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

We Went to the Park Today

It’s time to exercise more regularly again. A few weeks ago I fixed the wobble on the jogging stroller and this week I started taking Z on walk-jogs. A 2.5 mile route with a nice park on the way. Heading back home, we stopped by the park and I let her climb down from the stroller and she headed right for the playground. She knew what to do.

Sometimes she feels like crossing the high tunnel, sometimes she doesn’t.

high tunnel

Last time we went to the park, she got pretty brave with the slides. Last time I forgot a camera. This time I remembered.

Then after about 30-45 minutes, Z decided she was done and walked to her stroller and climbed up to the seat. I strapped her in. A mom and her toddler approached the playground. The little girl looked a few months younger than Z and was wearing shoes that squeaked every time she took a step. As she and her mom passed us, I said, “There’s no sneaking up on me.” The mom laughed and joked that my eardrums might be breaking. I watched the baby get closer to the playground, and I remarked that the baby’s red ruffly shorts were super cute. The mom then said that those shorts made her water break. I must have had a strange look on my face when she said that, because she explained that she was at the store and seeing the shorts made her laugh. And when she laughed her water broke. And then she gave birth to the wearer of the shorts. I laughed while starting to push the stroller toward home; she said goodbye and wished us a good day.

I wonder, though, how they came to own the shorts. Did she buy them at the time her water broke, or did she go back to the store hoping to find the memento of her water breaking? If she went back, when? Was she hoping the shorts would still be there? If she bought them just before delivering her baby, that’s some real clearheadedness there. Or maybe she got someone to buy them for her.

I will think about this forever.

That mom was really friendly and I’m glad that her daughter’s shoes squeaked, because I got to be a smart aleck. I like meeting nice strangers. That’s a good reason to exercise more regularly.

One Zinger Year

Evil?

Dear Zinger,

Look at you.

On Mondays I volunteer at a children’s hospital library up in Salt Lake City. Before going down the hallway that leads to the library, I pass through the cafeteria. Sometimes I see parents with their children. They have food in front of them, seemingly going through the motions of eating just to pass the time. As I make my way toward the information desk, I often see parents dreading results in the lab waiting room. Sometimes in the next room there are children and their parents in the sibling playroom. There’s a life-sized cardboard cutout of Elsa, looking glittery and friendly. The hospital is bright with tall, green plants, left-spectrum colors in the furniture and carpet and fun, educational murals on the walls. This effort to cheer patients and their loved ones is commendable, because everything possible needs to be done to raise spirits in a place that can generate so much fear and heartache. The parents especially look tired, probably from waiting or lack of sleep or anxiety. They look worried. The parents try to get their children to eat or play to make waiting bearable, to lessen time’s weight, to relieve the pain of slow ticks of a clock. I come home and think of the parents looking at their children. Exhaustion, defeat, hope. Love.

I look at you.

I don't know what you're talking about

RUNNNNNN!

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A couple of months ago, a friend of mine posted a video of her daughter walking with crutches. This amazing girl was born with limb differences, and I talked to you about the video after showing it to you. As Lamp (her online name) took her first few steps, she squealed and laughed, and I saw your face light up and smile. Tears filled my eyes. I said that’s your friend Lamp. I said do you remember her. I said she lives in Ohio now, but we went to the park with her and her family when you were two months old. I said her arms and legs are different sizes, so her dad and doctors built things to help her move around. I said let’s watch the video again. So we watched it again, and you smiled again. I cried again. We watched the little 11-second video at least three more times, and you smiled each time. Each. Time. I said you can see she’s having fun learning how to walk. I said you have a good heart to be so happy for your friend.

I said please don’t lose that.

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You like to play a game where you close our bedroom door and I’m kneeling in the hallway. I put my knee just across the threshold so that the door doesn’t close all the way. I see your fingers wrap around the edge of the door just before you swing it open. When it swings about halfway I see your face, and I say boo. Then our eyes connect and we laugh. You love the game with Dadda where he says I’m gonna get you! and you smile and run away from him, but not so fast that he can’t catch you. And sometimes you actually run toward him. Then he picks you up and laughs while you smile that smile saved especially for Dadda. It warms my heart.

You want us to get you.

Peas & Carrots

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bear

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You are one year old. And you can probably tell that I still don’t know what I’m doing. But I’m doing the best I can, like I said I would. I read books and articles and watch other parents with their children and ask for advice. For the most part people are very helpful. They share experiences and make suggestions and gently reassure me of my role as your mother. As long as you’re clean, eating, and sleeping, you’re doing okay. You even play hard every day, so Dadda and I are doing something right. And I’m doing okay, even when I shower only every 2-4 days and skip some meals (but eat snacks) and dream about eight hours of sleep during a five-hour slumber. I know I’m supposed to take care of myself, but I can’t say that I’m neglecting myself because I have so much fun spending time with you and Dadda. We eat dinner together at the kitchen table; we share hugs and kisses and snuggles and laughs. We dance and spin and read. We pray. We say amen. While Dadda holds you I stroke your face three times and kiss your cheek. I say sleep good, little girl. I say I’ll see you in the morning. I say I love you. And Dadda lays you in your crib.

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You are one year old. You are so smiley and gentle and curious. You point at people you know, and you look at people who ought to know you until they smile at you. I have never known so much anxiety, uncertainty, wonder, and joy than I have in the past year. I never knew I had the ability to love so far beyond myself. I will gladly keep giving up showers and meals and sleep for more years like the first one you gave us. Those will years will be different, because you’ll be learning and growing and progressing exponentially; you’ll be forming opinions and making discoveries and forging relationships, but those differences are what makes those upcoming years the same. Does that make sense? We’ll be teaching each other. We’ll continue to strive to understand each other. We’ll keep playing and reading. Hopefully there will still be dancing and spinning.

We will still be praying.

Happy birthday, little one. We love you. Watch this slide show to see just how much you’ve blessed our lives this past year. (Some songs are cliché and cheesy, but I couldn’t help it.)

Love, Mom