The Summer of Our Discontent

This is the story of our rough summer.

Some of you know that we spent the entire season selling our house...that is, trying to sell our house. A horrendous process during the best of times, this is one activity I do not advise: selling your house during a global pandemic. No one’s much in the mood to make a major life decision when we don’t even feel safe going to the grocery store. And selling your house while a deranged and tyrannical POTUS stokes fear and racism, attacks peaceful protesters and destroys democracy? It turns out that Trump-driven national instability also makes for somewhat of an uphill battle regarding home selling. Just for fun, the end of summer hit us all with the second largest wildfire in California state history at the edge of Davis. Nope. Not great timing.

In order to provide that perfect showplace illusion — that five human beings did not occupy this space known as our home — we spent the summer living with the knowledge that anyone could request a showing of our place at any moment. And when these requests came, we frantically texted, or yelled up the stairs to each other, some version of: SHOWING AT 11:00! After a week or so, we developed clear duties; we all knew our roles, and we got into a frenetic rhythm. (Truman probably vacuumed, swept, and mopped the floors 25 times this summer.) Sometimes we had to stash breakfast pans in the stove and clothes hampers in the garage. Always we hid toothbrushes and hairbrushes in cabinets and stowed loose paper in drawers. Every garbage can was emptied. Every light was turned on. Every bed was made to military perfection. And we walked out our front door knowing that strangers would soon enter to judge our most vulnerable and private spaces. 

I quickly realized the wisdom of removing all traces of personal effects as I found the process invasive and intrusive; I didn’t want people looking at photographs of my children or my husband on our honeymoon. After a while, I began to feel resentful of anyone looking at ANYthing in my house. Sure, showings are part of the process, but did these people have to enter my home? 

More than once I wanted to give up. We had had to cancel our vacation due to COVID and home-selling. Our anxiety levels seemed to increase by the day. We encountered many roadblocks along the way (starting with the shocking discovery that someone had recently stolen Andy’s identity and messed up our credit), but we navigated our way around each obstacle and never gave up. 

In the final weeks, we learned that the seller of our dream home threatened to accept a cash offer. Way too long story short: we found a buyer for our house! Just in time! We told our kids that the money was going through, and we celebrated the end of the journey: we would move into our dream house in about three weeks. We went to bed exhausted, but happy. All of our hard work and sacrifice had been worth it. 

And then we woke up the next morning to the news that overnight, the owner of the dream home sold his house to the cash-offer people. (As I see no point in going into the frustrating details here, I would just like to say that if you ever need a realtor, Chad Kime DeMasi is your man. He goes above and beyond what’s required. He did everything humanly possible to make our dream a reality.)

And so you may wonder why a picture of a loaf of bread accompanies this post. It represents all of the many silver linings we have discovered through the loss of this home. 

One of the hardest parts about thinking of moving had been leaving all of our close friends and neighbors on the South Side. (We don’t call South Davis the South Side, but I was raised part time on the South Side of Chicago, and that sticks with a person.) We love this side of town, and we knew we would miss it. The couple who live across from us felt for our dream-home heartache and appeared at our doorstep today with this freshly baked loaf of bread. (I ate several thick pieces for dinner tonight with an extra large glass of crémant — thanks Nathan Tran and Erik Reynolds!) An act of kindness like this helps quell our sad, mopey feelings and fosters our connection to others, something we all need right now. And when doesn’t fresh sourdough bread make everything better?

Losing our dream home gave us the gift of perspective. We already have a lovely home. Spending the summer attempting to sell it to some other family made us fall in love with it all over again. Fifteen years of memories live within these walls. Truman came home from the birth center not long after we moved here. Geneva held all of her slumber parties here. This is the only rooftop Jukie has ever explored after bedtime. 😬 Okay, that’s a memory that I could live without. But it did happen here. Twice.

We have not lost everything we own in a wildfire. We have our health. We have each other. And ours is a home filled with love and laughter and homemade bread, all appreciated consolations in a world of peril and uncertainty.

On Graduation Day

🎓 Imagine Geneva in a cap and gown because today was to have been our girl‘s college graduation day! The class of 2020 surely feels some heartbreak in missing their in-person ceremonies and all of the events leading up to their big moment. But we celebrate the graduates nonetheless, and all the more, recognize their growth, grit, and achievement.

Boonie graduates today with a Beloit College Bachelor’s degree in Creative Writing. She completes her college years with honors and having won the English Department’s short story award. I loved to watch her face light up whenever she talked about working as a TA for a Magazine Feature Writing class and as a tutor in the Writing Center. She’s already freelance writing, including book reviews and interviews with authors, and she plans to get her Master’s degree: Geneva wants to teach.

Geneva has already taught us lessons about perseverance, for she has faced all sorts of obstacles on her way to reaching today’s milestone. Her path wasn’t easy, so I am especially impressed with her effort. Our former Davis High Grad has become a lovely and remarkable young woman who maintains her compassionate heart and sensitive manner. It is a joy to watch her thrive.

Congratulations, Boon — We’re so proud of you and can’t wait to see what you do next! 👩🏼‍🎓

A World of Isolation

Today on #WorldAutismAwarenessDay, let us all stand together in celebration and support of every individual with autism. Let us recognize their unique gifts and seek to understand their challenges. Let us learn from their perspective and the ways they experience the world. Let us include them, always. 

I thank friends for asking about Jukie’s adjustment to our new realities living with COVID-19. People with autism typically find predictability in their routine necessary for comfort and survival. They need to know what to expect in any given situation and to be offered time to adapt to proposed changes. Jukie loves school. The sight of his school bus pulling up each weekday morning fills him with joy. Long weekends are hard on him. Spring break is hard on him. Quarantine has been especially hard on him. 

Struggling without his routine, Jukie has taken to pacing upstairs. “You must really miss school,” I say to him. He signs, “yes,” and studies me, waiting to hear when school will resume. I know that he must miss trips (what we call adventures) to the grocery store and the farmers’ market. He must wonder why we haven’t taken him to a restaurant or to a movie theater in so many weeks now. I watch him look out his bedroom window at the cul-de-sac below. He must be wondering where all of his adventures have gone, and when they might return. Jukie has multiple underlying conditions which put him at high risk for a severe reaction to this virus, so we are not taking any chances with his health. 

I feel sad for Jukie, and for all of us, but I also recognize our good fortune. We have a  grassy backyard in which Jukie may frolic and a trampoline on which Jukie may jump. We live on the greenbelt path which weaves all through the town of Davis, stretching for miles, and a puppy who needs our company on long walks — one of Jukie’s favorite activities. We take Jukie to the Arboretum where he can watch the ducks and squirrels and commune with the horses and the donkey. If he’s lucky, he may see an otter or a great blue heron. Jukie’s a nature boy, so our walks have always been part of our daily routine. 

As we all learn to navigate our new normal, we feel our anxieties rising. We’ve developed domestic routines that we must follow, and we find the dangers and the unpredictability of the outside world frightening. Perhaps our new, shared experiences offer us insight into the world of someone with autism. 

Let’s all support one another. Let’s show solidarity with individuals with autism today and every day. 💙

Day Four of the National Disaster Massive Road Trip: Unpacking Memories at HOME!

If you have never driven through the Tahoe National Forest in the northern Sierra Nevada, I encourage you to put it on your bucket list. When California greets you with her spectacular snowy mountains, you may never want to leave. Every time I cross the Nevada/California border on Interstate 80, I’m struck by the beauty of my state and my good fortune to get to live here. Today’s blue sky was punctuated with huge, white, fluffy clouds. The snow on the mountains reflected the sunshine’s bright rays. I glanced back at the kids, ready to suggest that they put down their devices and look out the window. They were already looking out their windows, ready for our long drive to be over. 

Two hours later, I pulled the ginormous van into my Davis driveway, feeling as though we were returning from another world, and entering a new time. The kids and I agreed that we had been lucky on our NDMRT for so many reasons. Every detail worked out, despite a few snafus. I’m rather amazed we pulled it off. 

The ginormous van sits at about the height of a typical monster truck, so one more jumps rather than steps down from it. This van is a beast of a vehicle that served us well, but one that I will not miss. The sheer volume of unloaded college kid belongings surprised even those of us who loaded it in Wisconsin. Was that really only four days ago?

Even though I wanted to collapse on the couch, I made a quick run to Nugget (a favorite local grocery store) to pick up milk and eggs and all the perishables Andy and Jukie had consumed during their time sheltering in place. The checkout guy asked me, “So, you been keeping busy?” 😳 He would soon wish that he had never asked that question. Before long he was nodding with a wide-eyed expression that reflected his amazement and his discomfort. I suspect that he will never cross Wyoming in a snowstorm while navigating a vehicle whose windshield and headlights iced over to near opaqueness about once every 10 minutes.

Back at home, our family of five got our second wind over dinner and took turns swapping stories about our time apart. Surrounded by my own DNA, so to speak, I was done with social distancing. Geneva, on my immediate left, gave away the three oranges that her dad peeled for her, and wolfed down her noodles and fresh rolls, while Jukie, on my immediate right, gave me all sorts of beaming smiles as he devoured his salad. He exuded joy! And Margot, she got to sleep in my lap all through the meal. 

Geneva and Andy will finish their academic spring quarters online, with classes taught or taken in between long nature walks and bike rides, some of our favorite Davis activities. Truman has been making lists of books to read (he is finishing Return of the King now), movies to watch, and cookie recipes to try out. The last play Andy saw this month (maybe this year?) was Hamlet, in which the title character says “there is nothing either good or bad, but thinking makes it so" (or so Andy keeps telling us). This national calamity is awful, surely, as are our federal response and the man in the White House who should be leading us, but in our tiny corner of Davis this spring we will exercise social distance from everyone except those in the house, the close participants in our unexpected, extended, and, one hopes, healthy staycation. It starts for real tomorrow after we return this van with seating for 12, one which has been filled with stuff and memories that we will be unpacking for a long time.

Day Three of the NDMRT: Menace in the Mountains!

I feel lucky for us to have arrived in Salt Lake City safely. The Snow Hailnado we encountered on much of our drive through snowy Wyoming mountains caused the most treacherous driving conditions I’ve ever experienced. And I’ve driven through plenty of Midwestern blizzards. Visibility was awful. Snowplows were nonexistent. And thick ice kept coating our windshield wipers, necessitating frequent stops to scrape the ice. I’m so grateful to have had my fellow driver Mary with me, and can’t imagine having tackled the day without her. 

Every day each of us discovers what our new realities look like as we navigate our new restrictions. For example, at our Salt Lake City hotel tonight, our traveling party of five was told that no more than five people can occupy the lobby at once. We had to decide who was going to stand back out in the blustery wind so that room could be made for the hotel clerk or random passers-by. 

The former buffet breakfast is now served in individual bags, which only five people can grab at one time. Our fellow guests offered us knowing smiles as we attempted to give each other wide berths in the hotel’s narrow hallways, as if it were imperative that we not share the same Utah air. I caught myself imagining each person’s story — are they all on their way home, too? Were they as freaked out about all of this as we are? I would love to have asked them these questions, but I was in a hurry to collapse into my (also narrow) double bed, and those hallways weren’t wide enough to afford us what once might have seemed an everyday chat. 

Tonight Mary and I agreed that we really could have done with a bottle of wine. Instead, we settled for Door Dash noodles and a rousing game of Taboo, which Truman had packed. Tomorrow I deliver Mary to the Salt Lake City airport for her flight home to Denver, upon which time I will drive the 663 miles back to Davis. We’re returning to the temperate springtime of California, all of whose citizens were ordered today to Shelter in Place, something unfathomable just a few days ago. I don’t think I have ever felt so eager to return home to my own private shelter, and to see my guys and Margot. 

Just as rainclouds in California become snow squalls in Wyoming, so has the epidemic become an even more deadly pandemic since Truman and I left our golden state at the beginning of this week. As a “hot spot,” the Sacramento Valley may be more “hot” to the touch than anyplace else I have visited in our cross-country trip this week, but there is still no place that I would rather call my sanctuary than back in the arms of my husband and back within at least waving distance of many of you.

Day Two: The Outstretching Space of the Midwest

Day Two of our NDMRT feels more like Day 22. Is it just me, or does time now move at lightning speed? The news breaks come so quickly; we hardly register one alert buzzing in on our phones before the next news shock shakes us again. Feeling beleaguered, I find myself reacting viscerally to each incoming bit of information. Sometimes my heart races as I read aloud from my phone to whomever is nearby. I have no control over my body now as it regularly seeks either to fight or to choose flight. 

Even in such a state, I still have control over my breathing. Deep breaths help slow my heart rate. My state of mind usually follows my heart. Worrying for all our safety, I feel that I can’t get home soon enough. 

Slowly pulling away from Beloit College this morning felt surreal and so very sad: there were no students or faculty in sight. The moods of our small moving crew were helped by our sense of accomplishment for getting all the boxes and bins and people to fit into the ginormous van. I’m not sure any of us thought we could pull it off, but somehow we did, playing a complicated game of real-life Tetris. 

After that, with a mix of personal relief and public dread, we drove 678 miles through rain, through Iowa, and through most of Nebraska to reach a deserted hotel in Gothenburg, population 3,574, home to The Sod House Museum. Looking around the hotel, and around the town, we felt socially distanced. The kids went for a swim, which seemed safe, what with all that chlorine and not another soul in sight. The water seemed to feel like such a fun and soothing way to end a long day. 

Just before turning in, I look around and see that the pizza has been eaten, the many devices are charging, and everyone is asleep but me. Tomorrow we head for the mountain states and Salt Lake City, grateful that we missed the earthquake by a day.

Day One of Four: The Ginormous Van

What an incredible day. Truman and I made it to Wisconsin! Finally in Beloit, I am so happy to have my eyes on and my arms around my girl. Now to the challenge: cramming everything Geneva and her partner own into this ginormous van, which feels too big to drive, yet seems way too small to encompass all the stuff these kids have acquired over the last four years. I just want to get us HOME — and as soon as possible. 

In this uncertain new reality, we are all getting used to the idea that we cannot now come into contact with the people we love who are physically vulnerable. Today, I could not safely visit my three Illinois parents, all in their 80s. They live in Independent Living for Seniors, so there are no visitors allowed. How strange it felt to land at O’Hare Airport, and not drive straight to my mom’s home. And how could I possibly not visit a dear friend of 30 years who has been undergoing an intense treatment regime, a friend who needs every kind of support she can get? I parked outside her house, she bundled up and stepped outside, and then we stood about 10 feet apart and air hugged each other like crazy. What a strange and wistful feeling to have to keep your distance from a beloved friend you want only to throw your arms around.

And then finally, at Beloit College, we are all feeling so sad about saying goodbye to Geneva’s college experience prematurely. I had imagined that Geneva would be wearing a cap and gown the day we moved her out of her final campus residence. During what should be the end of spring break, most of the dorm rooms and apartments now sit empty of students but full of their belongings. Now everyone must leave. The virus struck our country so quickly; of course all the students had intended to return. Nothing is normal. Nothing feels right. 

Tomorrow we attempt our most ambitious day of driving, and straight into a snow storm. As a Californian since age 24, I wonder if I even remember how to drive in the snow. My first day of Driver’s Ed took place during a Chicago blizzard, so I suppose I can handle weather. I’m so grateful for my bestie Mary who flew up from Denver to provide driving relief, moral support, and lots of laughs. 

Meanwhile, we all must flatten the curve! As more and more of us “shelter in place,” I hope your adventures this week are domestic, warm, and at least a six-foot distance from those outsiders who do not share your DNA. I’m thinking about all of you, and hoping we all stay safe and well. 

Nebraska, here we come!

A Plea on Leap Day

Today on Leap Day, the rarest day of the year, we celebrate Rare Disease Day. On this day, we seek to advocate for and to raise awareness all around the world of the more than 7,000 rare diseases which typically receive little or no notice, as most people have never heard of them. 

My son Jukie was born with Smith-Lemli-Opitz Syndrome (SLO). SLO affects between 1 in 20,000 to 1 in 60,000 individuals and is primarily seen in people with European ancestry, and rarely in Asian and African populations. People with SLO cannot metabolize cholesterol properly, which affects every system in their bodies. All have some degree of Intellectual Disability, most have ASD (autism), and researchers have found that heart, lung, and kidney defects are common among those with the syndrome. Most kids with SLO struggle with motor development, feeding issues, and behavior challenges. And saddest of all, many of our children die as SLO has a high mortality rate. 

Children with disabilities are often defined by what they cannot do. My 19 year-old son Jukie, for instance, cannot speak. He can’t drive a car or take a date to a dance. He can’t go for a walk by himself or read a book. The list of “can’ts” seems endless; even all these years into his diagnosis, this list threatens to break my heart. But there’s another long list of things that Jukie can’t do on which I choose to focus.

As he is filled with love and innocence, Jukie cannot treat others unkindly. He greets everyone he encounters with the same sweetness. Jukie is everyone’s ally. He is incapable of bigotry, intolerance, or bullying. 

Jukie is unimpressed with titles or prestige. Whether he’s meeting one of California’s U.S. Senators or Mikey Mouse at Disneyland, Jukie sees all as his equal. When we toured the White House years ago, Jukie assumed that roped off rooms were merely jungle-gym invitations to sit on antique chairs. 

Jukie doesn’t experience sibling rivalry. Competition doesn’t exist for him, so he loves his brother and sister without the typical complexities which get in the way of sibling relationships. When he hears the voice of big sister Geneva (who lives thousands of miles away at college) on the phone, he waves and blows kisses. His smile tells me how much he loves her. When his little brother Truman gently redirects him many times a day, he accepts the correction even though Jukie is five years older and fifty pounds heavier. Jukie allows his little brother to play a big brother role and offers many regular, spontaneous hugs as evidence of his love and affection.

Jukie is filled with wonder, especially out in nature. He notices the tops of trees, morning dew on blades of grass, and just the force necessary to prune a neighbor’s fruit tree. He loves two-person bike rides (for he doesn’t pedal), greenbelt walks, and unknown vistas. Tie his running shoes tight, and he is ready for an adventure! Jukie has lessons to teach many of us about opening our eyes wide and filling the spacious “now” with his presence.

While we have learned many of those lessons from Jukie, every week on Facebook and via email I meet parents of children who have been newly diagnosed with Smith-Lemli-Opitz Syndrome. I am often the first person to disclose some of the difficult realities that I know well, sharing with parents truths that I wish I didn’t have to reveal. That’s why I donate my time as Director of Communications and Family Support for the Smith-Lemli-Opitz Foundation, so that I can connect the parents of new patients with other families spread all over the world and with the most knowledgeable specialists, and so I can raise money to fund research into this rare syndrome on Rare Disease Day.

If you are able, please consider helping people like Jukie, for the Foundation supports the thousands of individuals worldwide who have someone in their family as rare, as wonderful, and as deserving of care as is our beloved Jukie.

https://www.smithlemliopitz.org/donations/

Diagonal Adventures

All year long, we look forward to the second week in February. We get to spend it in San Francisco, which I think is the just about best place to spend a few days seeing sights. As we’re a family of writers, attending the San Francisco Writers Conference has become a family affair. Andy presents poetry summits by day, and with a quick change of clothes, dazzles as host of the jazz and poetry performances. This year, Truman participated in his first conference workshop for young writers. Some of you may know that Truman has completed a draft of his first novel (titled “The Impossible Luna Jade”), so he had some context for the lessons he was learning about writing. I enjoyed watching Truman excitedly exchanging texts about his experience with his big sister, off at college. Next year, she will attend as a conference volunteer and as a recent college graduate with a degree in creative writing. 

Because we take a similar trip every Valentine’s Day week, I can use this week to assess my kids’ (and dog’s) growth, physical as well as emotional. For instance, I should be used to Truman’s deep voice by now, but I’m still startled when I hear him intonate a phrase like “Let me check my phone to see what restaurants are nearby.” And I should be used to his height, but it still surprises me when I notice that my walking buddy now looks me in the eye!

While the Writers Conference is a big draw for us, any time we spent not thinking about, talking about, or dreaming about writing, we spent exploring the City on foot. Remembering tiny Margot’s fatigue on long walks this time last year, I took along her puppy sling, imagining that she would need to be carried when her wee Frenchie legs grew tired. But never did she slow or even pause during our typically 15,000-step journeys. Evidently, our daily four-mile walks had prepared her well for a series of grand city adventures. She seemed to delight in every moment. And why not? SF is crawling with dogs, especially Frenchies, and people who love Frenchies. Margot received significant love from dozens of strangers. I think she thinks she is famous!  

As we set out each day, we had a general sense of where we were headed, but by now we know the City well enough to navigate without the use of maps, which could spoil the fun. Besides, we feel that the best discoveries are the surprises we happen upon, such as the time we looked up to see what Jukie found so interesting in the sky: it was the parrots of Telegraph Hill. While lost in Golden Gate Park, we stumbled upon Shakespeare Garden, a popular site for weddings. And have you visited The Musée Mécanique? Who knew there was a museum filled with antique working arcade games down at the wharf? 

We could walk so much and so far because Margot was full of energy, because my knees lasted longer than expected, and because Jukie used all of his best behavior, even though we know grueling marches can be hard on him. I couldn’t blame him when he repeatedly stood stock still in front of me during the long climb up to Nob Hill. I encouraged him with, “There’s a park at the top!” He shook his head “no.” “I’m not pushing you up this hill,” I said. He signed, “yes.” We compromised by pausing every so often to eat bananas. And when we finally did reach the top, we delighted in hearing the bells of Grace Cathedral, which rang for many minutes, and which prompted Jukie to stand and watch the bell towers. People out walking their dogs stopped and sat on benches to listen. I don’t know if there’s a more magical sound than its forty-four bell carillon. 

Because we were stopped so often by Margot’s new fans, on our long walks Jukie had opportunities to rest and to share affectionate hugs, gentle head bonks, and kisses with Truman and me. Sleeping in (thank you, blackout curtains) and diagonally in a double bed next to his brother, Jukie must have realized that we were on vacation. I think the whole family is ready for another hilly adventure!