Monthly Archives: August 2015

Thirteen Cents of Dog Meat

My dad had a volleyball-sized tumor removed from his stomach, intestine, spleen, and pancreas this week. He was under the knife for six hours. The surgeon, who deserves a major award, got all of it, along with portions of my dad’s organs claimed by the cancer.

When I saw him less than 24 hours after surgery, he told me he felt like “thirteen cents of dog meat.” When my dad wheels out the obscure old-timey phrases, it means he’s at the threshold of “getting back to normal” and “still pretty shizzy.”

He described the meds he was taking and mentioned Tylenol.

“Tylenol?” I asked, incredulous. “You’ve had the most invasive surgery of anyone on this floor and they’re going with Tylenol?” Because, you see, I am an ibuprofen snob, who sees Tylenol merely as a poor substitute for the good stuff.

He looked at me, annoyed. “At this point, I’d eat turkey turds and rainwater if I thought it would help even a little.”

Me and my mom: BAHAHAHAHAHAHA!

He’s feeling better, alright. But only when the narcotics (and Tylenol) are doing their thing enough to let him not think about pain and start thinking of pithy grandpa comebacks.

Less than a week later, he’s at home, sitting in his recliner, watching Bloomberg and eating soup. Everything still hurts, he is way too skinny, and there are the spots in his liver to contend with. But it feels basically like a miracle and we are hopeful.


My nephew Raleigh walked up to my dad and said, “Grandpa, too-muhs aw sticky an I don’t wanna see dem.”

Tumors ARE sticky and stupid and unwelcome parasite jerks who need to go away.

Me, to tumors everywhere: “Nobody likes you. You are unwelcome parasite jerks. Pack your sticky, ugly tumor bags and hop on shank’s pony. You heard me. Git!”

I can do “pithy grandpa” talk, too.

I learned from the best.

 

You’re Not the Boss of Me

It’s a strange thing to go from straight up motherhood 24/7 to jumping back into work part time. It’s surprising in a couple of ways.

For instance, I’ve always felt that I should be THE expert on raising my children, because I am their mother and they are my children. If anyone knows them intimately and pervasively, it’s me.

And yet, being a mom involves people NOT listening to you a good deal of the time. Children of all ilks come with a will and ideas and a personality, so good luck being the boss of them. My children are particularly enigmatic, which has shown me that “mastering” parenthood is kind of a ridiculous notion.

After a luxurious child-rearing hiatus of fourteen years (hahahahaha), I’m teaching a couple of university classes again, and these college students, some of whom were born the year I got married, treat me like I am a true authority on the subject of writing. I AM the boss of them, and they are down with it.

Life hides bits of irony around corners and sometimes it pops up to surprise you.

And. They pay you actual money for doing work. Which is the opposite of full-time motherhood.

 

 

 

 

Dark & Light

Sometimes God talks to me.

Not in a prophetic sort of way. He just says things that I hear inwardly, things that help me move forward. I know it’s Him because it sure isn’t coming from me.

Usually I am in a quiet place when it happens. I’ve sought it out because there is no inner quiet, only a crashing mental and emotional thunderstorm. So I find a spot like the shower or my bedroom, and I ask for wisdom.

Mostly, though, it happens in the temple.

In the temple, God talks to me even when I’m angry, contrary, belligerent, turbid, and skeptical. His speaks, and I’m finally still.

It happened one hot day in July a few years back when I couldn’t handle the poop anymore. My life had become mostly about coping with Jack’s BM’s. I cleaned up Code Browns on a daily basis, often more than once a day. The house was steeped in poop. My life stunk, literally.

I went to the temple, a clean and quiet place. I sat beneath a mammoth chandelier, tears seeping from the corners of my eyes, and my supplication went like this:

Me: “Heavenly Father, I’m so mad and frustrated and sick of poo.”

Him: “No kidding.”

Me: “Why does it have to go on and on and never end? Have I not learned from these years of caring for Jack? Am I not gentler with people—kinder, softer, more forgiving? Am I not more compassionate and less prone to judge? What haven’t I learned and why can’t the poo storm stop? Must I live with the same awful crises and horrors over and over and over and over?”

I wept, and looked up at the giant chandelier above me, constructed of hundreds of cylindrical fingers of crystal. Bound together in a scalloped pattern, they resembled a massive and intricate flower bloom.

Him: “Each of those fingers of crystal is like the experiences you are having in your life. Ultimately, your experiences will also form a beautiful, vibrant, light-filled thing. But you have to have them first. All of them.”

In a bright room beneath a brilliant chandelier, my sadness receded. It didn’t make sense that I felt better. But I did feel better.

Because God told me that the only way out is straight through.

   

Send Complaints to Ira Glass

I have had somewhere in the ballpark of 827 conversations this week with Jack’s bus driver, bus aide, principal, teacher, and school nurse. We’ve talked meds, seat belts, meltdowns, extreme hunger, sensory integration, menacing the bus dashboard, and rocky transitions.

Back to school hurts. But it’s a good hurt.

Jack had a major behavior incident of whacking people and things while the bus was parked in front of the school yesterday. One of the solutions is to have him wear a seatbelt, which is actually more of a harness. This morning, the bus driver and I tried to cajole Jack into putting on the harness. Jack was like, “Duh. No.” Nonverbal people are good at slapping things out of your hands if they are not on board with your schemes.

Enter Dutch. He came outside and got Jack off the bus, which made Jack antsy, because BUS! And school! And routines, people! Jeff told Jack that if he wanted to get on the bus, he had to first put on the harness.

Jack put on the harness.

Jack listens to Jeff better than me, which is not fair and probably has something to do with the fact that Jack knows he can win physical skirmishes with me, but not so with dad. Sometimes I feel like Jeff and I need to trade places, Freaky Friday-style, because the children like him better. And he outweighs Jack by more than I do, a notable advantage.

Anyway, the bus drove away, and Jack was a peach both going and coming from school today. Jeff’s brilliant plan of making the bus ride conditional upon the wearing of the harness worked.

Still, I kind of want to forward my calls from the school to Ira Glass in Chicago. Let him field the phone calls and solve the disasters and turn all of it into a podcast episode of This American Life, which I will listen to with detached interest, unless the story becomes uncomfortable. Then I will turn it off.

I’m kidding. In real life, I never turn off the fake podcast of my son’s disasters and assaults. It stays on, all the way to the end.

  

 

Diagnosis Day: A Retrospective

The morning of January 20, 2005 was gray and not especially cold.

I rarely wore a coat anywhere that winter because schlepping my red-headed baby and preschooler places made me hot, always. I rushed my children out of pajamas and into clothes, hurrying to make our appointment with genetics. I wore a stretchy cowl-neck sweater in mossy green (my favorite color) with grey cords. On my feet, I slipped a pair of suede mules.

I have never forgotten what I was wearing that day.
Jack was seven months old and an enigma. He was lovely on the outside, with pale, rosy skin and a round moon-pie face. The skin of his arms, legs, and torso were covered in splotchy red marks that the pediatric dermatologist diagnosed as a capillary malformation that made the skin somewhat sensitive, but which had no other related problems.
But Jack didn’t make great eye contact and sometimes seemed like he was in his own world, disconnected from the things happening around him. He was growing well and mostly meeting milestones, but always just barely on the edge of the timeline those handouts at the pediatrician’s office purported as “normal.”

Those handouts stressed me out. We weren’t keeping up.
At his two-week-old well visit, as she examined Jack’s joints, muscle tone, and reflexes, our pediatrician referred us to a geneticist. Seven months later, we got in.
And now we were here. I hadn’t found a sitter for three-year-old Henry because I knew how doctor’s appointments with kids were: thirty-ish minutes. A quick exam. In and out. We were simply here to rule things out. That’s what we were doing—ruling out problems. And we would be done in thirty-ish minutes. Because I knew all about going to the doctor.

Except I didn’t.

First we told our life story to a genetic counselor with the lyrical name of Pilar. She was smart and kind and had warm brown eyes. She mapped out our family tree on a sheet of paper, indicating all our relatives and any physical or mental conditions they had. We talked about Jack’s skin and his other differences.

“Soon they will send us home,” I thought. “After they have ruled out anything sinister.”

The genetic counselor smiled, gathered her notes, and said she and the genetic team would meet in the common area now to discuss Jack.

“This constellation of symptoms is present in several syndromes,” Pilar breezily mentioned as she left the room.

Ice coursed through my veins. What was she talking about? A constellation of symptoms? It was a melodic phrase, except that connecting the dots of my baby’s differences wasn’t going to result in a collection of stars in the night sky. It might reveal a glaring disability.

I stood holding my squirmy baby, naked but for a diaper, in my arms and watched as Henry climbed up on a chair over and over to recreationally wash his hands in the little sink. Over and over he climbed up, helping himself to vast amounts of foaming hand soap and splashing water all over the countertop, floor, and himself. Over and over.

When were they coming back? We had been waiting here for ages. I needed to use the bathroom. Hadn’t they ruled everything out yet?

I strapped naked Jack in the stroller, called to Henry and opened the door. A large group of doctors, residents, and genetic counselors sat in a circle nearby. They turned in unison and looked at me when I spoke.

“Is there a bathroom we can use?”

“Yes, just around this corner.”

I took my three-year-old, my baby, and myself to the bathroom, where a cold, hard, pervasive knowledge pierced the center of my chest.

Jack had a syndrome. I knew it.

I knew it at the deepest physical and spiritual level, before we walked slowly back to the exam room and they said the words that changed everything that came after.

Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome.

No one has ever heard of it, because almost no one has it.

Intellectual disabilities. Brain dysfunction. Cognitive delay.

Welcome to the new frontier.

There was no going back. The geneticist’s diagnosis landed squarely on us. He said it and it couldn’t be unsaid, because it was true. His words were an atom bomb.

My old life blew away as pulverized ash.

 

My Day in Some Sentences

School starts this week.

Charlie sobbed about the back-to-school open house all morning.

When we arrived, a boy named Michael said, “Charlie! I always knew you’d come back!”

They played pirates and snipers on the reading loft with three other boys.

Everyone forgot school. Everyone remembered friends.

Hello autism class. Hello miracles.

Goodnight summer. Goodnight moon. Goodnight cow jumping over the moon.

Henry went to his eighth-grade school open house, mainly to feel superior to the seventh-graders.

I weeded the front yard.

I loathe morning glory.

I love marigolds. Zinnias, too.

I am quite self-congratulatory after weeding.

I drove people to day program, the orthodontist, two different back-to-school open houses, the store.

Motherhood is seventy-five percent driving people around in short, frequent bursts.

I spoke to Jack’s school nurse and the psychiatrist’s nurse five times today about the meds they will give him at school.

Motherhood is ten percent having phone conversations with sundry people on behalf of your children.

Dutch did back-to-school blessings for the boys tonight.

Charlie held his iPad on his lap during his blessing. He did pause it beforehand. Whatever.

Jack sat very nicely and laughed during his entire blessing.

I got a blessing, too. It’s back to school/work/the world for me, two mornings per week.

I am exuberant!

School resumes.

Life expands.

Earth tilts.

Air chills.

Weather crisps.

Children grow.

Minds stretch.

God gives.

Jesus lives.

 

It’s Working

This week as I drove home from having a rock chip filled in my brand new windshield, I stopped at the four way stop by the park. I came to a complete stop, because it’s what I do. Yay, me.

I waited to turn left, watching as three boys took their sweet, unhurried time crossing the street. One of the boys stopped exactly halfway across and crouched down to tie his shoelace.

For like three minutes.

Kids are the best. They are self-absorbed in a charming sort of way that makes me laugh. Charlie especially, when he asks me things like, “What color are bones? Are they the color of fish guts? What color is your brain? Does your brain move around inside your body? What does SpongeBob’s brain look like? How many weeks is it until Christmas? How many weeks does it take to get to the North Pole? Why do bad guys say, ‘Well, well, well, what have we here?'”

Charlie’s brain is clearly firing much faster than mine. There is a lot of curiosity in that youngster. We cut his giant mullet into a handsome and tidy back-to-school haircut yesterday. We are not talking about school, however, because it sends him into theatrics (#transitionanxiety.) School is the elephant in the room, and we are totally ignoring it.

Also this week, I got a job. Not that I haven’t had a job lo these fourteen years raising children. I actually never stopped working when the guys were born. I just stopped getting paid for it.

But, beginning this very month, I am returning to teaching as an adjunct at a nearby university. It’s a part-time gig, just two very early mornings per week teaching composition to undergraduates.

It’s a feeling of lightness I’m experiencing, like a closed door in my life has opened, revealing an expansive wing that has been shut up for a long time.

I knew it was there, but I forgot how bright and airy is it.

Just Another Tragic Sunday

Sundays are a recurring day of existentialism where I question everything in my life. The pattern is obvious, but how to change it isn’t.

“How can it possibly keep being this hard?” I ask myself all the time, come every single Sabbath morn. It doesn’t matter what strategies we employ or what help we seek. It is getting harder. The end.

On this most difficult day of the week, my children collectively seek to destroy me. Not Henry, he’s a helper and a hero. But everyone else is trying to kill me.

We have to talk Charlie down off a figurative cliff before church every single Sunday. Then he loses his marbles in sacrament meeting over crayons, snacks, Primary, and trying to convince us to take him home. People, autism + anxiety = a real whopper.

Truman is the loudest and most anxious Sunbeam I’ve ever known, and when Charlie starts obsessing about something, Truman quickly panics and joins in.

And then there is Jack. His Sunday behavior is wildly beyond the pale. It just is. Sundays are the day when he:

1. Throws glasses over the fence to shatter on the driveway,

2. Pours out a whole box of Teddy Grahams on the floor for the express purpose of sucking them all up in the shop vac,

3. Demands to be taken on rides in the car all afternoon long,

4. Opens the front door and runs away,

5. Pulls the pre-lit Christmas tree down from the top shelf in the garage to drag it around the dusty garage and plug it in,

6. Has frequent, angry time-outs in his room to curb the violence and destruction,

7. Shreds plastic packaging and sprinkles it around the house, and

8. Vacuums up a plate of spaghetti, making the vacuum smell like hot death.

But, you guys, this post isn’t intended as a martyrdom treatise. It isn’t a cry for help. It’s more of an uncontrollable scream of righteous indignation, followed with an exhausted whimper.

As parents, Dutch/Jeff and I are the cushions absorbing the painful jolts and blunt force trauma of living with people who have disabilities. We are the ambassadors standing between our special-needs kids and the world. We are the connecting cables, the adapters, the converters that must problem-solve our tushes off to make our kids and the world interface productively.

And Sundays are the absolute worst.

We Have a Boat

IMG_3264The cottonwoods whisper outside my open window. I can hear crickets when the wind ebbs. It’s nighttime and summer waxes awhile yet, as I lie on my bed in the dark and mull that here we are, again coping with med changes for Jackypants.

It’s an awkward tango where we adjust the timing and doses of the meds that are mostly really helping except when they aren’t. We whirl and lunge and leap in a hopeful interpretive dance around our nonverbal son, who can’t tell us how the meds (or our weird dance moves) make him feel.

I crush pills. I frequent the pharmacy.

Then we watch. Everything is based in observation, and I hope that we are being observant enough.

Jack’s receptive language is really pretty good. He understands most of what we say to him. He laughs at things or moans just like his teenage brother when he thinks parents are lame. But he can’t express himself verbally. It’s all stuck inside his blue eyes, milky/freckly skin, and red hair.

I would be throwing things and hitting people, too.

I have an image in my mind of a boat carried on a tide. We are in the boat. We have oars, a sail, the stars, and yet we are carried by a tide. It goes where it will and we cannot change its course.

Jack can’t speak. I can’t read his mind or give him everything he wishes for. He feels frustration and anger and wanting. I feel inadequacy and, sometimes, sadness.

So we drift. It’s a purposeful current, but we do not control it.

Still, I am grateful for the boat. We aren’t helpless and floundering. We can row; we can fill our sails. Wind and water and sky splay out around us.

It’s a strong current that draws us along, even when we wish it would take us someplace else. We may be pulled out to a faraway place by this tide, but we have a boat to carry us.

I am happy for the adventure, for serendipity.

And the stars make me glad.

 

Post-modern, Post-weekend Tiny Letters

Dear Three-Year-Old,

I have fetched your drink, fixed your blankets, tucked you in eight times, and the screaming continues.

I am now recusing myself from this situation.

 

Dear Canyon,

Thank you for being cool and drizzly tonight, and for the smell of rain falling on grass.

 

Dear Book that I am Reading,

You, The God Who Weeps, are perfectly wise and insightful. I’m mulling you over.

 

Dear Summer,

You felt like fall sometimes this week, and I liked it.

 

Dear Cherry Coke,

It’s nice being back together with you. Rock on, sister.

 

Dear Jack,

Another weekend done. We did it, with only a moderate dusting of Frosted Flakes everywhere in the entire house. And the melted Popsicles I found under the table and beside the toy bin. Also the poo bath and the endless cheese consumption. Anyway, we still did it. Yay, us.

 

Dear Children Who Didn’t Want to Go to Church Today and Made a Giant Stink About It,

Sorry peeps. Parents win.

 

Dear Anxiety,

Don’t you have a vacation you need to be taking in some national park somewhere? Or a beach you need to spend several months on? Far away from my children? #goaway

 

Dear Bedtime,

You are gorgeous and I love you.