My latest offering at Segullah is about hurting and healing, which apparently is solidly in my wheelhouse.
Here’s to a lovely Wednesday. Cheers xo.
Something I have learned from being Jack’s mother is this: be present in the moment. Just be there and be okay with it.
This is one of those cliched bits of advice that I would probably tune out if someone posted it along with a beautiful photo on Instagram.
But honestly, it took me years and years of struggle to reach a point of understanding with this principle, upon which so much of my happiness now rests.
When Jack was little and neither of us knew how to manage life together, I spent many an afternoon wishing for some (any!) escape from the clamped down restrictiveness of life with a child who screamed and dismantled things everywhere we went, to the point that we no longer went anywhere. By 4:00 pm every day, Jack and I were both in a state of panic. The walls were closing in on us. There was no one who could help. Days lasted eons. I prayed, during these times, for rescue. From anyone. Any source. My prayers were like those of someone in intense pain, praying for relief in any form. “Heavenly Father, send help. Any help. Please help.”
I’d give Jack 3 baths a day, simply to give us both a moment to breathe. He loved being naked and splashing. It was a sensory playland for him, and a few minutes of rest for me. I would sit on the floor in the hall across from the boys’ bathroom and watch Jack play in the tub. In these moments, when I wasn’t actively chasing, intercepting, carrying, or placating an upset and/or destructive Jack, my thoughts floated around the uncomfortable realization that I didn’t know what to do for Jack. All my efforts ended in zero change.
Of course, with time I’ve come to see that no one has the solutions to our Jack conundrum. Experts, professionals, MD’s, PhD’s, SLP’s, OT’s, and BCBA’s have all tried admirably to give helpful recommendations for Jack, which have historically resulted in limited success.
This is because we are outliers.
Jack is the most severely disabled of the spectrum of behaviorally-challenged individuals.
His aggression is the worst his various school principals have ever seen, which is a really fun thing to be told.
Medications have little effect on him.
Ditto for behavior plans.
Well, let me amend that. With complete focus (i.e., one-on-one staffing at all times, with new and exciting/yet not overwhelming activities changing every 5-10 minutes), Jack can have reduced aggressive behaviors and greater compliance with requests.
You guys, while Jack is nonverbal and mentally delayed, he’s not stupid. He knows what he wants. He knows his frustrations. He knows when people are frustrated by him or fear his outbursts.
Now that he lives far away in a group home, the same issues continue. The difference is that he has full-time caregivers and the results of Jack’s behaviors aren’t bouncing back at me nonstop. The fallout of Jack’s aggression and destruction is dispersed among a great number of people, including everybody’s bosses–the special ed director of the school district, the group home director’s superior, the quality control person for the Division of Services for People with Disabilities. All of these higher-ups know about Jack and his struggles. And none of them has the answers.
What does all of this have to do with being in the moment–just being there and accepting it?
It’s basically this: living in a state of turmoil for so long showed me how to stop and feel, to breathe and accept, and to thank God for any measure of relief.
I learned from parenting Jack that a) things don’t have to be the way you want them to be, and b) you can survive. You can survive unpleasantness and sorrow. You can survive repetition and ennui. You can survive screaming and poop and actual violence from your mentally disabled son.
I know this because I HAVE SURVIVED THESE THINGS. All of them. Repeatedly. And after the horrors and the disappointments come the beauty of NOT being in that moment anymore.
I’ve found that now when I’m doing something I’m not totally into, I sometimes pause to think about the okayness of just doing whatever it is–sitting with a restless children’s class at church, cleaning a bathroom, waiting in line, dealing with kids on the spectrum and their accompanying neuroses, whatever. It’s just a thing and it won’t last forever. Life isn’t meant to be a succession of loveliness without any difficulty. Otherwise, we’d still be in the Garden (THAT garden). Even the three month awfulness of watching my dad die was something I could manage because I saw it as a thing I could do by simply accepting it and helping him through it.
I do it when I’m in the lovely moments, too. I’ll look around and think something along the lines of, “I am playing the piano in Relief Society, and while I may royally mess up at any moment, life ain’t too bad,” or “I am doing the laundry and though it’s Sisyphean, it’s also mindless so I can zone out; also I like having baskets of clean clothes,” or “I am sitting by the fire writing in a peaceful house with 3 of my 4 boys hanging out nearby and this is basically paradise.”
Jack taught me how to accept sadness and disappointment, and to relish times of relief.
Oh, Jacky. Everything I know, I know because of you.
I’m in a state of weird, nebulous conflict when I think about Jack. He is doing really pretty well, at his home anyway. It’s not going as well at school. He knocked out his school principal’s tooth. For real. He is sometimes having to be restrained. He still occasionally bashes his head into walls and doors.
None of this makes me comfortable. The tooth incident is horrifyingly awful. I feel quite helpless. Jeff and I don’t know how to make any of this better. We pray every day for the safety of those who interact with Jack.
And then there is this blog. I’m using it to track my life as it continues with Jack away. But it’s awkward for me to discuss his ongoing behaviors that hurt people and destroy property. I have this underlying sense that everyone would prefer to see glowing reports of Jack making steady, positive progress. If he has to live in a group home, then of course we all want to see that the new setting is simply ideal–that it has solved all the problems.
But this is reality, not a fairy tale. And while I do believe Jack’s story is moving toward a glorious resolution (someday, eternally), we aren’t currently in that place.
Jack is no longer beating up me or his brothers, but he is hitting, kicking, and biting his caregivers and educators. I’m not on the front lines anymore in a physical sense, but other people are. What about their safety? And they aren’t related to Jack and can’t possibly feel the same, deep obligation to him that I feel. What now?
In this turbulence (particularly every morning at 5:00 am when I’m awake despite wanting to be asleep, stewing over things as they unfold), I keep remembering the process of placing Jack in residential care. It was inspired, all of it. Once we knew it had to happen, we proceeded. I had never done it before, so I was learning it as I went. I saw that any time I tried to make decisions based on my own understanding of the process, God gently redirectly my efforts, leading us to Jack’s current placement. My plans (two separate plans!) fell apart. The path God had in store for Jack unfolded clearly. Jeff and I felt that He was showing us the correct plan for Jacky.
So, basically, at five am every day I ask myself, “Do I have enough faith to trust that plan?”
God loves Jack. He loves me. He loves the people Jack is beating up. He knows everything. I’m sure He knows how to see us through this vale of tears and knocked out teeth. He sees the outcome, even though I don’t.
When one feels helpless, what is one to do? I am fostering my patience as I blow gently on the embers of my faith, which sometimes wanes when it comes to Jack and healing and solutions.
Wait on the Lord, basically. Keep praying. Focus outward, on somebody else.
Jesus knows–me and Jack, and the principal’s tooth, and the head-bashing, et al.
I’m in the midst of a crisis wherein I am unsure of the purpose or meaning of this blog. I’m merely letting you know, in case you just don’t know what’s going on here. I don’t know either.
I’ve been shifting my priorities over the last few weeks. I guess the real shift is in my awareness of where I want my focus to be.
I’m doing all the same things–grieving, writing, mom stuff, etc., but I feel a greater sense of responsibility to the people directly around me. My mother. My sons. My students. The people in my neighborhood.
I feel less worried about the future and what it may hold. The result of this is feeling more present and focused on today. And, I’m doing that thing where I pray every morning for inspiration on who I can help that day. “Show me what you want me to do today,” basically.
Of course, this is all beautiful and worthy, except for those times when I actually don’t feel the desire, the capacity, or the love necessary to reach out. At a recent presidency meeting, my Relief Society President spoke about how even when we make an awkward attempt to help or love someone, God magnifies those efforts and turns them into something more than what we can do alone. And I felt the truth in that statement.
The result of this is that I’m thinking about how I can do a better at understanding, being patient, and loving people when they aren’t (or I’m not) being lovable. And refraining from judgment, which is THE WORST for flawed people like me.
Sometimes being a human who wants to help her fellow humans is painful. It’s easy to serve when it’s convenient and well-received. It’s more of a painful stretch when it’s outside our comfort zone and daily routine, and pushes us into a no-man’s land where our good works may not be met with accolades. There are occasions when our honest efforts to help may be met with disdain, or some other great wall of push-back.
I once took dinner to a woman who had just had a baby. She was single at the time. We knew each other and talked in passing at the gas station. But when I showed up with dinner (she had agreed to receiving meals from the Relief Society), she seemed bothered, even angry. I cooed over her newborn but my attempts at any small talk didn’t go anywhere. I unloaded my tray and sought to flee because I could tell how uncomfortable she was with me there. She didn’t thank me or speak to me as I left. Honestly, it shook me up a bit, this scenario of making a gesture of support and having it end with so much tension.
The whole experience did compel me to evaluate why I did it.
Why did I sign up on the list at church to take her dinner? Why did I go to the store, pull out my crock pot, make barbecue chicken sandwiches, assemble a salad, bake cookies, guard the chips from my kids, and do it all while managing Jack and the others?
Did I do it because I wanted to be appreciated and thanked? I didn’t think this was my motivation. But was I sure?
Here’s what a few uncomfortable days of pondering revealed to me:
I believe I did it because she needed to know that people cared, and that they weren’t condemning her.
I know I did it because having babies was brutally hard for me, and while it may not be as hard for every woman, I wanted to help during a difficult time.
In hindsight, I think I can see the situation better. She felt awkward and it made the encounter awkward. She was skeptical of me and everyone who knew her situation. Perhaps more than she needed dinner for her family, she needed to be understood, which I didn’t appreciate at the time.
Fundamentally, I think I did it because I love Jesus.
I love Him. He loves her. It’s love by association, and it bridges the gap.
Not that anybody asked, but here I am with am with a list of book reviews for the things I’ve recently read. I think I mainly do this for the sense of accomplishment I get in looking at my list of conquered books haha.
Also, books are proving to be my sanity this winter (she says un-ironically, though books have always been her sanity since forever).
I shall group them into genres, because I’m an English teacher, yo.
Books about medieval and Reformation England, featuring…
…Ken Follett’s trilogy about the city of Kingsbridge, the site of a cathedral (built in book 1, The Pillars of the Earth, set in the 1100’s). I actually read this one several years back and loved it, which made me super jazzed to see book 2, World Without End, which happens in the 1300’s and features everyone’s favorite pandemic, the Black Plague. You guys, I LOVED this book. Ken Follett is smart and writes a straightforward, readable story about architecture, war, engineering, public health & disease, and regular everyday life in the middle ages. I relished this book and then joyfully drove to Costco, where book 3 was available in hardback. This one is called A Column of Fire and is set in various locations in Europe, including England, in the 1500’s where the Reformation rages and turns people’s lives on their heads. I love me some good historical fiction about the periods which were the hinges upon which everything turned. Give me all the English history. I’m obsessed.
These are the books I read at the gym. Behold:
Hunted by Meagan Spooner. This is a retelling of Beauty and the Beast, a story I’ve always been partial to. Did I love this version? No. Did I like it enough to zip through it while on the elliptical? Yes. It was fine, enjoyable even, but no Robin McKinley.
The Bear and the Nightingale by Katherine Arden, a Russian fairy tale with equal parts ethereal and creepy. Apparently it’s part of a planned trilogy (since this is how YA books are written these days). I may or may not read the subsequent books. Again, it was sufficiently intriguing during my workouts.
Wintersong by S. Jae-Jones. A dark Phantom of the Opera-reminiscent story/also part fairy-tale set in olden time Germany. It’s about a girl with a difficult home life who composes music, and who (through various foibles) gets sucked into the underworld of the Goblin King. It’s rather Goth and pretty creative. I would not describe the characters as especially well-developed, yet again, I ate it up on the exercise bike.
Beast of Ten by Beth Brower. I’m reading this one now, and it’s pretty addictive. This is super high fantasy, as in a fully-realized invented world where people have various innate super powers that they employ in the service of good or evil. Literally, light and darkness play big roles in this story about Ember, a girl held captive in the perpetual winter of the Pyre, which is a giant fortress. It kind of reminds me of Brandon Sanderson, but I stopped reading him halfway through the first book, so this is better. Brower (a Utah author!) also wrote The Q, which I also enjoyed.
A Wrinkle in Time by Madeleine L’Engle. I obviously re-read this in preparation for the upcoming movie, along with most of the book clubs in America. I read it when I was in elementary school, but I didn’t like it then. In fact, I didn’t finish it, mainly because I hadn’t lived enough to appreciate it. With maturity comes a greater ability to grasp the nuances and beauty in a groundbreaking book like this one. I read it in a single day and I am now converted to the Wrinkle in Time devotee club. The theme of this book is love, people! We need this book and it’s movie.
Mormon Feminist/Spirituality Poetry & Essays
Just to clarify, feminist writings aren’t man-hating or spirituality-denying. They are female-driven and equally value the female experience, which brings us to…
One Hundred Birds Taught Me to Fly by Ashley Mae Hoiland, or Ashmae, as she is known. I’m halfway through this book of essays about being a human–referencing Ashmae’s mission in Uruguay, her life as a mother of tiny people while living overseas, and as a sister grappling with family members, love, and belief. I’m so glad she wrote (and illustrated) this. Books like this give me hope that there’s room in the world for talking about God and doubt and spiritual things.
Mother’s Milk: Poems in Search of Heavenly Mother by Rachel Hunt-Steenblik, illustrated by Ashmae Hoiland. Approximately 18 months ago, as Jeff and I were driving Jack on one of his 10,000 Sunday drives which were our duct-tape-on-the-leaking-dam survival method for the endless weekends, I bewailed a Gospel Doctrine discussion where the comments were dominated by men. Entirely. I raised my hand and shared a comment about trials, which one dude (I’m not kidding) invalidated, telling me my interpretation of the Book of Mormon was wrong. For real. I was disillusioned by everything in my entire world. And I wanted to spew fire, dragon-like. Instead, I vented to Jeff about my absolute need to understand my Heavenly Mother. She’s God, too. She created me, too. We don’t talk about her, which isn’t a doctrinal thing so much as it is a church culture run amok thing, based on (I believe) a fear of sounding feminist when feminist is a dirty word to many people. I said to Jeff, “Knowing about Heavenly Mother and understanding Her could give me strength, which I need in my life.” Two things have happened in response to this: a) I explored and wrestled and came to terms with the fact that everything I know about my Heavenly Father, reveals as much about my Heavenly Mother. They’re both God. They both created all human spirits. They are completely unified. So there is a divine feminine, even if lots of folks think it’s blasphemy to talk about (WHICH IT ISN’T), and b) I read this book of lovely poems which resonated with me. Women are divine, too. My Heavenly Parents say so. Also, I still comment in Gospel Doctrine, and my insights are smart and honest. And I don’t bloviate.
Amazing Books That Wes Anderson Needs to Cinematize
A Gentleman in Moscow by Amor Towles. I read this book because Ann Cannon said it was the best book she read last year, and when it comes to the books, Ann gets around. I’ve already mentioned it plenty on this blog, so I’ll just say, this book is intricate and beautiful. The writing, characters, and story are fully-realized and astonishingly crafted. I love this story. Thanks for the recommendation, Ann.
And thank you, world, for having books.
When I am driving, I think all the thoughts and have all the writing ideas. I tell myself that when I am not driving, I will surely sit down and compose said thoughts, that very day.
But then poof! I’m making dinner, or at the gym, or doing laundry, or at work. And the composition of ideas in my head flies away, fairy-like. Creativity is ethereal, guys. You use it or lose it, in my experience.
So what shall I write, if I can’t remember all the things I wanted to write?
I will write about goals.
I set no New Year’s resolutions. In years past, my repeating resolution was simply to survive another year as Jack’s mother. I didn’t set myself up for failure with grand plans beyond that.
This year is different. And it’s not even New Years’ anyway.
Jack lives in a home of his own. He has full-time caregivers. I’m involved in his life, but it’s not the daily sensation of dog-paddling in the middle of a stormy ocean. I am one degree removed from the intensity and fatigue of being the lightning rod, so to speak. Also, I’m mixing metaphors, but whatever.
In honor of my dad, who is now pursuing eternal life and progression beyond the veil, I have been setting goals. I am determined to accomplish them.
My father was a goal-setter, even at a very young age. He desired to always be working toward something. He needed a plan, a vision, a purpose. With this as his motivating philosophy, he achieved so much in his seventy-one years on earth.
I’ve felt desolate in recent days thinking of all the years of my life that remain where my dad won’t be here. It’s the most painful part of this particular grief.
So, in order to get past this limited and limiting awareness–this tendency to focus only on me and now, I’ve told myself to once again take up being mindful. I’m looking around me and above me. I’m determining to make progress and do some good. I’m also being generous with myself when it comes to recognizing the simple things I’m doing right.
And so, behold…
The List of Some Good Things I Have Done in the Last Seven Days:
I feel like I have more energy than I’ve had since Jack left. It turns out that books, exercise, cooking real food, cleaning up clutter, and being present with people are utterly satisfying.
I think my dad approves.
Things on the Jack front have not been quiet.
Despite having a rotating supply of caregivers, his own house–which is a controlled environment with fewer rogue factors, and a team of educators doing their level best to meet his needs, Jack’s behavior continues to be somewhat erratic.
We’ve had long meetings with the school. We read daily email updates on Jack’s school day. His caregivers take him to the doctor all the time in an effort to stay on top of ear problems.
Last Friday, I met Jack and two helpers at Primary Children’s for an eventful (read: crazytown) ENT appointment and then drove downtown to the behavioral health clinic to see his psychiatrist. It was six hours of Jack, which I used to do all the time, and yet this time, I was exhausted.
Jack’s needs never ebb. If anything, they tend to peak at times, requiring more than the average (which compared to many is already greater than average) level of care. Staff who work with Jack tire quickly. All of this is stuff I know intimately because I learned it over the many years when I was the default caregiver. It was my job, and it wasn’t a job I could quit.
The neuropsychiatric hospital recommended that Jack always have one-on-one care as he needs constant attention and rotating activities (every five to ten minutes). This was their official treatment plan, along with requiring Jack to follow through on instructions received and vigilantly monitoring him for signs of being overwhelmed, in order to head off problem behaviors before they happen.
These are all things I think I’ve always known, but which are almost impossible to achieve when you have LITERALLY ANY OTHER FACTORS IN YOUR LIFE, i.e., other children, dinner to make, laundry to do, a job, errands, cleanup, and a home where neighbor children and the UPS guy are dropping by and changing the dynamic of Jack’s home life.
Even now, when he is without any housemates (temporarily), and receiving one-on-one care at all times, Jack still has occasional outbursts requiring that he be restrained.
The hospital also maintained that “curing” Jack of aggression isn’t going to be a reality. We can only work and hope for fewer and less intense aggressive behaviors. It’s kind of the “there is no cure” conversation. Also the “this will persist in some form or another for the rest of his life” conversation.
At school, Jack now has his own separate classroom. It’s a more controlled environment, without the unpredictability of other students. His team works two-on-one with him for instruction with a workable communication system, all while maintaining a routine he can tolerate.
He had two good days at school after returning from his month at the hospital. And since then, he’s been kind of a disaster at school. He’s been hurting staff and destroying property. He acts sick, but when his caregivers take him to the doctor, he’s not sick.
All of this makes me wonder if he’s sick of the struggle. Is he just beyond frustrated? Is it the massive growth he is undergoing as a teen? Does he legitimately feel just terrible? Or does the fact that he points to the card on his communication board reading “sick” simply indicate that he’s sick of all of it–not being able to speak, not being a typical teen, not having a say in so much of his daily experience?
Jeff thinks I’m projecting my own wants and needs on Jack when I wonder things like this. But how can we really know?
This is when I feel utterly helpless. I can go to his appointments and talk with the school and pray and pray and pray and pray. But ultimately, I can’t fix anything.
This is when I’m all, “Jesus, here is the steering wheel. Please please take it.” He’s Jack’s brother, too. He’s his Savior, too. He’s knows Jack’s inner life better than I do. He is capable of effecting the real change Jack needs.
It’s not as easy as it sounds, turning it all over to whatever God wants to happen in Jack’s life. But we’ve been doing this for some time now. When we hand it over, the solutions eventually come.
Dear Primary Children’s Hospital,
Thank you for having responsive staff and doctors who can handle all the nutty behaviors. When Jack and his entourage enter your doors, we essentially put you through an unwitting, rigorous testing period. Can one’s facility stand up to a nonverbal, frustrated, ear-infected teen with severe developmental delay? Let’s find out!
Dear University Behavioral Health Clinic,
Thank you for existing and for being in our corner these last 13 years. My goodness, we would be up a creek without you. Also, paddle-less.
Thank you for putting your head in my lap today and letting me scratch your scalp and run my fingers through your gingery curls. You’re such a good, brave boy.
For installing the new microwave after the old one died when we lived a dark, sad existence for five long days without one, I salute you. You are super handy and wonderful (and lovable) to have around. Same goes for your work with the fireplace mantel. It is magnificent.
Dear My New Refrigerator,
I realize I am perhaps TOO happy about your presence in my kitchen. But, New Fridge, I’ve never before in my life owned a brand new fridge that I picked out myself. So you see, MNF, I think you are a thing of beauty and I love you. Putting away the groceries on your shelves yesterday was a gratitude exercise, which may make me a pretty weird-sounding, yet completely honest person.
Dear People of Instagram,
Consider yourselves LUCKY and also BLESSED that you were not subjected to photos of a) My New Refrigerator or b) my Costco groceries reposing in loveliness on said fridge’s shelves. The thought of posting them crossed my mind. I squelched it (you’re welcome).
Watching your basketball game was super fun for me this afternoon.
Dear Wasatch Mountains,
Your pink, frosty peaks did a number on me this evening. Sheesh, the shifting light, the smudges of pigment, the ephemeral brilliance of your altered states! This is why people (who aren’t me) write poems.
Dear Thomas S. Monson,
Thank you for inspiring me to be a better person. The best funerals, I believe, leave participants with a feeling of uplift and hope. I only caught a few minutes of your funeral broadcast, President Monson, as I drove from Jack’s appointments to Jack’s other appointments, but I snatched up the sense of goodness which permeated the service and, as it were, your life. Thank you for being you, and for making people feel important and loved.
I’ve never been so neutral and okay with you before. I think it may have something to do with the 50 degree daytime temps and the storms which basically stay in the mountains. Maybe, January, it has something to do with the fact that for the first time in a very long time, this new year feels like a real fresh start. 2017 pummeled me more than once, but I don’t feel desolate. I’m hopeful, plus grateful. Which equals happy.
Things are a little weird right now, at least inside my head, mainly because of the old grief houseguest. And yet, here I am bravely sallying forth, even when that means occasionally doing things like going back to bed on a Wednesday morning after driving Charlie to school in the rain. Which I did yesterday, and which I do not regret one whit. It was fine, because then I got up and did all manner of email/teaching correspondence and updating of lesson plans. And laundry.
Anyway, the bottom line is, grief is back. She’s a withered old woman in tattered babushka garb who silently appears, sitting on my couch and doing nothing other than lending an air of quiet, heavy sadness to my surroundings. It’s not her fault. She’s not even real. She is merely a projection.
She’s an embodiment of the nebulous feelings wafting into my life with greater frequency in the last 8 months, first with Jack’s move to residential care and then the recent death of my father. The emotions of which she is comprised are loss, separation, altered hopes, heavy acceptance, adjusted life plans, a growing awareness of life’s fragility, and constant change.
This very, very serious list doesn’t mean I’m not coping, or moving forward, or being grateful, or feeling peaceful. I am doing and feeling all of these things, much of the time.
And yet, grief holds in her gnarled, arthritic hands both peace and sadness, gratitude and sorrow, hope and weariness. Maybe she has a basket to help her carry all of it, the contradictions and the enormity of emotions.
I don’t have a basket, and I don’t want one, because it’s all too much for me to carry around.
“Cast thy burden on the Lord, and trust his constant care,” says the hymn.
I am doing this. I am accepting all the things I’m asked to experience. I’m asking Jesus to bear the burden with me, so I can get up and do the things I need to do.
And he does, so I can.
I realized today as I drove to the university to teach my classes that through both of these processes (Jack’s care and my dad’s passing), the central emotion I have experienced is buoyancy. Is that weird? I feel lifted. I don’t feel low, at least not most of the time.
I feel like I am being raised up. I feel buoyant. Not because I myself am inherently buoyant, but in the sense that I am holding tightly to something that keeps me afloat.
By which, I mean Jesus of course.