I wrote this piece for Segullah about the best gift I ever got. Please note that it’s not about Christmas shoes, but that I cried a whole lot in the writing of this story. Merry Christmas.
Care About Cooking
I used to like finding and trying new recipes. Those impulses evaporated over many years of autism living. There’s no joy in making elaborate food that no one will eat. When your life is circumscribed by various disabilities, there’s also no joy in spending any excess energy AT ALL in making any food, period. The bare minimum will suffice. The joy of cooking hasn’t returned for me, and I’m okay with this. I still do enough to get by. Jeff cooks. Costco cooks for us. But we keep it simple, and my mental health is high-fiving me.
Magazines about fashion, home decor, travel, and generalized “lifestyle influencing” depressed the h*ck out of me. They made me and my life feel inadequate so guess what? I banished them. I prefer books. I curate what I read, and it’s not some what some dumb magazine editor somewhere decided is cool/important/on trend. When I think about getting rid of magazines from my life, I mentally assume a power pose. I basically AM Wonder Woman.
Put Up With Anyone on Social Media Who Thinks They’re Fancy
This started a few years ago when I unfollowed everyone on IG, except for my friends and all the National Parks. Grand Tetons at sunset, yaaasss. Grand Canyon during a rainstorm, um yeah. Bison trudging through the Lamar Valley of Yellowstone, fill up my feed please! I could NOT EVEN handle any more social media in my life that featured overly-groomed accounts of people whose lives were less real life and more influencer-ish. I also unfollowed anyone trying to sell me something. It was making me hate social media. I did the same thing with Twitter, but it was a big fat unfollow for anyone who tweets using the F word, which is, surprisingly, almost everyone. After this blessed and blissful purge, I took back my feeds and have added in news accounts and others who I don’t personally know, but who have something authentic, honest, and vital to offer. Who’s in control here? It me.
Compare Myself to People/Their Lives
There’s nothing good that comes from this rookie mistake. But it’s also something I just absolutely had to learn from lots of living. It’s also a byproduct of becoming my own biggest advocate. When you know, understand, accept, and like yourself, you can be kind to yourself while also seeing other people as who they really are. I have no business comparing humans. It’s so much nicer seeing me as me and other people as themselves, and not worrying about sorting, structuring, ranking etc.
Worry About Jack
I think about him all the time. I pray for him multiple times per day. I love him. But I don’t worry about how he is doing. I don’t fret over his new life and the fact that it’s largely out of my hands. I attribute this to my Heavenly Parents teaching me about Jack’s purpose and his peaceful spirit. Through dreams and insights/promptings that came as I read scriptures, exercised, showered, and drove, the Spirit has instructed me in Jack’s valor. I know now that he’s fine. He is completely fine–inwardly and outwardly happy, and I am so grateful.
I don’t fear it anymore, because I’m not the sole caregiver for a kiddo who needs intensive, one-on-one care by big burly men 24/7. And this year we aren’t watching my dad die. So the season is back to being joyful and a gift in an of itself, you know, because of Jesus.
Today Charlie, my perennial ballet date, and I picked up my mom and went to see The Nutcracker. I have been looking forward to this afternoon at the ballet, especially as I finished grading research papers yesterday and bid adieu to fall semester. And the Nutcracker is magical. Here’s how the outing went:
- Autism came along with us, and Charlie spent 45 minutes being angry during our drive there since I haven’t yet taken him to Europe????
- Because he doesn’t get that most kids don’t just get to up and tour Europe while in elementary school, and
- European history is totally his thang, and
- I am the meanest mom who ever lived, and
- It’s NOT FAIR, and
- He doesn’t want to go SOMEDAY, he wants to go NOW.
- Rigidity and obsessiveness are super fun parts of my parenting adventure.
- Once we got to the ballet with Gma Shirley, we took a happy photo together in the lobby next to Herr Nutcracker, and went into the theater where
- The three-year-old behind me kicked my seat nonstop for the performance.
- This is the sort of thing I pride myself on being super chill about, because Jack was an expert seat-kicker throughout his little kid years, particularly that time on the airplane with a stranger named Judy, whose seat toddler-Jack kicked for five hours (there was an empty seat next to her she could’ve used, so…I don’t get why she didn’t use that option. Anyway)
- Lil Girl behind me at the ballet also gave a running commentary of the show.
- In her regular voice. There was no whispering.
- Just kicking and loud kid speech for an hour, in the silence of the theater.
- I thought to myself, “This is exactly the kind of thing I should be extra understanding about, considering my particular children and their penchant for loud public behavior.”
- I turned to look behind me at one point, and Lil Girl’s mother was super unconcerned about both the kicking and the talking. In fact, she responded to and validated each of her daughter’s comments.
- This is what my dad would have referred to as “Being a Dip Sh*[z].” I digress.
- At this point I was like, “Okay, so just accept that this year, going to see The Nutcracker isn’t going to be magical. It’s going to be Kid Town, Population of One: somebody else’s loud kid. Just roll with it.”
- And the kicking continued, punctuating these thoughts with a chaotic percussive beat.
- Then, at intermission, Charlie hounded me to buy him a nutcracker from the shop in the lobby.
- I’d left my wallet in the theater, so I told him no.
- At which point, he lost his marbles and threw a fit about never getting anything he wants, ever. While we were literally at a magical Christmas ballet that he freaking loves.
- He was making a scene, which culminated when he kind of inadvertently threw an elbow at my face, knocking my glasses askew and making us the sudden stars of the show in the lobby.
- These are the things which then went through my mind: a) this is what I get for silently judging Clueless Mom of Lil Kicky Loud Girl, b) because the crazy family at this ballet? It us, and c) Parenting: It’s a real Trash-Kicker.
- The second half of the ballet was better. Charlie lost his hatred of me while being distracted by Mother Buffoon.
- Lil Girl fell asleep.
- And woke up when the Sugar Plum Fairy emerged, to tell her mom, with wonder in her gravelly little gremlin voice, “She’s beautiful.”
- At which point, I loved Lil Girl. She was enchanted by the Nutcracker, too.
- I proceeded to enjoy the Tchaikovsky and the costumes and the artistry.
- And I left thinking how the thing that stuck with me was that parenting is a real crap shoot.
- Parenting any and all kids is pretty unpredictable.
- And exhausting.
- Also humbling.
- In a “let’s take any pride you once had and fling it heartily off a seaside cliff” sort of way.
- Walking through the flat, fading winter light on our way to the parking garage, I looked at the many moms with their little girls in party dresses.
- And my son in his blue suit, who isn’t ungrateful so much as he is a ten-year-old person with autism, grappling with growing up and wanting all the things in the whole world, right now.
- We are all trying.
- No one’s life features the precision and perfection of the ballet.
- That’s okay.
- We still get the snatches of wonder and beauty.
- We get to keep trying.
*I gave this talk today at church. And now I put it here.*
Whenever Christmastime rolls around, I think of an experience from several years ago when Henry was in fifth grade and got to participate in a light show for the school holiday music program. As a bit of background information, my husband, Jeff, is kind of obsessed with flashlights—specifically tiny, powerful flashlights. He’s an engineer, he likes to be prepared in any situation, and he sees the value of well-engineered things.
On a related note, we spent part of our honeymoon touring the Hoover Dam. When they told us there was either the basic tour or the deluxe hard hat tour, which included seeing the generators at the bottom of the dam, I was like, “Basic is good. I don’t need a hard hat,” while Jeff was like “Take my money. Give us the hard hats.” He turned to me with glistening eyes and said, “I have alway swanted to see the generators.” He likes well-made things and feats of engineering. What could I say? Somewhere there is a photo of twenty-year-old me in overalls and a hardhat, standing in a giant tunnel within the dam. Because fashion in cyclical, see. And overalls are again a trend.
So, back to the light show: essentially, the entire fifth grade was assigned to bring flashlights. They then learned a choreographed program wherein they blinked their lights to the tune of the Trans-Siberian Orchestra’s rock opera-ish version of Carol of the Bells.
Henry needed a flashlight for school? No problem. Jeff let him pick one from his flashlight menagerie. Done and done. Except that Henry told me a few days later that his light was much, much brighter than his peers’ lights. His teacher had suggested he bring a less-bright flashlight.
I told this to Jeff, who was highly offended. “We do not own weaker flashlights,” he said. “It’s not my fault all the other kids brought subpar lights.” Henry and I looked at each other and shrugged. Because, you guys, Engineers. They have standards.
The holiday program arrived and I sat with baby Truman on my lap as the room went dark and the Trans-Siberian Orchestra boomed from the sound system. The lights blinked off and on to the music beautifully until suddenly….oh no. NO. Oh gosh.Oh my stars. I knew exactly which one was Henry’s light because YIKES.
The blinding one, the floodlight, the flashlight that made people avert their eyes.The prison searchlight sweeping the room? That was my child. Truman was transfixed. Meanwhile tears seeped out of my eyes while I held in the laughter because of course that was my kid. We are that family. We are the blinding flashlight family, and that’s just the way it is.
We own our idiosyncrasies and even our disabilities, then I write about them and put them on the internet. *Insert shrug emoji*. Whenever I am assigned to speak, I feel that I should say to everyone, “You knew what I was when you asked me to speak.And now you will hear autism stories.” It’s fair warning.
My assigned topic is that of finding joy in living the Gospel–in seeing the Gospel not as a burden, but as a source of happiness.
The Gospel was a source of happiness for me throughout my youth and into adulthood. I just knew it was true, and it enriched my life. The end.
But when I had our second child, life became much more complex. Jack is nonverbal with severe autism and Macrocephaly Capillary Malformation Syndrome. He’s mentally very delayed. Attending church, particularly, was a giant struggle for many years.
Jack screamed in nursery. He screamed in Primary. He screamed in sacrament meeting. He didn’t understand sitting quietly. The music and activity of so many people overwhelmed him. As he got older, he often hit us at church because he was in a state of sensory overload and trying to communicate that he needed to leave.
Of course, these behavior issues didn’t just exist on Sundays. They happened all the time, which led to a kind of existential crisis for me. I knew God was there and that He loved us, but it was a painful journey to learn why this had happened to my family, and figure out how we would survive it.
I knew Jesus could heal—had healed—the blind, disabled, even the dead in the New Testament. But I also knew he wasn’t going to heal Jack, not now–not the way I hoped. He gave us this challenge for some purpose. Healing wasn’t going to look like no more autism, or like a nonverbal person suddenly being able to speak.
A few years ago, Elder Holland spoke in conference about this idea of facing gaps in our beliefs—a trial of our faith, essentially. And interestingly, he begins this talk with the scriptural account of a family with an afflicted child.
He says, “On one occasion Jesus came upon … the father of an afflicted child, seeking a blessing for his son. With the boy still gnashing his teeth, foaming from the mouth, and thrashing on the ground in front of them, the father appealed to Jesus with what must have been last-resort desperation in his voice:
‘If thou canst do anything,’ he said, ‘have compassion on us, and help us.
‘Jesus said unto him, If thou canst believe, all things are possible to him that believeth.
‘And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief.’”
Elder Holland continues, “With no other hope remaining, this father asserts what faith he has and pleads with the Savior of the world, This man is saying, in effect, ‘Our whole family is pleading. Our struggle never ceases. We are exhausted. Our son falls into the water. He falls into the fire. He is continually in danger, and we are continually afraid. We don’t know where else to turn. Can you help us? We will be grateful for anything—a partial blessing, a glimmer of hope, some small lifting of the burden carried by this boy’s mother every day of her life.’”
When Elder Holland spoke these words, I can still remember where I was. I was driving through Sardine Canyon toward Cache Valley and Idaho on a sunny Saturday, and I wondered how he knew precisely what my life was like. He had summarized it in just a few lines.
He then went on to discuss this concept of facing gaps in our faith by laying the faith we do have at the feet of our Savior and asking Him to bolster us—physically, spiritually, emotionally.
Again, he quotes from Mark, “’If thou canst do anything,’spoken by the father, comes back to him ‘If thou canst believe,’ spoken by the Master.”
In other words, Jesus tells the man that all miracles are conditional upon belief. Faith is the prerequisite. Believing that Jesus can help us is the first step in accessing his healing.
And then this:
“’Straightway,’ the scripture says—not slowly nor skeptically nor cynically but ‘straightway’—the father cries out in his unvarnished parental pain, ‘Lord, I believe; help thou mine unbelief.’ In response to new and still partial faith, Jesus heals the boy, almost literally raising him from the dead, as Mark describes the incident.’”
Here’s my take on this powerful story. The family’s travail brought this father’s faith to a point of growth. He knows that he is lacking, and yet he believes. He yearns to believe more, to have his faith grow to the point of finding relief, even healing.
Something very similar happened to me over the course of many years as Jack’s mom.
I started my life in a place of comfort, even complacency, regarding the Gospel. In my childhood and my youth, I loved Jesus. I knew He was my Savior. But I didn’t understand true faith—the likes of which we can’t see until life humbles us to the point where the shackles of pride fall away and allow the Savior to step in and, in a real way, redeem us.
When I say that going to church throughout Jack’s childhood was hard, it’s a tremendous understatement. Jack’s limitations made everything challenging. We were in survival mode, which was our reality for many years.
None of this was Jack’s fault. His behaviors are the result of his disabilities, not of brattiness, or poor parenting, or evil intentions. It says it right on Jack’s church membership record—he is unaccountable. That distinction is really beautiful because it tells me that Jack is bravely living the life God planned for him, and that he is already saved. He doesn’t have to prove anything. The Savior’s Atonement applies to him and means that he WILL qualify for eternal life and exaltation.
In this way, Jack’s disabilities are an enormous blessing. Having him in our family is helping us learn to better align our lives with how Jesus Christ lived.
From my perspective, as disciples of Jesus we will all inevitably face a crisis of faith to some degree, where we must decide whether the gaps in our faith will consume us, or if we will allow our hardships to teach us—to help us fully embrace Jesus Christ.
Essentially, I felt like I could fundamentally reduce my response to difficulty to those two options: either turning away from the Savior, or turning to Him, embracing His hope and holding tightly to it to see me through this dark time.
Where at first I’d wondered why God wanted us to suffer so much as a family, I came to a point in the years of my inadequacy and struggle when I decided that I was going to see God’s plan as my solution. I was going to trust Him and ask Him to help me understand. This did not happen overnight.
For many years when Jack was young, I was caught up in the fallacy that I had to earn God’s love and approval by being a successful parent. I believed that God was disappointed in my ability to improve our family’s life and Jack’s behaviors. I couldn’t fix it. I knew He loved us, but I envisioned Him shaking His head at my inadequacy. I even struggled with wanting to pray. I knew that for whatever reason, He wasn’t going to change our situation, so what was the point?
Then, a few years ago, I was seeking answers and I had a series of revelatory dreams which helped me better understand my relationship with God.
In one dream, I was at Disneyland with my mother-in-law, Joyce, and sister-in-law, Mia,who was very pregnant in the dream and who suddenly went into labor. Joyce delivered the baby, right there on the ground in the Happiest Place on Earth (and obviously everybody’s dream location for suddenly giving birth). Then the dream shifted and we were now in our hotel room. Mia was sleeping and Joyce was holding the baby. Joyce said quietly to me, “I need to find something warm to wrap the baby in.” I told her I would look in my suitcase for something we could use.
To my amazement, when I opened my suitcase, it was completely filled with baby supplies: diapers, wipes, footed jammies, onesies, receiving blankets.Everything we needed was right there, in abundance. I was astonished and felt a great sense of wonder and relief at having everything we needed, right there in my suitcase.
That’s when I woke up, and realized that God was showing me through this dream that He has given me everything I need to raise my children. Everything. All the help and resources my unique family requires are available to me. He packed it into my suitcase before I even knew I would need it.
I had a handful of similar dreams, all of which were equally powerful and vivid in their use of symbols. I’m a reader and a writer, and I’ve learned that God speaks to me in my dreams through symbolism, which I LOVE SO MUCH. He knows me and knows that this is how I learn. It’s how he teaches me, and I love Him for it.
I began to understand that God was on my side. He wasn’t disappointed in me,shaking his head or turning his back on us. He had been helping me all along,providing the behaviorist, the special ed teachers, the pediatrician, the ENT,the gastroenterologist, the psychiatrist, the respite helpers, the occupational therapists, the speech therapists, the bus drivers, the support coordinators—the vast community of people who supported us by supporting Jack.
Even more than this, I saw that God did not expect me to solve my problems on my own. I couldn’t save Jack and I couldn’t save myself. Only Jesus can do that.While I had always loved Jesus, I hadn’t yet accepted that He is my Savior in a literal, every-day, utilitarian way. I was learning that being saved by the Savior didn’t mean simply when this life ends. I was being saved by Him every difficult day of Jack’s childhood.
This leads to a couple of (for me) life-changing analogies:
First, I had this picture in my head of me yoked, like a horse pulling a wagon, beside the Savior. He tells us in the New Testament that His yoke is easy and His burden light. I saw that while I was extremely limited in my own abilities,with the Savior pulling the heavy load beside me, I couldn’t NOT succeed. He has infinite strength and all power. My impossible burdens were not impossible to Him.
All those years of parenting an aggressive, mentally-delayed, nonverbal giant lap teen, this is how I survived. It was through the grace of the Savior lending me His strength. I am like Ammon, who said, “Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I will boast of my God, for in his strength I can do all things.” All my strength and resilience came from Him. He pulled me through it.
My second mental image is that of a ballast. A ballast is something heavy, such as water or rocks, that is placed in such a way as to provide stability or buoyancy. In a ship, there are often ballast tanks, which hold water within the hull of the ship to give weight and control to the boat. It’s the same principle in a hot air balloon, which has weights hanging over the sides of the basket. They are a steadying force.
When I accepted that my life was always going to include challenges bigger than myself, I went from thinking abstractly about “The Atonement,” to thinking concretely of Jesus as my ballast. Sometimes we like to throw around advice to each other like, “You should use the Atonement to help you through this trial.” I had heard this suggestion often and it seemed so nebulous to me. I wanted someone to tell me what that meant. How tho? How does one “use the Atonement?”
President Nelson discussed this not long ago when he said we should not refer to “the Atonement,” but to “the Atonement of Jesus Christ.” Basically, by using the shortcut term “the Atonement,” he said that we remove Jesus Christ, who is the source of the redemptive power of His Atonement. In other words, “the Atonement” isn’t an event. It’s a person. It’s the Savior.
Over a period of time, I started to see Jesus as my real time, actual solution. I needed strength. He was there, waiting to give me strength. He had already atoned for me and Jack. He was simply waiting for me to turn to Him. He knew my trials. He knew Jack’s trials. He was our answer. He was the ballast.
And as I started thinking of Him as my copilot, for lack of a better term, He became the stabilizing force that kept me upright and moving forward. He was both the buoyancy and the weight that steadied me against all the figurative waves and winds. His presence in my life is, in a real way, the strength that counteracts the pressures working against me.
When we could no longer safely care for Jack at home a year and a half ago, the Savior was my ballast through that incredibly stormy time. I did not want to place Jack in residential care. It was not the outcome I wanted. But the spirit confirmed to me again and again that this was Jack’s path and it would be all right. Through this, Jesus was both my lift and my anchor. He held me up, stabilized my sad heart, and gave me the strength I lacked so I could move forward.
The entire process of finding the right care and group home for Jack is, in my mind, an incandescent modern miracle. My Heavenly Parents gave me the people, the answers, and the guidance that we needed. Jesus gave me support and strength to send my thirteen-year-old to live in a faraway town in the care of other people.
Everyone who works in the field told us to expect a twelve to eighteen-month process forgetting approval and placement for Jack’s care. I didn’t know how I would survive this period as we were then in a daily state of crisis, with Jack doing things like attacking his siblings and throwing the Kitchenaid mixer across the room. Our support coordinator submitted the documents electronically on a Sunday evening. She then called me at 8:00 AM the very next day—a Monday morning—to say that Jack’s placement had been approved. She was rendered basically speechless. She had never seen something like this happen instantaneously.
I saw it this way: as Jack’s mother, I was yoked with the Savior. He provided this solution for us, and it was as clearly miraculous as the raising of Lazarus and the healing of the lepers.
In response to the statement, “living the Gospel shouldn’t be a burden,” I would respond, “Life is a burden.”
Mortality is a heavy, hard, unwieldy burden that we willingly, joyfully chose to carry because of the ways it would magnify us.
The balm, the solution, the answer to our burden is the Savior. This is why the angels told the shepherds on the night of Jesus’s birth to fear not. Their tidings truly were joyous. Jesus coming to earth and redeeming us brought enough hope to swallow up all the pain and sadness and difficulty that exists in the entire world. He is the antidote to fear and the relief from suffering.
I learned that this is the promise of the Gospel. Our Savior overcame all suffering, and can help us overcome every difficult thing. He took me from a place of constant struggle compounded by hopelessness, to today, to now, where I am at peace with Jack’s purpose and with my Heavenly Parents’ solutions for my family.