Our Anniversary

Disclaimer: I’m grieving and have more feelings than I know what to do with. Writing is one way to sort through them. Not sure if they’ll make sense, but here they are.

Carla passed away on June 1, which happens to be Reilly’s and my wedding anniversary. We had plans to go out to eat. And attend a concert his brother’s band were giving at his parents’ home in Payson. Carla had other plans. As we were driving home that evening, Reilly promised next year would be better. I told him it was really nice of his mom to let us spend it sending her off.

Remembering her on our anniversary makes it fuller, deeper? more complete? Not sure what words belong here, except that it’s more. We might start a tradition of visiting her gravesite every June 1 to celebrate her. If it weren’t for her (and Reilly’s dad), circumstances would have been different, and I wouldn’t have met Reilly.

Carla was always really sweet, really friendly. Sincere, genuine. She always put others before herself. Even in her final hours I felt she was making sure we’d be ok. The best human–daughter, wife, mother, friend–she could be until her very last mortal breath. She continues to be her best self.

It’s an honor to celebrate my marriage, to share this joy Carla gave me in Reilly, by giving thanks to her every June 1.

Supporting Loved Ones

Disclaimer: I’m grieving and have more feelings than I know what to do with. Writing is one way to sort through them. Not sure if they’ll make sense, but here they are.

On February 23, 2019 we had a bit of a scare that made us realize the pending and terminal nature of Nana Carla’s (Reilly’s mother) condition. It was a Saturday. Reilly’s sister sent him a text that morning, and he drove up to an ER near Huntsman to be with his family. During the hours Carla was there, doctors were able to relieve some of the pressure and pain she was feeling, and she was able to return home later that afternoon.

This happened two days after Reilly’s accident on the freeway: a large untied object fell from the trailer of a vehicle in front of him. He swerved to avoid the object, swerved the other way, hit the side of a van, then hit the middle freeway concrete barrier. He walked away from that accident with just a few scrapes and scratches. It’s a miracle this accident wasn’t worse.

Carla’s severe abdominal swelling and pain, rushing to Salt Lake to drain the ascites and determine its source: this was a much bigger scare.

When Reilly was in Salt Lake that day, I worried about him. I worried about the family. I worried about Carla. I couldn’t make Z understand. I cried, curled up on the kitchen floor. I remember feeling helpless, wanting for things to get better and not knowing if they ever would.

I wanted to stop feeling helpless, and I wanted to support Reilly better. I wanted to be a better wife to him during this difficult time.

I felt ignorant and guilty for not having better intuition to help Reilly, but I wanted to do something. I picked up my phone and performed the following search:

Several of the articles I clicked offered similar advice. I chose to use what made the most sense to me, my nature, and our situation.

That night we were supposed to host a lecture night, and I received specific instructions not to cancel. The lecture proceeded as planned. Only the family members in the audience knew what had happened earlier. Only the family members were coming to terms with the reality and cruelty and heartache of the situation.

Over the next couple of months I texted Reilly encouraging and sympathetic words, while trying to think of more valuable help for him and his family.

On April 28 I posted this in Facebook:

This past Wednesday I walked into my boss’s office. Closed the door. Sat down, gave myself a moment since I was already crying. He placed a box of tissues in front of me. I told him that I would need to work from home more than usual over the next while. Told him the situation. Told him that we’d like to have Z spend more time with Nana.

People need and accept support just as differently as people offer it. I hope I can continue to be sensitive to what Reilly and his family and our family need.

I wish I had thought of this sooner.

Over the next month, Reilly and Z maximized their time with Nana, with midweek visits and activities, in addition to Sunday dinners. We made cookies; we sat around and talked. All we wanted was more time, and we cherished every moment.

Who would have known we’d have a month left with Nana? From April 28, it would be 34 days.

Kindergarten Planning and Placement

Z turns 5 in the next couple of months. She’s been going to preschool since she was 3. In the fall she’ll start kindergarten.

KINDER-freaking-GARTEN.

A few weeks ago Z’s preschool teacher notified us of an informational transition-to-kindergarten meeting being held on January 24. We were able to go. It was only an hour long, but the presenter, Linda Chadburn, gave a lot of information. She was clear and easy to understand–she’s been in special education for over 25 years. I could sense a lot of the other parents were also trying to process all the information she presented.

We learned about Least Restrictive Environments, where by law children are placed with other children most like them. The presenter showed us an inverted pyramid with different levels of restrictive environments:

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From Linda Chadburn’s slide presentation

That’s a lot of levels.

Reilly and I have been talking, and we have an idea of where our little Z should go.

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From Linda Chadburn’s slide presentation

Z is currently in a special autism preschool. She goes Monday through Friday, for four hours each day. We feel she would most easily transition into an autism kindergarten. We just have to meet with Z’s preschool teacher and IEP team to see what they recommend.

This makes me so nervous.

The thing about the combined general education and special education classes is that the teacher/aide-to-student ratio is much larger, which means less individual attention. Her safety is one of our biggest concerns. Everything that you can imagine being an issue IS an issue, a definite possibility. Things you otherwise would have taken for granted. We don’t take anything for granted. That’s our world, and frankly, we’re ultimately better off for it.

But, we know Z is very smart. And her speech is really coming along. And if it and her comprehension have developed enough by the time her kindergarten placement is due, maybe we’ll be able to teach her about safety rules?

We’ll approach this milestone of kindergarten the way we’ve approached everything about Z’s development: one day at a time; one moment at a time. Learning as much as we can along the way.

That little girl. Getting to be quite the big girl, now. We love her.

Tuning Out to Tune In

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There is enough noise in the world already.

From 2003 to 2009, I lived in New York City with 8 million people. Lights, traffic, construction, music, strangers everywhere. All the time.

Surprisingly it was easy to get lost and become invisible in that environment. It was easy not to be seen. It was easy to turn the noise to static and drown out my surroundings. If I wanted to be seen or heard, I could emerge from the sensory sludge, reach out to friends, go see some live music and chat up a stranger, go to church and smile at familiar faces.

The beginning of my time in NYC social media had just started getting its footing. I’d started blogging there. I jumped on the Twitter and Facebook bandwagons. In addition to the maelstrom in the streets, I felt the outside world invading my home. It would be a sea we’d all be learning to navigate.

For some reason tuning out the internet influences wasn’t as easy. They were ever present; so easy just to wake up the computer and find myself staring at the screen hours later. Sometimes I was justifiably enthralled, but other times I truly wasted time cramming my noggin with nonsense and noise. It was easy to get lost, but sometimes more difficult to emerge from that dimension to interact with actual humans for quality time. Solid connections. Real relationships.

And now, when I’m in a much slower-paced part of the world, in a pretty chill area of Utah–we live next to horses and sheep, for crying out loud–the internet manages to pound on my brain. What news? What gossip? What music? What bad information? MUST CONSUME ALL OF IT.

Except I mustn’t do anything, but moderate and be conscious of which influences enter my home. Which is especially important to the very impressionable mind under the stewardship of me and Reilly. That little girl absorbs everything. And while she can’t convey all that she consumes, it’s there, just percolating, waiting to manifest in who knows what way.

How do I do this? And how do we do this as a family? A few actions that work for us:

  • I always manage to find some time during the day for absolute quiet, where I can have time to sort my thoughts. Or just take a few deep breaths. For Z, it’s nice to not have a lot of stimuli around for a few minutes and just let her talk. Sometimes the best we can do is the car ride home from daycare. I’ll turn down the radio and ask a few basic questions, and let her think without expecting an answer. What did you do at school? Did you play with the teacher?
  • A huge one for me lately has been physical activity. Exercise clears my mind, and those endorphins make me feel great. We try to encourage physical activity with Z as much as we can. When winter limits our options, we take her to different play areas at different malls, or even fast food places. Give that girl a slide and some space to run, and she’s happy as a clam.
  • Finally, there’s bedtime. This ritual usually ends with us snuggling, watching the night light, and Z talking to herself, and me singing a few nursery rhymes. Her voice is the furthest thing from noise to my soul (except at other times of the day when it’s screaming or whining, then I want to pull all of my hair out SERIOUSLY), and sometimes I’m lucky enough to listen to her happy jabbering fade into deep, sleepy breaths.

There are things that a lot of parents also do: enable actual internet filters, set timers on screen time, help count to 10 during a meltdown/tantrum. Those are definitely helpful, and kudos to all parents doing what works for them. I do other things on my own, as well: Find time to read, limit time on the internet; limit news consumption. It’s nice to find moments to breathe, to appreciate beauty in its many forms, to be able to separate the noise from the music. These moments help me to focus even more on what’s important, to tune in to clearer frequencies.

2018 to 2019

As I type this, I take a deep breath and try to shrug off exhaustion. Reviewing the year in the middle of winter should be a rejuvenating exercise, but at this moment all I really want to do is sleep. And it’s not like I haven’t gotten enough sleep. I’m on vacation, and I’ve gotten 7-8 hours of sleep every night for the past week. I blame winter.

But I want to look back at this year. It’s been a great one. And in some ways, it has also been really hard. And weird and surreal.

And I want to look forward. And upward.

In 2019, I will continue seeking for opportunities to show kindness. I mean, I’m also going to be sassy, but kindness should drive my interactions with others. With family. With strangers and friends, until they feel like family.

In a similar vein, this upcoming year I will work on letting go of things that don’t matter that much. I used to be really bothered when people don’t text back or say they want to hang out but don’t follow through, but I need to be better at realizing that things come up, that people’s lives don’t revolve around my life. Ideally, it would be great if I could hold people to their word all the time, but I fall short at this as well.

I need to create better personal interactions. I need to get to know people and improve empathy. Regular contact with friends and checking in on their lives should help me with this.

Deeper communication. Stronger connections.

Be a better wife, mom, daughter.

As usual, I’d like to read more. (See improving empathy above.) And write a little bit more. I caught up somewhat on blogging this past year, but it would be nice be get into a routine. Monthly, maybe.

Keep working on self-care: Fitness, health, sleep. Calmness, relaxation. Self-forgiveness. Balance. Which probably means dialing down social media, which hopefully means more quality time in person, with actual people.

Keep on encouraging our little girl to continue learning. She’s growing all on her own. And too fast.

What are some of the things you’re striving to improve?

Here are some photos from the past year.

 

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Have a wonderful 2019. I look forward to more depth and meaning in life. I look forward to moments of being less tired. I hope to see more of all of you along the way.

Dumb Valentine’s Day Card: Music Video

Valentine’s Day is a colossally dumb holiday. Like a lot of “holidays,” much of Valentine’s Day’s finds meaning in how much you can spend. Supposedly we’re celebrating love and Cupid and being together. That’s nice. There’s chocolate and flowers and restaurants and jewelry. I like that singles call it “Singles Awareness Day”, and that girlfriends go out for Galentine’s. That’s fun.

This commercially dedicated day is framed in a way to appear the only day in a whole year to declare love. Or make some grand gesture of love. You don’t want to miss your chance. But it does seem to be the only day people will wait in line for hours at a decent (or even crappy) restaurant. New couples may get to see an ugly, dark side of their dates as lines stand still; seasoned couples may wonder why they didn’t stay home and cuddle in front of the television. Hello, it’s the Olympics! What’s more romantic than watching people at their peak athleticism and talking about how we’re so much cuter and stronger and, better yet, way more comfortable in our jammies? We (I) do love Johnny Weir and Tara Lipinski, who may be the best commentators of any event in the history of humankind.

But it’s only coincidence the 2018 Winter Olympics overlap with Valentine’s day. And that the Winter Games only comes around once every four years, and Dumb Valentine’s Day (yes, that’s the name of the entire proper noun) is every year.

It’s possible not to celebrate Dumb Valentine’s Day, to make that very deliberate choice, but this is also dumb. If I’m being completely honest with myself, despite this holiday being overhyped and spendy and chaotic and commercial and exclusionary, I actually quite love it. Mostly because my love loves it. Reilly really gets into giving me flowers and chocolate and a perfectly written card. And we have fun giving Z little chocolates. I enjoy this overt expression of his deep and abiding love. Throughout the year he does so many little things to support me and brighten my day. Like laundry: for me, folding clothes ranks below going to the dentist, but Reilly speeds through washing and folding loads of laundry without a single complaint. That’s pretty hot, and just thinking about it makes me wanna …

Ahem.

I don’t necessarily expect a sweeping flourish for Valentine’s Day, but I certainly relish the moments where he puts forth a greater effort beyond his daily, loving actions.

We’ve learned not to go out on Dumb Valentine’s Day itself. We might go out sometime this week, but tonight, people be crazy, so we’re staying in. Besides, I like the idea of spending a quiet evening with my family, of celebrating our love doing something non-sparkly. That’s plenty special.

I love hanging out with my family. It doesn’t even matter what we’re doing: Driving without having a place to go (sorry, environment!), watching TV, eating, sitting around. We don’t even have to be talking. It’s nice to read in the living room near (it doesn’t even have to be next to!) my honeyman, while Z plays or reads or spins around.

In true, self-contradicting, Dumb Valentine’s Day fashion, to demonstrate my love for my family, I have a somewhat grand gesture of my own. (Insert evil laugh here.)

I have been listening to Lorde’s first album–PURE HEROINE–a lot lately. Something about the second song really catches my ear, and it was on repeat for hours at a time, several days in a row. It’s a cute little song called “400 Lux,” and it’s about young love realizing it’s evolved into something deep and real. The couple in the song don’t have to be going anywhere to feel like they’re doing something together. They don’t feel unpredictable and uncertain anymore; their love is stable.

I love these roads where the houses don’t change

Where we can talk like there’s something to say

I’m glad that we stopped kissing the tar on the highway

We move in the tree streets

I’d like it if you stayed

That’s where I feel we are.

Many of my guilty pleasures are often cheesy and awkward things that sometimes cross over into being uncomfortable. I like Hallmark and Lifetime movies. I like movies about animals getting lost so they talk to each other telepathically and find their way home. I have a feeling that I would really like This Is Us. Anyway, I edited together some footage of our family hanging out with “400 Lux” as the soundtrack. Dirty windows, cracked lenses, the works. The result is a cheesy, awkward, and possibly uncomfortable video that I hope you (try to) enjoy. I love our little dog and our growing daughter and my always-super-hot husband.

My loves: I like you.

Happy Dumb Valentine’s Day.

A Quasi Rant and an Update on Z

In the past months since the last blog post, a couple of experiences have lingered in my memory. These remind me just how different human beings are, and in terms of behavior among “normal” individuals, there is also a broad spectrum to navigate. And how we respond to these people reveals more about ourselves than they.

The first experience comes secondhand. Reilly came home one day the middle of last month and recounted he and Z had taken Sia to the vet for her booster shots. They were in the waiting room, and Z was spinning in place and jabbering happily. An older woman was watching her and asking her questions, and Z wasn’t answering, because as a 3-year-old, spinning and jabbering are far more important. But Z did stop spinning, and the lady asked her a question. Z answered with more jabbering, which made the lady turn to Reilly and ask if she knows real words. She wasn’t mean about it, and Reilly explained that Z has autism and delayed speech. The lady then replied that her daughter is a special education teacher in an elementary school and asked Reilly if he knew her. Z attends pre-school in a different district, so it’s not likely that we would have run into this lady’s daughter. Nevertheless, this was a short, but cordial conversation, and I was glad to hear how accepting the lady seemed of Z’s circumstances.

The second situation happened about a month ago. I was observing a group being talked to by an important person in a certain industry. He was telling the group how essential they were to the overall vision, that he was pleased with how their colleagues in other offices were looking to adopt this group’s production model. He told the group that they were special, “not special ed, but special.” Some of the people in this group laughed. I did not. I was disappointed that a person that people respected would make a joke like this. I don’t know if I was particularly sensitive because of my new closeness to the special needs world, but I also wondered why people are still making fun of others who happen to be different.

Yeah, broad spectrum. I’m generally accepting of most decent and well-intentioned people. And sometimes I say things that may be insensitive to others’ circumstances. And yes, I do want to protect our daughter, but I know she’ll have to face the world to live her own life. And if I struggle reading people at times, I just wonder where on the autism spectrum is Z’s ability to discern emotions in other people. How much will we be able to teach her, to prepare her to handle interactions with complete cussheads?

On a sort of similar note, Z has been through two weeks so far of ABA sessions with a tutor. The interventionist (the tutor’s supervisor) says Z’s learning really fast and likes to push her with different challenges. Z now has a little toolbox of word approximations, so that when we ask her, “What do you want?” she can say, “dee” (candy), “boo-boo” (bubbles), “chih” (chips), “chee” (cheese), “kha” (drink), “koo-eeh” (cookie), “doh” (donut), “side” (outside), a maybe a few other little words. You can tell that food is a major motivator for her. She’s become a better imitator, she waves and says, “bye-bye-bye-bye-bye,” and she can say “mama” and “da-yee” when prompted.

This is so exciting and reassuring. Our little communicator. We love her.