Four Zinger Years

This post was written 10 April 2018, but I’m backdating it to Z’s birthday, 8 April.

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April is Autism Awareness Month

Dear Z,

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.

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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.

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We have you as our daughter, and you have brought us more than we could ever imagine. More love. More happiness. More life.

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Happy birthday.

Love, Mom

Year-End Ramble: 2017

This year: Pick your best cussword.

2017 has challenged us in so many ways. It has strained our rights as human beings, divided us from friends and family, tested faith, broken individuals seemingly past repair. It has taken my family down stressful paths. Although we have been blessed with quality time and other graces, others have suffered deeply, and often silently.

Some time during the summer someone from church asked me to help out with organizing potato dishes for funerals. Cheesy potatoes are important to any post-funeral luncheon. People gather after saying goodbye to their loved ones and find comfort in sharing food with those who also love the dearly and recently departed. Their emotional needs are met through one of their most primal needs, by eating something delicious, something made with love.

Cheesy potatoes are only one aspect of the meal, but it’s a favorite among mourners. Lots of starch, and lots of cheese. Those elements in that combination are meant to fire off certain neurons that translate to comfort, which tries to coexist with the burden of grief.

After receiving this assignment, a few months passed, and no funerals had been planned. The first half of the year had been replete with passings-away, but I was not yet part of the funeral meal committee. Then the last Sunday of October the lady who extended the assignment remarked how quiet it had been, and I thought to myself that this was a good thing. I wasn’t opposed to doing the work, but I was glad that people hadn’t experienced that kind of heartache in our ward, at least for a few months.

Go figure the moment someone mentions how a thing hasn’t happened, the thing happens shortly after that. Later that week our ward received an email about the passing of someone from our ward. I researched the person and found out that he had suffered from depression. His beautiful obituary profoundly saddened me. Usually during these times I feel the most helpless, but this time I could actually do something. Never had potatoes seemed more vital. If the other parts of the luncheon failed, cheesy potatoes had to prevail.

I had a list of sisters in the ward who were willing to make the cheesy potatoes. It was my job to call these ladies to see who would be available to provide the potatoes that weekend. I came up with a spreadsheet and kept track of responses and commitments, which would also help with future funerals. Here, I deleted names for privacy:

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GF=gluten-free; LM=left message; nr=no response

The sisters who were able to help that weekend were very kind. I had never really been an active part of this kind of effort, and their love and solemn treatment of this responsibility humbled me.

The ladies made their dishes and dropped them off at the church the morning of the funeral. It wasn’t until the following Sunday morning at church that I found out the funeral had gone well, that the food was delicious, that the family was grateful for all the help and support. I had imagined everyone eating and sharing stories and feeling a degree of unity that only comes with grief over a mutual friend and family member. Potatoes were all I could do—and I didn’t even cook them but just called people on a list—but for this moment, they mattered.

I have several close friends whose lives are entangled with depression and anxiety. They navigate their brain chemistry and the changing seasons and pollution and other circumstances with medication and therapy and exercise and hanging out with loved ones. It’s not easy for them, fighting the grey. But they are brilliant and creative and so passionate about the earth and humankind. They are the best readers and writers and experiencers of life; they are musical and endlessly curious and know all the best cusswords (and usages). I am so honored to know them.

Reilly’s mom has had every excuse to spiral into depression, yet she pushes through with such determination. And a smile. And enduring positivity. She’s coming up on her first full year of bi-weekly cycles of chemotherapy for stage IV metastatic colon cancer. It’s hard to imagine her daily hardship of increasing weakness and regular wooziness, but she has kept busy with work and doing as much as she can. She’s had excellent care with amazing doctors, and she knows she is surrounded by so many people who love her. Everyone faithing her well seems to be making a difference. Her strength amazes me.

She and her family have seen a pet cross the Rainbow Bridge this past month. A Chocolate Labrador Retriever, Maya was a boisterous and carefree and previously big dog, until diabetes caused drastic weight loss, blindness, then finally loss of use of her hind legs. No one likes to hear the vet say what the best course of action is to minimize suffering, even though it makes the most sense and really is the most humane for the dog. It’s painful saying goodbye to a pet, especially after almost ten years of companionship.

This year Alzheimer’s, dementia, Parkinson’s, and other ailments have ambushed or harrowed loved ones’ journeys.

My mom broke four toes when she slipped from an elliptical machine. But she hasn’t slowed down. This is both annoying and endearing at the same time. I love her for that.

Friends in Florida and in/near Texas or with family in Puerto Rico endured hurricanes and are trying to repair their lives.

Friends who married their high school sweethearts nearly 20 years ago have gotten divorced.

Other friends are enduring similar trials and heartache.

Earthquakes. Fires. Volcanoes. Shootings. Tax cuts. Health insurance. Church. #metoo.

How do people find comfort? What helps them in their agony and despair?

Z’s diagnosis was not as much of a bombshell as the anticipation of her diagnosis. This expectancy involved asking myself (after wondering what I did wrong) how I would handle this situation, what our “new normal” would be, how we would teach our innocent, nonreader of emotions to defend herself against monsters and assholes, among a plethora of other questions. But once we obtained a diagnosis, a wealth of resources became available, I found out several families are in our ward who have children with autism, and Z’s ABA therapy has helped her little personality emerge in ways that that weren’t obvious even six months ago. We have received an outpouring of support and love from so many caring people. You know who you are, and we are infinitely grateful. Thank you for your acceptance, kindness, and generosity.

This past year I have looked forward to Sunday dinners in Payson and Saturday donuts with my family. Family visiting from Florida. It has been nice to go on occasional movie dates with my perfect husband. To travel, to take long breaks and relax in our home. It has been rejuvenating to hang out and eat pizza with friends and discuss actions for lessening the hate in this world. Like a good nap or fresh air.

I have enjoyed picking apples and peaches and trying to make pies and making toffee and brownies and other little goodies to share. But I have also found calmness in literally tearing down walls (maybe figuratively, too?) and building shelves and painting and caulking. I have nurtured new friendships. I have explored more good music, movies, books, and television. I have discovered Twin Peaks while rediscovering the treadmill. My heart pumping, blood flowing, and sweat dripping are sometimes all I want out of life. It feels so good.

I have marched.

Voted.

Contacted my senators and representatives.

We have also relished hosting a quarterly lecture series in our home, where we listened to speakers/friends talk about a variety of subjects: Satire (Reilly), the Poison Control Center (Reilly’s sister, Amber), Horror and the Family (Jon Smith), and Fan Studies (Melissa Beattie). What an exciting reason to gather with friends!

Yes, there’s a shload of darkness and nonsense in the world right now, and we make it through one day at a time. Probably more like an hour—or even a minute—at a time. Sometimes at the end of the day things don’t look brighter. We’re still sad or confused or hurt. It is ok to feel this way. And sometimes all we want to do is pull the covers over our heads and cry. It is ok to do this.

It is ok to bring this version of ourselves into 2018, because 2017 was ruthless. Pick your best cussword. You know: it’s complicated. I may spend the first part (or majority) of the New Year swimming in my covers, trying to find/push away sunlight and coming up for air/holding my breath.

This supply of oxygen, though, the most significant mercy that came out of 2017, was that many of us took the time to listen to each other. Even though we have disagreed on many fronts, a greater striving for understanding has risen from our immediate social circles, communities, and the world. This has sustained a hope I will always cling to.

I want to keep listening to you. I want to bolster the comfort and love of real friendship between us. I want to be there, to be the equivalent of cheesy potatoes for you. Something full of love.

Or I could just make cheesy potatoes. And hug you with them. In 2018, and in years to come.

You matter to me.

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.

 

“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.

 

Desuppression

Seven hours of sleep, and the alarm sounds.

Seven hours of sound sleep. I could keep sleeping.

I press snooze.

Anticipating the snooze alarm.

I do not keep sleeping.

Waiting.

I could sleep like this every night.

Coughing gets in my way. It feels like a month of coughing, my abs punching my lungs to expel air at random times, at inconsistent forces. Attempting to tame a lingering tickle in my throat.

Coughing annoys, distracts. Steals sleep. I feel the tickle right now.

Breathing has been shallow lately in this past month. This morning I exhale deeply, and my ribs tighten. Sometimes the spaces between the ribs cramp. Like I have been running and I get a stitch in my side, but I cannot run through the pain until it subsides.

I am not running. I just lie here. Not sleeping.

But the cramps. Am I out of oxygen? Has it been so long since inflating my lungs through deep, meditative breaths? Have my ribs forgotten how to expand, to compensate for my body’s deficit in breathable air?

What is breathable?

Winter sits on the air, spits in it. Sometimes she brings snow and wind and chilled rains and replaces the air.

Winter is heavy and often merciless and stingy, not only with the air but also the sunlight.

I realize more than one cause facilitates my suffocation.

This early in the morning headlights slide across closed blinds: One thousand one, one thousand two. I try breathing again, and it still hurts.

Darkness penetrates the room. Darkness is space, but it does not expand. It constricts. I cannot breathe the space, but it breathes into me, occupying too much of my lungs. The pressure also surrounds me from the outside, hugging my ribs tight.

Darkness leaves just enough air in my lungs to cough. Cold medicine suppresses the cough, helps me sleep.

Now, if only I could breathe more than a teaspoon at a time without pain.

Yet when my child and my husband cough, all I want to do is absorb their coughs. They need to be cough-free more than I.

Ten minutes later. The snooze alarm sounds. I turn it off and sit up. I could keep sleeping. I could keep overthinking this cough. I slip out of bed and begin getting ready for the day, grateful at least to be breathing, albeit heavy, dirty winter air.

Grateful for the full night’s sleep.

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Disclaimer: Obviously I’m rusty with writing, but bear with me. I should be doing this more often and finding my voice. Beneath the coughs. Fingers crossed.

New and Improved 2017

Four days into 2017, and I’m lying in bed, sick with a cold. I wanted to start this year with bright eyes and a bushy tail, but instead I have watery eyes and a droopy tail. My nose is congested, but my mind is clear, and I might as well be doing something productive and reflective.

It’s been a while since I’ve set formal resolutions for the new year. It’s not that I don’t believe in them; it’s just that I see every day as an opportunity to improve. And that can sound like a copout, so here are my thoughts.

Two main categories stick out most for improvement: My interactions with others, and self-care. I want to be friendlier and kinder. I want to be an exceptional listener and strive to understand all sides of a story. A Christmas card I received said that I work with my team in a service-oriented way. Which I wasn’t aware that I did. But I guess it’s a thing that I do that’s become more or less second nature. I’m pleased about this, and I want to keep doing it.

I want to treat myself better, with higher esteem. This may amount to more concrete actions, such as regular hair appointments, massages; decent bedtimes; more honeytime with my husband; more playtime with my amazing daughter. But I also want to read more books and nourish my brain and body as best I can.

Blog/Write/Brainstorm more!

Stay away from Facebook: I’m on a break. I check in once in a while to see what friends are up to. If they’re up to anything mean-spirited, then I check out right away. I’m finding that I don’t really miss it.

Oh, yeah. Exercise. Do more of that. I’ll say at least twice a week.

But I got to get rid of this darn cold first.

Rest more.

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