Monthly Archives: May 2014

A Joy and a Chore

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That September morning, piles of dirty carpet and crumbling carpet pad overwhelmed my house. The combination of exposed tack strips and little bare feet turned the dreamy event of getting new flooring into kind of a nightmare.

As we watched for the bus and I kept Jack, my mentally disabled nine-year-old, from menacing the tools littering the floor, the carpet installer watched Jack with curiosity. He told him hello and asked where he went to school. When Jack left on his bus, the carpet man went to his truck and returned with a laminated obituary of a woman with special needs who had passed away a few years ago in her fifties.

“That’s my little sister,” he said.

The high points of this woman’s life were written by someone who knew her well. Some of my favorite parts: she liked Big Red gum, Pepsi, eating out, singing duets with her brother (our carpet guy), and shopping at the dollar store. She had more friends than anyone else in her family and always had to have two dollars in her purse.

Her personality shone from the laminated newsprint.

My toddler and I left for a walk that day and I considered the carpet man’s sister and her list of simple pleasures.

When we passed the school where the sixth-graders were wrapping up recess, I casually tried to spot my kid in the sea of navy and red polo shirts. I wanted a peek of my eldest in his element. Just before I rounded the bend in the path, half of the sixth grade spotted and recognized me, yelling, “Hi Henry’s mom!” Henry gave me a wave and a “Hi Mom!”

I decided that moment was worthy of a laminated obituary. My simple pleasure: being known as my kid’s mom by a happy crowd of sixth graders.

Before the walk and my celebrity moment by the school, when I finished reading the obituary of a woman I didn’t know, I thanked the carpet man for sharing it with me and handed it back to him.

“You know. You understand.” he said. “She was a joy…….and a chore.”

At this statement my mind raced through myriad images of my family’s life, like the shuffling of a deck of cards.

I saw myself holding my redheaded baby as a geneticist diagnosed him with a rare syndrome.

I remembered feeling like I lived at Primary Children’s Hospital and at Early Intervention, or at least on the freeway which ran between them.

I imagined every time a Code Brown covered the carpet, walls, and furniture and squashed my will to live.

I grimaced at the memory of ten years of difficult Sundays with Jack kicking me in the church foyer, screaming during the sacrament, and having no place to fit in during the two long remaining hours.

I recalled kneeling helplessly beside Jack’s toddler bed as he cried, listening when the Spirit whispered “Jack is a child of God.”

I thought of my first two little boys kneeling by the electric train set, two pleased sets of eyes following the Lionel Polar Express around it’s oval track.

I saw myself on my back, lifting my smiling nonverbal three-year-old son on my feet like an airplane, our hands clasped.

I pictured the after-bath miracle when three-year-old Jack, who had never before mimicked things we tried to teach him, imitated my husband opening and closing his mouth, saying “ah” to his hooded-towel clad reflection in the mirror.

I tasted the sweetness of the evening two Christmases ago when my family sat together on the couch through an entire viewing of Fantastic Mr. Fox without a single person freaking out.

I swelled with emotion remembering when the bishop asked me at Jack’s eight-year-old interview if I believed Jack knows his Savior, and deeply knowing that he does, even though he can’t say it.

I recalled the recent day when my boys and I walked the long gray windowless hallway leading to the university behavioral health clinic, and I realized that place no longer holds any power over me. Victory and acceptance have replaced anxiety and despair.

I felt the lightness that accompanied a dream I had where a neighbor leaned over and whispered to me at church, “You don’t need to worry what people think about the challenges you have raising your children. You’re doing a good job,” and knowing it was actually God saying it to me.

On that September morning, my mind fanned through the everyday images of parenting a joy and a chore. I solemnly nodded at this knowing man stapling carpet to our stairs, who in five words summarized the essence of my life.

The ’80’s called. They Want Their Denim Back

There seems to be a magical age for women when we suddenly stop buying into every fashion trend that rolls down the pike. We can still be fashionable. On trend. Sort-of stylish even. But perhaps not always fashion-forward necessarily.

I have apparently hit this auspicious age. The reason I know this: I refuse to wear acid-washed jeans.

High-waisted acid-washed jeans to boot. Those color-leached pants that go up to your ribcage are anachronistic. They’re time-traveling pants from the 1980’s, which is perfectly fine, people.

Absolutely perfectly fine! Unless you were in elementary school in the ’80’s. And you wore high-waisted acid-washed jeans with your permed hair and your oversized shirt and your look of complete bewilderment to Crestview Elementary every day.

In which case, you just can’t go there. It’s taking a fashion step backward. You may call it retro or vintage or whatever. Etsy can peddle it to the red-lipped hipster crowd all it wants.

But to me, it conjures images of safety patrol. And stirrup pants with big belts over giant tops. And riding my yellow banana-seat bike up and down Clover Lane 46 times a day. So, no.

I’m a grown woman who has already done this trend and seriously cannot feign interest in it again.

Sorry guys.

Is there a trend you refuse to accept? Am I totally off the mark about aging out of certain trends?

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Deep Thoughts

A) I ate coconut curry and teriyaki steak with Dutch before seeing a most excellent British period film called Belle. The hubs is rad for taking me to see my movie choice instead of X-Men, his movie choice. Also, Tom Wilkinson’s character was rad. Also, I cried during the trailer for The Fault in Our Stars, which looks true to the book and thus perfectly, painfully beautiful.

B) Charlie walked into the kitchen yesterday and said, “I love you Mom.” I stood there frozen, with dewy eyes and clasped hands, when he finished with, “And I love Santa.” Me too, Chachie!

C) I saw my writing group yesterday. I love them. So, so much. I’ve got writing group high.

D) Jack said, “Cupcake!” while pointing to a plate of star-spangled cupcakes. The speaking and the pointing made me happy. The cupcake-eating made Jack happy. Decorating the cupcakes during therapy made The Chach happy.

E) Project Be is humming along nicely. Living in the moment is sort of like running around in bare feet and underpants as a little child. It’s working for me.

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Project Be

I’m starting a new project. It isn’t a health challenge and I’m not refinishing any furniture. If you just said to yourself, “Boring!” feel free to stop reading at this point. I give you my blessing to go blend yourself a nice green smoothie. Or distress a robin’s-egg blue dresser. Enjoy.

This project is something I need to do.

I decided this while sitting in a chair on my lawn watching my two-year-old fill his plastic watering can with the hose and dump it into his green turtle pool. Between filling and dumping sessions, he climbed a purple ladder and slid down the kiddie slide into the pool. Sometimes he paused to drink from the hose. All this transpired while he narrated these activities to me in his little voice.

Truman demonstrated Project Be (as I’m calling it), which is to be in the present more.

My plan is to notice the cool grass between my toes and the breeze rustling through the cottonwood leaves.

My goal is to stop analyzing the issues we are facing and instead listen to the sounds of Henry shooting hoops in the driveway and Truman shooting toddler hoops on the deck.

My purpose is mindfulness. I’d like to be fully present, finding satisfaction in right now and avoid spinning off into worries about the future.

I intend to just be.

*Deep breath and cleansing sigh.*

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Summer is Coming

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Summer is coming.

Creepy meme cat says it, so it must be so. Creepy meme cat, incidentally, isn’t as creepy as my two-year-old who recently pointed into the empty kitchen and asked, “Who’s that?”

Stop freaking me out, little curly-headed dude!

I digress.

Unlike every May in recent memory, I feel no dread about summer coming. I feel a calm neutrality, actually. Sort of a removed sense of “this must be what normal people feel at summer’s approach—a pleasant sense of anticipation.”

It’s curious. The fear is gone.

This is not because I’ve conquered summer. I haven’t. Every year, Jack’s regressive behaviors amplify over the eleven weeks of Not Enough Structure and take me to the brink of mental breakdown. I’m not speaking in hyperbole. It’s reality. Mentally and emotionally, I barely survive summer “break” every year.

I can joke about it. The reality though is that summer is this annual recurring nightmare that gives me PTSD.

But thanks to forces bigger than my will to live, this year Jack will attend a daily summer camp with other kids and teens with disabilities where he will go bowling, swimming, to the water park, and play rec therapy games at the park. For eleven weeks, my friends.

Jack will be in sensory heaven, with helpers at his side to safely guide him through fun new experiences. I will be at the zoo with my other kids. Or at the pool. Or at the farm or the new natural curiosity museum or the botanical gardens. Or any number of places we can’t all go to together because the mom-to-special-needs-kid-ratio totally stinks around here.

God is good, people. He made the mountains and the oceans. He made lilac bushes and quaking aspens and pearly May evenings with pink sunsets.

He made my lovely boys just the way they are. And He saved us from another summer of death.

Map of Jack

Jack’s birthday is winding to a close. I always feel like a fraud of a mom when people ask me what we are doing to celebrate and I say, “Eating Hostess cupcakes and handing the birthday boy a new vacuum.”

It’s not Pinteresty. It’s effectively the anti-Instagrammed child’s birthday party. It doesn’t look pretty, yet it’s all the stuff he likes without the meltdown potential of a party.

Jack’s birthday is usually a sad, faded kind of day for me, with bits of brightness around the edges. Like a map of the world, I guess, with saturated outlines and pale, shaded countries and oceans.

It’s a day when his differences feel as big as the Pacific.

His birthday makes me ponder his life and our lives, and inevitably it gets emotional.

It’s not that this day takes me back to his birth or the hard, uncertain years that followed it. It doesn’t. I’m too mired down in the right now to devote much energy to remembering the early days.

I guess it just seems like this day should be really happy.

And yet, it is another difficult day when Jack spit out his medicine, kicked someone at school, got naked on the trampoline, and pooped in both his bedroom and the bathtub.

I had a conversation this morning with someone about group homes, and the possibility of Jack one day living in one. Not really the sort of thing you pic-stitch and proudly post on all your social media platforms.

Jack has made his parents and his brothers into new people. This is his gift to us. His life teaches us about hope. Because of him, we know gentleness, kindness, and the deepest meaning of love. Jack puts the trappings of daily life into perspective, reminding us that things are only ephemeral things.

My second son’s tenth birthday reminds me that he and I are two fragile beings with a long journey to make around this giant globe of wild terrain.

We are small and limited, and we still have a long way to go.

When Did I Turn 100 Years Old?

Something creeped up the drain in the sink of the half-bath by the kitchen this week. I peered tentatively into the drain pipe, which should’ve been dark and empty, but which was instead teeming with milky, glistening bean sprouts.

Jack, it seems, planted the beans from a school art project into the drain, atop the five mechanical pencils he shoehorned into the drain earlier. They sprouted. Apparently the drain pipe of the half-bath off the kitchen is a fertile spot for beans to sprout and grow.

Our house, the Petri dish.

I noticed this week that Charlie insists on wearing socks with his Crocs, a double fashion foible. But considering the Actual Issues of Great Magnitude we have faced regarding The Chach this week, I’m sending my concerns about Crocs with Socks directly to the round file.

Also, I told Dutch I have been languishing too much of late in the Land of Meh.

I’m uninspired.

Ennui has reared it’s yawning, boring head, before resting it heavily on my supine form.

Dutch said I need to find a new passion. “What’s your passion?” he optimistically asked.

I replied with half-lidded eyes and a gravelly voice, “Eating desserts and taking naps.”

Then I got on zappos.com and searched for “comfort sandals.”

A Better Way to Mother’s Day

Because Mother’s Day has been fraught with difficult emotions for me for a solid decade, I tend to dread it. Today went pretty well though, all things considered.

I didn’t feel my chest imploding and my eyes weeping when the Primary children sang to the congregation in Sacrament Meeting.

My two primary-aged boys were a) at home with a respite sitter (yes, this is a new, fabulous thing) and b) hiding facedown on my lap, too fearful of being in front of a crowd to join in the tribute to moms.

This time I didn’t see the children’s medley as something we will never be able to participate in, something beyond our reach. I saw it as something separate that other kids do. It was sweet to watch and totally outside our sphere. It had no negative effect on me.

It’s true that I am beyond blessed to have children. It is also true that raising the children I have is the challenge of my life.

Thinking about my daunting, endless task as the mom of kids with disabilities makes me tired and crabby. Hence, my general dislike of a day devoted to pondering motherhood.

But today was better. Instead of mulling my ongoing difficulties as a mom, I decided to think about Shirley and Joyce, my mom and MIL respectively. Instead of feeling underwater in the parenting department, I felt appreciative of the women who brought Dutch and I into the world.

I transposed all my Mother’s Day angst into reflection on my mothers. It was infinitely better.

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Here Little Dutch grabs at Joyce’s mortarboard at her PhD hooding. Circa 1976. I heart Joyce’s cool hairdo.

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Shirley, in her bridal finery. She made that wedding dress. Also, she had ombré hair before it was even cool, which makes her avant garde. July 1969.

Honey Badger Don’t Care

On a recent outing to the zoo with my two littlest boys, I came to a realization. Actually a couple of realizations.

Because Jackety Jackerbottoms was not with us, our outing did not require my laser-like attention focused on one strapping redhead. We meandered. We dawdled. We lazily ate lunch in the shadow of the whirling carousel. I people-watched.

When I’m in a public place with Jack, I notice people only when they are in my way of a quick exit. Jack is my sole charge, my raison d’être. I have eyes for no one else.

This time though, I noticed things.

Realization Number One:

I noticed that I’m older than most of the zoo moms nowadays. And yet I remember slapping on a sun hat and strolling my one little boy around the zoo every Wednesday, a dozen years ago.

I looked at those beautiful young moms. They all looked amazing. Their ombré hair was curled to resemble a natural wave. Their designer diaper bags were slung on their new, top-rated strollers. Their outfits were on trend and effortlessly adorable. They were just so pretty!

Note: Except in the case of those who were wearing patterned leggings as pants. It’s an unfortunate trend that leaves little about the wearer’s crotch to the imagination. And because Buzzfeed is discussing it, it clearly is a problem that reaches beyond my town’s zoo.

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Anyway.

I sure liked their Tom’s though. Those shoes are comfy, peeps. Also, they’re just cute. This old mom digs the ubiquitous Tom’s trend.

And so, in my people-watching and my lazy-lunch-eating trance, I came to…

Realization Number Two:

I don’t care about that stuff anymore.

I used to. I once cared about strollers and diaper bags and outfits (mine and my children’s).

Now I just don’t. I don’t care that my six-year-old is wearing a hodge-podge bunch of stretchy comfort clothes accessorized with my oversized round sunglasses. (From the neck up, he looks like Babs.)

I don’t care that my purse is a canvas bag from Old Navy that I’m pretty sure is intended for schlepping groceries.

I don’t care that we have graduated from a critically acclaimed stroller to a beat-up red wagon.

I don’t care that I’m sporting second-day hair.

I just honestly don’t.

I’ve opted out of keeping up, and it’s kind of fabulous.

Lessons from Paradise

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It’s been a week since our dreamboat vacation ended. The return to normalcy is never pleasant, and this transition has featured a cargo load of shiz. Thanks, real life!

*Sigh*

I’m inclined to revisit the happy holiday, so:

Lessons I learned in Paradise

1. Google Maps does not shout “You missed the turn!” when you miss the turn. That electronic female voice, with her bland butchery of Hawaiian street names, doesn’t demand “What are you doing!?” when you go the wrong way. She just silently gives you new directions to Makapu’u Point. Rock on, Google Maps Girl.

2. Dutch doesn’t yell either. One of the many reasons he’s a great catch.

3. Poor navigating (mine, not Google Maps Girl’s) can make a one-hour drive to the other end of the island into a nearly two-hour drive, with a pointless detour through Honolulu, where lots of cars are going nowhere fast. Poor navigating = poor, disgraced navigatress.

4. Hiking along the Southeastern tip of Oahu may include rain coming at you sideways from the ocean. Like totally sideways. Like rain-filling-up-your-ear-that-is-nearest-the-cliff-and-the-sea-sideways. It’s true.

5. Getting drenched on a hike to an island lighthouse isn’t an entirely awful thing, anyway. Because, Hawaii.

6. Exercise is easy when your days consist of a) walking to the beach, b) swimming in the ocean, c) hiking to waterfalls and sea cliffs, and d) swimming in the pool. And when your kids are 2500 miles away.