 2015

Okay, Sure

The other night I got a text from a friend with a special-needs daughter.

Her: “Today made me want to rip my hair out and swear uncontrollably. I may have done one of those things. I’m having a hopeless day. Hopeless that she will ever be capable of functioning and hopeless that I’ll ever be able to handle being her mom. I seriously suck at it and I get tired of people telling me they don’t know how I do it. First, they’re implying that they are glad they don’t have to deal with her and second, I’m NOT doing it. I for real suck at being her mom. Sorry, I just had to get that out somewhere where I knew I wouldn’t be judged.

If my children have taught me anything, it is to judge not, lest the judge-fest turn on you. So when my sister in parenting travail bared her soul, there was 100% no judgment, only a largesse of getting it. You guys, if you want to get really good at accepting and forgiving people’s foibles, raise some children with behavioral disabilities. Empathy, too, is another byproduct of families like ours.

When my friend’s text came through, I was sitting in bed staring at the wall, unable to focus on books or writing or anything productive. I had just put my children to bed at 7:45 PM, not because they were tired, but because I had reached the end of my taut, abrasive rope and was hanging on by a poorly tied knot at the end.

Me, to her: “I still don’t feel capable of being my kids’ mom. There are a lot of hopeless days, and it doesn’t mean you suck. It just means it’s hard.”

Some days, that is the lesson for me:  it’s hard. End of story.

Good luck trying to write something funny or lighthearted when you feel wrung out by the children and circumstances.

Me to her, continued: “I’ve started thinking that successful parenting in our case is just trying again another day, even if we are doing it badly. We have so little control over the way our kids turn out, despite all our efforts. God looks at the effort, not the end result. (Charlotte Bronté said that, not me, btw.) That’s really all that gets me through. Special-needs parenting is hard. And you’re doing it.”

As I speed-typed this sentiment with my thumbs, I realized I was telling myself this, too. I’ve found this new, jaded attitude of letting-go and it’s one of the best things I’ve done in some time.

It could all go up in flames. It may never be great. We may always be just muddling through, and I’m all, “Yeah, oh well.”

I’m trying. It’s all I can do. Oddly, I feel freed by this lowering of my expectations.

I’ve recognized that I’m doing my best, which probably isn’t enough, but it’s all I’ve got. It’s a better feeling—not caring how it all turns out.

Is this end-stage acceptance? Just shrugging and being all, “Okay. Sure,” about one’s life?      

Will it all turn out okay, ultimately? God knows. 

He can figure it out.

Girlhood

  

When I was three years old, I thought the lines of white exhaust trailing behind airplanes were the marks of the airplanes scraping the sky, like a scratch on one’s skin. Because it healed, you know, after the airplane flew on. The sky was resilient. 

When I was four, I had pigtails and slept on the top bunk in the little room I shared with my two younger sisters.

When I was five, I saw the movie Poltergeist and lived in fear of a sucking vortex/wormhole thingy opening up in my wall and flinging me to another dimension. I refused to go to the bathroom by myself for an entire year.

When I was six, my mom had my hair cut like a boy’s. I couldn’t pull off a pixie cut, even then. Strangers thought I was a boy. I hated it. My parents insisted it was cute. 

When I was seven, I rode a yellow banana-seat bike.

When I was eight, I got a perm and wore stirrup pants with big, belted shirts. I felt fierce.

When I was nine, I sat in the backseat of our car as we left the grocery store, and thought to myself that I had never been more alive or self-aware or observant as I was right then. 

When I was ten, I swam the breast stroke like nobody’s business on the swim team. I woke up at 6:00 AM on summer mornings, snapped on a Speedo, and dumped a swim cap full of cold pool water over my head, and I liked it.

When I was eleven, my dad and I paddled our red canoe around a bend of Lake Alice at dusk during a backpacking trip in Wyoming. A bull moose across the lake waded in on long legs and began swimming through the still water. At the midway point, the moose began dipping his antlers into the lake, alternating to the right and left and tossing great sprays of water into the air. He blew through his nose, misting the ripples around his face. My dad and I sat transfixed in our canoe a couple dozen yards off, as the moose finished crossing the lake and walked up the rocky beach and into the forest. 

When I was twelve, I crashed on my bike in Lincoln Circle and broke my right arm, days before starting seventh grade. 

When I was thirteen, I saw Robin Hood, Prince of Thieves SIX TIMES in the theater. 

When I was fourteen, I crashed while skiing across the icy parking lot of Brighton ski resort as the entire ninth grade watched from the ski bus. I broke my right arm again. This time, it needed surgery.

When I was fifteen, I had the fleeting thought that maybe someday all my children would be boys, and panic rushed through me and into my extremities. 

When I was sixteen, I read Gone With the Wind, The Thorn Birds, To Kill a Mockingbird, Angle of Repose, Pride and Prejudice, My Antonía, and Jane Eyre, and my life spread out broadly before me with unknown possibilities. 

When I was seventeen, I went fly fishing on the Provo River with my dad. He and the guide said that tradition dictated one must kiss the first fish one catches. As it happened, when I got a fish on my line and successfully reeled it in, they were both out of sight, upstream a little way. So I squatted down, lifted my wiggling Brown Trout from the shallows by myself, kissed it on its coolly iridescent side, removed the hook from its mouth, and set it back in the water. It swam away. 

When I was eighteen, my grandpa Milton died at our home early one morning, in my bedroom, which I had given up for him. My sisters and I crouched beside him as one long final breath left his body. It was the first time I understood that sweetness, pain, and love can form a single emotion. 

When I was twenty, I got married.

When I was twenty-one, I graduated from Westminster College, summa cum laude.

When I was twenty-two, I taught freshman writing and took the creative nonfiction seminar that awakened my yearning to write about life.

When I was twenty-three, I finished my master’s degree. When USU President Kermit Hall shook my hand at the hooding ceremony, he said “Congratuations!” and a fat blob of his saliva landed on my diploma.

When I was twenty-four, I had a baby and wondered how all women everywhere did this, because colic was killing us all and breastfeeding hurt like hell.

When I was twenty-five, I was the Young Women’s President to ten teenage girls, though I was scarcely older than they were.

When I was twenty-six, Jack was born. Nothing was the same after. It was harder. I had two red-headed children and one of them was developmentally delayed.

When I was twenty-seven, I began to accept that my life was unfolding differently than I originally planned.

When I was twenty-eight, we moved from a tiny house to a big one.

When I was twenty-nine, I was the Primary President, responsible for two hundred children. And thus began my dark chocolate habit.

When I was thirty, I swallowed my fear and had another baby boy, a fat little cherub. 

When I was thirty-one, I told Dutch that he must choose between weekly date nights or an inpatient mental health facility for the wife, which is how the religiously observed every-week date tradition began.

When I was thirty-two, I had two children who couldn’t be in the same room without the one named Jack screaming and throwing things at his baby brother. 

When I was thirty-three, I was in survival mode.

When I was thirty-four, I had my fourth baby boy and two of my children went off the rails in a spectacular explosion. And, fourth baby was premature. I started a blog. 

When I was thirty-six, I took a memoir class and met the nine women who are my writing group. Fate smiled kindly upon me when I found Blue, Beck, Emily W.S. and Emily M., Larrie, Sarah, Viv, Jennie La, and Amy. I submitted articles for publication and tah dah! It worked.

Now I am thirty-seven. I mostly feel like a steer wrestler, jumping off galloping horses and grabbing cows by their horns, forcibly flipping them to the ground. Except mine are children, and the wrestling is figurative, usually. I don’t wear Wrangler’s, but I occasionally have a self-possessed attitude of competence. 

Life is a good adventure, a dusty, sweaty rodeo which demands participation. 

I’m game.

A Worthy Purpose

I read through a Buzzfeed list of Helen Keller quotes yesterday. She was amazing, and you all know how I feel about that word. But she was.

I looked at photographs of her with Anne Sullivan and I felt that there was a deep connection between two people, made possible by love and perseverance. I tried to imagine Helen’s life as a child trapped inside a dark, silent, frustrating world, unable to communicate.

My Jack can see and hear, but he cannot communicate all that he feels.

Sometimes I feel deep sadness for my son—not for the ways he is different but for all the things he can’t tell me. And too often I feel sadness for myself, because of all the things he will never do, and even for all the things I may never do because of Jack’s limitations.

I had a moment, one of THOSE MOMENTS, as I was driving yesterday. Jack’s day at school had been practically perfect, which is something that hasn’t happened in ages. And then he got aggressive in the car and I felt a crushing despair that if he can’t behave in cars, he won’t be able to do summer day camp, or after-school programs, or basically anything ever. Will we ever get it all together—the school behavior and the car behavior and the home behavior and the weekend behavior?

We are trying everything within reach, and it isn’t enough.

Hopelessness feels like a heavy black blanket that smothers your nose and mouth and tangles your limbs.

Lacey came by in the evening and we put together a behavior therapy plan. We sat at the table discussing ABA therapy and life skills goals for Jack. Jack curled up on the kitchen rug, sometimes popping up to smell our hair.

The black blanket loosened from my face and hands.

Mark Twain called Helen Keller the Eighth Wonder of the World in her ability to overcome so much and be a beacon of hope to others. He was probably right about the woman who said this:

“True happiness is not attained through self-gratification but through fidelity to a worthy purpose.”

–Helen Keller

 

 

Dear Everyone

Dear People,

I know that the tiny letter trope has been adopted by internet culture, meaning that one can’t swing a dead cat without hitting a tiny letter penned, nay typed, by some snarky soul on the web. Anyway, I don’t care. I’m going to write a bunch of tiny letters. 

Deal With It,

Me

Dear Drug Addicts,

Thanks for making it really hard to get one’s hands on the really good cough syrup that actually works, and that knocks one out nicely for a beautiful night’s sleep.

*coughs* 

*sneers*

*coughs more*

Me

Dear Husband,

I want to see Cinderella. I realize that you have barely forgiven me for taking you to see Into The Woods lo those many months ago, but I don’t think there is singing in this one. And there’s no witch. Just Cate Blanchett and we like her. Anyway, give it some thought.

Your Beloved,

Wife

Dear Neighbors,

Did you see it when Jack lobbed his half-eaten blueberry Greek yogurt over the fence from the backyard and onto  the roof of Dutch’s car this afternoon? It was rad. 

*rolls eyes* 

Jack’s Mom

Dear Jack,

We poop in the potty

*drops mic*

*opens a new tub of Clorox wipes*

Dear Neil Gaiman,

You’re weird. But I like you anyway.

Best,

A Reader

Dear Youngest Son,

I’m using behavior modification techniques on you and you don’t even realize it. Well, maybe you do. Who cares.

This Is Happening (eventually),

Your Potty-Trainer

Dear Parenting,

You’re a real piece of work.

Seriously,

MWG

Dear Joyce,

Thank you for giving birth to and raising the Dutch, whose 40th birthday is this week. I’d be up a creek without him. Really, thank you.

Love,

Megan

Dear Psalms,

I feel like you should be sung, not read or recited. But I don’t know the melody. Or what Selah means.

Still enamored,

Me

Dear Curiosity Museum,

It’s not you that I hate. It’s the 87 billion parents and children inside you. On the bright side, museum, now I know how my children on the spectrum feel when they reach sensory overload. When I visit you, I want to curl up in the corner, cover my ears, and rock back and forth.

I’m not renewing my pass,

This Mom

Dear Date Night,

I love you.

Sincerely,

Dutch and the Mrs.

Morning, Actually

This is how the morning went: 

I woke up coughing. 

I put Jack in the bath. 

I started cooking hash browns and eggs. 

 Jack pooped in the bath, then got out and sat on the carpeted stairs, sliding down and wiping off his dirty bum. 

Henry left to catch the bus. 

I administered meds. 

Truman screamed at the top of the stairs because he was too scared to walk down past the poop. 

Dutch and I cleaned up the Code Brown. 

And kept cleaning, because Jack managed to tag so much of the house with this particular BM. 

Dutch showered and left to buy doughnuts for Charlie’s class, a belated birthday celebration. 

I combed people’s hair much to people’s chagrin. 

I packed lunches. 

I set backpacks by the door. 

I waved to the bus driver in my bathrobe and my red fleece polka-dot socks and felt slovenly.

I showered in roughly 45 seconds and hustled with Truman to Charlie’s school to see an ACTUAL PLAY where Charlie said two ACTUAL LINES. 

I held a box of doughnuts while Charlie passed out Halloween napkins (because he likes Halloween stuff) to his class. 

I saw this wall in Charlie’s classroom.    

I ate a maple doughnut. 

I hugged Charlie, who was wearing his birthday crown while working on math problems, and told him I love him and am so proud of him. 

And so you can see, Crazy Poo Morning became Lovely Morning.

Wonder

None of Jack’s bones are broken.

This news is so welcome, so extremely good. I spent last night lying awake with fever and chills imagining me taking care of Jack with a cast covering two-thirds of his body. He still is walking a bit like Quasimodo, but it may be that a) Jack just walks how he walks, and b) his ankle pronation is bugging him. He sees the orthopedist next month.

I’ve turned into a loud, racking cough machine so Truman and I stayed at home today, drinking fluids and resting. A quiet day can make one realize what one has. I’m not speaking of things.

*An open window in the middle of March wafting the fresh smell of earth through the curtains.*

*Buttered toast with raspberry jam for lunch with the three-year-old.*

*An afternoon nap on a sick day.*

*A tiny colored box of Cadbury chocolate eggs.*

*The gift of knowing that the developmentally disabled ten-year-old doesn’t have any broken bones.*

*A creepy and imaginative Neil Gaiman book.*

*Listening to the Psalms while doing laundry.*

These things made me grateful.image

 

A Brief History of Jack in Radiology Departments

February 2005: Following his diagnosis with Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome at 8 months old, Jack has an MRI under sedation. His brain looks good.

 

Every three months for the next several years: Jack has an abdominal ultrasound. Jack screams and writhes on the table. I sweat and hold him down. Radiology techs sigh loudly. No Wilms’ tumor or other abnormalities are ever found. 

 

May 2010: Jack rolls off a beanbag at school and acts like he is in pain. X-rays ensue. Clavicle is broken.

 

September 2013: Nonverbal Jack is inconsolable and running a fever, which he almost never does. Diagnostic abdominal ultrasound at PCH to look for appendicitis or whatever. They find nothing. We leave the ER and Jack perks right up. Because autism.

 

July 2014: Jack returns from summer day camp gingerly holding his right arm and refusing to move it. X-rays reveal fracture above the wrist. Multiple follow-up x-rays over the next two months chart the healing process. Multiple episodes of moaning and crying happen reliably during all x-rays.

 

Annually, since 2008: Visit Dr. C at Shriner’s Hospital where we obtain x-rays for knock-knees, leg length discrepancy, and pronated ankles. Jack hates x-rays, you guys. Dr. C is lovely.

 

This Week: Jack falls down the stairs of the bus. It’s the sort of thing that happens when you are a little bit clumsy and have low muscle tone and yet are always in a GIANT HURRY to exit any vehicle that is coming to a stop. Jack starts limping. Jack has more x-rays. I lie beside Jack wearing a lead apron on the x-ray table to get him on the x-ray table at all. Dutch, also wearing a lead apron, holds Jack’s legs and feet in the proper position for a bajillion x-rays of basically every bone from the pelvis on down. The family that gets x-rays together stays together. Prognosis is unknown at this hour.

 

 

Light & Dark

I’ve started four books this month and I can’t finish any of them. I blame me, not the books. I can’t focus. Books are my preferred escape, but what do you do when you find you can’t even read? It’s disconcerting and I don’t like it.

Nor can I think of anything to write about. A big list of Jack’s antics and destruction is so boring to me. It happens everyday and writing about it is repetitive and lame. Also, nothing seems funny right now. We are stuck in another weekend that needs to end. There is no humor in it.

And I can’t speak. I have literally lost my voice. The plague settled on my vocal cords and the best I can do now is a hoarse whisper. My verbally robust family has taken to stage whispering when they speak to me. We walk around doing noisy, normal household things and we speak in hushed tones to each other. It’s eerie.

No books, no words, no voice. Make it stop.

The last book I managed to finish was All The Light We Cannot See, an intricate and lovely story spinning a web of French and German characters dragged unwittingly into the nightmare of World War II. A synopsis of this book would take several pages. Just ask Dutch, who listened to a bare-bones retelling by moi on one of our recent date nights. It took at least twenty minutes. Good husbands are interested listeners.

So I won’t summarize it. 

Like the best books, All The Light We Cannot See has stayed with me after completion. The characters are real to me, and their suffering part of my own. I witnessed Marie-Laure’s childhood in Paris and Werner’s in a German orphanage. They feel a bit like my own children, which may sound presumptuous, but is genuine. I wanted to stand by their sides and tell them they were good and brave and I loved them. 

While all books about war contain difficult images to read, the thing from ATLWCS which lingers just beneath the the surface of my memory is that of unseen radio waves and human kindness. Unseen things are real, like Etienne’s broadcasts beaming through the night into an enemy country, explaining truth, followed by Debussy.

My brain feels muddled and inept, like my voice. 

I am, though, mulling the story of the people and the war that converged on Saint Malo in 1944. I feel dull and washed-up, but this story managed to illuminate the precariousness of life and the thread of goodness that ties people together even in darkness.

Store-Bought Birthday Cake

I’ve been asking Charlie what he would like to do for his birthday. Party? Movie? Curiosity Museum? Nope.

Cabela’s and cake.

You guys, I am the luckiest mom because my children do not care about fancy birthday parties. Do. Not. Care. Which is good, because I do not care. I was not born with the party planning gene. 

Honestly don’t care.

We have happy birthdays. They just happen to be rowdy, organic, and spontaneously free-form. Also easy. 

My third son is seven now and I can’t figure out what happened to the 30-year-old me who gave birth to that cherub-faced baby. 

We aren’t babies anymore, Charlie and I. 

More Bible

I am now recovered from a most horrible three-day weekend. 

Today was all sunshine and spring weather, and boys happy to be back into the weekday routine. But yesterday, man. And the day before that. Yeesh. Jack’s behavior followed it’s typical weekend trajectory of dipping deep into the category of “heinous.” I don’t feel like recounting all the negative things that happened. We will leave it like this: they happened. 

And I’ve decided I’m not finished talking about the Old Testament. 

I’ve been listening to The Book of Job in my morning scripture routine these past lamentable days. That’s where I was in my chronological daily study of the OT, and it was just right.

I do not mean to compare myself to Job, friends. I do not have skin smitten with sore boils, my children haven’t all been crushed by a falling house, and I am not currently reviled by all who know me. But Job’s story leapt off the screen of my phone via my Shakespearean-y narrator and pulled at my ears, saying quietly and piercingly, “Listen.”

So I did. I mean I already was listening, but now I was really listening.

Job was a perfect and just man, highly esteemed and successful, the father of ten grown children. Then, through no fault of his own, it all unravelled rather dramatically and quickly. He lost everything. I’ve always heard about the patience of Job, but I didn’t realize that Job’s story wasn’t all meekness and long suffering. Job struggled.

He says he wishes he had died at birth.

He proclaims, “My soul is weary of my life,” and I went, “YES!! My soul feeleth the same way!” And I mentally high-fived Job of the Book of Job.

He goes on to say that he nevertheless trusts God and will submit to whatever he throws down, including but not limited to, total bodily destruction. 

Job tells Eliphaz, Bildad, and Zophar that, yeah my wife won’t speak to me, little children are terrified of my face, and my friends and kin have forgotten me, but all is well because I know that my redeemer liveth and I will someday stand before him.

This is why I want to invite Job to my house to eat pizza and brownies and talk about life.