I posted this on social media two days ago: Monday, 6/24.
Just keep swimming.
This past Saturday was three weeks since Nana’s passing; two weeks since her funeral. June 22 is Nana and Papa’s wedding anniversary. Z woke up, and she led me through her morning routine. I asked what she wanted for breakfast.
She looked at me and said, “Nemo.”
I very deliberately paused. “You want to watch Nemo? Ok, let’s go turn it on.”
We watched about 30 minutes of the movie when Reilly got home from the gym. After pausing the movie, we went upstairs and started eating the donuts he brought. Then Z headed back downstairs to finish watching. I followed her.
While the movie was playing I had my laptop open, writing and reviewing some personal thoughts. Then I heard Dory sing, “Keep swimming, just keep swimming.”
I stopped typing. This was the motto Nana had applied to her own struggles and afflictions the past couple of years. No matter the procedure, the pain, the fatigue, nausea, heartache: she pushed on. With a smile, even.
As Dory sang, I cried. As Marlin guided her through the swarm of Portuguese Man-o’-Wars stinging her, and Dory fought to stay conscious, she sang: Keep swimming.
After Finding Nemo, Z asked to watch Finding Dory. Young Dory sang “Keep swimming” when a current swept her away from her parents. She sang it throughout her search for her parents. That was how she survived. And succeeded.
I cried again.
It had been a while since Z watched either of these movies, and Reilly suggested she was feeling nostalgic. I agreed, but not just for the movies, but for Nana. I know she misses her.
Z knew what the day was. It wasn’t a coincidence she wanted to watch those movies.
Then while we were in Payson yesterday for dinner, Cousin Jessica made and brought these dogtags for all of us. A reminder of Carla; a talisman for how to live our own lives.
We’re gonna just keep swimming, Nana. We love you.
This was two weeks ago. I don’t know how that happened, where the time went. Not that it passed particularly quickly or slowly, but that it . . . moved.
The service at the church was beautiful. Poignant music. Heartfelt words. A lot of tears. Some laughs. Many hugs. There are a million stories that could come from that hour and a half at the church. And a million more that could come from the hour-long viewing beforehand.
Graveside. Sunny, mid-60s.
Z could not have been been better behaved. She understood the day.
Carla would have loved these flowers. A coworker relayed that Carla actually chose her spray. Her colleagues were more than eager and happy to oblige her. For this day. This one wish. Something in the way her coworkers regard her is particularly touching to me. They were also her friends, but there was something about their relationship that somehow resounds with me.
Two weeks sometimes feels like a million years ago. Sometimes it feels like yesterday. These perceived lapses occupy the same space. Or maybe they’re layered on top of each other. Or interwoven. I don’t understand it. Maybe a part of me wants to believe that understanding it will help me feel better. But what I should understand is that I’ll feel better with time. Whether that time is in slow-motion or warp speed.
And “feeling better” isn’t a singular event. I’ve felt pretty darn ok in certain moments. Laughed, even. I’ll take what I can get.
I’ll give what I can, too.
Today is Blake and Carla’s 41st wedding anniversary.
This isn’t an easy month right now.
We’re all going to watch Reilly’s brother play in the Utah Symphony as they accompany a screening of Harry Potter and Goblet of Fire.
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.
We all went out to dinner to celebrate Mother’s Day at Ruby River Steakhouse in Provo. We were supposed to have gone to Ruth’s Chris Steakhouse up in Park City on May 12 for the official Mother’s Day, but snow was (not) strangely in the forecast. Geez, Utah.
The whole lot of us. Eleven of us. We talked and ate. I sat at the opposite end of the table from Nana Carla. I looked over at her every once in a while, and I would see her sometimes lost in thought. Or nibbling at her food. Or talking to another family member. Or taking photos with her phone. More often than not I saw her smiling.
A deep, underlying sadness lay just below the surface of … me? My soul? The dinner? Did everyone know or sense this would be our last Mother’s Day celebration with Nana Carla’s actual, physical presence? I know we smiled for her, too.
On the morning of Monday, May 20, Carla sent five photos from the last night’s dinner to my phone. (Three not pictured here.) I replied.
Last Monday you turned 5 years old. I’m still trying to wrap my head around this little fact that you truly are a big girl. I look back often at your pictures from your first year, and that Dadda and I have been trusted with your life still overwhelms me in the best possible way.
Look at that smile! Those peeking teeth. You looking ever so thoughtful just after you were born. Standing! You were an expert walker before you turned a year old, and now you strut around like you know where you’re going all the time. Like you own the place. This was the most sleepless year of my life, but thankfully you took to sleep training pretty quickly, and we’re just now feeling we’ve caught up.
You continued learning and growing your second year of life. You were fearless. You had an uncanny awareness of everything in your space. Your energy never seemed to run out, and we were learning that you needed some solid time with your favorite playgrounds and toys and books and splash pads to get you tired enough for the rest you needed.
It’s true that most photos I included in these collages you look pretty dang happy, but it’s important to point out that you cried and were frustrated a lot, too. We shared these emotional states, because we’re trying so hard to learn each other’s language. For the most part we were able to figure out that most of your needs were pretty simple. As long as you were fed and dry and got sleep and enough play, you stayed pretty happy.
I love how much you love to play. I love how much you love to explore, even if it means that we’re constantly chasing after you and telling you what is and isn’t safe. Is this not a major part of childhood?
In your third year, we pursued our suspicions about some developmental delays you were showing. We took you for an autism screening at the University of Utah, and they gave you an official diagnosis. Which, honestly, was the best news, because that meant that we could take full advantage of resources to help you communicate and develop in other ways.
You started ABA therapy the July after you turned 3 years old, and it has made such a difference. And you have been attending an autism preschool, where they reinforce a lot of the skills you’re learning in therapy. AND Dadda and I try to keep up with your programs and encourage all the little ways you’re learning to do so many things. These skills will continue to open the world to you, and you will get to explore all the opportunities available that accentuate your strengths and give your life meaning. This is so very exciting and completely terrifying.
What’s so crazy about these years of growth is so much happens with you physically and mentally and emotionally. As you learn and grow, you’re showing signs of you really knowing who you are. You have a very Z personality; you have definite preferences; a way of speaking; a way of showing affection and manipulating people in your cute way to get what you want. Guess what? We’ve been there, kid. We know those ways, and honestly, some of us have never grown out of those ways.
We have two dogs, but the chiweenie, Sia, and you are true buds. She is your first dog, and you two have a special trust that I can’t quite describe. That makes me smile.
Two weeks ago we went to Florida, and you got to go to Disney World. I dare say you were the most well-behaved big girl in all of the Magic Kingdom on the first day, and at Hollywood Studios the second day. You also got to go to the beach for a little bit, and you also loved every single moment of that experience. The way your senses process your world intrigue me. Just what does the water on your skin and the sand between your toes make you feel?
This past Friday I attended an autism conference at Utah Valley University. The keynote speaker stated as a general rule, the age of autistic people is about 2/3 the age of neurotypical people. In your life, this rings true that you’re about where most 3 1/2 year olds are in terms of speech and social skills. At your yearly wellness check up last Tuesday, you’re in the 60th percentile of kids your height and the 70th percentile of kids your weight. You’re gonna be taller than both your parents in a few years, but that’s where comparisons end. You’ve begun a path to your own life, and you’ll get to a point where you’ll make some pretty important choices that will shape your life the way you want. It won’t matter how other people your age are doing compared to you. Actually, age doesn’t matter at all. Live your life. You do you.
One of the biggest blessings we have from your supposed delays is that we get to cherish these extended development stages. We get to enjoy your childhood for longer: that curiosity, the amazement at the world; the hugs, the smiles, the wonder. Maybe these will continue on to your adult years, but we’re going to breathe it all in right now, in this very moment. We are present for this, this glorious moment of your turning and being 5 years old.
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.
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.
I posted this on social media 10/28/2018. It’s long enough to document here.
We went to a Halloween concert yesterday and as we got out of the car, a lady shouted, “Chucky!” As we entered the building, we got a few “Nice costumes, guys!” from people we passed. And Reilly said I made a toddler dressed as Black Panther cry.
Also, posting our costumes on a Sunday to get us wondering why anyone should live with near-paralyzing fear of getting murdered on their holy days. Or any day for that matter. That is where my heart is right now.
These characters from horror movies evoke the thrill of a good scare that we can turn off, recover from, and then carry on with our lives. Other real-life monsters, like those just from this past week, aren’t as easy to escape. But we can’t let them conquer us with fear. We can’t let their hate overpower us or ambush us through the mail, at the grocery store, or where we find spiritual strength or a sense of community.
We love these costumes, and we are so excited about showing them off. But costumes are all they are. And you know our hearts aren’t filled with revenge like Chucky’s, or incapable of distinguishing between affection and violence as Frankenstein’s monster’s, or deeply primally evil like Black Phillip’s.
We are here for you. On your holy days, and every day.
This post was written 10 April 2018, but I’m backdating it to Z’s birthday, 8 April.
Almost three months ago, you and I got sick with fevers, headaches, and congestion. You and I went to the doctor to see if we had the flu. The doctor sent us somewhere else to get a nasal swab to determine the flu. I’m not sure why he or any of the nurses in the office couldn’t swab us. I still might be a little bitter about it.
The doctor’s office wasn’t entirely clear on where we were supposed to get the swabs: do we get them at the hospital, or at one of the affiliated clinics near the hospital? I should have asked for clarification; part of our long day was that I should have gotten better directions.
We stopped by the hospital first. When we were checking in, the intake lady heard you coughing, handed me a mask, and instructed me to put it on your face. This wasn’t going to happen. I knew you weren’t going to keep the mask on. You sat on the floor, keeping mostly quiet, being very good for a sick 3-year-old.
The intake lady heard you cough again, and she reminded me to put the mask on your face. I didn’t do it, because that was a battle I chose not to fight: I’d rather you quiet than struggle to keep a mask on your face. She double checked our insurance and told us a flu swab wasn’t covered. I was irritated. My head was throbbing. I remember half-heartedly asking about the insurance, and the intake lady answered something. I took your hand and quietly walked away.
We eventually found the place where someone would be able to give us the flu test. We ended up both negative. That was a relief, but we’d spent a lot of the day driving around, feeling like absolute junk. I’m so sorry for dragging you all over Orem and Provo that day.
We both tested negative that grey January day, but I can’t stop thinking about my lingering negative attitude about that experience, especially at the hospital. What I wanted was not to have to explain why you wouldn’t wear the mask. What I resented was the assumption that you would wear a mask at all. Maybe the intake lady trusted that moms know the best approach for putting a mask on their children, since no “normal” sick child would cooperate wearing a mask. I didn’t know how to say I was clueless. What I wanted was an acknowledgement–at least from this healthcare institution, in a state that has a higher population of autistic children–or some sort of effort to accommodate, a simple “if your child has sensory issues, then [here’s an alternative].” That can’t be too much to expect at a hospital that probably sees hundreds of children every day.
But guess what? I figured it out. When we were at another waiting room, the receptionist asked me to take masks for both me and you. You started coughing, and I held a mask up to your mouth. Every time you coughed, I covered your mouth with the mask, and you were actually ok with it. I was so grateful for this!
Dadda and I have been your parents for four years now, and we’re still figuring it out. I’m still learning patience, but I’ve appreciated the process of learning to see the world through your eyes. I love how you’re never in a rush. How you give in to adult-perceived distractions, when you’re just enjoying your surroundings. How you run your hands over all surfaces. How sometimes you exercise your curiosity by sticking your tongue on things (which often grosses me out). How you run and laugh and sing–and spin, of course. How you verbalize your feelings even though you don’t have as many words as you’d like.
You’re working on getting more words, though. More skills, more coordination. More understanding. A greater attention span and focus. You’ve developed a liking for coloring and puzzles. You can sit with these activities for at least an hour sometimes. Your teachers have been so impressed with you over the past year. When you began preschool, you weren’t able to sit still, and you had no words. Now look what you can do!
We’ve taught you to repeat simple phrases like, “I’m cool” and “I’m smart”; Lola has taught you, “I’m beautiful,” and on your birthday you’ve been able to repeat, “I’m four.” Four. We can’t believe it.
You are adorable, and everyone loves you. Friends and family, definitely. It’s a little weird when strangers smile at you while we’re out or traveling, but most of the time you’re oblivious and could give zero cares. I need to find a way to live more like you.
It can be so hard being a kid sometimes. So many rules, so many boundaries. It’s been hard for me to reconcile your supposed limitations with your potential. Just thinking of your immense potential makes my heart full. But to you, you don’t have any limitations, other than your parents’ occasional inability to understand what you want or need. Such understanding often requires words. Which you are acquiring more of every single day. Your language–both jabbering and intelligible words–has expanded our minds and blessed our hearts in so many ways, made us better parents. We’re learning as we go. Just like you, we’re figuring it out. We try our hardest to open up the world to you. No limits, baby girl. No more assumptions.
We have you as our daughter, and you have brought us more than we could ever imagine. More love. More happiness. More life.
When our family got home from church last Sunday, Lola and Papi were already waiting inside. The first thing Z did when she saw Lola was take her hand and lead her downstairs to play.
They have been inseparable for the past nine days. I’ve heard them talking to each other every day: Mom’s gentle voice and Z’s cute jabbering or imitating. These are happy sounds.
There’s this game where Z waits at the top of her slide while Lola counts to five, and then says, “Go!” And then Z goes down the slide.
There have been multiple viewings of Trolls and Moana and Brave and Shrek, but mostly Trolls. That’s what Z has been into lately.
The entire time we walked around Temple Square to see the lights, Z—in a stroller—looked behind her to make sure Lola was close by.
Lola has experienced telling Z to stop climbing the kitchen cabinets to get a sucker. She and Papi have taken part of our tradition of Saturday donuts.
If you believe in love languages, one of them is acts of service. My mom speaks this language loud and clear. In addition to being Z’s best friend, Mom has cleaned our house, done many loads of laundry, and cooked various meals for us. She’s done many things that have allowed us to relax. Papi has supported her in this visit and has told good stories and perfectly dry jokes. He is a wonderful man.
On Christmas, we had a fun day of opening presents and going out to breakfast and then spending dinner with Reilly’s family in Payson. Having everyone together heightened our spirits and the love we feel for each other.
A few quotes from the past week:
“You need to wax your moustache.” Mom to me, after looking at my upper lip.
“Ok, Papi, all glued.” Mom to Papi, after putting gel in and styling Papi’s hair.
“Do you sell pancakes here? Just checking.” Papi to the IHOP host, while getting seated for a Christmas breakfast.
“There you go!” Something Z picked up from Lola, when Z said something correctly. Z says this quite often now.
Right now, Lola is lying with Z until she falls asleep. They are talking and singing together.
Lola and Papi are driving back to Florida in the morning. They plan on sneaking out while Z is still asleep.
There will still be crying, though.
It is the morning, and Lola and Papi have left. Reilly and I woke up to send them off. During Mom’s tear-ridden, heart-bursting prayer, we heard Z talking to herself in bed. We said our goodbyes and hugged each other. Lola and Papi got into their car, and then they drove away.
We got Z out of bed and gave her some breakfast. We’re watching Shrek now, and Z has said “Ya-ya!” several times, asking for Lola, and I’ve had to explain that Lola went bye-bye.
The house is much quieter now, and I’m still a little teary-eyed. Thanks to Papi and Lola for visiting and giving us memories to reflect upon, their voices echoing in our minds, when the silence is too much to bear.
In the middle of last month you had picture day at preschool. I preordered the package online, not knowing how they’d turn out. All I wanted was to preserve the memory of your very first picture day.
On your very first picture day, your teacher sent home a note. You usually get a daily note of your general behavior – this comes as a golden rod laminated form that your teacher fills out: What you ate, what you played with, any tantrums, or moments in the calm-down corner. But the note your teacher sent home on your first picture day was a pink note. The pink notes are achievement notes, and this is the one from your first picture day:
This made me excited to see your pictures! I asked Dadda when he thought your pictures would be ready, and he said they usually take two weeks.
The next two weeks the suspense was unbearable. I kept busy and tried thinking about other things to pass the time. But it occurred to me that it was possible your teacher sent home notes like that for all your classmates, and doubt crept into my mind. What if your smile wasn’t really a smile, but a weird smirk? What if it was one of those forced smiles with your eyes squinty or tightly shut? What if you got all muddy or grimy from snack time? I’ve seen bad school pictures. Many of my school pictures were horrible. I definitely lowered my expectations of how your first school pictures turned out.
But the day came when I picked you up from daycare and one of the workers said your school pictures were on the top shelf of your cubby hole, and that they were sooo cute. And we saw another daycare worker who commented likewise about your school pictures. And so you and I went to your cubby hole and I glanced at the photo through the window of the big envelope, and I just about fell to my knees and cried from the cuteness. this is what I saw:
Everyone loves your school pictures! I love them. Dadda loves them. I’ve shown them to you and asked who the girl in the pictures is, and you’ve answered with your name in that sweet little voice of yours. It’s nice to know that your teacher just wasn’t being nice when she sent home that pink note. She was being sincere, and I’m so glad we have this memory!
Yesterday Dadda and I had parent-teacher conference with your teacher. We talked for a good while about the progress you’re making, and she remarked how much energy you have! She’s impressed with you, and I hope you continue to let your teacher challenge you, and that you’ll eventually learn to harness that energy. We know you’re 3, we know you’re a sensory-seeker, so we definitely understand the spinning and running and climbing everywhere.
While we were at your school, we also got to talk with your speech pathologist, who had the chance of talking with your ABA therapist. It sounds like they will be able to coordinate their efforts and methods to bring about the best results for your speech development. How fortunate that we have these resources. We feel so blessed.
And today: Your teacher sent home another pink note!
We are super proud of you. We love that you’re learning and expressing yourself. We love that communication is starting to click for you. We’re doing our best to help you, and your sweet spirit and desire to learn keep us from feeling too overwhelmed. We are here for you, and we will support you always.
Look at that photo. She looks so depressingly grown up. She does look pretty confident, though, which I love. Like she’s saying, don’t mess with me, mofos. I’ve been so nervous about today, Z’s first day of preschool. She had no idea what was going on. Reilly and I told her that she was going to a new school, and that she would ride a bus, and that she would have fun teachers. I made her try on her backpack several times yesterday so that it would be familiar to her and she would think it’s hers. Both Reilly and I like this backpack, but I don’t think Z cares very much right now.
The day dragged on, and Z getting up at 6:30 didn’t help. We had breakfast and played and watched a few music videos. We hung out and cuddled and sang songs together. I reminded our little girl that she was going to school today, but I doubt she understood. She probably understands now that she’s there.
It’s so weird thinking of our 3-year-old riding a bus. I mean, that’s what big kids do. Yesterday I emailed her teacher asking if an adult would sit with her on the bus to school. I totally stressed out about it. I know that if someone’s not sitting beside her, she would want to get up and wander around. But the teacher reassured me an aide would help Z with the whole bus experience. The teacher also said that everyone would make Z’s transition to the school as smooth as possible.
That helped me feel a little better, but just a little.
Grandma sent a text saying to give her a big hug and tell her she’s going to do fantastic. And that’s what I did.
Though the day seemed to drag, the time for the bus to arrive sneaked up on us. I helped Z put on her shoes, and we walked out to the curb. I sat on the ground and pulled her to me so she could sit on my lap. I held her tight.
The bus pulled up to the curb. The door opened, and the aide stepped off. She said hello to Z and handed me a form to complete and explained some stuff. She helped Z onto the bus and guided her to a seat on the same side as our house. I took a picture of the bus, and the aide helped Z wave at me as the bus pulled away. I smiled and waved back.
I went back into the house and cried. I’m still sort of crying.