A Journey and a Process

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There were concerns.

There was knowing without any professional confirmation. We knew, though.

There were doctor’s appointments.

There were assessments.

There was Early Intervention through Kids on the Move.

There was a scheduling for a screening. The earliest possible date was in July.

There were more assessments.

There was an IEP with a panel of special education preschool teachers.

There was special preschool.

There is progress.

There was a cancellation from someone else, which meant an opening for an earlier screening at the University of Utah.

There was a psychiatrist. And play. And observation.

There is a diagnosis: Autism Spectrum Disorder.

Now we are here.

And now there’s more.

Unknown territory for us, but we’re damn good parents that will give the absolute best to our daughter that we can.

Thank you all for your continued love and support and patience for our little girl.

There you are.

 

’80s Basement Lecture Series, 18 Feb 2017: Satire

About a month ago I was feeling nostalgic about NYC, as I sometimes do, and I remembered that my friend Brook started a lecture series there where she would invite various experts to talk about their specialties. It all started in her living room with a small group then grew into an impressive crowd. She called it the Living Room Lecture Series.

This memory sparked in me a desire to copy her. I texted some friends to see what they thought:

Hey, friends! I’m thinking of starting a quarterly lecture series at my house. Maybe 20-minute talks, followed by discussion and treats. The lectures would come from us and cover a variety of topics. Reilly could talk about Family Guy, Maddie could discuss writing copy or songs, Kylie poetry or Ndichie, Jon film, etc. You don’t have to lecture if you don’t want to. Does this sound fun? Would you support this?

The replies:

  • OH MY HELL. I would ADORE THIS.
  • I strongly support this message.
  • YES!
  • If kids are welcome I’m totally interested. We used to do something similar in DC and I love that kind of thing! Also I’m also interested without the kid. Both ways, totally interested.

So we set a date and time, which was February 18 at 7:30pm. I thought about holding these meetings in our basement, which has wood paneling and strange patchy brown carpet from the ’80s. I decided to call this thing the ’80s Basement Lecture Series. Genius, I know.

This past Saturday the guests arrived, and we gave them a tour of our home. Then we ate some pizza and got really drunk. JUST KIDDING THERE WAS NO PIZZA. Just kidding, we had a lot of pizza and zero alcohol.

We headed down to the basement. I introduced Reilly, and he gave a terrific lecture about satire and its evolution on television over the past 30 years. He defined indirect and direct satire, using Jon Stewart and Stephen Colbert as examples. He hinted a quick comparison of Tomi Lahren and Samantha Bee. He showed clips from the Simpsons and Parks and Recreation. We had a fascinating discussion about the current political climate and people who don’t get satire. And we discussed the purpose of satire: in what ways does it motivate us to act/speak/think? It was a lot of fun.

I looked at the group of us and wondered: Are THESE the people I like hanging out with, slightly strayed, slightly jack-Mormon AND incredibly faithful, moderate-to-left-leaning, super smart, extremely big-hearted; socially conscious, ever eager agents of change to make the world a better place?

Yes, YES.  A frillion times yes.

The conversation, their presence, their intelligence and spirit: I basked in it all.

I’m not gonna lie. It’s great bringing people together to share ideas and foster and strengthen friendships. But I may have started this lecture series just for me. Selfish little me.

Can’t wait for the next meeting.

“Who’s your friend that likes to play?”

There is a scene in the Disney Pixar movie Inside Out where Bing Bong is sad because his space rocket has been thrown away. Joy needs to get to headquarters and tries to cheer him up by being happy and silly, but Bing Bong keeps being sad and won’t tell her how to get to the Train of Thought. Then Sadness walks up to Bing Bong and tells him she’s sorry that his rocket his gone, that it must have meant a lot to him. She gives him a hug, he cries on her shoulder, and he opens up to her. Joy tries to interrupt to say there’s not time for that, but once Bing Bong has someone to sympathize with him, he says he feels better and points to where they can catch the Train of Thought. On their way, Joy asks Sadness, “Hey, how’d you do that?” Sadness starts, “Well, I just -” and then the train arrives.

We know how she did it.

Sometimes all I want is to talk about my problems. My feelings. It helps me feel better to have someone listen and not want to jump in with solutions. Just to be there, to reassure me, to be supportive or say something like, “I’m sorry that happened.” Or “I know how that feels.” Or “What a sucky situation.”

I know what the solutions are. It’s not like I haven’t done the research, and the new information often can overwhelm me with yet more things I can do wrong or have failed at. More often than not I have applied this new information and am still frustrated. There are situations where I feel utterly helpless; there are times when I need to feel the uniqueness of an experience in my life before understanding that others have traveled a similar journey. This is when I can best feel the support of humanity, once I peek out of my self-involved bubble and am reminded that I am not alone.

It might just be certain personalities to offer fixes right away. And it’s definitely my accommodating personality to accept these people while still feeling horrible inside. Yes, thank you for trying to help, but that’s not what I need. Yes, I will feel better soon, but I first need to be allowed to feel sad/helpless/frustrated/embarrassed. That’s a part of my process, and it helps me in the long run if I don’t dismiss it or diminish it in any way.

Of course I try not to be melodramatic or overreact, and I’m resilient.

A not-so-heavy example: Yes, I’ve been complaining the past seven weeks about my cold. But should one suffer with a cold for that long? Should I rearrange my life around coughing, since it has wedged itself into my schedule? Should I just say “Oh, well” when my ribs are bruised from coughing so violently and for so long? No. But these things have happened to me, and I plan to get through them and to rise up stronger and more determined than before.

But for now, my body still needs to expel phlegm. But when I do this, or laugh, or take deep breaths, it hurts my ribs on the left side.

What’s my process? First, whine about it. Check: I’ve told several people, who range in sympathy, from: “Have you been checked for pneumonia?” to “Oh, man, I’m sorry. That sucks.”

Next, process this feedback. I’m glad that I could tell people who were willing to listen. I’m grateful for those who stepped back and truly sympathized/empathized. And I’m learning to be grateful for the form of concern people offer as suggestions or solutions. People mean well. And people have different points of reference.

Next, question myself: Wait, what am I doing trying to understand the people I want to understand me? Why does this feel like a bigger effort from me all of a sudden?

Next, return to feeling grateful: People love me, and they care.

Next, keep on keeping on: I’m going to make sure I get plenty of sleep and food and exercise. I’m going to work hard at work and be a good mom and wife and friend, one day at a time. Hopefully enough days pass to heal my ribs and make my cough go away.

Any time along the way, this process could repeat itself any number of times.

I’m well aware others are in far worse situations. The not-so-heavy example of my bruised ribs partly serves to imply that much heavier issues are going on in my life. I’ve talked to some people about those issues, implemented these very steps of handling my emotions and becoming stronger and moving forward with my life. The sadness, helplessness, and frustration would be a much greater burden without this process.

It’s a blessing to share these clunkier and unpleasant parts of my life with the people who mean the most to me. Thank you for being there.

 

30 Months

Dear Z,

Can I have a few minutes?

Something sad happened today. The youngest child of two of my high school friends passed away. They posted a photo of their daughter on Facebook. The little one was in a wheelchair, smiling. Sending her off with a farewell full of both sorrow and joy.

I never met this impressive little girl, but I know my friends. Over the years they shared photos and let us get to know of their daughter’s fighting spirit and cheerful personality. I stared at the one photo today and wept. I commented with condolences, trying to be strong for these friends who have to be so heartbroken right now.

Before today’s photo, my friends posted photos of their other children posing with their sister. There was so much love, and I was hoping and praying so hard for her to pull through. It was not meant to be. I am grateful to have seen these precious last moments of her life, so full of joy and compassion and love. Her family surrounding her, cherishing their time left with her in mortality.

At this moment I’m thinking of bedtime. You know the routine: go potty, change into an overnight diaper, brush teeth, say prayers. Dadda gives you a big kiss goodnight, and I lie with you for a few minutes as you wind down for sleep.

Usually you take my hand and lead me to your toddler bed. I lie down, and you lie beside me. The soft purple and pink beams of your night light roll in a small circle on the ceiling, and Arvo Pärt’s “Spiegel im Spiegel” plays softly in the background.

We talk for a little bit. I ask about your day; I describe mine. Sometimes one of your legs rests on top of me; sometimes we hold hands.

This is my favorite part of the day.

When I try to get up, you grab my hand or hold my head down to make sure I stay with you.

A few more minutes.

A lot of people consider turning 30 years old a major milestone in their lives. This week you turned 30 months.

You’re getting taller.

More observant.

More opinionated.

You tolerate a crowd of children, but most of the time you’d rather play alone. You’ve shown this numerous times at daycare and in the church nursery.

We won’t force you to make friends. You might be a lot like me in this regard. I either reach out, or I don’t. I either reciprocate friendly gestures, or I don’t.

I hope that you become better than I am. For that to happen, I need to be better than I am.

I told you about these friends tonight, as we lay in your little bed, trying to sleep.  I was blinking back tears in the darkness. I told you my friends were sad, that you would have loved their daughter. I squeezed you a little tighter, a little longer, hoping the embrace somehow would reach my friends.

Thirty months.

As we snuggle every night, I think about this, how the time passes. I dread the moment when you’ll no longer want me lying beside you, talking about our day. You’ll hurry me out of your room instead of getting me to stay. I will yearn to find warmth and comfort in the pride I have for our wonderful daughter. Wonderful you.

This abstractness worries me. I equate it with a void of a little body beside me in a little bed. The absence of gazing through the dark at each other, eyes connecting the way only a parent and child’s can connect.

Until that moment, I will lie next to you. I will enjoy the space you occupy, the warmth you emanate, for as long as you let me.

Even if it’s just for a few more minutes.

Love, Mom

Hindsight is 2015

Whenever I think about resolutions, there are the standard goals of exercising more and eating better, reading more books and eating out less, waking up earlier and writing more, but my greatest desires for improvement always lie in relationships.

Back in August, Reilly and I gave talks at church about the complementarity of gender roles. We had moved to a new area of town at the beginning of June, and this was a way for us to bear our testimonies and for our fellow ward members to get to know us better.

(This reminds me that we forgot to tell people we’d moved, so we’ve received a lot of Christmas cards this week with yellow stickers reminding us to tell people our new address. Sorry, guys. If you still need our address, let me know.)

When the day came to give our talks, we’d already been in the ward two months, and that gave me a chance to observe the members and relate my thoughts on gender roles to our ward, which consists of a large number of nontraditional family situations. We were specifically instructed only to use the scriptures and General Conference talks in our remarks. This makes sense because I’ve heard people say some truly outrageous things from the pulpit. I referred to this talk by Sister Chieko N. Okazaki and emphasized this quote:

Here are two quilts. Both are handmade, beautiful, and delightful to snuggle down in or wrap around a grandchild. Now look at this quilt. It’s a Hawaiian quilt with a strong, predictable pattern. We can look at half of the quilt and predict what the other half looks like. Sometimes our lives seem patterned, predictable in happy ways, in order.

Now look at this second quilt. This style is called a crazy quilt. Some pieces are the same color, but no two pieces are the same size. They’re odd shapes. They come together at odd angles. This is an unpredictable quilt. Sometimes our lives are unpredictable, unpatterned, not neat or well-ordered.

Well, there’s not one right way to be a quilt as long as the pieces are stitched together firmly. Both of these quilts will keep us warm and cozy. Both are beautiful and made with love. There’s not just one right way to be a Mormon woman, either, as long as we are firmly grounded in faith in the Savior, make and keep covenants, live the commandments, and work together in charity.

The ideas in this analogy include and not exclude, and I want to apply them not only to my family but to every interaction I will face.

I described ways in which Reilly and I are compatible. We love books, music, good television and movies. We’re both short. But is compatibility the same as complementarity? Being a complement takes effort, it requires work to observe and a desire to understand; deep and meaningful relationships go beyond what we have in common. Commonalities are a good place to start, though.

At the beginning of November, we attended a friend’s wedding reception. We didn’t stay long because Z was struggling with the big unfamiliar crowd. It was wonderful seeing the beautiful couple so happy, so fresh. I’d seen pictures that hinted at a fun courtship; I’d seen participation in a well-meaning but poorly executed web reality show. The culmination of their experiences together ended perfectly in a new beginning.

Reilly and I reminisce about our courtship and wedding all the time. This discussion has expanded to reflections on our continued dating and pregnancy and major milestones with Z. The past makes me hopeful for the future and grateful for the now. This process of thinking and remembering makes time seem not as relentless and life much more enjoyable.

The end of November presented me with attending a friend’s father’s funeral. He taught at the same middle school Reilly attended, though Reilly was not in any of his classes. I made it to the last hour of the funeral, where family members told stories that demonstrated the remarkable life of a good man. The chapel was packed, and it was obvious that he was loved and that he left the world a better place, at least for those who knew him.

As tears streamed down my face as I listened to these stories, I realized again just how beautiful and uplifting funerals can be. Mount Timpanogos backdropped the quiet and sprawling cemetery where I had a chance to see my friend and give her a big hug. She lives in New York, and it had been a few years since I’d seen her. While I’m grateful to connect to friends through social media, I’m especially grateful a huge part of the legacy a man left for this earth manifests itself in his phenomenal children.

There is still so much to learn in this life, and I only took a few experiences out of the past year to discuss. I look at my husband and daughter and wonder how my attitude and philosophy and convictions will influence them. I wonder about my friends and other family. I wonder how I will become better in areas where I am inadequate. I want to be more thoughtful, a better listener, to solve more problems. My imprint on this world needs to mean something.

The last song in Patty Griffin’s most recent album, Servant of Love, is called “Shine a Different Way.” Some of my favorite lines read:

In more ways than one
Shine a different way tomorrow

Tomorrow is a new year–2016: Olympics, election, other significant stuff. But more importantly, it’s tomorrow, a new beginning, a fresh start, a way to contemplate and become a better person. There’s no one right way.

Let’s be better together, bask in inevitable cognitive dissonance, lift each other up. Let’s solve and re-solve and resolve with civility and love and kindness and find all the different ways we can shine.

Happy New Year.

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j,,,,mzz . Social Navigation

[The first part of the title is Z’s. I stepped away from the computer for two seconds, and she decided she wants to blog.]

The Saturday before Halloween our ward had a chili cook-off and Halloween carnival. Earlier in the day I had put Z’s costume on her to see if it fit and so she could get used to it. I’d taken it off so that she wouldn’t get too hot. When it was time to get ready for the party, I struggled with Z to put the costume on, but she finally relented.

She was cranky. She didn’t have much of a nap that day, and when I tried to paint her with a lion face–super simple, a short black upside-down triangle covering the bottom of her nose, a white snout, and black whiskers–she wouldn’t stay still. She looked like she’d eaten powdered donuts mixed with soot.

It’s two blocks to our church building, but we decided to go on a little drive to to fit in a little nap for Z. We drove around for about 10 minutes before pulling up to the church. Z was sleeping. We found a place to sit. Reilly held our dozing child while I stood in line to get us food.

rawr.

We made it through most of our meal before Z woke up. The moment she opened her eyes, she began to cry. She saw all the people and heard all the noise. I would have been overwhelmed as well.

We tried feeding Z, but she was too upset. Reilly took her into the foyer for a little while, and when they came back, Z was no longer wearing her costume. But she was still crying.

Time to go. The instant we stepped outside into the cool air and fuzzy ambiance of dusk, our little toddler calmed down. We went home and she played until bedtime.

The following Friday I decided to get our money’s worth out of Z’s costume, so I put it on her, and we went to the library. She likes climbing the stairs to the juvenile section.

On the prowl...
On the prowl…

Z especially loves to play in the courtyard between wings. It was chilly outside, but the costume seemed to keep her warm enough.

Bounding down the hill...
Bounding down the hill…

We then went to Provo Towne Centre Mall, where she could play in the kids’ area and walk around. She fell asleep in the car on the way, but I brought her to the kids’ area and lay her down to let her sleep. When she woke up, she didn’t move but watched the other kids playing for a while.

Just watching...
Just watching…

After walking and playing, we went back home to walk and play some more.

Lion slide
Lion slide

We checked the mail, and Z likes to see if we received any packages.

Where's our mail?
Where’s our mail?

Then came Halloween day. We were up until 1am the night before watching scary movies with Reilly’s brothers (Z was in bed), so Reilly and I were quite tired. But we wanted to do something for Halloween. We decided to accept an invitation to a party. We all got in our costumes.

Off to see the Wizard...
Off to see the Wizard…

We thought Z might have another tantrum, but she was actually very good. We were early to the party, so we left to get eat some pie and came back. But the person who invited us wasn’t there yet, and it was getting late (8:30!), so we just came back home and put Z to bed. I invited friends over, and we watched another scary movie and stayed up past midnight.

The following Tuesday we went to a wedding reception in Riverton. We stood in the reception line no longer than two minutes. When we got to talk to the beautiful bride and groom, Z began to cry. We wrapped up our conversation and found a seat and I got up to get some refreshments–s’mores. Perfect for a crisp evening. I thought Z might like the chocolate and graham crackers. Z ate quietly for a few minutes, but maybe it was the crowd of strangers and unfamiliar chatter and not being able to run around like she usually does before she started crying.

Again, once we stepped outside, she stopped crying.

She did really well her first time in nursery, but she’s had a rougher time the past few Sundays.

Then last night Reilly and I brought Z to a ward missionary meeting in someone’s home. She did fine playing on their carpeted stairs. She jabbered and checked in on us every few minutes. Someone else’s toddler was there. Once when he stood in Z’s way she looked at him and did something that looked like frustrated jazz hands before walking around him.

From these experiences I’ve observed:

  • Z likes small groups, especially with family. (Just like Reilly and I.)
  • Z likes being able to run around and explore.
  • Z doesn’t like a lot of noise or strangers.
  • Z isn’t sure what to think about other toddlers.

From these observations, maybe:

  • Z could adjust to being around people her age more often. (Just like Reilly and I.)
  • Reilly and I could have more creative solutions whenever Z doesn’t feel like being very social with us.

Times like these I wish I knew what I was doing, but we’re okay. We’re learning. And she’s only 19 months old, so there’s that.

18 Months

Dear Zinger,

I want to tell you a story. Don’t worry, it’s about you.

Nearly two weeks ago, you had woken up at least an hour earlier than usual. Dadda had prepared your morning bottle and got you out of your crib. I could hear all of this happening from the bedroom: the fridge, the microwave; Dadda greeting you as he opened your door. I was still under the covers, trying to decide whether I should get up. Maybe I was scrolling through Facebook or trying to blink away the dark static of dusk, but you were in the living room, drinking your bottle, staying relatively calm and quiet. Then after a few minutes Dadda said, “May, Z just threw up all of her milk.”

Friday.

I walked to the living room and Dadda asked what to use to clean up the mess. I looked at you and asked if you were okay. You were crying. I picked you up and said that I was sorry. Maybe it was the milk at 5am; maybe it was too early for your stomach to be so full. I gave you some water, and you ate two Goldfish, but that did not stay down. We took off your shirt and wiped the vomit from the high chair. We laid you on the floor, and I lay beside you as you drifted off to sleep.

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You managed a pretty long nap. You seemed okay with a little more water and a bit of banana. I texted two doctor friends, and they both said the same thing: Keep you hydrated. Sips of water at a time. If you can keep down the water and banana, then try BRAT the rest of the day — banana, rice, applesauce, toast.

We were making progress. You love rice, bananas, and toast, and you were hungry. You had a teaspoon of water through an oral syringe every 5-10 minutes.

You made it nearly six hours without an episode. Just before Dadda got home, it all came up, but slimy. Banana. Toast.

Rice. So much rice.

We started over again. You began to hate the syringe. But we learned that cold water felt pretty good going down your throat. And you knew enough to cooperate when you were thirsty.

We scaled back to bananas and toast.

About two hours later you started climbing over the arm of the sofa the way you often do, so it seemed you were back to feeling somewhat normal. One of your favorite Pixar cartoons was playing as you romped around. After your final dismount from the couch, you walked over to me and let out a whimper, which turned into a full-blown cry. I realized too late that this was THE signal. It came, and I was unprepared. Your tummy was a fountain of rice and bile, flowing onto the floor, spewing an irregular rhythm.

I wiped your face, picked you up. Held you close, and told you how sorry I was. I hated so much that you were sick.

Two hours later you wandered into our bedroom and rolled around in a blanket on the floor. In the dark. I watched you; I knew you were tired. After a few minutes you walked up to me and cried. I picked you up to carry you to the bathroom, hoping to make it in time, but I wasn’t fast enough.

I was so, so sorry.

The bright side was that you were keeping down water for at least two hours at a time, so you had wet diapers, just not as frequent as on your healthier days.

Another blessing was that you made it through most of the night without vomiting, and you had only one episode on Saturday.

Sunday morning you woke up crying. You were hungry and weak, only having water and Pedialyte and bread in the past day. You were prisoner to a stomach bug that offered no other choices. But the virus had stayed long enough and was on its way out, and when Dadda offered you a plate of banana pieces, your little hand trembled as you reached to the plate and brought real food to your mouth and remembered the exquisite sweetness and texture and the feeling of something substantial nourishing your body.

Nearly two weeks later you show no signs of ever having been sick. Even though I didn’t do anything wrong, I felt I was falling short. Your being sick meant something about me as your mother that didn’t make any sense, but ultimately it meant that I was worried. I’m allowed to be worried. But now that you’re better, I feel forgiven. I feel grateful.

You have mostly forgiven food, which shows in your restored appetite. I feel grateful for this, too.

Today, nearly two weeks later, you are 18 months old.

As much as we try to control your surroundings, predict your life—even in the short-term—I’ve realized that patterns of raising a child more closely resemble the uncertainty of your next hurl. There may be obvious signs, but will I be fast enough to avoid a mess? Will I ever be sufficiently prepared? Will the answer to these questions ever be yes?

The point is we recover, right? We get over the acidic and chunky and putrid. We appreciate the struggle in hindsight, but we truly cherish the fresh air now. At least we should. We bounce back stronger and a hell of a lot smarter. And hungrier.

Maybe 18 months barely scratches the surface — there’s so much more life to go — but the scratches are there. We’ve enjoyed your first year and a half with you, even when you passed your stomach bug on to me and Dadda. What a pleasant weekend that was! We’ve had so much fun and learned so many things. And we still have so much to learn.

Let’s keep going.

Love, Mom