May 19, 2019

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.

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Ours, too, Nana.

We miss you so much.

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.

Five Zinger Years

Dear Z,

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.

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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.

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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?

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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.

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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.

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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.

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We love you, big girl.

Love,

Mom

 

Parent-Teacher Conference and Kevin

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Last night we met with Z’s preschool teacher. The first thing she asked when she saw us was, “Who’s Kevin?”

Well, Kevin could be a couple of things:

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or

kevinmin

Z’s teacher said that Z often says, “Come on, Kevin” during class. Which sounds totally not out of the ordinary to us. We know who Kevin is (or could be), why doesn’t everyone?

We then talked about Z’s placement for kindergarten. The teacher said that she, the speech pathologist, and occupational therapist agree that Z is on the cusp of going either to a special class or an autism kindergarten class.

We forgot to ask what the difference is.

But her teacher said that Z catches onto academic stuff like reading and colors and shapes and math really quickly. In other areas Z is working on a few skills, and she still has social delays. She’s fine working or playing alongside a teacher or aide, but when another child/peer joins the group, Z leaves.

Y’all, sometimes I’m like that. But I don’t want to be the reason Z can’t interact with people. So we asked what we could do to improve her social skills. And we decided to try scheduling regular playdates with kids her age, just like we tried last year.

Sometimes I ask myself, “What’s kindergarten?” I don’t see a totally regular class full of typical kids–what I and Reilly grew up with. That’s not the normal around here. What I do see is the possibility of the bird from Up or one of the Minions. Both are equally great: Fun, goofy, smart (maybe not so much the Minion); generally happy and unassumingly generous with cheer. That’s our normal. I’m grateful to have accepted and live it every day.

That’s our girl.

 

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.

Making Friends 2.0

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Photo by Gaby Germaine

This photo was taken at a New Year’s Eve party to ring in 2009 in NYC. TEN years ago. Geez, Louise.

I’m actually not an incredibly social creature. Parties are fun, and I bring my own energy when I can. Usually I make the rounds to chat with individuals or small groups, instead of busting all the moves in the middle of the dance circle. But I do like to dance, and I’ll dance if the music calls, but after the chatting and dancing, I gotta get home and decompress.

I made some really good friends in NYC. And I liked spending time with them outside of the LDS social scene, which wasn’t really my thing. I mean, this is partly why I defected from a singles ward to a family ward. People met people and dated people and broke up with people and started over again. That nonsense didn’t appeal to me. I did like going on dates. I liked talking with individuals and a few people at a time, but yowza, it could still be a lot. Because people are different. And sometimes I needed a head’s up to prepare for certain personalities. Maybe you know what I mean.

When I returned to BYU in 2010, all I wanted was to keep my head down, finish my work, and finally graduate. Which I did, for the most part. But a weird, funky thing happened, called Making Friends. And I loved spending time with my new friends when I could. We went to concerts and readings and film screenings. I went to Senegal for five weeks with some of them. And we still hang out, long after graduation.

But we all have our own lives now, doing our own thing with jobs and relationships and whatever our goals are. And we try to get together when there’s an overlapping break in our lives. Most of the time that results in doing something at our house, which I don’t mind. The fewer places I have to drive, the better.

Man, I sound like a grumpy hermit. I promise I’m a real sweetheart, though. Promise.

For a while in my 30s it seemed that I’d reached my limit on good friends, and I would shrug off any opportunities to establish new meaningful relationships. But then it occurred to me that I was depriving myself of new perspectives and influences and chances to grow, and that maybe I was depriving someone else of a friendship with me.

That sounds conceited.

But I like making friends, and I do try hard to be a good friend. And being a good friend is something our daughter needs to see as much of as possible. We don’t have to be especially social or outgoing to be a friend. I have to work at making friends. Maybe it will come more naturally to Z. I’ve been a jerk to a lot of people in the past, and I’ve been trying to make up for that. I’ve met some really cool new people in the past few years, and it’s been fun getting to know them. They’ve become special to me.

All the socializing we’ve done throughout the holidays has made me grateful to be surrounded by people who accept me as I am. New and old friends alike. They don’t force me to talk if I don’t feel like talking. They let me listen and observe and learn. They let me hang out inside my own head until I’m ready to interact more fully. They get my sarcasm that often borders on biting wit. They are patient. They love me without judgment. They encourage me to become better.

I’m working on doing the same for them.