My June Segullah offering is up. It’s about being human.
Allow me to update you on Jack and his felony assault charges.
After meeting with the probation officer and communicating with the public defender, we provided both people with Jack’s treatment plan as outlined by his caregivers, with a psychological evaluation done by the state a few years ago, and with a letter from his psychiatrist. The probation officer and the attorney sent these documents, which thoroughly detail Jack’s cognitive state, to the prosecutor and the judge.
The prosecutor then filed a motion to dismiss the charges “in the interest of justice,” which the judge, thankfully, did. The four people who worked on Jack’s case demonstrated a reasonable and refreshing sense of common sense, and they worked together as a team to make this happen. So nobody has to go to court and, based on this experience, I have renewed faith in the judiciary.
We visited Jack earlier this week where we saw his new house (it’s actually brand new and so lovely), his beautiful backyard which abuts a golf course, and a couple of his caregivers. Jack was exceedingly glad to dig into the bag of treats and backyard toys we brought him. He did not want to pose for pictures (ugh, teens). We learned that Jack eats things like oranges as a snack these days (whoa, yay!) and enjoys cat-calling the golfers who tee off just over the low fence from his grassy perch. This image is my favorite.
Jeff and I once again felt a deep-seated feeling of peace and gratitude for the gifts that God has given Jack. He is in such a perfect place and is making steady progress. Since moving to the new house a month ago, his destructive acts and toileting problems have virtually gone away. This is big.
Jack clearly loves one caregiver, his house manager Josh, a great deal. Josh adores Jack and says he makes his job so much fun. According to Josh, the female staffers in the company like to stop by and talk about how stinking cute Jack is. He has a fan club. It is true, though, that Jack is adorable. One of his summer program directors from years past put it this way, “Jack is a model, and he knows it.”
It wasn’t hard to leave Jack this time. He was happy. He was calm. He is in good hands and fulfilling his life’s mission, and I am utterly grateful.
Is it possible to truly be in control of one’s life?
This is the fundamental question asked by two books–memoirs–I’ve recently inhaled.
Of course, the short answer (according to me) is that it’s an illusion to think that life is controllable. But it is easy, when things are going swimmingly, to get caught up in the idea that we are responsible for our successes.
Kate Bowler’s book Everything Happens For a Reason: And Other Lies I’ve Loved details her diagnosis with Stage IV colon cancer at age 35, with a husband and a baby son. She’s an assistant professor at Duke Divinity School and has recently published her first book, a history of the concept of the prosperity gospel, or the notion that righteousness breeds wealth, health, and all manner of wordly protection from suffering.
It’s a concept she herself unwittingly subscribed to before becoming ill. She worked hard, made careful choices, and was achieving exactly what she wanted in life. As her health unravelled, she faced the reality that she was the same person, saying the same prayers, yet many began to view her as having brought the disease on herself. Or, at the very least, if she wasn’t being healed, then she had clearly failed at calling down God’s favor upon herself–a personification of faithlessness.
I read this book in a single day. I found Bowler’s writing style mesmerizing, and the trajectory of her life the actual polar opposite of failure. But I was most intrigued by this weird prosperity gospel idea that when we struggle in life, it is proof of God’s disdain for us, or his abandonment of us, all based on our inadequacy as persons of faith.
That was my life for many of Jack’s early years, guys. And Bowler wrote the literal book on it. There was a time when I thought God was utterly disappointed in me, and that’s why I was struggling through my parenting hardships without reprieve.
My own non-ironic spiritual journey richly revealed to me that struggling isn’t a sign of weakness. It’s simply a sign that we are alive in mortality. Not all hardships are brought on by poor choices or sin. Much of what we suffer through is a result of living in a fallen world. It’s just part of the deal. And we grow from it. If you believe Hebrews where it says, “For whom the Lord loveth he chasteneth,” then the prosperity gospel notion falls flat. Reading this book, I again felt validated as a woman whose life was bombed by raising a special needs child with the most severe behaviors. Challenges do not equal disappointing/faithless.
Kate Bowler is now living in that liminal state of having two months remaining of life, unless each periodic scan tells her otherwise. I wish her health and longevity and peace in the unknowing. Life is beautiful and hard and fragile. Who knows if everything happens for a reason? True faith doesn’t demand results from God, yet it believes unequivocally in the love of God. It accepts his will and seeks his help in learning from the sorrow and slogging through it.
This leads to the other mind-blowing memoir I’ve recently read: The Burning Point by Tracy McKay. The story begins when she is a thirty-something mother of three young children and her opioid addict husband has relapsed (again) and is passed out upstairs in their bedroom. The spirit tells Tracey, with an audible voice, that she can go now, meaning it’s time to leave the marriage and protect her children.
What follows is a detailed account of the next couple of years, wherein McKay is a single mother of a couple of typically developing children, as well as a son with autism; a nontraditional student returning to university; and the only functioning adult remaining in her nuclear family.
Several things stick out to me after reading and pondering this story:
- McKay loves her husband. She sees him as a person, even when his choices are destroying her life. She speaks of him generously. This is so very humanizing and beautiful.
- Her story features her brothers and sisters in the gospel coming to the rescue, over and over, and doing it willingly. I found it incredibly moving that McKay dedicated the book to the women of her two Relief Society congregations who saw her through her divorce and new fledgling life. There is so much beauty in charity. It echoes Jesus Christ and his regard for each of us.
- Women are amazingly resilient. The end.
I’m fascinated by all stories, everywhere, but especially of stories of people facing the worst types of heartache and hardship. Will they emerge victorious and unscathed? The prosperity gospel says they must, in order to be valued and idolized. But I don’t care about that.
None of us emerge unscathed from life, yet because of Jesus, all of us already are victorious.
This week, Jeff and I met with a probation officer in the county juvenile court system. This is in response to a court summons and a list of charges, including felony assault, brought against Jack by the special-needs school in the small town where he lived last year.
Why did a school whose purpose is to educate students with disabilities, like Jack, file such charges? It’s complicated, but there are a few reasons: a) staff were getting hurt on a daily basis at school from Jack’s aggression, b) it was scary, c) the school district told them to contact police and file these charges as a means of getting Jack removed from the school, and d) they believed these charges would force the state to place Jack at the state developmental center, a full-time care facility, where the school felt he needed to be. Their intentions weren’t insidious. But all of this is beside the point, now that we have moved Jack to a new town and a new (perfect!) placement with a different company, and the small fact that the state development center doesn’t take minors, and only considers clients who have demonstrably failed in virtually all other settings. So, the school thought they were finding the best solution. But, it turns out, God had a different path in mind for Jacky at this point in time.
Anyway, back to the meeting with the probation officer. He went through the charges, one by one, and read the victim impact statements, which detailed what we already knew on a general level: Jack was violent at school and constantly hurt his teachers and aides. I know what it feels like to be beaten up by Jack, but it was an even more painful experience to hear those who taught and cared about Jack talking about their injuries. The old feelings of helplessness and failure crept in. This was my son who hurt people, and I couldn’t control him.
Behold, my family: we are, once again, the outliers. Jack was in the most specialized school available, with a dedicated team of professionals working to help him learn, and it wasn’t working.
Jeff and I left the courthouse, where the birds were chirping, the morning sun was shining, and my heart was a fist of despair.
As we drove to get breakfast (followed by a mint brownie at 10 am, yes I did that), Jeff said something that stopped my grief-cycle thoughts and made me consider things from another perspective.
“In no way do I mean to minimize what the Savior did,” he said. “But in some ways, I feel Jack is emulating the Savior’s path, and we as his parents have to struggle to watch and accept it.”
One might say that this comparison is flawed, because Jesus wasn’t hitting and biting people. But Jeff wasn’t saying that Jack is the same as Jesus–just that he has a specific life mission and it’s difficult and out of our hands.
“Jesus left at a young age, his parents couldn’t find him, and it emerged that he was teaching the religious leaders of the time. He was about his father’s business. He was fulfilling his purpose.”
He continued, “Jack left us at a young age, yet is unaccountable for his actions, which basically means that everything he does has been predetermined. He is simply fulfilling his purpose, perhaps by teaching the people who know him something that God wants them to learn.”
As he spoke, a calm descended on me. My wizened heart unclenched, and I breathed more deeply.
Jeff said, “I think we may have just a small inkling of understanding about what Mary and Joseph felt as Jesus’s parents. Jack is a person, and not the Savior, but he does have a big, unusual mission, and we can only view it from a distance.”
I felt a pure thread of truth in this reasoning, helping me plait the threads of the unknowable with my current, evolving understanding of Jack’s eternal nature.
Which leads me to three tiny stories:
First, my sister, Lisa, had a dream a few weeks ago about Jack. We were all at the cabin, organizing and preparing to go somewhere. Lisa said Jack was helping. He was organizing and preparing, too.
Second, last night I dreamed that I was at an office in Jack’s town, and several of his team members walked in for a meeting. Jack was with them and was carrying an eight or nine month old baby, the child of one of his caregivers, apparently, in a car seat hooked over his elbow. My heart skipped a beat as I plotted how to safely get the baby in her bucket away from Jack before he dropped her on the tile floor. But his caregivers trusted Jack and were fine with him holding the baby seat. They weren’t worried. As the dream concluded, Jack kept the car seat handle firmly in the crook of his arm. He was calm and self-possessed. He was gentle.
Third, this final vignette is something I can only allude to at this moment in time. Those who read about my life know that I write about just about anything, not because I’m vain, but because I literally can’t rest or sleep, many times, until I share it. I 100% assure you that NOT posting everything about my life on the internet sounds preferable to putting it all out there and opening myself up to judgment in any form. But I write what God tells me to write. The end.
My friend Allysha described an analogy she heard once, and it resonated: There are certain people we allow to come to gate of our emotional house, so to speak. We meet them there, and we leave them there. There are others we will visit at the door, but then we close the door and draw the boundary. Some people we invite into the entry of our home, and that’s as far as it goes. Still others, are welcome in the kitchen, where they may pull up a chair and stay awhile. Even fewer are the people we would allow into our figurative bedroom. Readers of this blog may feel that I’ve invited everyone into the inner sanctum of my home and my life. To a degree, this may be true. But even though it may seem that I reveal everything there is to know about me, I honestly do not share all of it.
While I am super open and Brene Brown should definitely send me an award for vulnerability, there are nevertheless things that remain in the hidden parts of my emotional house. This last story is one of those things. I’m not going to describe it, other than to say I had a profound spiritual experience in recent days which taught me, in a concrete way, that Jack’s spirit is vast and wise.
Vast, you guys.
I’ve always known he is valiant. Now I know that he is light years ahead of me, in spiritual growth. He is not suffering, but has fully accepted his life and his purpose.
These are revelations I do not take lightly.
But they also put things like court summons and felony assault charges into perspective. These things are bumps. But they are immaterial.
What’s important is that Jack is okay. He’s more than okay. He is way beyond me.
I just need to be smart enough to learn what he is here to teach me.
My youngest son graduated from kindergarten today. I have a few observations:
- I thought it wouldn’t affect me, because
- evidently I’m a pariah among women in that my children getting bigger doesn’t make me sad.
- It makes me excited.
- Turns out, I was affected emotionally at the ceremony because
- kindergarteners are so freaking cute (so so so flipping adorable I love them), also…
- a photo of my dad hugging Truman was in the slideshow with the caption “G is for Grandpa,” at which point I was awash in color and feeling and the ironic swelling of loss,
- and “Somewhere Over the Rainbow” by Israel Kamakawiwo’ole was the soundtrack. I defy you to not cry under these circumstances.
- Then we filed like cattle from the classroom into the gym and watched all the kindergarten classes sing songs and tell jokes (Question: What does a cloud wear? Answer: thunderpants; Question: What flies around the kindergarten classroom at night? Answer: an alpha-bat).
- I’m also a parenting anomaly in that I don’t care about filming poor-quality videos of my kid singing with dozens of other kids. I just prefer to watch it and be present, and that’s it, which makes me a weirdo.
- Don’t ask me.
- Clarification: the mom next to me was basically the only other parent not filming either, which is (I suspect) because…
- we looked roughly the same age (i.e. seasoned parents, ahem). I’m going to guess that this woman was observing her youngest child’s kindergarten swan song and, like me, knew that the memory of watching it was pretty great, and also that she would never ever watch that video again so what’s the point, Karen?
- The other thing that happened as I watched Truman sing was this: I saw him in my mind as a premature infant, who six and a half years ago, could not breathe on his own and was transported after delivery to the big hospital with the giant NICU and the right type of ventilator, where he spent the first month of his life.
- In those days, I worried so much about how his delivery at 34 weeks would affect his development.
- Today, I looked at his thick red hair, his beanpole legs, his eager face with a pinch of freckles across the nose, and gratitude filled me up, for who he is and how far he has come.
- And, they were singing along to Jack Johnson’s “Upside Down,” which reminds me of when all my boys were little, hence MORE WEEPING.
- In fact, I cried quite a bit for someone who was not at all sad to be attending the last kindergarten graduation of her parenting career, although…
- I’ll probably be back as a grandparent, which sounds completely fluffy and delightful.
- Did you know that you can have a spiritual experience at the elementary school on the last week of school?
- Because now, I do.
The last year, an intermission, passed.
My son lives in a home far away–the right place, the right care.
Peace sits on us both like a skin.
I am no longer mired in my grief-summer, nor my loss-winter.
This is the next act.
What will I do with it?
It is a season for driving with my mother.
For being a bulwark to a friend with a burden.
For writing, and for thinking about writing.
For filling in the ancestor gaps in my family tree.
Losing oneself in unfamiliar work is unnerving—
uncomfortable, in that it bends and folds,
ripping and rebuilding by lengthening,
The new act demands openness;
eyes–an outward gaze,
feet, walking through the debris,
arms, strong and tired with carrying,
mind, wanting to learn,
heart, pummeled with compassion.
This act doesn’t come naturally to me.
I can drive, do research, play with toddlers, cobble at words, look around,
God will tell me the why and the how.
I can learn the Selfless Act
I’m not reliably present here on this blog, which is simply the way it is right now.
My life has changed a great deal in the last year. While I once wrote multiple times a week about the rigors of raising Jack, the goings-on in my world are slower-paced now. Subtler. Stories and the subsequent lessons revealed by those stories aren’t whooshing past me, waiting to be snatched up and expounded on.
Reader, I’m no longer in perpetual crisis mode. This is good, because one can’t sustain crisis living indefinitely. It’s different in that I live a pretty regular life now. Not that being regular is bad. It’s just quieter and less apt to throw handfuls of insights wrought by suffering into one’s daily experience.
It’s funny that I used to long to be a “normal” family. We are much more typical now, though because of Jack, we will always be a little bit special, I guess. And I’m at a crossroads where I’m figuring out what to do with myself. I’m not teaching this summer, but I have a few plans in the works for occupying my mind and my time, in addition to raising ye olde children.
Meanwhile, dear Reader:
Jack is doing really well in his new home. He got a new hose and a sprayer, and is living his best life watering the backyard. He got a haircut this week and looks grown-up and handsome. He continues to have behaviors relating to food, which I suspect may never change. Or at least not until he’s past his teen years. But his caregivers are adept at handling him. The environment is perfect, and the staff are exactly what Jack needs.
And finally, I gave up soda ten days ago.
Your prayers, dear Reader, are appreciated in this difficult time.
It wasn’t something I wanted to do (because I freaking LOVE soda), but was something I was unequivocally inspired to do. Aaaand my back pain has drastically decreased. It’s not entirely gone, but almost.
The whole process of restoring my back to health has been an exercise in listening. And humility.
I’ve listened to the physical therapist and followed his recommendations perfectly, because I am nothing if not an excellent student.
I listened to the Holy Spirit prompting me to address the menstrual cycle component.
I listened to the prompting to give up my beloved, my precious, my sweet, sweet nectar–soda.
By following the bits of inspiration available to me, I’ve received, a piece at a time, answers to my pain question.
I still need to exercise and stretch my back in perpetuity. I may always have an undercurrent of tension and discomfort on the lower right side. But I feel that the pain isn’t controlling me anymore. I have enough strength and the right tools to address and manage it.
It’s really something how being quiet yields answers. My experience has shown me that inspiration requires a conscientious openness: to listening and receiving and following and doing.
Reader, if this post has a point, I suppose it is that so many things are possible, when one decides to abandon hubris and instead seek a divine presence–a divine will–about something specific in one’s life.
And that’s my smattering of thoughts for a Wednesday afternoon.
Wherein I review books I’ve read:
Turtles All the Way Down by John Green.
Yes, I gave Green another go after the depress-fest of Looking for Alaska, and I’m glad I did. This book is so good–more like The Fault in Our Stars, (imho) which I loved. It’s about Aza Holmes, a teen living with profound anxiety. Maybe it’s because so many of my students cope with anxiety, maybe it’s because my children have it, maybe it’s because I moderately have it, or maybe it’s because it’s the current plague of humanity (who knows!)–this book gives timely and profound insights into the effects of spiraling thoughts and physical sickness induced by anxiety. While this diagnosis is a huge a big part of who Aza is, it isn’t the only part. Green is so good at exploring teen relationships, while recognizing that just because one isn’t yet an adult doesn’t mean that life is still uncomplicated and carefree.
The Essex Serpent by Sarah Perry.
Sarah Perry wrote this contemporary novel in the voice and tone of Victorian writers like Charles Dickens and Sir Arthur Conan Doyle, and it’s surprising how effectively she does it. To me, it read like a Victorian novel. It did contain some thematic elements which were decidedly modern (references to gay and lesbian relationships, for instance). It’s about Cora Seabourne, a recent young widow, adrift and somewhat exultant as her marriage was abusive. She retreats from London, with her son, Francis, and companion, Martha, to the Essex countryside, where she hikes and explores, wishing to solve for herself the mystery of the fabled Essex serpent, rumored to emerge, winged and scaled, from the sea to snatch unsuspecting humans and livestock. I liked the depth of exploration of the relationships in this novel. The actual serpent, as well as the way the character’s lives unfold, isn’t what I expected. It was real, and it made me reflect on what it means to love.
Faith Fox by Jane Gardam.
I’m currently reading this book, about a baby girl whose mother, Holly Fox, dies while giving birth. It is set in early 1990’s Yorkshire and Surrey, where the unexpected death of this young, vibrant woman sends her family into a kind of unhinged grief fugue. The first third of the novel explores Holly, her husband Andrew, and her mother Thomasina. Andrew’s brother and parents also figure prominently in the story. Everyone’s character, in fact, is weighted with equal importance, as each person comprises the webbing of the figurative safety-net which catches the motherless infant, Faith. The cast of characters define her background and create the unorthodox backdrop against which she will grow up. Gardam is a deft writer of people and their motivations as she weaves the lives of a great many people together with BIG dose of quirkiness.
The Message by Lance Richardson and his family.
I’m obviously rather into this genre at the moment. This author lived in Idaho and endured years of massive health challenges before breaking his leg one Christmas Day and, while hospitalized, contracting pneumonia and MRSA. He was incredibly sick and in a coma for weeks; his caregivers did not expect him to live. During this time while his body was unresponsive, he experienced a journey into the Spirit World, or Paradise. He describes seeing his loved ones who died before him. He saw people passing through an opaque veil where their family members waited for them, as well as a great many other…lessons, I guess? He learns about the purpose of life and the way to achieve happiness, essentially. He and his wife wrote the book and have a folksy approach to telling their unusual story. At times, it read like a extended LDS testimony meeting, but it never struck me as being insincere. It was quite honest and forthright. I found it quite comforting in its specificity of what life looks like after mortality.
I Know My Name by C.J. Cooke
Carolyn Jess-Cooke and I have been online friends for several years. She lives in England and teaches creative writing in Glasgow. This is her first book I have read and while this isn’t a genre I typically seek out, I was completely intrigued. It’s a novel about a woman who has washed up on an almost deserted Greek island, with no memory of her life or even her name. Meanwhile, in London, a young mother has gone missing and her husband and the police attempt to piece together her whereabouts. The answers which materialize to these dual conundrums are not at all predictable. In fact, there is a brilliant twist in this story, which oozes moody suspense. I think I need more books like this in my life.
The Unscripted Life of Lizzy Dillinger by Marianne Hansen
Chick Lit gets a bad rap, which is unfortunate and sexist if you ask me. I don’t read it all the time, but when I do on occasion, I generally really like it. This was the case with Lizzy Dillinger, written by Hansen, who I met at a writing conference several years ago. I was lucky enough to read and respond to a draft of this novel, which is characteristic of Hansen’s distinctive voice. She is FUNNY. And engaging and creative and not at all boring or trope-y. It’s a novel about a thirty-something mother of two, whose autobiographical novel is being turned into a movie, which is set in Mexico, but which is being filmed in Arizona. It’s a story about reflecting on one’s life trajectory, and the “what if’s” we sometimes ask ourselves as we grow up and live with our choices. It’s a fun read, a beach read, a summer-apropos read–for women, and by women. Funny women. Amen.
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.