Monthly Archives: April 2017

A Mini Break

Dear Readers,

There are a lot of things happening in my family, currently. I am still writing, but I am not publishing my posts here. Yet.

I’m really not the type of person who likes to post vague updates that fish for people to ask questions. This kind of behavior actually makes me crazy. But. In this case, I’m being vague so whatever. Apologies.

My point is, while we are working on some delicate things, I’m not posting. I’ll come back in a couple of weeks. If you get bored, there are five plus years worth of posts you’re welcome to gorge on. Or not. Some of my older writing makes me cringe.




Writing is not coming easily for me.

I’m still writing things in my mind, but when I sit down to type, I can’t do it. This may be the grief twisted around the stress, pulling at my brain and sending tears seeping out of my eyes. I have things to say, but I can’t say them. They are tender and personal, and I am feeling rather done with being a confessional poet.

And so, I will instead discuss four books which have spoken to my soul. These went beyond being good reads for me. They resonated with my current life, a thrumming vibration in a tone that harmonizes with my own quivering heart.

  1. The Anchoress by Robyn Cadwallader. I am obsessed with medieval literature and current fiction about this period. At Westminster College, I had an English professor, Georgiana Donovan, who was a medievalist. At eighteen, I couldn’t think of a weirder speciality for a literary scholar. Twenty-two years later, I am basically a closet-medievalist. I can’t stop consuming everything about this period, nor do I wish to. And so, unlike the general population, I opt to read books like The Anchoress. It’s a work of fiction about the historically real religious phenomenon of holy men (anchors) or women (anchoresses), who chose to devote their lives to prayer and supplication WHILE LOCKED INSIDE A SMALL STONE CELL attached to a church. Medieval communities were honored to host an anchoress, who was a sort of good-luck charm in the form of a spiritually-minded and focused woman continually praying for the good of the village. In The Anchoress, a teenage girl named Sarah, chooses this option, largely because she desires to escape the only other option available to her, which is to marry an intolerable person. I’m not sure if this book spoke to me because the last thirteen years of my life have felt like they’ve been spent in a cell, not of stone walls, but of steel beams and concrete walls constructed of the severest behavioral disabilities, with not enough air to breathe. This has been my parenting life.
  2. Fire of the Word by Carol Pratt Bradley. This is a work of historical fiction based on the life of an actual woman, Anne Ayscough (Askew), living in England during the Reformation. She lives a tragic life wherein her heartless husband and others despise her for the crime of wanting to read and discuss the Bible for herself. She loves God and thrives on reading the highly controversial English translation of it. She lives to teach people about the mysteries of the Gospel, which she feels shouldn’t need to be decoded and doled out by power-hungry priests. She feels that people ought to read it and interpret God’s power in their own lives. For this, she is reviled, tortured, and imprisoned. Like-minded people agree with her and find her a radiant source of insight and inspiration, calling her the Fair Gospeller. Anne’s children are taken from her for her “crimes,” yet she pushes through her grief and continues living, hoping, and preaching. She feels her life still has purpose, though it isn’t what she imagined it would be. As I read about this, a voice told me that while I feel a separation between Jack and me, my life as his mother is still meaningful and purposeful. There was a tangible comfort for me in the story of an actual woman, who lived five hundred years before me, who found her strength in God, and who carried the memory of her children—even when she couldn’t be with them—as her hope. Anne was real and, I felt, a kindred sister.
  3. Unseen Angel by Alissa Parker. I have followed Alissa Parker’s blog since she lost her six-year-old daughter Emilie in the Sandy Hook shooting. As Jack’s mother, I have been drawn to stories of how other people cope with enormous difficulties and grief. This book, while an emotional read, is ultimately a recounting of healing from desolation. Alissa’s loss compelled her to begin a process of learning what her daughter’s new life is like. She believes Emilie is growing up in heaven, and she tells stories of dreams, conversations, and revelatory moments which reveal to her Emilie’s new roles, as well as her new home. I haven’t had to face the unfathomable death of a child, but I have lived for thirteen years with grief for my Jack, who is not whole. I identify with Alissa, and I feel instructed by her experiences with Emilie, who is a remarkable girl. This story left me feeling peace about the connection between life on earth and what comes before and after it. It gave a weight and a shape to my deeply-held hope that Jack is a temporary state, that something much better waits for him.
  4. The Passion of Dolssa by Julie Berry. Another medieval tale, also inspired by “heretics” of the age, who loved Jesus, preached, and were condemned by the powers of the Catholic Church for not bending to the traditions of the clergy. They bypassed the rituals of a worldly Christianity, and found connection with God through their own prayers and revelation, which was punished with death by burning. Dolssa as a character is a compilation of many medieval mystics who loved God more than they trusted corrupt church leadership. This book felt real to me, though it was fiction. The writing was beautiful and the characters complex and utterly human.

You’ve likely spotted the pattern of me identifying with books about women with deep spiritual lives who face persecution, loss, disappointment, and sadness. But the pain they experience does not equal the sum total of who they are. Sarah, Anne, Alissa, and Dolssa possess an inner light threatened, but not extinguished, by the tragedies of their lives. In fact, the light within them is fed by a spiritual conduit, and because of it, they radiate the light that is the undercurrent of life.

They are glowing paper lanterns, hovering above sadness—overcoming it.

They illuminated the dark corners of my current world, while throwing me a lifeline of hope.

Peace, also Sadness

Since I wrote that last, infamous, Costco/disaster post, several things happened.

It got shared. A lot. wrote about it.

Lots and lots of people responded, and many of them were absolutely vicious in their condemnation of me. It was a level of vitriol I have never before experienced with anything I’ve written.

I sustained PTSD after reading only a sampling of the cruel comments that strangers wrote about me and Jack. I am not kidding when I say I was traumatized.

I needed resolution. I wanted to let go of the anger I felt toward the haters. The night before Easter, I took Jesus seriously. I visualized myself printing off every last mean-spirited comment, placing the pages in a shoebox that Truman is currently using for his rock collection, and wrapping it tightly with bungee cords. In my mind’s eye, I then solemnly carried that shoebox of hate and set it on the sacrament table in the chapel of my church. I put it on the altar, basically, and I left it there. When I woke up Easter morning, the burden was gone. I felt better.

I had a beautiful Easter Sunday. I felt thankful for the Savior, whose suffering paid for my trauma, Jack’s disabled life, the haters’ bad behavior, and every unfairness and sadness and wrongdoing that ever was or will be.

I thought a lot about the irony of angry, condemning people reading that post, wherein I am vulnerable in my honesty of the nature of parenting a severely disabled child, and where I also talk about this daily work as a sacred gift to Jesus Christ, who sustains me through the horror of it. The irony of the people who angry-commented is this: they couldn’t see any of that. They saw only themselves and an unwillingness to share a public space for a few moments of one day of their whole life with a person with isn’t mentally “perfect.”

I decided I didn’t want to be like them. I wanted to see past the ugly behavior and forgive the imperfect people who lashed out, condemning my family. I wanted to do what Jesus would do, not because I feel love for people who hate me, but because if Jesus loves them, then they must have the capacity for good. The atonement can heal their ignorance, as it can heal Jack’s disabilities and my shortcomings.

Jack had surgery today. This involved setting our alarms for 4:45 AM, but then actually waking up at 3:45 AM, because Jack was having a dance party in his room in the wee hours. Whyyyyy? We checked in at pre-op at 6:00 AM and were home before noon. There were no behavior problems. Jack did scratch one spot on his face when they put the anesthesia mask over his mouth, but that was the only blood. He was a good boy. Miraculously, we were able to arrange for dental work as well as his ear tube/ear cleaning.

While everything with the surgery went smoothly this morning, I am at a level of exhaustion that is stunning, even to a veteran SN mom like me. I am wasted. This is when I weep openly, pray aloud in desperation, and retrench to survival mode. Put one foot in front of the other foot. Take the day one minute at a time. Hold on through this meltdown and that aggressive behavior and all the screaming and the rigid demands. Hang on a little longer. Reduce expectations and forget about the rest of the world. Survive this day with my family, and then get in bed and thank God that He brought us through it.

A few other deeply emotional things happened too, but I am not at the point of publishing them here, particularly after last week. I’m working privately through my grief on a few issues. I feel peace, but also sadness.

You guys, I am tired of being the face of disabilities awareness. I am tired of the impatience, the judgment, the looks, and lack of concern or understanding by some. I am tired of putting myself out there, of stepping into the arena (as Brene Brown describes it), and being a perpetual vivid, visual example of imperfection and struggle.

I am weary of it.

I told Jeff that perhaps the purpose of this blog has run its course. Maybe it’s time for me to fly under the radar and just live, carrying my enormous burden without the magnifying glass of the internet and ill-mannered strangers weighing in on how I should be doing things.

Jeff, who is a deeply private person, said this, “The people who wrote those horrible things know nothing about raising a person like Jack. THEY KNOW NOTHING. Their opinion means nothing in this scenario.”

He also said, “Of course you can’t stop writing. You can definitely tell ksl to take a hike, but your blog is something different. If you do it because you feel called to do it, then carry on and share hope.”

And so, I ate an unhealthy amount of Cadbury mini eggs and I opened my laptop as I climbed into bed after this long, trying day. And I wrote about it.


Dear Mom of the Boy at Costco Whose Head My Kid Smacked Yesterday,

I am really sorry.

Really, really, truly sorry.

I would’ve liked to have given you a better explanation than calling out, “I’m so sorry. He has autism” as I ran after Jack.

He does though. This is what autism looks like, particularly when compounded with developmental delay, a rare syndrome, the inability to communicate, and, sadly, another ear infection.

I had a helper with me. We thought we could do it—expose Jack to a brief trip to the store to pick up his favorite Buffalo Chicken Bites. We didn’t know he was sick until after everything went berserk.

The moment when my son whacked your son, unprovoked, on the back of the head, came minutes after Jack bellowed in the checkout line, literally threw our groceries on the conveyor belt (I caught a tub of soup mid-air), climbed ONTO the conveyor belt, and then pushed brusquely past an old lady to land his open palm on your child’s recently shaved scalp.

You looked so irate. I don’t blame you. I would’ve been angry too, before my life became one perpetual fight-or-flight response scenario with my special-needs son, whose response to the world is usually aggression.

I would have liked to look your son in the eye and apologize to him. But I had to grab my large, tall disabled teen and hold on to him as we speed-walked to the car.

Please, Fellow Mom, know that your livid response was matched by my own mortification. In the car, as I wrestled Jack into the backseat and pressed him against the door so he couldn’t bash his head against the window, the weight of public humiliation once again descended on me.

We drove away a few minutes later and I said to myself, “We are STILL doing this. We are still a circus freak show anytime we venture into public.”

I also said, inwardly, “What’s left for you, Jack, when we literally can’t take you anywhere?”

After spending the next hour and a half at the pediatrician’s and then at the pharmacy, I wished I had your number so I could text you and say……something.

Something like:

Is your son okay? Are you okay?

Or, I’m sorry that my child’s behavior added trauma to your shopping trip and your overall afternoon.

Or, Before you condemn me and my enormous red-haired nonverbal teen, please know that the unpredictability and uncontrollable outburst you saw today are my daily life. This is every day for us, and I can’t fix it or escape it. Thank you for making an effort to understand.

Or, Parenting is hard, amirite? It feels impossible when my big, violent son is physically strong but mentally low-functioning and it’s Spring Break and we don’t have any respite programs available and he needs to do something and we thought we could try going somewhere. Anyhoo, bless you.

Or, I forgive you for hating me and my child in that moment when his disabilities manifested in aggression toward your innocent son. I’m working through forgiving myself for feeling like an inadequate embarrassment of a woman. 

Or, That smack on your kid’s head doesn’t define who we are. I wish I could show you the rest of us. I hope your day improved vastly.

I don’t have your number, though. Just the look on your face, burned into my memory.

The only thing that saved me from my own personal hell following this incident, dear Mom at the Costco, was this passage in a speech that I read before I fell asleep, closing the book on a true contender for The Worst Day:

“May I express a word of gratitude and appreciation to those many who minister with such kindness and skill to …. [disabled] people. Special commendation belongs to parents and family members who … care for their own children with special needs in the loving atmosphere of their own home. The care of those who are diminished is a special service rendered to the Master himself, for “inasmuch as ye have done it unto one of the least of these…, ye have done it unto me.” (James E. Faust, The Works of God, October 1984).

Fellow Mom, when I help my son live every day of his limited life, even though I’m not nearly enough of a mother in so many ways, I am showing Jesus that I love Him.

When you teach your son to forgive and accept others who are so blatantly imperfect as we are, you are showing Him the same thing, too.

Humbly Yours,

Another Mom

Map of Happy

I read Ann Cannon’s latest column and decided that I need this writing exercise in my life. So let’s do this.

If I drew a map of my happy places, they would include my Grandma and Grandpa Burnett’s house in Clinton, Utah. It sat at the end of a long gravel driveway, behind three massive pines in the center of the lawn. It was a gray wooden pioneer house—the house my Grandpa Milton had grown up in, and it seemed that every time I visited, there was a pot roast in the oven and Fruit Loops on the table (I wanted just the Fruit Loops). We listened to Engelbert Humperdink records on the record player. I pumped the pedals on the old player piano and watched the keys play themselves. I explored the figurines in the Art Deco china cupboard, a relic of my Great-grandma England’s. I asked my Grandpa to read me the dog entry in the encyclopedia. This was a quiet, slow, contented place. I felt loved there.

The river bottom at the cabin in Idaho is a place of cool, clear recollection. The bridge, the grove of cottonwoods, the dirt path beside the creek, the buck fence, the cattails, the river rocks—I’ve known them since I was a baby. I took my boys there when they were babies. The children are getting big, and we still go, reliably. I occasionally walk there alone, and when it’s dusk and the air is cold on my hot skin and the inferno that is my life, the river breaks my fever.

Jeff and I went to the Laie, Hawaii temple three years ago when we took a trip to the north shore of Oahu. The entire vacation was a dreamboat of peacefulness and beauty, but my happy spot is in the historic LDS temple, which faces the ocean and sits at the base of a lush mountainside. It’s a small building, relative to newer designs, and it has the loveliness and charm of an old home—unique, grounded in history, a bridge to an earlier time and the people who lived then.  I felt a deep connection to Jeff there, like we were fellow warriors in a violent, ongoing conflict. We were together, united in purpose, yet in a state of rest from our rigorous parenting life. That, and the beach, which I’ve written about before, are bits of paradise on my memory map.

Sugarhouse Park, in the neighborhood of our first home, holds the imprint of my days as a new mother, and symbolizes growing. Whoever designed that park deserves a prize. Its composition in tandem with the landscape—the slope of the lawns to the pond, framed by mature trees, before the backdrop of Mount Olympus—is what classic paintings are made of. I walked to that park nearly every day, three seasons of the year during the years when Henry was little, and almost as much when Jack joined the family. It was our daily destination. The playground, the shade, the ducks, the walking loop. I circled that park probably a thousand times with my other young-mom friends living on my street, and two streets over. We pushed our children in jogging strollers and talked our way through the enormous shift that becoming mothers had wrought on our lives.

My parents’ backyard is an acre-sized haven. I floated there in the pool on a spring evening when my high school peers were at prom and I totally wasn’t. I mowed the huge lawn, and I did it without a self-propelled lawnmower. The Joe Muscolino Band played raucous hits on the patio at our wedding reception while Jeff and I embraced and danced. Now Henry mows the lawn and my kids spend summertime in that pool, with my parents in the shade nearby. We are living on borrowed time in that place. My parents struggle to keep it up, even as their health wavers. That backyard is bittersweet to me. It was an ideal place to grow up. Perfection. But it won’t last, and I mourn my childhood home. It represents a phase of my life that has passed by, with more changes to come.

The sea-cliff walk at Howth, Ireland reminds me of a time when I was not yet encumbered by my current, strenuous life. I was an undergraduate student. Jeff and I had been married only nine months, but when the opportunity arose to go on a literary tour of Ireland with Elree Harris and Georgiana Donovan of the English Department at Westminster College (along with my sister Kate), Jeff encouraged me to snatch it up. So I did, and Kate and I explored Dublin, ancient monastic ruins in the countryside, formal gardens, and plenty of pastry shops. One day, we went with another set of red-headed sisters in our group (what? how? I honestly forgot about this detail until just now) on a train ride out of the city. Our cab driver from the airport to the B&B told us that if we saw and did anything while we were here, it should be Howth. It was a little hamlet on the water. There were cafes and shops and boats. We found the sea-side path and set out, walking on pure sunshine (very un-Irish) and bending coastal grasses. The path traced the edge of a cliff with waves breaking heartily on the rocky walls below us. We saw lots of birds and almost no people. It was a scene from a movie, a vignette from a love story, a magazine photo-shoot location. The cliff walk at Howth filled my lungs with air, making me light enough, if I really wanted, to run and jump and float up, drone-like, to watch the four red-haired girls–each a pair of sisters—in a state of enchantment, soaked with sun, treading on green, and walking in a line along the wall where the sea met land.

We Aren’t So Bourgeois

It’s Spring Break, and because we have rallied our army of blessed helpers, we got to leave town for a road trip with our other boys. It’s what half the population does during school breaks, but to us it feels quite remarkable. I always think a succession of thoughts when we are able to manage a break like this:

*I can’t believe the stars and the helpers all aligned.

*I can’t believe we made it happen. We really left town.

*I hope Jack will be happy at home. And stay healthy.

*I hope Jack will behave reasonably well and be nice to his people.

We are not so proficient at planning inventive vacations. That got lost in the years of not vacationing because Jack couldn’t do it. Nevertheless, we are content with simplicity.

We aren’t so bourgeois. We are vacation greenhorns. It’s okay. I’m just glad we get to attempt it periodically.

There will probably always be some inward conflict on my part when we leave. Our family vacations aren’t with the entire family. There is a little bit of sadness in the reality of planning for caregivers while the rest of us plan to get away for a few days. Then my emotional pendulum swings back to astonishment and gladness.

Our regular days and our getaways don’t look like other people’s.

This doesn’t bother me so much anymore.

We aren’t other people. We are us.