Today is my Jacky boy’s 14th birthday. It’s bittersweet. I’m not with him. I love him. Thus continues the complexity of being Jack’s Mom.
My Segullah post for this month is about Jack and summer, seasons and swimming pools.
This year my sense of feeling bludgeoned by motherhood has changed into more of a subtle, sad acceptance that my mothering experience is unusual and always will be. It’s not typical. It’s not what I expected. But it’s not awful, either. It just is, and I’m okay with it. There is beauty in variation and I love my people.
I’m recognizing now that many (or most) women have complicated emotions about this day. It’s a day of weird, layered expectations, personal and cultural. It maybe isn’t intended to be that way, but it’s become this.
I don’t see my young teen son much. This used to feel like an amputation. Now I feel kind of a hollow…peace, if that even makes sense.
There is an empty space where I hold onto Jack because he isn’t here.
I’m oddly filled up with a pool of calm, still gratitude for Jack’s caregivers, for the system which exists to give people with disabilities the right supports they need for a happy life. I’m so glad Jack is child of God, who knows what Jacky needs and helps us find the best solutions.
This is my Mother’s Day gift.
Here is my Mother’s Day post from last year. It says everything I’m feeling.
Yesterday was the sort of day when autism reared its feral head and flashed its jagged teeth at me, from two different children. Yay, Mondays!
In the morning, Truman didn’t want to comb his hair or pick up his dirty clothes from the floor. He called me a jerk and said he didn’t like me. He scowled and argued and shouted.
The only way past this monster behavior was right through it. He didn’t want me to brush my teeth and do my hair. He wanted me to get in the car in my undies and drive him to the gas station for a treat. NOW. Which I didn’t do, because we don’t reward this sort of demanding, inflexible behavior.
I ignored his ranting while I got ready and listened to 2nd Nephi. Truman remained angry at me. When he saw I wasn’t going to relent, he picked up his dirty clothes, combed his hair, and decided to be calm, at which point, I drove him to the gas station.
Autism, 0. Me, 1.
After school, another kid had a complete and utter meltdown in front of his friends, various other neighbor children, me, and the sibs. It was the sort of epic episode we haven’t seen in some time, with screaming, kicking, running away, and yelling of insults.
I sent the friends and the neighbor kids home (they couldn’t leave fast enough; the awkwardness was palpable). After the shouting relented and the adrenaline ebbed, said child wept in my arms. It was the post-meltdown exhaustion cry.
During both of these episodes, I was internally raging. Why won’t my opinionated little offspring listen to me? Why must they be so rigid in their thinking? Why is autism such a monster at times?
Outwardly, I held it together. I remained calm and projected peace (not the easiest thing with a rabid little person screaming at you). This diffused the situation somewhat and was a sign to me that a) I have been coping with kids and their meltdowns for a long time and in various incarnations, and b) I’m a grown up now. I was able to step back and stay separate from the fury and emotion. While I didn’t know how to solve the situation any faster, I knew it would end and that the meltdown didn’t have to define the rest of the day.
It was pretty exhausting, though.
These sorts of insane motherhood moments have me thinking about what it means to be a woman.
I have, at times, felt anger and bewilderment at the trauma that is part of my life because of menstruation, pregnancy, labor & delivery, postpartum depression, the MANY MANY SO FREAKING MANY relentless rigors of mothering, not to mention the sexism and harassment which all women inevitably face at some point in their lives.
The physical and the emotional toll of being female can be high, and really, really maddening.
As I was driving to Salt Lake to run errands with my mom a couple of weeks ago, I was thinking about the parts of my life that are distinctly feminine: mothering, teaching, nurturing, being with, and serving. I thought about how much of my life is spent helping: kids (including kids with disabilities), university students, my mother, and other women (friends/neighbors).
And I recognized that I like it this way.
I like that my life is organized in such a way that I get to be a person who has the distinct opportunity to build up and support people. I really like it.
This doesn’t mean that I’m okay with mansplainers or misogyny.
To paraphrase my nephew, as he recently prayed aloud at bedtime, “We’re grateful for everything in this world, except hippies.” In this scenario and for my purposes, I would swap out “hippies” for “sexist people.” I feel it still works, haha.
Jesus was the greatest champion of women. He was radical in his equal treatment of them for the era and culture in which he lived. He appeared first following his resurrection to a woman. He spoke of his mother’s care as he hung, dying, on the cross. He wept with Martha and Mary when their brother Lazarus died, and then washed away their sorrow when he raised Lazarus from the dead.
I deep down know that Jesus understands what it means to be a woman. I’ve felt his empathy when he has helped me slog through pregnancies, recover from childbirth, grieve at losing Jack to distant care, and cope with the ongoing trauma of being a special-needs mom.
I have felt, recently, that God gave women the opportunity to care for other people not because we are oppressed, but because we are chosen.
While I don’t know what it is, I feel there is some sort of big, beautiful, not-yet-fully-knowable refining power in caregiving, teaching, and nurturing; I’m glad that my life is full of these things.
My favorite scripture from the account of the nativity has always been this one, from Luke 1:28, about Mary. “And the angel came in unto her, and said, Hail, thou that art highly favoured, the Lord is with thee: blessed art thou among women.”
I have always read this as meaning that yes, Mary was special, but also that by association all women are precious and beloved of God and Jesus Christ. Gabriel’s meaning was obvious to me: Mary was hand-picked for a righteous purpose from a pool of equally-loved and cherished daughters of Heavenly Parents. You are free to read it however you wish, but this is how I see it.
I love what it says to me about being a woman: that it is fraught with unique difficulties, as well as unique gifts. My life has taught me that my gender is no barrier to feeling a tenderness, connection, and understanding with my Savior. If anything, I believe being a woman sort of opens a conduit between me and heaven. Having a Mother in Heaven is a big, beautiful truth that, to me, says women are infinitely powerful, divine, and expansive in our purpose and abilities.
All of which is pretty fantastic.
I have been in quite a lot of pain the last couple of weeks. My back has been completely spazzing out, plus there was another recurring *wink* issue. (Please note, this post talks about my reproductive system, like a lot. If that is too much for your delicate eyes, I get it. Go ahead and skip it xo)
I don’t like writing when I hurt. I don’t like doing much of anything when I hurt. Talking about it can feel like complaining, when that’s not my intention. But neither do I seek out other people’s alternative healing solutions for my highly personalized pain situation. Basically, I’m just hesitant to talk about these things. And as much as I love everybody’s input, that is not what I am looking for here. I am seeing professionals, who are helping me so this isn’t a cry for help or for ideas. I’m just sharing what I’m learning as a person, thanks to my weirdo back and hip. Thank you for understanding, and please don’t send me any suggestions.
With that preamble, I’ve been thinking about why I am hurting and why it isn’t going away, as well as what I am taking away from this process.
I’ve been working for months in physical therapy to help my core, which IS stronger. But my back pain never really goes away. It spikes at (what I thought were) random times. Jeff gave me a blessing a few months ago when it got really bad. He blessed me that a) the physical therapist would be inspired to know how to help me, and b) that I would be inspired to know what to do to help myself. Somewhere in the recesses of my psyche, I might have cocked my head at this point and wondered why my relatively-straightforward-seeming back issues would need all this hefty inspiration for creative healing.
Yet here I am, weeks and weeks later, and I’m seeing that Jeff’s words were prescient. God knew that all the usual things weren’t going to lead to me feel better anytime soon.
And so, I’ve prayed for help in knowing what I’m missing in this whole pain puzzle. Part of me wondered if I wasn’t going to get an answer. I have dear friends who deal with much more severe chronic pain and health conditions. I even asked the PT if I need to begin accepting that this is simply the way it is going to be for me, going forward.
His answer, “No.”
So that’s hopeful. We are going to keep working on a plan to restore my back to a happier place. This is reassuring to me. But still. No answers, yet.
We knew that my pain spiked during my periods, but after praying for insight, I also started to see that it peaked during ovulation as well. There was nothing random about the pain, after all. With a little bit of input from the Holy Ghost, a clear pattern emerged.
One morning as I drove Charlie to school, I had a spark of an idea: call your OB-GYN’s office and ask about options to avoid that whole monthly thing altogether.
So I called. They immediately agreed that we need to skip the entire misery cycle, considering my current state, and prescribed a continuous birth control pill. Voila! I was ecstatic.
Until. The pills made me feel like I would rather be dead. It was worse than pregnancy. I was a nauseous, miserable zombie mess. And my body didn’t instantaneously skip the cycle, so my resulting back/period pain was, I’m not kidding, a lot like labor, except without the good meds. It was the perfect storm of physically and emotionally barely holding on to the will to live.
A week into this nightmare that didn’t seem to be easing up, I had another little inspired thought: call the OB-GYN’s office again. So I did. They put me on a different pill, and I am slowly returning to the land of the living. This is an enormous blessing.
But there is still the teeny tiny issue of MY BACK STILL HURTS.
The PT modified my exercise routine to avoid overworking and stressing my core, so I have continued with this gentler workout and stretching regime. And now I am at the point where *sigh* I must be patient. Healing doesn’t happen overnight, especially my healing. It’s a convoluted, problem-solving process.
I asked Jeff the other day as I brushed my teeth, “I wonder what I am supposed to learn from this whole experience.”
I then immediately had this thought: to understand what it feels like to constantly, physically hurt, so you can have empathy for people who hurt all the time.
Why do any of us have to go through pain and misery? Why do some of us face prolonged seasons of physical suffering? I don’t have the answers.
But my wonky back has opened up a space in my life where I’m learning to receive instruction: on listening for answers, on understanding my fellow humans, and on the reordering/refining power of pain.
I’ll let you know what I find out.
I’ve been thinking about progress, like how it happens and so forth.
Part of this is because I have been looking at my life through the lens of We Are Now One Year Out From Jack Leaving Our Home; part of it is because the other boys are growing and changing, too.
Behold, a few examples:
The difference is enough that my knees don’t hurt anymore, huzzah. It started when I began exercising (when Jack was still in my care, but things were going off the rails). It continued when stress took away my appetite (when Jack entered residential care). It stabilized when my appetite returned, but I ate less than before. I physically feel stronger and better than I’ve felt for the last few years. Without the daily pressure of daily caregiving for a person with intense behavioral needs, I’m not in constant survival mode, and my health is reflecting this change. I see this as a good thing that came from a hard situation.
I attended a musical performance by his fourth-grade class this week wherein students a) rapped about weather instruments, b) sang a doo-wop number about the rock cycle, c) recorded their own ambient habitat soundtracks (Charlie swung a cord around, creating the sound of wind in the desert habitat), and d) literally drummed as a whole class on bucket drums to a Bastille song. All of this was rather astonishing to me for a few reasons. Charlie hates (or used to hate) performing. Also, he couldn’t read, and struggled to keep up with his peers. But on Wednesday morning, the music teacher called three students from the risers to read an introduction to their habitat soundtrack. Charlie stood in front of a room full of his classmates and parents, held the microphone, and READ ALOUD A PASSAGE about snakes, insects, wind, and woodpeckers, at which point I WANTED TO JUMP UP AND SHOUT! This is big. Really big. Oh, and the principal of his school called me Monday to say that Charlie was in his office because HE IS STUDENT OF THE WEEK. Charlie Pickles, you are killing it, dude.
This is true. Mrs. Peterson has corroborated this information. He thought for a minute and added, “And I finish my math first because I figure it out in my head.” I’m floored by this, as a not-intuitive math person. Innate math smarts, I’m convinced, came from my dad, skipped me, and went straight to Littlest Boy. Jeff and Henry do get math, but with a fair amount of work; in contrast, it takes a village to help me learn it, hence ENGLISH MAJOR. I’m also pleased that anxiety, rigidity, and behavior concerns AREN’T stopping Truman from being an amazing little kindergartener.
This means we are planning some road trips to partake of culturally-enriching events and I want to shout it from a rooftop, or maybe just Twitter, that MY FAMILY CAN DO THIS SORT OF THING, NOW! And Charlie and I are now ballet season-ticket holders. I’ve yearned for this: music, Shakespeare, live performances, beauty, art, transformative experience, sharing it with my family. I love all of it so much, and it was absent from my life for so long.
I suppose what I’m trying to say is that since Jack left to live in a group home, we are left with this enormous sense of loss that a member of our family can’t come home. He simply can’t. His needs are too great.
But the growth and progress we are seeing in other areas is pretty remarkable, too.
I am smart enough, thanks to being tutored in parenthood by Jack these many years, to recognize that these positive changes aren’t really the result of anything I’ve done. They happened because God loves Jack and helped us know that he needed a change in care. Then He showed me what to do to find the right placement with the right people for Jack’s current developmental state. And God loves Jack’s family and wants us to have good health and music and math brains and improved reading skills. And Shakespeare (definitely Shakespeare).
So, it’s been a year. Despite being a painful, stretching experience with immense change, there is a great deal of beauty and goodness that has followed the difficulty.
There are, in essence, wildflowers blooming from the ashes of the forest fire that roared over us.
Fire destroys, but it also cleanses and renews.
We have been polished by what, I have discovered, was a holy experience.
Yesterday, Jack’s support coordinator called after visiting him at his new home. His report jived with mine from our visit a few weeks ago. He said Jack was as relaxed and calm as he’s ever seen him.
There is a lot of thankfulness flowing through me, for the positives we are seeing since Jack moved to a new placement.
He is still having to be restrained on occasion when he hits his head on the coffee table or the walls. Food is still a big trigger for his behavior outbursts (I honestly feel like this sentence could apply to me, giddyup!). BUT, Jack is learning the structure of his new life and his caregivers are well-equipped to handle him. Instead of a steadily increasing, frenetic crescendo of behavioral chaos, we appear to now be firmly planted in peacefulness.
So there’s the update. The month of March was a cluster cuss of trauma. April has been the opposite of that.
In other news, Truman is taking an ADHD med. This is new. For several months I had been thinking (and prompted to think) about this as an option. He’s on what the psychiatrist calls, “a subtle medication,” which is honestly doing great things for him. His kindergarten teacher told me that he is doing “amazing,” and is working and behaving so well, he is usually the example student of the class. He kind of went from “feral child” to “mostly angel kid” in a short period of time.
My dad is somewhere, possibly smug and definitely happy rn, saying “better living through chemistry!” and I am mentally high-fiving him.
Also, I’d like to add to my list of Fabulous Things About Being Forty.
You may remember (from before): a) I never have to be pregnant again, b) everyone sleeps through the night, c) the kids are growing and becoming interesting/terrific people, and d) I know what I like.
Here is my addendum: e) I am a grown-up now, meaning f) I understand myself, as well as various human tendencies, better than at any previous age, and g) I am confident in myself. This knowledge is a result of the hell I have faced as a special-needs parent. Oh HI THERE, wisdom.
One of the side effects of having less perpetual trauma in my life is not having as much to write about. The low-hanging fruit of adversity isn’t waiting for me to notice it, and then (with not all that much effort from me) basically writing itself.
Yet when life is peaceful, writing is work (pronounced with three syllables “wuh-HER-k” or something). And so, little blog, this is what I’ve currently got, which is to say: not all that much to say.
“What’s the point of this blog, then?” someone might ask, and to which I might say, excellent question.
Probably it will be about Jesus, though.
And so begins another installment of Posts Where I Write About the Books I’m Reading.
Books Tangential to Classic Books That I Love
This is a retelling of Jane Eyre (best book ever–BBE) from the perspective of Edward Fairfax Rochester. Written in autobiographical form, it does a nice job of humanizing and fleshing out the character who we (meaning me) already know and love. Shoemaker’s writing follows Charlotte Bronte’s style closely enough that the two books feel related. This book delighted me, partially because I love anything adding to the story and mystique of the BBE, and partially because it was written so well. Mr. Rochester intimately tells the story of his childhood, his education, and the periods of his life which are essentially unknowable gaps in Jane’s telling of her story. Shoemaker has created a delicious backstory which both softens Mr. Rochester’s stormy character, and reveals his morals and motivations regarding his prickly life choices. I didn’t want it to end. Also, the ending was lovely.
A dark and moody tale of a family living in a creepy, ill-fated English country home, this novel excels in establishing a dark and foreboding tone in the vein of Daphne du Maurier books. The way the book jumps around in time and features people’s lives turning on the hinge of tragedy (in a crumbling English country home) was distinctly Kate Morton (did she stop writing books? whyyyy?) The last third of the book didn’t maintain the same mysterious mood for me. It kind of lost its luster for me when it simply became a story about people’s weird choices.
Another War Book
A tale of female spies in Northern France during WWI, this book also skip-hops into the late 1940’s just after WWII’s end. I love a story about brave women, scared women, regular women who make mistakes, resilient women, tough women–which this book has. The villain, however, (beyond just THE GERMANS) struck me as too evil, in the sense that he was basically one-dimensional. Also, every single woman in this book uses/abuses/is abused because of her sexuality. This reiteration was likely an intentional choice by Quinn, but it struck me as being overused to the point of being predictable. But maybe that’s how wartime is for a great many women, what do I know. It was an intriguing story, but it fell a little flat for me. I may need to take a little break from war stories.
I am probably the last person on earth to read this book, but I’m glad I finally did. You probably already know about this wildly popular novel, but here’s the premise: a grumpy old man in Sweden, through a series of hilarious encounters, interacts and befriends several of his neighbors. Ove’s life unfolds in flashback sections, which describe just how he became the lovable curmudgeon he is. It’s a book that will make you laugh and renew your faith in humanity.
Alexander is a neurosurgeon who, because of his intricate scientific knowledge of the human brain, can’t seem to reconcile God or an afterlife with his daily experience. But when he develops a deadly brain infection that nearly kills him, he describes what happens to his SPIRIT while his non-functioning brain sits encased in his unresponsive body for a week’s time. And it’s quite a story, guys. People’s stories about the afterlife have different elements, but one similarity, a common denominator for all, seems to be the overwhelming feeling of peace and love they experience in this spiritual state. I was moved by the clarity and richness of Alexander’s description, particularly as he went from being a non-believer in life after death, to a scientist who is basically devoting his life to recognizing the importance of understanding that we are beings who exist beyond what our brains tell us to do. He calls the human brain more of a filter than a thinking organism, because he experienced that our brains wouldn’t be able to process the vast amount of light and understanding that exist beyond our human experience. This was a fascinating read.
This book was deeply depressing to me. Green really knows how to write teenage characters, and he’s good at tragedy and human relationships. But I had a hard time getting past the drunkenness, porn- and tobacco-use, and sailor-esque speech of the teens at the Culver Creek boarding school in Alabama. And I’m not really prudish (a function of being a once-English major made to read ALL MANNER OF EVERYTHING). There was just such a sense of unmoored purposeless-ness in these poor kids’ lives. It was heartbreaking. Maybe that was the point. I had a hard time stomaching this one.
I’m two-thirds of the way through this book about humans caught in a literal fairy-world, which is a low-key frightening place. There is a great deal of political and family intrigue in this tale told by a mortal girl named Jude. The ruling class of fairies hates her (for various reasons), and she learns to defend herself from her dangerous enemies and advocate for herself from forces who seek to oppress and even destroy her. It is essentially a story about the importance of choice or agency, as the fairies try to control her thoughts and actions through magic. Jude values independence and her free will over power, wealth, or any other enticement. This is a richly-imagined and enormously creative book.
Whodunit Set in Vintage England
I’m only thirty pages into this story of two ten-year-old girls who set out to solve the mystery of their missing neighbor during a heat wave in 1976, but already I’m hooked. I haven’t read enough to really detail the arc of the story, but the writing thus far is perfect. It’s charming, in a way that books about possible murders shouldn’t be charming, but nevertheless are.
What else should I add to my gigantic stack of to-be-read books?
Last night I dreamed about Jack. He was at his new house doing Jack things. He was playing and was happy. That was the entire dream. Short and fuzzy, as far as my dreams go.
Nevertheless, it was kind of a little gift.
My visit last week with Jack was brief, but thoroughly peaceful. When we got there and I saw him, I realized my hands were shaking. Too much anxiety festering, I guess, about the new placement and my separation from my son. He went through his Easter basket, separating out all the Reese’s so he could eat them first. Some things never change, by which I mean Jacky’s passion for peanut butter cups will be eternal. He latched quickly onto his two handheld fans that Charlie and Truman found for him at Target, and he was pretty jazzed about the bubble machine, too. He was utterly disinterested in the new clothes and sandals we brought. When I tried to sit by him, he gently pushed me away with one finger, haha. Teens.
Being in his new home, seeing him calm and peaceful, and talking to his house manager steeped me in a feeling of rightness.
Though I was literally quivering when we arrived, by the time we left, I felt amazing–like a human manifestation of calm. Where before I had been full of trepidation, I was now channeling the lovely peacefulness I felt at seeing Jack’s new situation.
Sometimes I think about the number of people on the earth, the number of people in Utah, the number of people in Utah who have autism or a child with autism, the number of people in the university where I teach writing, the number of people I know whose lives are a series of ongoing struggles, the number of people in my midst who face traumas and heartache even greater than mine–and I wonder how God knows us all. And how can He know us deeply. How?
I’ve been reading in 3rd Nephi about Jesus’s visit to the Americas after his crucifixion. It’s a tender handful of chapters for me, particularly the part where, after he says he is leaving to return to his Father, the people visibly yearn for him to stay. And because he is our Savior and brother, he knows this, is filled with compassion, and stays. His presence is the best gift.
Then, he asks the people to bring to him all those who are sick–in any manner, so he can heal them.
This passage where Jesus heals those with various illnesses and disabilities used to just do me in. Ugly crying, a sense of helplessness, and frankly raw jealousy–this is where I used to go when I read those verses. I wanted it so badly for Jack. For me. When Jack was little and I could not envision a happy and viable future for us, reading this account was basically painful.
This time when I read this passage, followed by the account of Jesus blessing the little children, one by one, I felt something different. It was more of a swelling–an appreciation for Jesus’s love for each person. He blessed the children one at a time. They were individuals, not merely a group. They were important to him and he made sure they knew it.
I did weep through this recent morning Book of Mormon study, but this time it wasn’t because of sorrow and envy. It was because I straight up knew that Jesus sees us, especially those of us who are suffering, powerless, vulnerable. He knows our hardship, and because he understands, he imbues us with power–his power–when we follow him.
God knows us because he’s the Father of our spirits. Jesus knows us because he experienced all human suffering, descending through that unthinkable pit so he can stand beside us, helping us to shoulder our burdens.
He’s so good. He’s so kind. I felt it as I read about his visit to the people of the New World.
He weeps with us, as he wept with the people in 3rd Nephi. He isn’t distant, removed, unfeeling. He is with us.
I love him for comforting me in the face of uncertainty and sadness.
I love him for giving me power to keep going, and confidence to keep trying.
I love him for knowing my Jacky, and doing the same for him.
Do you ever take a meditative step back from the busy parts of your life and wonder, “How did I get here?”
Because I am doing this as I look around at the evolution of life as I know it. My heart has been asking my brain, “How did my life evolve into this thing where my super vibrant not-old father died and my special-needs teen son lives 3 hours away in other people’s care? And, by the way, I have a sixteen-year-old who dates and drives, wha?”
I guess I am still processing what has transpired. I’m grappling with the remains of these events.
It’s not that I have a problem with change, generally speaking. Life evolves and there is often beauty in the alteration. But there is also a certain sadness in acceptance.
This is just to say, I’m adjusting to Life As It Is Now.
It’s a stormy day, I’m reading a downer of a John Green book, which apparently makes me weirdly reflective.