Monthly Archives: July 2016

This is How I Do It

So much of what I write here is different than it used to be.

I’m different than I used to be.

When I started this thing in January 2012, it was mainly to explain the special-needs family to people who know us. It became therapeutic to write openly about things that were hidden, difficult, unsolvable. Writing has always held an element of fun for me, too. Even when it was hard, there were rewards.

In the last six-ish months, though, there has been a change. If you read this blog regularly, you may have noticed a shift toward spiritual things. Spirituality is at the core of my life. For me, it is the point. It’s the hope and the meaning and the guidebook.

Spiritual things were there before when I wrote, but perhaps not so much embraced as they are now. By me. I don’t know how other people receive them. I assume if they don’t like the subject matter, they stop reading.

I mean this with the utmost respect, so please do not take offense when I say this: it doesn’t matter to me who likes it and who reads it. Which is to say, I don’t write for myself anymore. Nor do I write for a specific audience (which is what I drill into my students’ psyches, but whatever).

It’s of my hands. Let me explain.

Here’s how it happens:

  1. Something happens to me. Often it’s wild. Complete crazytown.
  2. I wonder why it’s happening, because duuuuuude.
  3. Even as it’s happening, in a back corner of my brain I am already writing about it. Mentally composing the Thing into sentences. I know. I was just born this way.
  4. Time separates me from the wild Thing that happened, giving me perspective.
  5. I feel a spiritual urgency to write the Thing down, along with commentary, because it IS my life yo.
  6. I write and hit “publish.”
  7. Then I edit, because after the Thing is published, all the grammatical errors suddenly appear.
  8. I revise. I hit “update.”
  9. And I feel a sense of having done my duty. Meaning, whoever reads it and loves/hates/is neutral toward/inspired by/annoyed by/weirded out by…is none of my business.

What I mean to say is this: God gives me a unique life, prompts me to write about it, helps me know what to say, and then does whatever the heck he wants with the finished product, to which I say, “Works for me.”

If two people read my posts, that’s cool. Maybe it will resonate with one of them and offer her something she is looking for.

If no one reads my posts, that’s fine too. I still wrote down the Thing and what I learned from the Thing. God reads it, I’m fairly certain.

If lots of people read a post, then maybe that crazytown Thing was a good springboard for talking about things other people are pondering too.

Purpose is another rhetorical function I discuss at length with my students. One must know one’s purpose in order to be effective in writing persuasively.

I believe that now, four and a half years after beginning to write in earnest, I have identified my writing’s purpose:

To say what God tells me to say.

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Clean House

In the last couple of weeks I have straight-up purged and organized the entire house. Every closet, shelf, cupboard, room, and drawer—no clutter left behind.

I have never cleaned out everything all at once, or so quickly, but this time I was a woman possessed, even obsessed, with order. It rubbed off on Dutch, to an extent. He agreed, under duress, to go through his side of the closet. “Didn’t that feel amazing?!” I shrieked. He shrugged while filling plastic bags of clothes to donate.

Our house has been a place of survival, particularly since Truman was born 4.5 years hence. Before that, I would call our home basically normal in its function and appearance. But then the shiz got real with four kids, two with special needs and one a premature baby.

My home became merely a place where we lived. It was purely functional. The beautiful parts went away, trashed by Code Browns and the manhandling destruction of autism. It was messy. Utilitarian. Busy. Stinky.

It wasn’t about aesthetics anymore, or even cleanliness. It was about willing myself through the laundry, poop, and screaming until bedtime and my oft-interrupted sleep. I’m not bringing this up to complain, but to illustrate our living conditions once the crap hit the fan and we were basically living in a metaphorical bunker, trying to stay alive.

This blog began during that time of upheaval, and in it I’ve written scores of times about the literal messiness of it all. Because it happened, and it was truly a thing, you guys. I know. It made me crazy.

But it also made me realize that things are only things and the state of one’s kitchen or master bathroom DOES NOT EVEN MATTER ONE BIT. It doesn’t.

I told a few people then that I felt God was teaching me that a perfectly clean house wasn’t as important to him as taking care of my children and collectively surviving these figurative war years, so to speak. Some responded, “But I can’t function in a messy house. It drives me crazy.”

I knew what they meant, because I felt the same way. Only clean surroundings and orderly days weren’t in the cards for me. Not for a long time. We were barely staying afloat. The house was the burning ship on which we sailed, as we frantically searched for landfall.

Things have evolved incrementally. Truman is bigger. Charlie isn’t a hot mess anymore and is incredibly helpful. Jack isn’t smashing things or smearing as much poop. We have helpers. We all sleep through the night. Everyone who needs it is receiving therapy and meds, and is a) stable and b) making progress.

All of these factors have lead up to this summerpalooza wherein I attacked and reordered ALL OF IT. And I’m not super attached to things anymore, so donating or chucking useless stuff was a breeze.

My favorite outcome of all this is that my grandma Lila’s quilts, which were folded in a closet for years, are now hanging all over the house. Everywhere. Junior, Jeff, and Henry helped me hang them and we all agreed: It looks so much better now. We have color and pattern and vibrancy on these walls.

It looks great. It makes me happy. But there is the very real possibility that without the last five years of suffering, I wouldn’t be capable of appreciating the relative calm. The complete gift of peace. The pure simplicity of order.

 

Have Jack, Will Travel

There was no day camp for Jack today because it’s a state holiday in these parts. Jeff always has to work on this particular holiday, so today has been a long day of abject hardship.

By 8:30 am, we were on Ride Number One of the morning. When Jack is bored and antsy and living in the relatively unstructured environment of home, he joneses for rides in the car pretty much nonstop. And by “joneses,” I mean he hounds me relentlessly. RELENTLESSLY.

We go get fries. We run little errands. Recently we started driving through at Sodalicious, which is the type of business that springs up and thrives in Mormon country. The desert has blossomed, people.

Sodalicious and its peers are soda and sweets shops, built on a Starbucks-like model. They have drive-through windows. They offer customized sodas with additions like coconut, cherry, lime, guava, and pomegranate. They also ply their devotees with giant pink-frosted sugar cookies, scotcharoos (like a rice crispie treat, but on crack—with butterscotch, peanut butter, and chocolate), and enormous soft chocolate fudge cookies (my personal favorite). They taste the way I picture heaven, because I feel that heaven will have chocolate.

It’s all sugar, all the time, because sugar is the one vice in which Mormons unabashedly indulge, and even embrace. We don’t drink or smoke or go for coffee. But we will consume sugar with pagan ferocity and abandon. Then we will post about it with pics and hashtags.

Jeff served his mission in Atlanta, where liquor stores are known as “package stores.” It’s more harmless sounding, he said. People feel better calling their whiskey in a brown bag a “package.”

This is why whenever we drive past Sodalicious, Jeff says, “Look, it’s the Mormon package store.” Which, it kind of is.

Jack is the reason I have gotten in on this craze, and why I keep coming back for more. One needs a destination for one’s rides, and it might as well taste amazing. I recommend the Rocky Mountain High, which is Coke, cherry, and coconut. It’s basically perfect.

We’ve recently passed the witching hour and it’s almost Jack’s bedtime. Today’s tally for Official Rides to Get Jack Out of the House and Buy Him Crap sits at five.

Sometimes I wonder if a conversation happened when we were planning and discussing my mortal life in the pre-earth realm. I picture God and his helpers being like, “You will be doing a lot of driving as Jack’s mom. Like, A LOT a lot. Don’t stress too much over this. Just go with it. Just drive the kid where he wants to go. Five times in one day? It will likely happen. We are just being realistic. We will make sure that someone has invented the Mormon package store, which will be a boon to you both. Also, know that we certainly aren’t judging you guys on your sugar intake. Do what you’ve got to do to keep Jack happy.”

This is literally the conversation that I envisioned today, I believe during Ride Number Three. The weird workings of my mind can unearth peace in unlikely places.

God knows what it takes to keep Jack content.  He drives with us.

GoatesFam-99

Things My Mother Told Me About The Day I Was Born

My mom recently gave me a rundown of various facts about my actual day of birth, which I will now indulgently list, (you’re welcome):

A) It was, predictably, a hot July 15th when I entered the world.

B) My mom had me at a university teaching hospital.

C) The monitors revealed I was in distress because…

D) no one back then in the dark ages knew that my mom had placenta previa.

E) The OBGYN said, “If you want this kid to be able to read and write, we have to do a C section now.”

F) This seems like kind of a weird way to present the necessity of this procedure, but whatever.

G) I’m here. And I can read and write, so there’s that.

H) The delivery room filled with interns and residents hoping to catch a caesarean peep show.

I) My mom shouted as they began making the incision, “I can feel that!”

J) My dad (the MEDICAL DOCTOR) turned white and slumpy. The crowd of interns/residents passed him to a chair at the end of the room.

K) After delivery, my mom asked an orderly who was wheeling her to recovery if she had a boy or a girl. The orderly said, “I think it was a boy.”

L) He was wrong.

M) I was the third girl. Two more would follow me.

N) Also, people who don’t know the facts about a just-born baby should say, “Let me find out for you,” instead of guessing wrong. Again, whatever.

O) My mom was taken to recovery where she wasn’t with other postpartum women, but rather an assortment of random post-surgical patients, such as…

P) the guy in the next bed, who was lying on his stomach because his back was badly burned.

Q) This strikes me as bizarre, because she did not give birth in a MASH unit.

R) When she was taken to her hospital room, the young single girl sharing the room with her spent three hours talking on the phone. In the middle of the night.

S) My two sisters wanted to name me Cindy.

T) This is because they had been passive-aggressively coached by my grandma.

U) When my mom went to her prenatal (and postpartum) appointments, all patients were weighed in the waiting room. The nurse would then yell each patient’s weight across the room to the person recording this information.

V) Are you kidding me?

W) I mean, really 1970’s?

X) Nice way to treat new moms.

Y) My mom and I both felt glad we weren’t currently giving birth. Or having our weight shouted across a room full of body-shamed women.

Z) But we were glad that we did it before, on the occasion of each of our children coming into the world.

Birthday present

Enough has happened in my life in the last week to warrant five enormous separate posts, but alas, there has been no time for writing. I’ve been composing in my head, which means I forget what I meant to say while I was driving, or showering, or trying to coax a four-year-old to eat.

This blog isn’t a travelogue, though, except when it sort of is, *snort.* There is no need to “catch up” on our stories. I don’t mean it to be a daily journal of everything that happens in our lives. I don’t blog as therapy anymore.

I do write when something needs to be said—something bigger than me.

And now I will tell you about my birthday.

Last week I took three of my boys to the cabin. Jack can only go that distance when I have another adult with me, so he stayed home with Dutch (and the sitters) and went to camp.

The morning of my birthday, I slept late. Later than I have slept in at least a couple of years: nine o’clock, people. It felt like the purest luxury to wake when I heard household noises, and roll over and fall back asleep.

Sleeping until your body decides it wants to wake up is what every woman wants. That’s it. And sadly it remains an elusive treasure, no?

I rose and spent the morning feeling like a girl. Here’s why: my parents were there, essentially taking care of me. They were helping with my kids and bustling around doing parental-type things.

Maybe it’s because Jack wasn’t there, but I felt weightless. It was that lightness-of-being sensation that is awfully rare for me.

After lunch, the bubble popped.

While sitting on the patio and listening to the river flowing, my dad suddenly was hit with intense vertigo. He couldn’t walk. His left eye was drooping and bulging. He began to vomit and did not stop for the next hour.

Quiet afternoon turned frenetic as Henry and I carried him to the car. I left the little boys in Henry’s care, and I drove my parents 45 minutes to the emergency room.

Was it a stroke? Was it related to the cancer in his liver? Was his myesthenia rearing its head?

“Stop driving like a maniac,” he called from the backseat, in complete seriousness. I continued driving the speed limit, with my hands at ten and two on the wheel. Vertigo makes for terrible backseat drivers.

It was a long, miserable ride for my dad. When the world is spinning and you can’t keep your lunch down, misery is what’s happening. The end.

We arrived at the hospital and I hustled inside for helpers and a wheelchair. My dad had to be lifted from the car. Within minutes, he was getting IV fluids and that sweet, lovely nectar Zofran, the anti-nausea drug that restores a dehydrated person’s will to live. He had an MRI and a heart scan. Both negative.

The team deduced that a combination of over-exertion, dehydration, and a new blood pressure med had bottomed out my dad’s heart rate and made him feel like total crap.

The day began nostalgically, with me feeling like a child on my birthday. It had swung dramatically to me taking complete charge of my parents well-being.

It could potentially be the most thirty-ninth birthday to ever have happened. Thirty-nine feels very middle ground to me. It’s a season of life when you’re smack in the middle of children (in my case big ones and small ones), and parents whose bodies are facing the tolls of age.

I felt grateful I happened to be at the cabin with my parents so I could help them. I was thankful the ER staff made my dad feel well, and ruled out bigger problems. I gave my dad a stern lecture about slowing down, being peaceful, hydrating, and talking to his doctor about adjusting that new med.

He was legally obligated to listen earnestly to my lecture and nod, because I had just spent my birthday making him feel better.

Then we all went to Maverick on what my friend Scott calls a PDR, or Proper Drink Run. We all needed hydration. I treated myself to a tall chocolate milk for my birthday and we drove home through the slanting, saturated light of a July evening.

A birthday is a milestone, a reminder of how life changes, an excuse for being indulgent in the service of celebrating life.

This year mine was a day where God put me in a place to help my parents.

Families are the world’s fixed point of rotation. They keep it from spinning out of control. They keep it turning.

Hives, Continued…

My hives started to heal over the weekend, but yesterday they were back and they were furious. My eyes were surrounded by hives, puffy, red, practically swollen shut. My chin was covered in hives and my lower lip was swollen twice its usual size. Charlie said my face looked scary and he didn’t like looking at me. Honesty + autism + Charlie = *sigh*

But really, the killer was my neck. It was entirely bumpy and angry, itchy and tender. Nora Ephron wrote a funny book about aging called I Feel Bad About My Neck. While our reasons weren’t exactly the same, I felt very bad about my neck yesterday.

So off to the dermatologist I went, with my littlest boys in tow, looking like I had a pox. And I was limping, because the bottom of my right foot is hive-ville. Srsly.

Figuring out skin reactions requires some sleuthing, so the dermatologist, the nurse, and I went through everything I ate, drank, touched, ingested, or applied to myself during the past week. Nothing stood out, until they asked if I felt flu-ish, which I sorta did.

Bingo. I have a virus, and my body is manifesting it as a violently horrific case of hives. The human body is phenomenal. And also very weird.

We drove home from the doctor’s office and I started shivering. I tried to drop off my prescriptions for oral and topical steroids at the drive-through pharmacy, but as luck would have it, the drive-through window was broken. Because that’s how it works when you feel like death and your face looks like you stumbled off the set of The Walking Dead.

Jeff was two hours away. Jack was due to be delivered from day camp at any minute. Junior was out sick. The respite sitter was out of town. In desperation, I called my friend Chris and begged her to go to the pharmacy for me. Because she is an angel person, she did it. And she took my two little boys, plus her four kids, which means she is so much nicer than I am and that she is totally going to heaven. She brought me my meds, along with a Coke Zero and some chocolate, and effectively saved my sickly life.

Jack was a bit of a disaster after disembarking from the day camp van. In no uncertain terms, he demanded a ride and fries. As I drove him, screaming, to get said fries, I straight up prayed for deliverance. “Help me through the next few hours,” I moaned. “Stay with me until Jeff is back and Jack is calm and the meds are absorbed into my system.”

Then, this happened: Jack sprawled on my bed and fell asleep after he ate his fries. A tender mercy and a blessed miracle. And my sister, Lisa, texted and offered to take the boys to her house to play with her puppy, Penny, today. 

It seems like whenever I am having THE ABSOLUTE WORST DAY, some meme about making every day great! or living each day like it’s your last! (ugh) pops up in my news feed. This is why the internet is maddening. 

But also on days such as yesterday, which actually are THE ABSOLUTE WORST, there are true gifts.

I needed Jack to stop screaming and lunging at me, and God knew it. I prayed and held on and Jack fell blessedly asleep. I was an itchy, miserable mess, and he knew it. He sent Chris and medicine and Lisa and Coke Zero.

Illness makes one appreciate being well. Relief from suffering makes one appreciate everything.

Hives

I woke up yesterday with hives.

According to the dermatologist’s office, it’s a reaction to…something. We don’t know what. Something environmental. The nurse told me she once had hives for a week with absolutely no understandable cause, so good job keeping things mysterious, hives.

They are profuse on my back and belly, legs, arms, scalp, ears, everywhere. They are everywhere. And they itch.

When I first saw the raised welts, I thought, “the term ‘hives’ must refer to the raised look of a beehive.” But now I think the term comes from the buzzing, horrid discomfort one feels when one has hives.

I am buzzing like a bee, and not in a lazy, lovely summer day sort of way. More like a half-crazed bee trying to escape a closed window sort of way.

So I don’t know what caused them and despite antihistamines and cortisone, for now I can’t do much about them. And Jack is having one of those weekends, so that’s what’s happening.

Have you ever wanted to unzip your life and shed it like a skin? Just for a little while?

 

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P.S. The after hours clinic hooked me up with a steroid shot tonight. The hives are being banished and I’ll keep singing my little ditty about better living through chemistry.

Tiny Letters, Midsummer

Dear Holiday Weekend,

You were great. Until Jack got strep. Then you were like a burning plane in a death spiral.

 

Dear three cans of crisp, cold Fresca I consumed on the 4th,

You the real MVP.

 

Dear Jack,

We do not cram family photos down the disposal and shred them.

Nor do we attack family members.

 

Dear Costco Rotisserie Chicken,

Thank you for being a thing. I love you.

 

Dear Week When Jack is Sick,

You are a freaking fire-breathing dragon.

 

Dear Blog,

I’m struggling to find words. I am loathe to plunk down the whiny, annoyed, frustrated words which are my first response to many things. And so I think and mull and hope to write better words –true words—soon.