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.


Oh Hey There Neglected Blog

This neglected blog has taken the brunt of my inattention over the last month. I don’t have much brain power these days due to grief and the way a terminally ill family member reorients and refocuses one’s attention on only the most vital things.

I am not kidding when I say I struggle to link words together into sentences. I do have fleeting writing ideas, but it’s usually when I am driving, and they’ve evaporated by the time I have a second to write them down.

It may be a short list, and it may be somewhat incoherent, but here are a few things I’ve realized through the process of helping my parents, alongside my sisters, recently:

  1. Life is short. Except for the periods when it’s suuuuuper long (this happens in the hard parts, imho). It wasn’t that long ago that I gave birth to my first squalling ginger baby. And yet it’s been sixteen years since that time. Both he and I have changed a great deal. And in those intervening years, my parents went from healthy and vigorous empty-nesters to involved grandparents to seniors coping with a wild number of health issues. This leads me to my next point, which is that…
  2. It’s easy to get caught up in the mindset that everything will always be the way it is right now. Maybe it’s human nature. Maybe it’s just me. But I have done this during every phase of my life, forgetting each time that the tableau I’m living in right now is fleeting. It just is. It makes me want to capture the beauty of the now. It also makes me want to turn with my whole self to the promise of eternal things. I’m not kidding. When you begin to see how nothing lasts except for our spirits, God becomes your best friend.
  3. Change is a true constant of life on earth. Welcome to the concept of entropy. This year has featured Jack leaving our home for residential care, me turning 40, my whole extended family taking a once-in-a-lifetime trip to Hawaii, our 20th wedding anniversary, a breast cancer scare, my eldest child getting his driver’s license (and the independence it entails), and my dad’s robust life drawing to a close. It’s been a lot, of both brutal and just plain amazing. Through all of it, I feel unjustly peaceful and comforted. I’m so variable and inconsistent and irritable. I don’t deserve it, and yet I’m on the receiving end of a divine support system. I attribute this 100% to Jesus taking care of me in my afflictions, and also in my joys. I have been and I still am leaning on his strength, and he continues to send me both help and bounty.
  4. There are seasons of sadness and seasons of happiness, and sometimes the seasons overlap.
  5. Christmastime will never not be nostalgic, magical, and a little bit sad for me. The people I love, the people I miss, the person I used to be and the one I am now—we’re all wrapped up together in this bittersweet, tender, and beautiful season. This is when the lights on the Christmas tree get blurry because my eyes are weepy.


I’ve been thinking about the brevity of life, and also the endlessness of it, and about how which perspective one has is mostly based on how things in one’s life are playing out.

I don’t know much, but I do know this: when life is grand, it clips along briskly, like a boat with full sails.

When life is raw and strenuous, each day is an eon, an age, a century. In the dark. And it’s January.

The current condition of my life has shifted from the days dragging along even as they dragged me underwater, to a new phase of living, where each day isn’t an exercise in misery. The days twirl by. There is routine, of course; we have patterns. And yet there is room for spontaneity and exploration. When you aren’t merely surviving, life becomes something with possibilities.

That is the difference between my impossible life before, and my current life.

And yet, I’m grappling with life’s brevity in a different way. An image written about by the (literally old school) Venerable Bede keeps coming to mind. It compares the passage of time in this life to a sparrow’s flight through a mead hall in winter, where people are sitting beside a fire, eating together.

I used to think about this image with the sense that life is short and loud, drafty and chaotic. But it goes beyond that. St. Bede’s description of the sparrow’s flight didn’t limit it to it’s quick journey through the hall. The sparrow comes from somewhere, and upon leaving the hall, goes somewhere. The snippet of time in the tableau of the hall is all we currently see, but it isn’t all there is.

Bede meant to address the unknowns of life before life, and of life after it.

My own faith actually doesn’t treat the spaces before and after mortality as relative unknowns. While death is still “the undiscovered country from whose bourn no traveler returns” (thanks Hamlet), scripture gives me a pretty good idea about the realities of life outside of life of earth.

From Mosiah, I’ve learned “If Christ had not risen from the dead, or have broken the bands of death that the grave should have no victory, and that death should have no sting, there could have been no resurrection. But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ.”

The Holy Spirit has informed me, as it did at Grandpa Snow’s funeral, when our cousin Serena sang “Be Still My Soul,” and rapid fire spiritual impulses swept over and through me.

I didn’t then believe that the Lord is on my side and that he guides the future as he has the past. I knew it. It was reality in the truest, deepest sense.

Something similar happened at my aunt Colleen’s funeral, again when music was the avenue for God to speak to me. A quartet of women sang a sweet, old-fashioned song about the passage to heaven. I can’t remember the name, but I can’t forget the overwhelming pulses of love/light plucking my heart like a guitar string, making my spirit sing. Life on earth and life in heaven were without separation.

Three days before Jack left our home for his new one, I emotionally imploded. I told Jeff I didn’t think I could do it. He held me as I wept, and at that moment I felt that Colleen was there with me, along with my Grandma Lila, Grandma Goates, and Jeff’s stepmom, Beverly.

I knew they were there. I sensed they were there to bring me comfort, specifically them, because each experienced great loss and grief during her lifetime. They were simply there, and being there for someone in distress is really the only thing TO do.

God has instructed me on a personal level, teaching me that death isn’t the end, just as birth wasn’t our beginning.

Both are portals from life with our Heavenly Parents, which makes death more of a graduation.

What’s My Brain Doing Today?

I’ve been vacillating between never caring to write anything ever again, and having vague writing ideas that struggle to surface from the ether of my subconscious.

Back when my mind was a tightly wound coil holding onto survival, I was counter-intuitively more observant, more aware. And I seemed to stay alive BY writing. Now my brain seems slack, unable to hold onto anything for any period of time. Is this grief?

It’s been just over five months since we placed Jack. Sometimes I feel fine, like we are adjusting. Some days I don’t feel openly sad, but fatigue and depression permeate everything.

Every time I visit Jack, I see that everything is different. I’m not in control anymore. I don’t see his day to day routine. He grows, his face changes, his body changes, our relationship changes.

I’m starting to see that Jack’s new life will continue to play out with distinction from mine. I don’t have any great insights about this. It hurts. At the same time, it feels as though it is working as it should. I can’t explain it.

I’m at the tail end of a milestone trip with my eldest and third sons—the sort of thing that never could have happened pre-placement. We are visiting my sister Sarah in San Francisco, the city that wins the charm award. I love it here. My boys are enamored with it. I am enamored watching their excitement.

As their childhood slips by, these experiences are like fence posts. They mark the time, give us memories, become a reference point in the landslide of changing family life.

Photos may be forthcoming. If not, there’s always Instagram (aka, the lazy woman’s blog. Kidding, I just prefer Instagram because it’s easy and doesn’t expect a lot from me).

Moving On…

The breast care center called this morning. My biopsy was negative.

Huzzah and a huge sigh of relief.

Honestly, over the last two weeks, I have examined my own mortality and plumbed the depths of my soul. I feel that this whole thing may have been a heavenly-imposed exercise in acceptance and trust.

I was prepared to receive different results. I’ve spent the recent days questioning my life and my spiritual readiness. Am I actually ready to accept all things that God allows to unfold in my life?

To be frank, I agonized.

But just yesterday as I meditated about this experience, I said to myself, “I know God loves us and things will work out in the end. Whatever happens, I trust Him. It will ultimately be okay, even more than okay.” And I was peaceful.

Then I spent roughly 10,000 hours on the phone with Jack’s doctor, support coordinator, principal, and residential care director because Jack is doing the same aggressive/destructive things at his new school that he did at his old one. So after talking sensory integration diets, med changes, crisis intervention plans, communication strategies, and even a different door for Jack to enter and leave the school (so he won’t knock little preschoolers down in the halls), we have a better course of action to follow that will keep everyone safe and allow Jack to progress beyond the negative behaviors that are his stumbling block to academic growth.

The last few weeks have featured me walking around blindly, holding onto hope that God would see us through the darkness.

Today, light is shining again on me. I am flooded with thanksgiving that Jack has such a marvelous and dedicated team working on his behalf. I am thankful for another day of life, of health, of drawing breath. I’m dazzled by the slanty golden sunlight of a mid-October afternoon.

Once again, Jesus showed up. He lifted the load that was crushing me.

This will never stop being remarkable to me.

That Sucked

October 7, 2017

I had a breast biopsy this week.

I’m going to be frank about this nightmare-before-Halloween experience. Feel free to check out now if you’d just rather not. I get it.

I tried hard to be funny while writing it, guys. But it didn’t really work, because TRAUMA.

The biopsy took place on a state-of-the-art, brand-new piece of equipment (I know this because they kept telling me). It was installed only days before my procedure, meaning no one really knew how to use said equipment.

What they told me would take ten minutes took sixty.

For sixty minutes, I lay face down on a table that was raised high in the air, my chest pressed into a literal hole in the table. My legs, bum, head, and arms splayed unattractively akimbo because the table was subtly bowl-shaped, making my pose like that of a spider squashed in the part of the bathtub where the sides meet the bottom.

Does anyone know how I can tweet out my thoughts on this design and tag the engineering team who thought it was a good idea?

Because no one knew how to work the new software and machinery, a random stranger who worked for the medical equipment company spent an hour in the space below the table coaching the doctor and techs in the uses of the stereotactic biopsy table and needle FOR, I repeat, ONE HOUR while my delicate parts were “compressed” (i.e. smashed), a needle stabbed me, and the techs complained that I was moving too much. In my defense, you really can’t move when you are being “compressed” in this manner.

“Are you uncomfortable?” they would ask me, with an air of shocked disbelief, as if I were behaving like a petulant preschooler.

“Yes, I’m uncomfortable!” I retorted. This procedure and the position into which I was locked FOR AN HOUR were the very definition of uncomfortable.

The room was quiet with tension—my hatred of the table and the needle and the stupid questions, and their unspoken sentiment that I was being unnecessarily grumpy.

When they raised the table, it brought me eye-level with the framed hospital “art” hanging on the wall. It looked like a computer was commissioned to copy Monet—fuzzy impressionistic poppies in a fuzzy field overlooking a fuzzy beige view. It was the art equivalent of muzak.

I could see myself in the reflection of the painting’s glass. I looked bizarre, my bum, swathed in a too-large front-closing hospital robe, sticking in the air because of that “ergonomic” table; my Nikes dangling slightly above me (remember, bowl-shaped table?); my tenderest parts clenched in the flat fist of the machine’s paddles below the table.

I know the breast care center exists for the benefit of women, but this experience felt like a bunch of people without breasts got together and brainstormed ideas for “how to dehumanize female people while also hurting their most sensitive parts.”

There are women out there who have undergone double mastectomies and reconstructive surgery. And chemotherapy and radiation. To these women, I say, “I am weak. I bow down to you. The biopsy alone shook me.”

They took a couple of traditional mammograms after I disembarked the torture table. Then I sat in a big chair and swooned a bit as I watched a tech taping my wound together with steri-strips. It was a big hole. Big enough to insert a titanium hat-shaped marker into my breast that will remain there. (“I know, let’s make the metal marker in a HAT shape, because then it will have a pokey part that sticks out and isn’t smooth! Genius!”)

Jeff drove me directly to Kneader’s, where I ate carbs, including a perfect mint brownie.

The results should materialize in a few days. Meanwhile, I’m eating chocolate. And I have temporarily stopped reading my book (World Without End by Ken Follett) because my favorite female character is being horribly mistreated by evil monks and I want all women everywhere (including pretend ones) to be treated with dignity and respect, with no threats whatsoever against their lives or their boobs.


Faith and Trust are Symbiotic

October 2, 2017

Last night, I picked up the boys from behavior therapy and we met Jeff and Henry for dinner.

When we got home, I tidied the kitchen.

We put on our pj’s and brushed our teeth.

I read the boys picture books on my bed.

I read aloud from 1 Nephi to my family.

Charlie said our prayer.

The little boys “went to bed,” meaning they played and talked and teased each other in their room for a good 75 minutes before finally falling asleep.

I read my book (World Without End by Ken Follett) for a good 75 minutes before falling asleep.

I had the distinct impression that life is good.

Jack is being cared for, and the way that has all come together and is progressing is miraculous, in the sense that God’s fingerprints are all over his life and mine.

My other boys now benefit from having regular, reliable family scriptures and prayers, and family nights where we can go out and do things together.

There is a sense of calm manageability in our home, at least much of the time.

This is a sea change.

I feel like a grown-up, where before I usually felt like an awkward adolescent who was inadequate and barely holding on. I feel as though I’ve emerged from one dark, cold corridor of my life and stepped into another. This one is brighter and warmer.

And yet. I went in for my first ever mammogram recently and was called back (to the big flagship hospital’s breast care center this time) for a follow-up scan which revealed calcifications which may or may not be cancerous. Later this week I will have a biopsy.

Because I descend from a long line of folks who excel in worst-case scenarios, I’ve spent ten days contemplating my mortality. For years, it seemed as though my life and struggles would never end. There were periods where I could not fathom continuing with my burdens for another week, let alone another 40 or 50 years. I recall days where I would tell myself, “Just try to last through the next 30 minutes.” And after that half hour passed, I would tell myself to focus on making it through the next 30 minutes. In the worst times, this is how I survived Jack’s childhood and my littler boys’ babyhood.

Now, ironically, as life is sunnier and calmer, I am looking at my life and wondering what will happen.

We are making progress in helping our boys in all the areas in which they have needed help for so long. Because of the things we learned when Jack lived in our home, we have brought a bigger perspective and softer hearts to our new reality. The real change is that life seems short to me now, where before it seemed impossibly long.

During this last ten days, I have again asked myself if I am willing to accept God’s will for me and my family.

In my meditations, I have moved between fear and sadness, and peace because I do trust God. I have faith that whatever he gives me will be for my benefit. But, I’ve asked myself, what about my children? If they have to lose their mother at an early age, will he help them through it? Would they be able to overcome such a loss and its related effects? Would he help them with this added challenge, as well as with their disabilities?

I know I can do hard things with God’s help. But I worry for my children. I want to be here to help them through their trials, particularly while they are still little. This big question mark in my life may be the hardest exercise in trusting the Lord I’ve experienced to date. Do I trust him to actually help my boys if I am not here to fulfill the role of mother?

I have a new appreciation for nurturing and for the value of people who engage in it as their life’s central work.

I do not know what I will learn from my upcoming biopsy, but I have learned that trusting God is a process that continues to unfold for me. With each level of added understanding of his love and care for me, I find I then face new avenues which again try my trust.

I have to believe that these lessons are symbiotic. Each bit of yielding my heart to God and his plan offers a rung on which I can step, climbing to the next level of spiritual understanding.

The future is unclear.

I exercise faith.

God comes through for me and mine.

God propels me to a new plane of comprehension of his plan for me.

New trials arise.

I choose faith.

I struggle.

Jesus lifts me up, and on and on it goes, apparently.

There is a pattern, and while I am living it, I’m still learning it.