This one is a love letter to creativity.
This week, I had a vivid dream about Jack.
Jeff and I had picked him up for an outing at Sugarhouse Park, which incidentally was by our Sugarhouse home where we lived when Jack was a baby. I walked there multiple times per week with toddler Henry and baby Jack in the double jogger.
In the dream, the lake at the park was much bigger than it is in reality, and was spanned by a suspension bridge. Jack was on the bridge and Jeff and I were some distance away on a connected walkway, when we saw Jack jump from the bridge into the water.
I screamed. Jack loves the water, but can’t swim. Jeff and I started running toward the bridge. Two lifeguards (because giant lakes in parks in dreams have lifeguards, I guess), a man and a woman, had already reached Jack and were bringing him into the shore. The woman called up to me, “Don’t worry. We’ve got him. Everything is okay.” Jack, meanwhile was smiling at me and chuckling over the fun at being towed in.
It was such an intense dream, switching rapidly between calm, panic, and relief. I woke up right after having it, and as I fell back asleep, I thought, “Jack is telling me that he is not afraid.”
I was terrified when Jack jumped into the water because I felt responsible for his safety. But the reality of his life is that while Jeff and I still participate in overseeing his care, other people are now responsible for his day to day needs. It’s a different sort of interaction with my son. He once needed me to do everything for him, but as he entered adolescence, he instead needed me to find him the effective, intensive, full-time care he is now receiving.
Despite the moment of fear when he leapt in the water, the dream’s tone was utterly tranquil. As I drifted back to sleep, I mulled over these thoughts:
Jack has a legion of helpers.
They are doing a good job.
Jack is happy.
He is doing big things which terrify me.
He isn’t afraid.
He is brave.
I am afraid, but I’m trying to adjust to our lives apart.
One of the phrases which stood out to me during General Conference last weekend was a reference to Jesus teaching this: “Perfect love casteth out all fear.”
I suppose that the opposite of love isn’t hate. It’s fear. And love is its antidote. This is potentially life-changing.
Meaningfully, this verse as it is written in the Book of Mormon is nestled in the story of Jesus ministering to the little children, where he teaches, “I love little children with a perfect love; and they are all alike and partakers of salvation.”
Jack isn’t little anymore, but he is still my child. He is the child of his Heavenly Parents, too. Jesus is his brother. In this divine family, we are connected. United.
I sense that Jack is at peace with his life’s purpose. He trusts his Savior. Perhaps he knows him intimately.
All of this allays my fears. These dreams wherein I see Jack’s real spirit self blanket me in peace.
Jack is telling me he is not afraid.
Jack is telling me that I do not need to be afraid.
Fear not, fear not, fear not.
Ten days ago
I kept my youngest son home from school because the Occupational Therapy clinic, the one we’d been referred to by our psychiatrist and which didn’t have any openings until late November, called us with a cancellation. God knew we couldn’t wait until Thanksgiving for help. We were struggling merely to get Truman to go to school every day and to eat anything other than dino nuggets and various incarnations of processed sugar. God knew, and He came through, as He does.
I cajoled Truman out of the house. He doesn’t ever want to go anywhere. He prefers predictable, quiet, media-focused hours at home. While eating beige carbs.
All of this makes infinitely more sense now, following the two-hour Occupational Therapy evaluation, where I learned that Truman has Sensory Processing Disorder.
As the OT went over our struggles and compared them to lists describing SPD, Truman was essentially a textbook case. All of this information on his stressors, sensory integration concerns, and a pervasive level of overwhelm both crystallized and shone a clarifying light on the nebulous issues that have marred our days since school began six weeks ago.
I suddenly had a much better understanding of my son’s inner level of conflict and terror. My empathy grew three sizes that day.
Later, I pushed a cart around Costco, which seems to be the place where I do most of my existential motherhood musing. I felt glum.
Another diagnosis. Another thing that’s going to require lots and lots of therapy, time, and parenting effort. Another layer of difference between my life and everyone else’s lives.
Yet unlike the years it took me to recover from Jack and Charlie’s diagnoses, this time I felt strangely okay by evening. This is us, I told myself. It’s who we are. I know how to do hard things, and this is actually a really helpful bit of information in allowing us to productively move forward. Hello, quick healing process. Pleased to meet you. Also, thank you Jesus, for sending this mercy of acceptance.
I ate some chocolate-covered almonds and thought about the fact that we are capable of doing this, a single step at a time. And then…
One Week Ago…
We left for Disneyland.
The timing of this trip was not great, but it had been booked for awhile. My younger boys had never been to the Magic Kingdom. We were going with Grandma Shirley and my sisters and their families. It was going to be cousin-palooza. And yet, Truman was in the throes of not coping with noise, activity, and new things, and I was dragging him to Disneyland of all places.
He didn’t want to go. I didn’t want to go. The irony of NOT wanting to go to Disneyland sat heavily on me. “We are that weird,” I thought. Even The Happiest Place on Earth is laden with too much hardship and stress.
I forced him to go. He cried on the way to the airport. He got excited after going through security, which he oddly finds exhilarating, and announced he had decided to go to Disneyland with us. This is good, since he was going with us anyway.
Our first morning in the park was, and I say this without irony, magical. There were no lines. Truman was enamored with Star Tours. The big kids were dying over Space Mountain. The guys were making plans to build their own light sabers at the Star Trader. And we were at Disneyland! That iconic jewel of deep nostalgia and unfettered joy that had been out of reach for so many years of our lives as Jack’s family.
An hour and a half into our morning, Truman started to fall apart. It was getting busier and noisier. There were no dino nuggets in sight and he’d only eaten a few teddy grahams for breakfast. I could see his tension building. The volcano was going to explode.
But before I continue, I must tell you what happened exactly…
A Year and a Half Ago
In the dark days after Jack left home for residential care, I became Facebook friends with a writer named Meg Conley, who lives in Oakland, California. I’d known about her for years and decided we had enough mutual friends that it made sense for us to follow each other.
Meg messaged me a couple of weeks after Jack left. I hurt constantly with grief in those early days. Nothing felt normal. Nothing was right. In her message, she told me she had read all my posts describing the painful days leading up to Jack’s placement. She noted that I mentioned wanting to take my other boys to Disneyland, that bastion of “normal” family vacationing, and she said that her mother-in-law is Nanny in the Kingdom, which is a business where she helps families with special needs and/or young children have a more enjoyable time in the parks. She’s an extra set of hands, she sits with overwrought children, she obtains Fast Passes and Disabilities Access Passes, she provides a calm voice and the blissful relaxation of modeling clay in the midst of the frenetic energy of Disneyland. It’s literally her job.
Meg told me that whenever I wanted to go, her MIL was on board to help us. It was covered.
Sometimes I am flattened by the goodness of people, followed by a swelling sense of rightness that this is how people are at heart, if we can only tap into our inner divinity. Anyway…
Two Months Ago
When I emailed Deb (said Nanny), she told me she was unfortunately booked when were were going to be there, but she offered to help us get set up with a DAS pass, and get us oriented in doing Disney. This sounded like a kind offer to me, since she really didn’t have to do anything for us. We exchanged cell numbers and set a meeting time.
We met Deb, a soft-spoken and businesslike woman with a big, big, big heart. She calmed Truman down, essentially diffusing the volcano. She got us Fast Passes and a DAS pass. She took Truman to play in the giant Tree House by the Indiana Jones Ride while we all ate at Bengal Barbeque. She told me that once a month she takes her younger sister, who has Down Syndrome, to Disneyland. That was her conflict that afternoon. On her days off, she helps her sister, which in turn helps her mother. It’s a bit of respite and an enormous kindness.
Truman and I went back to the hotel at midday, stopping for a Happy Meal on the way there. I pondered the fact that we were doing this–that my bigger boys were squealing with their cousins on all the wilder rides, that we could do this with family, that my online friend and sister Meg sent her mother-in-law to help us get started, that Jack was in a safe and happy place and not melting down at Disneyland, and mostly that disabilities have both limited and schooled us in humility, gratitude, and compassion. Which leads me to…
Two Sundays Ago
I sat with Truman in Sharing Time in Primary. Church is one of the many things that Truman struggles with. It’s too long, crowded, boring, and out of his control. With lots of one-on-one support, he can generally make it through two of the three hours. Mostly.
The Sharing Time model is an old-school one which values reverence, stillness, and quiet–not the easiest thing for small kids, whether or not they have autism and sensory processing issues, and who have already sat for an hour and fifteen minutes in Sacrament Meeting. At 2:30 in the afternoon. When we really should all be taking siestas, amirite?
Truman kept jumping off his chair (this is proprioceptive and sensory-seeking behavior, yo). I kept shushing him. I sang the songs while he swung his legs and wiggled in his seat. Then the Primary President popped in a Bible video of Jesus ministering to the children.
At this point, the rowdy room turned quiet. The children were watching.
I leaned over and whispered, “Jesus loves you, Truman. He is proud of you.”
His eyes widened and he grinned up at me with his gap-toothed smile. “I can actually feel it,” he told me. “I feel it!”
The frenetic energy in the room distilled into a spiritual energy. The children internalized it. They went from wanting to flee Primary because it’s too long and crowded and boring, to wanting to be where Jesus is. They felt it.
I felt it, too.
Jesus loves little boys who are afraid of everything and cry daily before school. He loves hapless, exhausted moms. He loves Meg for reaching out to me in generosity, and Deb for being kind to people. He loves us when we’re sad and scared, and when we’re hopeful and happy.
Grace is the beginning and the end of this story.
I’ve had two more dreams about my dad in recent weeks. Both times, he came to visit during a family dinner.
In the first dream, he was 70 years old and sitting at the center of a long table. Family members were spread out to his right and left, and the composition of the room and the group reminded me of The Last Supper by Leonardo da Vinci. (Dreams are weird. Also I’m obsessed with them.) We were filling my dad in on all the news of the family, but we realized as he talked to us that he already knew all of it. He was very aware of the things currently happening in our lives.
In the second dream, he was young and healthy, in his forties. He was sitting on a white couch from which he looked up, grinning at me. My jaw fell open and then I grinned back. I exclaimed, “I am so happy to see you!” Then I woke up.
Both dreams left me with a sort of glow. They were warm and lovely, though brief.
The second dream essentially washed away the gritty angst I’d been gnawing on for a few weeks prior. I’d felt so angry and blue and just blech about his loss. I just couldn’t shake the feeling. Until the dream. Then the awfulness evaporated.
Meanwhile, Truman is struggling not only with school but with eating anything besides dinosaur nuggets, with attending church, and with frequent meltdowns relating to hunger/anxiety/social situations. He’s also regressed with toilet training. He’s smart as a whip and super adorable. He has friends at school and at church. But autism and anxiety are rearing their rotten toothy heads and making things difficult in all areas of family life at the moment.
I’m going to write more about this, but first, an important vignette:
Last month, two of my sisters and their families backpacked and kayaked into a certain lake in the Grand Tetons. It was a favorite hiking and camping location of my dad’s, and if you’ve seen it, you’ll know why. It’s pristine and exquisitely beautiful.
On the last day of their trip, Sarah waved goodbye to Kate and Oliver as they paddled away. She stood on the shore of the lake and watched a golden eagle swooping down low. Just then, a canoe skimmed over the water to where she stood.
The person paddling the canoe was my dad’s dear friend and business partner, Dr. Keller.
In the middle of the wilderness. Randomly. At the same campsite and at the same moment.
“What are you doing here?!” Sarah exclaimed. Dr. Keller went to find his wife, Jean, who was walking in on the trail, taking her by the hand and telling her, “I’ve got a sweet surprise for you.”
There were hugs and smiles and photos, and Sarah said, “Imagine seeing you HERE, in this place.”
Jean responded, “It’s the exact right place.”
The Kellers had spent the day reminiscing about my dad as they begin their journey into the lake. While Sarah stood and talked with them, a yellow butterfly fluttered and landed between her and Dr. Keller. It stayed there the entire time they spoke. Sarah felt that the eagle and the butterfly were signals from our dad, telling her that he was there, in that beautiful place, with people that he loves.
Now remove your mind’s eye from the splendor of said lake and return to the present, specifically my car, as Truman wails and yells about not wanting to go to school. It was a Friday, after many days of dragging/fighting/cajoling the boy to first grade. We were all pretty exhausted. Jeff was along to help carry Truman. Almost-seven-year-olds who don’t want to walk into school weigh a lot, you know. Especially when they kick and hit.
I was driving. Jeff was saying the prayer. As I reversed from the driveway, a yellow butterfly flew by and stopped, hovering by the windshield, directly in my line of vision. It stayed there for the duration of the prayer. When we finished the prayer, it flew away.
As it fluttered off, I distinctly felt that my dad was showing me, in a way that made all sorts of sense to me, that he would be with Truman that day. I didn’t need to worry about Littlest Boy. Grandpa was going to help him at school.
All of these things have educated me in the beauty of family bonds, which last beyond death. They last. They’re real. They don’t end. People don’t end when their lives on earth do. They still exist and they still care. They know us and they are close to us.
This is pretty ding dong amazing stuff. I’m awed by it.
And feeling pretty loved, too.
40-year-old dad paddling us around in GTNP circa 1985.
Dad and Wes Keller. Ye Olde BFF’s.
Me and Dad. I think this is 1979.
I’m beginning to realize the shape that this blog is taking, now that’s it’s no longer the Survival Journal of My Daily Life Raising Jack.
I can see, nearly a year and a half since Jack entered full-time care, that this is a forum for continuing the conversation about Being Human. This is where I can continue to talk, in no particular order other than the actual unfolding of my life, about hardship and resilience, vulnerability and recovery. And Jesus, duh.
There are people who read this who have some connection to disabilities, but I’m seeing that mostly people return to my weird stories because they also face really difficult things in their own lives.
Being challenged by life is the common denominator, it turns out. And I am here to talk about it.
Having said that, here are a few things that have happened in my life, of late.
What things are happening in your life, right now? What have you recently come to understand?
I wrote an “inspirational” Instagram post yesterday after Truman had a day of roaring success at school, following 6 previous nightmare days wherein he struggled to acclimate to first grade. Yay us! Victory was ours. Faith overcomes all things.
And then today, Truman reverted back to panic mode over the prospect of returning to school. He feels it’s too long and there are too many factors out of his control, such as when he gets to have a snack. He fought me at every juncture this morning. I swallowed the bilious panic rising from my gut when I thought of engaging in this impossible, negative battle day after day, all year long.
I had to forcibly remove him from the car. We were late. He kept taking off his shoes to impede our progress. When he saw the other students already in the classroom, he melted down. At this point, the Assistant Principal sidled over and let me know there was going to be a lock down drill in a few minutes, and if I wanted to take T on a little drive and return after, he was down with that. Lock downs (even practice ones) are one of my son’s fears. Which I get.
So we left and got fries. We came back post-drill and had the same lovely fight scene featuring me dragging/cajoling/carrying Truman into school.
Not that anybody asked for a play by play of the fresh morning hell I’ve been encountering since school commenced. So why am I writing about it? I don’t know. Because it’s on my mind, I guess.
I drove to Costco after leaving him at school and had nothing good to say about anything. Just swears. That’s all my lips were capable of uttering for a good hour. I called Jeff and he and possibly a couple people on the bulk grain aisle got a bit of an earful.
Anxiety and autism? I am so over them. Special needs parenting? It seems like a cruel joke invented to make every single aspect of life so especially difficult. Having children? Sorry, folks of neurotypical offspring. I am utterly jaded. If anyone asked my opinion right now on whether they should have kids, I don’t know that I could honestly recommend it to them.
So that’s my stormy frame of mind.
I came home, unloaded the Costco groceries, ate the Costa Vida salad I treated myself to since the day was a clustercuss, and spent an hour cleaning the neglected and uber dirty kitchen. While I cleaned, I listened to the next General Conference talk in my queue, which was “He That Shall Endure to the End, the Same Shall Be Saved” by Claudio D. Zivic. Do you ever find that the thing that you happen to stumble on naturally on an ugly day is the exact right thing? And the exact right thing at the exact right time? Because that’s what happened here.
This talk, while mainly directed at people who are at odds with the Church and evaluating whether or not to continue in the Gospel, was kind of a conduit of reassurance and hope that I was grasping for.
There’s a lot of good stuff in this talk, and I basically let the tears and the stress flow from me as I listened. I’m feeling rather inadequate once again on the parenting front. I’m feeling my weakness and my desperation for change. The words, “The Lord will make ‘weak things become strong'” gave me a hand to grasp and pull myself from my pit of misery.
Zivik also said this: “Life is difficult for each of us. We all have a time of trials, a time of happiness, a time for making decisions, a time for overcoming obstacles, and a time for taking advantage of opportunities.”
I needed to hear that life isn’t a perpetual misery cycle, though it sometimes feels that way. It’s punctuated by periods of great difficulty and moderate difficulty, but also has stretches of relative peace. There will always be variation, which is good, because it gives me hope when I am in the trough of a wild sea.
I hung some toddler pictures of Jack and happy hunting pictures of my dad on the bulletin board as the talk ended and I felt that my Heavenly Parents were calming me with a promise that the awful days and the extended periods of awful days a) serve a purpose in changing me into a better person and b) won’t last. There will be respite.
Then I drank a Diet Coke and graded student essays. And the bitterness ran out of me.
Today’s not so bad, I’ve determined. It’s looking up.
Allow me to share with you a couple of recent experiences relating to the identical twins of Autism and Anxiety.
First, a few weeks ago, I took my two younger boys, along with a couple of young cousins, to a new park by our house. It’s an enormous and exciting place, with massive climbing structures and a giant splashpad section devoted to water play.
The morning we were there was pretty hot. My littlest boy hadn’t eaten a whole lot for breakfast (Hi, sensory food aversions, thanks for being a thing), and he was hot and grumpy. All of this added to his feeling of being overwhelmed. It was too much. Too much sun, too much noise, too many people. He started wailing. I mean, really screaming and moaning and sobbing. I had other kids spread throughout the park and didn’t want to pack them up after just arriving, so I texted Jeff, who was working from home and who could come pick him up and take Littlest home.
It took Jeff 25 minutes to get there once he extricated himself from a conference call. In that 25 minutes, my littlest boy never stopped wailing. In fact, he got louder. And wailier. I spoke calmly to him and reassured him Dad was on his way, but he was beyond reason at that point. He was inconsolable. We got a few looks, like “Why is that big tall kid freaking out and sobbing?” or perhaps “What’s with that mom? Why doesn’t she take that kid away and leave us in peace?”
This experience back in my early mothering days would have scorched the self-confidence right out of me. It would have done me in for the whole day. But now, post-Jack, I felt okay. I almost felt like saying to the other moms around me, “You guys, this is NOTHING. He’s not even attacking or hurting anyone. Really, this is straight up no big deal.”
That probably would’ve made things even weirder though.
Anyway, Jeff arrived and took the screamer away. The day continued. The park returned to regular kid bedlam.
The second story happened yesterday, on the first day of school. My littlest boy went to first grade and got confused about where he was meant to line up after recess. The chalk marker that had indicated his teacher’s name at the school open house was gone. At this point, anxiety and the rigid thinking of autism immobilized him. He curled up in a ball and refused to go into class, even when the Assistant Principal helped him know where his classroom was.
Jeff and I went to the school, where Littlest was digging in his heels and refusing to do first grade. We were ultimately saved by lunch. I stayed and helped the boy know where to go in the lunch room. I helped him find his lunchbox in the bin with his teacher’s name on it. I helped him find the table with his teacher’s name on it. I sat by him while he ate his peanut butter sandwich. And I helped him clean up and file back to class after his teacher.
Incidentally, I also helped half the class open their chocolate milk cartons and tie their shoes. First graders basically need a personal assistant. Any old grown up will do.
I looked around at the 10 million elementary school kids around us who WEREN’T struggling, and I felt that creeping, icky feeling of being an outlier. “We are so freaking not the same as other families,” I thought.
Reader, it didn’t do me in, but it was a bit of a face slap.
“Wake up and stop thinking you can do things like everyone else!” It screamed at me.
Once we returned to his classroom, Littlest sat at his desk and was calm. He agreed to stay through the rest of the day without me.
This morning, I am at my first day back at class too, teaching university writing. So Jeff took Littlest to school and helped him get situated. Apparently, it was a little bit of a teary goodbye, but not too bad. I’m super proud of my first grader. He is struggling to cope with not only the rigors of a full school day as a first grader, but also the anxiety and literal/rigid thinking of autism which makes new, loud, chaotic, big things super scary.
When these types of things happen, dear Reader, I note that MY stress response also spikes. I may not lose the ability to interface with the world for the rest of the day as in years past, but I find myself incredibly anxious. It’s anxiety by association. And parentage. Which is okay, and possibly more than okay in that it allows me to see a glimpse of what it’s like for my boys.
Empathy leads to understanding. Compassion fosters love.
Here’s to a decent second day of school.
This week, I cleaned out Jack’s old room, which is now a storage room. The good news is, the camping gear, Halloween costumes, snow pants and boots, my dad’s old golf clubs, and my wedding dress are now organized and easily accessible (side note: I do not need easy access to my wedding dress). The part that took me by surprise was the wave of emotion I experienced in going through remnants of Jack’s early childhood. Baby blankets, photographs, his PECS binder, ABA therapy file folders–there was just so much that brought the most difficult years of my life back, and it was amplified by my separation from Jack in space and time.
Who weeps when cleaning out an explosively disorganized room? Me, apparently.
Jeff and I went to Costco later that day and I told him on the way home how profoundly affected I felt going through items reminiscent of Jack’s toddler and elementary school years. “I didn’t miss Jack at that moment,” I told him. “I am confident and happy in where Jack is right now. I’m not sad as much as I am traumatized remembering how brutally hard those years were.”
And then Jeff said exactly the right thing, which was this: “You did that. You went through it.”
Validation. It’s pretty powerful.
Those days were brutal, and are, fortunately, in the past.
I also drove to southern Utah this week and spent much of the drive contemplating Jack. He lives far away. We don’t get to see him much. When we do see him, he can’t talk to me. The good parts are that Jack’s needs are being met by excellent caregivers who love him. The hard parts are that we miss out on the moments of sweetness that come from being with Jack all the time.
Its a weird trade off and I don’t know that it will ever feel normal to me.
Because of this separation, I have acutely felt the need to have a family photo in Jack’s town so he can be there. I need to have an updated image of all of us together, not from bygone days when Jack lived at home, but current and reflective of our present life as a family. So that’s happening this trip, too. Someone asked me if Jack will cooperate with the photo shoot, and I told them that all he has to do is exist in our general vicinity and it will work out great. No posing or smiling at the camera necessary, just lots of candid togetherness.
Even though I’m waxing a bit glum (or at least conflicted) about The Way Things Are For Us, the reality is that Jack’s life is a miracle.
Our ability to function as a family has been restored, which is a miracle.
Jack’s perfect placement and lovely home and amazing caregivers are a miracle.
The fact that our lives changed so dramatically and so quickly and so positively are miracles.
My life felt like wall-to-wall failure Before, and Now it is straight up a testament to God’s ability to intervene and change the worst circumstances to something remarkable and beautiful.
And feeling comfort in knowing Jack’s life is charmed and blessed? Miraculous.