This Post is a Jack Update

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.

Tiny Letters: A Day in Retrospect

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.


Dear Jack,

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.


Dear Jeff,

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).


Dear Henry,

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.


Dear January,

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.

Buoyant by Association

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.

A Letter to the Six People Possibly Still Reading this Blog

Dear Reader,

You probably don’t check in here much anymore. And who can blame you. When the content isn’t refreshed multiple times per week, why bother?

I am posting to say that I know, I’m sorry, and that writing is hard in this season. It’s Grief, Round Two. I am able to (sort of) sleep. I am able to get up and shower and do laundry and do dishes and make breakfast and clean up kid clutter. Today I was able to update my syllabus as the semester starts next week. I am managing Jack’s transition from hospital to home to returning to school.

What I am not doing, dear reader, is living out loud. I’m living softly, weirdly, incompletely, one day at a time.

I do lots of pondering, remembering, musing, and feeling. I am feeling the hurt. I am forgetful and spacey, and making plenty of mistakes.

After my dad’s passing and up through the funeral, I was on a spiritual high. I honestly felt lifted up and really pretty buoyant. Since the funeral, though, the adrenaline has ebbed. The crush of friends and well-wishers has calmed. Regular life has returned. And I’ve been struck by the sense of enormous loss that follows me around.

Before I forget them, reader, I’m going to write down a few things that have happened in the last little while:

  1. I dreamed my dad was at Jeff’s parents’ house, in their kitchen. He was loading up a dinner plate with tri tip roast and flank steak. “Oh boy, how is this going to play out?” I wondered to myself, thinking of my dad’s inability to eat anything solid for the last month of his life. But in the dream he wasn’t sick, weak, or starving. He was healthy. I looked over where he stood by the sink and saw him chugging Sprite straight from a 2 liter bottle, which is bonkers because my dad cared nothing for Sprite. But it was a happy image which, my sister remarked, represents that my dad is “catching up.”
  2. I felt that my dad was close to us on Christmas Eve. Like, literally close by. I knew it. It didn’t seem odd, but comforting and amazing. It happened during our annual variety show, where the kids tell jokes and play songs on the piano. My nephew, Auguste, danced and did the signs to Mele Kalikimaka as we all sang along, which was the cutest thing I’ve ever seen. When he finished, we all cheered and I distinctly heard my dad’s voice calling out a whoop from behind me. I actually turned around and looked behind me, at which point I remembered and thought, “Oh yeah, he’s not here.” I figured my ears were playing tricks on me. My sister, Sarah, and her family brought my mom to my house on Christmas Day. My mom told me that after opening presents that morning, she and Sarah had watched the recording of Auguste’s variety show number. “I heard Dad’s voice on the video. It was when we were all cheering.” She started to weep. This experience taught me that his spirit still exists, that he isn’t far away, and that he still knows what we are doing and rejoices in his family. It isn’t easy to describe the beauty I felt from that single audible cheer. Some people may regard me as a weirdo for a) having this happen to me and b) talking about it. If it makes me weird, I’m comfortable with that. I heard my dad’s voice and he sounded so, so happy.
  3. The goodness of people astounds me. Friends from all the various corners of my life came to the viewing, the funeral, the cemetery, my mom’s house, my house, my sisters’ houses. They brought hugs, chocolate, dinners, bread, soup, homemade rolls, sweets, fruit, sympathy cards, and compassion. They sent flowers, gifts, and stories with expressions of love. I’m blown away at the love that exists in the world, both in happy times and in emotional and painful times. People are so good, especially my people. They have reached out to me and my family with what I feel is an extension of Jesus’s love.

This is the end of my letter, dear reader. I’m hopeful to be in a state where more writing can happen. *Dear HF, Please bless my brain cells*



Strength in Humility: My Remarks at My Father’s Funeral

Many mornings when I was little, I woke to a thundering sound outside my bedroom door. It was my dad, having a “walking race” with Sarah as he got ready to leave for work. They raced from the master bedroom at the end of the house, down the length of the hallway to the kitchen, and they did it while speed walking. That seemed to be the only rule—you had to walk. Other than that, it was kind of a free-for-all.

My dad had no qualms about using his considerable size advantage to hold Sarah back with one hand or even a leg. I can still see Sarah in her flannel nightgown and with her blonde bedhead, engaging happily in the same unwinnable race morning after morning. In hindsight, I don’t think it was about winning for either of them. It was about the fun of having a silly tradition that was unique to them. I recall that some mornings, my dad would already be eating breakfast in the kitchen when Sarah would remind him that they needed to have their walking race. And he’d go back to the end of the hall and speed-walk it again with her.

My dad’s life was big and full. As I’ve said goodbye to him (or rather, “see you later”) and reflected on who he is and what he means to me, a few things have stood out.  Those early morning walking races with his littlest daughter represent to me the way he relished life and simply enjoyed it. One of his favorite and most-frequently quoted scriptures was from Psalm 118, “This is the day which the Lord hath made; we will rejoice and be glad in it.”

Lynn was as quick to laugh at himself as he was to laugh at the antics of his grandkids. He excelled in academics and had an excellent memory and yet, he had a way of mixing up words in just the most memorable ways. Like the time we were playing Trivial Pursuit and the question on the card asked for the name of the church on which Michaelangelo painted his famous ceiling frescoe. Lynn yelled, “the Pristine Chapel” and the game fell apart because we were laughing too hard to keep going.

Or there was the time we were driving through Idaho to Yellowstone. As we passed various fast food billboards, he famously asked, “Now Arby’s, that’s not Burger King, is it?” The only reasonable response to this was, “No Dad, Arby’s is not Burger King.” Just a few weeks ago as he was loopy with morphine, my dad stuck out his hand to shake mine as I helped him into bed and said, “Clark W. Griswold. Nice to meet you.” He liked to laugh, he didn’t take himself too seriously, and he did rejoice in the gift of living, every day.

It was a sweet experience in recent weeks to record my dad talking about his life. There were the iconic stories I’ve heard over and over, and there were new ones which gave me a richer understanding of the amalgamation of my dad’s spiritual gifts and his challenges, as well as the gusto with which he faced them.

Lynn was a person of great ability and ambition. He worked hard at achieving his goals, and he succeeded. But I was struck with my dad’s humility as he reflected on the events of his life. He made it absolutely clear to me that everything he had accomplished was because God had blessed him beyond his own capacity. He told me a story about one of his patients that illustrates this.

Years ago, he was doing an endoscopy on a very ill woman with a severe stomach bleed. Patients are positioned on their left side during this procedure to prevent them from aspirating fluid or blood into their lungs. As the scope entered her stomach, he saw that the cavity was filled with blood and blood clots, and that he really couldn’t see much of anything because of this. Where was the origin of the bleeding? He didn’t know and wasn’t sure what to do to help her.

He told me that a voice said to him, “Roll her onto her back and then her right side.” He asked the nurses to help him turn the patient and they expressed concern, citing the risk of aspiration. Lynn said, “It will be all right. Let’s give it a try.”

As they moved the woman onto her right side, my dad said the blood also moved and he was now able to see a large ulcer on the stomach wall causing the bleeding. Before, it had been obscured when she was lying on her left side, per safety. But now he could see it. He was able to cauterize and clamp it, and she immediately began to recover and was discharged from the hospital the next day. After this happened, the woman’s family began praising my dad, calling him brilliant, a hero. All these many years later, he wept as he said, “I told them it wasn’t me. It was the Lord. I was merely an instrument in his hands.”

My dad was naturally gifted at many things, and when things didn’t come easily to him, he simply determined to go after them anyway. Because he was so smart and had many abilities, I could see that at first, it was a struggle for him to comprehend and accept the limitations of my special son, Jack, whose intellectual disabilities are severe. My dad always loved Jack, but in the early years he, like me, grappled with our collective inability to fix Jack’s deficits and help him progress. He expressed these frustrations, which I understood, because I also wanted nothing more than for Jack to be healed, like the blind man, the lepers, and the woman with an issue of blood, all of whom Jesus healed in the Gospels.

In the midst of this wrestle with disabilities and acceptance, my dad made great efforts to understand Jack’s condition, as well as our family’s needs as Jack’s caregivers. He learned about behavior therapy right along with us. He spent time with Jack, and he really did accept him for who he was, even when the behaviors were difficult. Jack is now thirteen and has not experienced a miraculous, New Testament-style healing. He was placed in a group home earlier this year in order to better meet his needs.

As I’ve watched my parents and my son bravely face the challenges of mortality, I’ve seen that healing comes in many forms. While all of us will face physical decline, we are essentially spiritual beings; our spirits have limitless capacity to continually grow.

Just a few months ago, I sat next to my dad at the cabin as we listened to these words from Donald L. Hallstrom in October’s General Conference, “Do we have the faith ‘not to be healed’ from our earthly afflictions so we might be healed eternally?” Elder Hallstrom went on to say this:

“A critical question to ponder is ‘Where do we place our faith?’ Is our faith focused on simply wanting to be relieved of pain and suffering, or is it firmly centered on God the Father and His holy plan and in Jesus the Christ and His Atonement? Faith in the Father and the Son allows us to understand and accept Their will as we prepare for eternity.”

And in a similar vein, Dieter F. Uchdorf taught this principle about healing that comes in various forms. He said, “We can heal spiritually. Even the deepest spiritual wounds—even those that may appear to be incurable—can be healed. My dear friends, the healing power of Jesus Christ is not absent in our day. The Savior’s healing touch can transform lives in our day just as it did in His. If we will but have faith, He can take our hands, fill our souls with heavenly light and healing, and speak to us the blessed words, ‘Rise, take up thy bed, and walk.’”

This concept of eternal healing in the face of incurable mortal wounds and diagnoses is the sure hope that carries me through my hardest days. Life is so much bigger than the span of time we’re allotted on earth.

A few years ago, my parents watched our boys in our home for several days while Jeff and I went on vacation. When our plane landed at our destination, I got a text from my dad saying that Jack’s school had called, saying he needed to be picked up early because he seemed sick. “Why? What are his symptoms?” I texted back. “What’s he doing now?” My dad replied, “He’s laughing and jumping on the tramp. Don’t worry, I’ve already written a note to the principal explaining that this is Jack’s normal and there is no cause for alarm in the future.” My dad got Jack. He understood him and was an advocate for him. I knew we were laughing together, several thousand miles apart.

During the years before autism therapies were covered by our health insurance, and when Jack was also on the years-long wait list for disability services, my dad offered and willingly helped us pay for these therapies, whose costs are prohibitive. When it came to Jack and the hardship that his limitations placed on our family, my dad gave and gave and gave.

He and my mom took our other children with them to Mink Creek when Jeff and I couldn’t bring Jack because his behaviors were too violent, and he relied on consistency in his daily routines. In the early years when we were unable to travel at all because of autism and developmental delay, my parents took our oldest son Henry with them to Yellowstone, to the beach, and on fishing and goose or pheasant hunting trips.  The last time my dad was at my house, it was on a Father’s Day, and he offered to stay and take care of Jack while I spoke in sacrament meeting. I told him it didn’t seem right that he do that on Father’s Day, but he told me it was his honor.

My dad gave a gift to my boys by including them in his life and adventures, by experiencing the beauties of nature with them, and by teaching them how to be good workers, friends, brothers, sons, and people. He gave a gift to Jack by recognizing the value of Jack’s spirit, in spite of his limited mortal body and mind. And he gave a gift to me by showing me that humbling oneself and accepting God’s will isn’t easy, but is the way to lasting peace and eternal happiness.

Jack’s disabilities and my parents’ ongoing health challenges have been a catalyst for helping both my dad and I to better understand humility. Through these trials, I have seen the power that comes from abandoning pride and choosing to be humble. My dad embodied this as he showed me what true acceptance looks like.

The point of humility isn’t about being meek for the purpose of being meek. The beauty of humility is that it allows us to turn to Jesus Christ and draw deeply from his bottomless well of strength. A humble heart gives us access to the Savior’s infinite peace and power.

This concept is described in my favorite scripture, Helaman 3:35, “Nevertheless they did fast and pray oft, and did wax stronger and stronger in their humility, and firmer and firmer in the faith of Christ, unto the filling their souls with joy and consolation, yea, even to the purifying and the sanctification of their hearts, which sanctification cometh because of their yielding their hearts unto God.”

Lynn did yield his heart to God. He accepted with complete trust that our Heavenly Father loves us, that our Savior strengthens and redeems us, and that eternal life with loved ones in our heavenly home awaits us at the completion of mortal life. As Lynn’s body weakened and declined over the last two months, I witnessed his spirit do that counterintuitive thing, which is to grow stronger in humility, as the scripture says.

Just before he began the morphine pump, which was the only relief from the unimaginable pain he experienced continually for so long, I told him, “You did it. You endured. You were so valiant.” He looked me in the eyes and said, “I didn’t do it alone. I couldn’t. It would have been unbearable. The Lord helped me through it.”

Lynn lived with the physical effects of myasthenia gravis for more than three decades. He had dual hip replacements, open chest surgery, and three different forms of cancer. He learned to not only heal and help others, but also to be a recipient of others’ care. When his body faced weakness, his spirit was humbled and receptive to the lessons of his Heavenly Father. He learned compassion. He learned patience. He resolved to be grateful for every day of life, and for the bounties which surround us, even in the most difficult trials. Especially in the most difficult trials.

The night before Lynn passed away, I had a vivid dream. I was standing on the hill near the ponds at Mink Creek and I saw smoke billowing around the hill opposite me, near the dry farm across the river. I thought the fields were on fire and I felt panic. I ran inside to warn everyone, and when we went back outside, I could see that it wasn’t a fire at all. Instead, it was a train, pulled by an old-fashioned steam engine, that was puffing smoke. As the train crossed the bridge, it turned and moved north beside the river. I could see my dad, riding on top of the engine. He did not turn to look back, but was completely focused on where he was going.

Now, instead of panic, all of us felt euphoric. There was Grandpa! On a train! Chugging beside the Mink Creek—his quintessential happy place! I woke, and felt that God had given me this dream as a gift. I got to see my dad riding atop the train, wholeheartedly focused on his journey onward. When his mortal life ended later that very day, I felt tremendous peace. I had seen him speeding homeward–that lovely railway image imprinted in my memory.

I will close with my dad’s other favorite scripture, the one he quoted to his grandchildren at every possible opportunity, from Proverbs 3: 5 & 6. “Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”

Lynn trusted in his Savior to bring him home. My whole being is filled with gratitude that Jesus Christ is our brother, our friend, our Redeemer. I feel such awe that the Savior of the world knows us in our imperfections, loves us for who we are and who we have the potential to be, and rushes to our aid in every grief and trial.  Because of Him, we will see Lynn again and rejoice in our reunion.

Good Tidings of Great Joy: A List

Here are a few pre-Christmas things that have happened today:

  1. I have worried and worried about Jack’s discharge date. They were talking about sending him home tomorrow, right before the Christmas weekend. This sounded very bad to me as a) he would be transitioning from hospital to home and transitions are not his forte, and b) he would be stuck with random holiday staff who don’t know or work well with him. This all sounded like a recipe for behavioral relapse, to me. Well, this morning the social worker from the hospital called to say that our insurance has approved Jack to stay through Christmas, for the very reasons which concerned me. Jack will be safe and well through the holiday. And after that, he will either stay in the unit (if he has a bad weekend, behavior-wise), or he will go back to his group home with proper staffing and a re-worked behavior plan. This is my Christmas miracle.
  2. This morning, the first official day of my boys’ school break, Truman’s kindergarten teacher knocked on our door, her three little children in tow. She brought Truman an art project he had missed and told me she was thinking of us during this difficult time. And if anyone knows, she does. Her father passed away during the second week of school this fall. She told me about a couple of dreams she has had about her dad, where he is happy and healthy, joking and loving. She talked about feeling peaceful. Her visit was really a beautiful gift to me. After they left, Truman asked, “Why did she come here?” “Because she cares about you,” I said. Truman yelped, “Why is my brain so in love with her?!” Sweet kindergarten teacher, check. Sweet six-year-old boy, check. Sweet Christmas memory, check.
  3. My little boys have discovered the joy of wrapping presents. They are obsessed. Truman, my most creative child, likes to free-form his gift wrap with no input from me. Charlie, in the spirit of autism, wants his presents to look perfect, so I taught him a few guiding principles and now he is an independent wrapper. This is highly rewarding to my boys. I told them if they put their pajamas on and brushed teeth, they could come back down and wrap a bit more before bedtime. To date, they have wrapped up all our Christmas books and put them under the tree. They were the same way with stuffing Christmas cards in envelopes. They shooed me away and insisted on doing it themselves. I am pleasantly surprised at the things my boys are learning to do, and through which they find great satisfaction. I am amazed and delighted watching them attend, focus, problem-solve, and carry out multiple steps of a task. To the non-autism family, wrapping and stuffing envelopes may not be exciting kid milestones. But to us, this is great news.

A Christmas List

It’s a week until Christmas and here is what is happening at Chez Goates:

a) I took Charlie to a ballet, his first ever. Of course we saw The Nutcracker and I was literally perched on the edge of my seat the entire time. There were so many years where things of beauty like taking in a matinee at Capitol Theatre were out of the question. And yet, I LOVE IT. SO SO MUCH. I love the symphony, the ballet, plays, Shakespeare, art shows, readings, book launches—all of it. I am drawn to the arts like Jeff is drawn to technology and Henry is drawn to athletics. I thrive on it. I yearn for it. Charlie was mesmerized during Act I. He got bored in Act II. But he sat through an entire performance, which is something I would never considered attempting in years past. He has grown so much. Also, I’m proud of myself because when I saw all the moms there with their little girls in dresses, I felt no stab of bitterness. The thought that ran through my mind was, “I’m here with my charming little son and we are both seriously quite jazzed about it. Carry on.”

b) Jack is still hospitalized for psychiatric treatment. He’s doing so great there that I still fantasize about recreating it in some other location, or better yet, finding a way for Jack to stay on indefinitely. (Hey guys, mind building Jack a little shanty in the unit and letting him stay for a long, long time? Puh-leeeeze?) He’s so good there. It’s a perfect environment. We’re not sure when he will be discharged. Meanwhile, medication management is progressing and they are working on a structured behavior plan.

(Jack, taking a cab from the neuropsychiatric hospital to the children’s hospital with his caregiver to be seen at the Dental clinic. I don’t why this cracks me up, but it does.)

c) Charlie and I saw The Last Jedi yesterday and he is a walking spoiler. I keep lecturing him on what we can say to people about the movie (“I loved it. It was so good”) and what we can’t say (“__________ dies”). If you haven’t seen it yet, steer clear of Charlie until you do.

d) I’m pining for snow. We don’t have any at my house, to date. Is it too much to ask that I want my town to look like a New England hamlet from a Currier and Ives lithograph? Would it kill the universe to make my neighborhood into a picture of holiday nostalgia? All I want for Christmas is snow.

e) My dad is still on the morphine pump. These last few weeks feel like we are floating, suspended. He is in a liminal place, sort of here and sort of not. Meanwhile, my mom bravely sallies forth 24/7, staying chipper and tending him gently. I feel there must be some particular refinement that comes from caring for an ill family member—whether the limitations are physical or mental. It can seem endless. For the period during which the trial endures, it IS endless. Emotional fatigue is real. I don’t know what the long-term spiritual lessons are with this type of challenge, but I’m convinced they exist and must be prodigious. Someday I will understand the why of caregiving and the fruits it produces.

f) I finished teaching fall semester, which turned out to be the toughest term I’ve ever taught, not because of my students but because of my life. It kind of felt like I was teaching while wearing one of those giant inflatable sumo wrestler suits, but instead of a sumo, mine was a giant grief suit. And it wasn’t filled with air, but weights, strapped to my limbs, adding bulk and making every movement three times harder. Dear students, I still love you, even though I just taught writing classes through a heavy and depleting period of my life. 

g) I don’t possess the mental or emotional strength to read books right now, but I am enjoying my favorite holiday movies. Every night. You know what makes a dark midwinter night tolerable? Sweatpants, socks, hoodies, blankets, peppermint tea, chocolate, and classic Christmas movies. I give you permission to indulge.


Hospice and Hospitalization

I’m having the sort of week where a) my dad is still on hospice, still getting weaker, still declining, and yet still cracking jokes (when he isn’t sleeping), and b) Jack was hospitalized in a neuropsychiatric hospital. Either one of these things is basically kind of overwhelming. Put them together and it’s like, “Buckle up, missy.”

I’ll be really frank. I’m living on carbs and prayers right now. My brain isn’t working terrifically well. By 7 pm every night, I feel like I would rather die than clean up the kitchen or start a load of laundry. The fatigue is real.

But, at a deep, cellular level I’m also strangely calm and comforted. There is no sense of awful panic. I’m not anxious about the future. I’m glad my dad is on morphine and isn’t in the constant pain that he was before, and I’m happy that Jack is getting the care that he needs to reboot his meds and extinguish (hopefully) his uncontrollable behaviors.

It feels a little like when Truman was a newborn in the hospital for a month. Typical Me would have been a hot mess over that situation. But I felt during that time as though God was holding me in the palms of his hands. I just felt peaceful.

Most people (including Me, Before the Last Thirteen Years with Jacky) would view psychiatric care for their young teen as a worst case scenario. A disaster. A failure. But after the year we’ve had, it doesn’t seem so crazy. It’s practically a natural progression in the order of things with a nonverbal son with autism and severe developmental disabilities. It’s like, “Oh hey, this is just the kind of thing we do. It’s all fine.”

Several people have asked me if Jack’s hospitalization is permanent, so allow me to clarify. His stay in the unit is temporary. It’s a controlled, safe environment which allows his team to made medication changes and implement a structured behavior plan. Based on how it has gone the first two days, I kind of wish we could replicate this perfect habitat for Jack elsewhere: people who get him, people who aren’t afraid of him, people who know exactly how to change his behavior and manage his needs, no outside world distractions, all the meds right there with refills aplenty … It’s basically perfect and I want a mini version of it for Jack to live in every day.

I spent 30 minutes on a conference call with Jack’s school this afternoon wherein they detailed the violence and destruction, as well as the accommodations they have tried with Jack. I spent 20 minutes on the phone with our support coordinator discussing the conference call. I drove an hour to the hospital to deliver slippers and Reese’s cups to Jacky. And I went to Henry’s basketball game.

I can’t see Jack, not because they are forbidding me, but because if he saw me, Jack would immediately try to leave the hospital and head for the parking lot. It’s why I have never been able to visit his classroom or attend one of his class parties. He sees me and thinks, “Okeydoke, we’re done here.” We don’t want to set off more behaviors by appearing and then leaving without him.

So I dropped off his shoes and treats and then left. I talked with the hospital like seven times today. They are amazing at everything, but especially at keeping in touch with me.

And then I came home and ate carbs.