Monthly Archives: October 2018

Here’s the Tea, Sis

I haven’t been writing a whole lot. Part of this is because I have been sick for the last ten days and the only things that interest me are sleeping and not coughing.

Part of this is because of a cloak of ennui has wrapped itself around me–a nice, soft, velvety cloak of weirdly complacent intellectual boredom.

I have stopped reading. I had been devouring Tana French murder mysteries, up until late one night when Jeff was away working and the boys were sleeping, and the TV in the kitchen turned on, blaring loudly, BY ITSELF and I wanted to die, but instead I crept downstairs and turned it off like the warrior princess I am. I’ve since decided to lay off the murder mysteries for now.

But my brain also just can’t focus. Reading? Writing? What, why? All I care about currently is cough syrup and the mint chocolate chip ice cream that feels nice on my throat.

Anyway, ennui.

This could be because I am always questioning my writing content. Is it just more of the same? Is it simply processed and re-formed sentences about my version of spirituality? Do I even have anything to say? Ugh and also blar.

Because my brain isn’t firing on all cylinders, I offer you a few vignettes loosely related to special-needs parenting. Or my take on doing life. Or something.

Truman at OT

Truman has taken a real shining to occupational therapy because it involves a giant gym, which includes a zip line. So he’s a fan. Also, we now know how to talk about his inner “engine” and how fast it’s working and how we can effectively slow it down at times. It’s terrific.

I noticed in the waiting room that all the other moms were much younger than me, except the grandma who brought one child. One woman followed her preschool-aged son around with the backpack and tubing connected to his trach. She was petite and energetic, and at the beginning of her SN parenting journey.

If I’m being completely honest, I’ll tell you that I felt like a wizened husk of a parent. “I’ve done this so many times before with so many of my children,” I thought. This is like literally my fourth rodeo and I’m not so much jaded as I am tired of pretending to be bouncy about disabilities.

One thing remains consistent, I bought Truman a celebratory Happy Meal and myself a crisp Diet Coke when we were finished. We have always used drive-thrus as a means of reward and survival. Yay drive-thrus.

Jack Update

We haven’t seen Jack since August, which is the way it goes when he lives three hours away and we have three other children, so we planned a couple of visits for November and December.

There are moments which creep up on me, not quite daily, but often, when I have to pause and deal with the disconnect of Jack living far away and in other people’s care. I used to get an icy splash through my veins whenever this happened. My inner engine was working overtime in these situations.

Now, it’s more of a mental conversation I have with myself. It looks like this:

Me: I hate that Jack doesn’t live with his family. Are we doing enough for him? Even when we drive three hours to see him, he can only tolerate seeing us for around thirty minutes. And he can’t talk to me. Life is so strange and unexpected and frequently uncomfortable. Ugh.

Also me: Jack is living where God told us he needed to live. We are overseeing his care and praying for him and his caregivers every single day. Jack doesn’t want to hang out with us for long periods of time. He wants the Happy Meal, Reece’s cups, and toys we bring him. He is at peace with his life’s mission. You know this. Jack isn’t afraid. Stop worrying.

Will this inner dialogue ever cease? *insert shrug emoji*

Me at Hair Salon: A Tableau

At my hair appointment today, I thought about the fact that I am in a (knock on wood) calm stretch of ye olde parenting journey. I mean, yes I have to still physically drag Truman into first grade every damn day and we have to engage in ridiculous negotiations to get him to try any foods other than dino nuggets.

But comparatively, this is nothing.

My home isn’t full of behavior therapists or respite sitters every day. I’m not battling one school district or another for Jack’s right to an education. We aren’t living at Primary Children’s Hospital (just popping in occasionally). Our house doesn’t look like an orphanage anymore.

I stared out the window as I waited for my appointment and all I could think about was this: There is such luxury in spending time on things other than one’s survival.

I recently bought myself a handbag for my laptop. I hang out more with my mom. My house isn’t facing daily destruction. I can spend a day helping a neighbor. I’ve started cooking again. All of this is because I’m not drowning anymore.

Maybe this is how it works. We get periods of respite when we aren’t treading water, when we are in a rocking boat or, better yet, dry land. We will inevitably re-enter the water by some tide or sea creature dragging us in to once again swim for our lives.

But when we can, we rest. And we can help those who are still in the water.

Love is Greater Than Fear

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.

Only love.

Boy Story

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.

Last Friday

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.

He knows.

Grace is the beginning and the end of this story.