This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

There is a way to behave at a memorial.

“Here we are. Abe Lincoln, kids. NO RUNNING AT ABE’S MEMORIAL. DO YOU UNDERSTAND ME? STOP RUNNING. STOP RUNNING. ELI STOP RUNNING. WE RESPECT THE DEAD.”

That’s right. I don’t care how dead and gone Abe is. This shit is sacrosanct.

THIS. IS. ABE.

The government shut down, which, obviously, meant that we should go tour our federal monuments on Saturday.

Mark’s goal, hailing from the Land of Lincoln and all, has been to get to Abe. Here for just under a month, the whole crew finally made it.

Here is Mark soaking it all in:

At the Lincoln Memorial in Washington, DC

Mark absorbs Abe’s glory. Gosh we love that marvelous marble melancholy man. #landoflincoln #respect #respect

Tourist tips: It’s easy to take a Metro line to Union Station and then hop on a city bus, which goes in a circle around all the monuments in the city center, and costs very little.

Also: The marble at Abe is sweaty and slippery. And I didn’t really get that, because it wasn’t raining. Had I paid attention in Rocks for Jocks I would have an explanation. BUT I DIDN’T. #geology101fail

I took photos in which my children were not thrilled.

After wrangling the kids at Abe we walked to the Vietnam Veterans Memorial.

The first thing my children did there was photobomb a tasteful soldier statue while two people were trying to take a picture of it with their phones.

A vaping man whose Insta they just dashed gave them a dirty look.

I shot laserbeams at him with my eyes as he walked away.

HAHA!

I gave the kids the same speech.

“This is a memorial. MUCH LIKE ABE. NO RUNNING. DO YOU GET ME? SLOW. SACRED GROUNDS. THIS MEMORIAL NEEDS RESPECT THOSE ARE BROTHERS AND DADS AND FRIENDS THERE ON THAT WALL.”

They nodded solemnly because mommy was being REALLY SCARY.

Eli didn’t get the concept of war.

“WHAT’S WAR MOMMY?”

“A. No yell talking. B. You know, it’s like when countries battle to the death over a variety of disagreements. C. Everyone on this wall died in war, or is missing.”

“THEY’RE ALL DEAD MOMMY?”

“Yes, Eli.”

He was really glum after that, contemplating war and the dead, shuffling his feet and frowning.

Eli and mommy at the Vietnam Veterans Memorial

Children need to behave at memorials, ya dig? (Photo by Mark)

I picked up a photo album leaning against the wall.

Whoopsie. Dead bodies with missing parts here and there. Not so kid friendly.

“Mark, it’s got dead bodies in it. Not appropriate for children,” I called out.

“Yeah, OK.”

Eli and I continued on. Mark paused to contemplate a placard describing a helicopter crash.

Laila seized the opportunity. She picked up the photo album with the dead bodies and poured over it with morbidly.

“Laila-put that down!”

Childood’s over, kids!

My dad lost a friend in the war.

I remember this distinctly, because he came back from a business trip in Washington DC with a rubbing of the man’s name.

It was just laying around and I needed a scrap of paper to do watercolors, so I painted over it, not knowing what it was.

I was 8. He was upset.

Sorry, Dad.

I meant to make that up to him today. My damn phone ran out of batteries. I couldn’t call and get the name and make up for the incident of ’88.

One of the few times I’ve ever seen my dad real cut up was over his friend who died in Vietnam.

Not over the watercolors, but much, much later, when he got a letter in the mail from a high school classmate and shared it with me.

He spent his junior and senior year at an American school in Belgium because my grandfather was a chemist who ran some kind of factory out there.

The letter told the story of how their friend and classmate at the American school had died in Vietnam. We’d looked him up in the yearbook after Big Al read me the letter. The dead soldier had been beloved, the class clown. He was one of the names.

There is closure in knowing how it ended. Even when the details are awful.

Near the wall a man crouched on the ground and worked out a watercolor painting of a path cutting into woods.

I was curious about the work but I left him alone.

Drawing and painting and writing can get us through trauma.

Anyway, I hoped the man drawing at the wall felt peace near the names of his friends.

Eli was real glum about the wall until he decided to try to get a bird to land on his finger, with no success.

Then we got to the Washington Monument, or rather, a pond just beyond it. Not the Reflecting Pool, an actual pond.

The kids did not stand in awe of this national treasure towering over the pond. The gravel on the path on the other hand? They were enchanted.

Washington Monument, doesn't care

Eli stands in awe of tidy taxpayer gravel pathway, pockets it.

Eli pocketed a fistful for his collection, shoving it into the pocket of his blue Puma. Laila threw sprays of it into the pond.

“CUT IT OUT KIDS,” I hollered, peering around for Big Brother. “THAT’S TAXPAYER GRAVEL.”

It was warm but shards of ice left over from a cold snap begged to be stomped on, broken apart, and thrown onto more thawing ice on the water.

“I’m tryin’ to crack it!” Eli said real wild-in-the-eyes like.

We moved on.

No more sanctity. Mommy was tired. So, so tired.

“And here we have George Washington’s penis,” I told Mark. “GO AHEAD KIDS AND HAVE A RUN AROUND NOW!”

The kids sprinted around the yellow grass encircling the monument, playing a game called ‘Evil bus driver,’ inspired by the bus ride to the monuments. Inexplicably. The driver on the city bus was very nice.

Laila shared that, in her opinion, bad characters in stories are more interesting. I told her I had to agree. She leads all sibling dramatic interpretations, and therefore, the bus driver  (Eli) would be evil. And she would be just the girl to stop him.

‘ol George is undergoing maintenance “indefinitely,” according to a sign.

The elevators need fixing. I bet. Well, it wasn’t happening that day. Government shutdown!

The bookstore at the base of the monument was open during the shutdown.

The bathrooms?

“Closed due to the shutdown,” so reported the clerk.

OK, government.

You do you.

We headed home.

 

 

 

 

 

 

 

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It’s Christmastime.

And my mood swing on wheels has arrived.

My family made it from Oklahoma to Maryland.

I don’t think I understood how leaving ahead of them, being away just shy of eight weeks, would thrash at my heart. But it did! And it hurt! And it made me cry under my hood on trains among strangers and listen to podcasts about other peoples’ depression while I wondered if mine had returned with a vengeance, readying to crush me.

I’m not sure it did, now that they are here. I’m not sure I hate Christmastime as much as I just said I hated Christmastime roughly five minutes ago.

I think I have to accept that this time of year is going to make me sad and happy, every year.

And I’ll probably be leaning on my family and friends to get through it.

Like – my friends Megan and Will, for instance. Did I mention I have built-in friends who live a mile away? No, I neglected to mention that. Too busy wallowing.

A week ago Saturday they yanked me out of my cocoon of sadness. I’d planned to stay in it and make vegetable soup and cry tears into the pot as a salt substitute. They forced me to go see a Christmas light display. And it was, dare I say, fun. And Megan and I determined Georgetown was not so kid friendly. And that the perma-disdain on some neighborhood faces is pronounced to the point of unintentional comedy.

So, there have been literal bright spots in an otherwise gloomy season.

Somehow my family’s mood swings make my own tolerable.

My mood swing on wheels has returned to me and my children are not so sure about this house.

Our old space wasn’t huge  at 1,300 square feet. But now we’re down to 900. For four people.

“WHERE’S THE UPSTAIRS MOMMY?” Eli asked.

“There is none, buddy.”

“I DON’T LIKE THIS HOUSE MOMMY!”

He furrowed his brow and stomped around, flinging here and there a pair of keys.

“I GOTTA LOCK BOX MOMMY WHERE IS IT?

It is in a shipping container on its way to our new house, I told him.

He picked up the keys and threw them into a metal Lincoln Log container. It emitted a tinny clang. Unsatisfied, he kicked it for good measure. A deep gong rang throughout the tiny house.

Laila was no more impressed. She’d been nonchalant about the move.

But after walking into the house and giving it a cursory glimpse, she sat down on one of the few pieces of furniture scattered around – a gray midcentury rescue chair.

“I don’t have any friends,” she said. “I’m scared to start school.”

“You’ll make friends, sweetie. And we’ll go with you and show you your new school. I know its scary but we will help you get through it.”

I pulled her onto my lap and gave her a squeeze. Her tummy hurt, she said, frowning.

Then Mark and the kids agreed the kitchen smelled bad.

Which was weird- because I can’t smell anything at all in there, but vaguely remember thinking the same thing upon move-in.

Laila perked up. She put on a string of performances that included a rap about a Tic Tac, followed by a competition of dueling animal impersonations, followed by a game of beauty salon.

“Laila, you’re really handling the move like champ, but if you want to be sad, it’s OK. Mommy will always listen.”

“We’ve just got to move on, Mommy, she said. “Everyone we left behind, they’re in my heart.”

This morning the kids noticed our new house lacks a fireplace.

“Santa won’t find it,” Eli said.

We made one out of cardboard and poster paint. (Thx for the poster paint grandma and grandpa!)

“Are you sure he can get in there?”

“Yes, Eli, he’s going to turn it into a real fireplace like magic,” Laila answered, turning to me.

“Mommy,” Laila said, dropping her paint brush. “I feel sick. I’m gonna throw up: Can I throw up?”

“Sure – and you don’t need my permission.”

pitter … patter … hurl

This time of year will never be perfect. Maybe the problem is not this time of year at all, but what we expect it to be.

It’s that time of year.

Christmastime.

And it’s not for everyone! In fact, I’m writing this for people who don’t love Christmas.

I kinda do. And I kinda don’t.

And this year it’s more like – don’t.

I recently wrote about depression and anxiety. Then, I buttoned it up, information-wise.

I’ve been avoiding the topic, secretly wondering if my depression and anxiety have managed to return like magic with jazz hands. I haven’t felt like admitting that. Nor have I felt like writing a word, because depression saps me of creative energy while simultaneously and confoundingly energizing the negative voice that spurns every word I write, every move I make. And I know the road to hell is paved with adverbs, and those were adverbs, right? And I know I could do without it being dark by 5 p.m., Eastern Standard Time! Just like I know depression and anxiety, above all else, make no fucking sense.

I quit journalism and moved to the Washington, DC ahead of my family, who was still back in Oklahoma City until just a few days ago, wrapping our lives up. Well, they’re all on the way to the DC area now, to start, yet again, anew. And it’s exciting. And my job is so cool, and I get to be a professional activist and my co-workers are just incredibly capable and kind.

So why t.f. am I sad?

And am I sad? Or am I depressed? I can’t tell the difference this time of year.

There’s so much change afoot. When I’m not working, when my mind is unoccupied, often on my lonesome commute, waves of sadness knock me over. Is this a natural reaction to stress?

Is it normal to always stand against a pillar and exercise situational awareness because you think you’re going to be pushed onto the metro tracks? Is it normal to wonder each day which white dude is gonna bust out an AK out of his trench on and mow us all down? Ummmm……

To make myself feel better I’ve been listening to a new podcast called the Hilarious World of Depression. There, depression is called Clinny D, a phrase I will immediately adopt, with credit to the podcast.

The podcast entails comedians and other artists talking about depression. All of these funny, successful people are suuuuuper fucking sad.

I don’t remember the part in my life where I picked up Clinny D in Oklahoma City and told it to come along in my luggage to Washington, DC. I thought I left that all behind.

Nope.

Not to live in the past, but I’ve totally been living in the past. Because without my children here to keep me busy, my mind is unoccupied and wild, and it wanders, sometimes traveling to its dark little nooks. If ruminating were an Olympic sport I’d have eclipsed Michael Phelps long, long ago!

After Eli was born, we were in the NICU for 30 days, including on Christmas.

My mind has wandered back  there in these last few days, revisiting extreme isolation and sadness. And I still remember taking breaks from the hospital to run errands, affronted by mother after mother with healthy baby after healthy baby after healthy baby ensconced in car seats perched on shopping carts.

I’d think of those healthy babies and lucky mothers while looking at my empty bassonet.

Would my son make it there, to the bassonet?

Or would he die an infant?

I didn’t know.

This time of year is when the phone rang and we learned Eli had a deadly illness.

This time of year I was in the NICU sitting next to my son in the incubator when the dumb fuck nurse loud-talked with the dumber-fuck lab tech and I overheard them say my baby had CF and his sweat test results were off the charts.

The lab tech sounded excited about how obvious my son’s CF was, and I still remember the sound of his scientifically satisfied chortle.

This time of year that nurse left the room and told me that, yep, Eli had CF, and then she didn’t call in a doctor.

A candy striper walked in and asked if she could take my son’s picture and I burst into tears, and I will never forget what she said next.

“Being here is traumatic, and they forget that.”

Yes they sure AF do.

She sprinted out the door and got a doctor to explain to me what the hell was going on.

God bless hospital volunteers.

Then m mind wandered to the present. I thought about other families in the NICU this time of year, how they must feel forgotten and sad and robbed of the life they thought they’d have, how their babies may never make it out of there.

I called my sister and informed her of my NICU flashbacks and empathy binges and she instantly diagnosed me with PTSD. She has no clinical background, but I fully accept this diagnosis.

This time of year I’d love to talk to my own mother about this. This time of year I feel her absence more than other times of year. This time of year I think of that time we had Christmas in August, because we all knew she was about to die.

What kept me afloat this week, because I’ve been too doomy gloomy to shop or partake in Christmas cheer / commercialism was to plot a little plot to stop my head from returning to the past.

My extended family donated the money we would have spent on each other to give seven foster children a Christmas morning. And, with what’s left over, I’m going to send hot meals to Ronald McDonald family rooms – the living room-style break rooms for families within children’s hospitals – in Oklahoma City and Washington, DC.

Not in December, but starting in February, when those in the hospital become even more invisible to the rest of us, who will have moved on to weight loss schemes and spring break plans.

This time of year I think back to my breaks in that hospital family room, to the little gifts and meals that made our hospital stay better. I went to write in that family room. I could breathe in there.

The other silver lining of this time of year is that we decided when Eli was hospitalized on Christmas to make every Christmas day like the end of “A Christmas Story,” and go get Chinese food.

I think I’m gonna re-up the effort to find a professional to sort it all out. And another one to keep tabs on my medication. Because, oops, I did that thing again where I pretended I could just take a pill and then sadness-or-is-it-depression-and-anxiety would go away and leave me alone forever. It didn’t

GUH. This time of year.

Dear little one,

I am your mommy and I’m not prone to gushy outbursts like what will directly follow. No, I hide behind humor and sarcasm, much of the time. But today I’d like to make an exception.

For your birthday.

You are my 5-year-old boy today.

I can’t help but think back to your joyous (pain-free, drug-addled, thank you modern medicine) birth. I can’t help but think back to the chaos that followed exactly 14 hours later.

We didn’t know what was wrong. We didn’t know if you would live or if you would die. Nobody had answers. You were so small. They handed you the teeniest blanket of blue fleece and itty bitty circus animals and put you on the helicopter.

There were surgeries, and tubes and confusion. There were 30 days in luxurious accommodations, the NICU. Every breath from every baby in every moment held the promise of life or death.

There were absent mommies and daddies and lonely babies there. There was a woman singing a Native song to her dying baby son. You made it through when other babies weren’t as lucky.

We don’t care that you came with a little something extra, those misbehaving cells of yours. You are not that. You are you.

You are gap teeth and cheeky smiles and cuddles for days and pizza cravings and rough housing, not to mention a hug magnet. You are a bottomless well of empathy full of glittering, fresh, cool kindness to offer others because even this young you know what suffering is.

Your body is little but your heart is big and I’m proud to call you my little one, Eli. My little one. My buddy. My son.

Love, Juliana, your mom

Processed with VSCO with a6 preset

In the spirit of Christmas, I give you the following form letter for parents whose children want an LOL Surpise! Big Surprise, like my daughter, Laila. As far as I can tell, this toy is sold out everywhere.

LolSurpriseBigSurprise

But will she be glum come Christmas morning? Of course not. She’s about to receive a note from the North.

Santa’s helpers: No, don’t go on Amazon and pay double from the profiteering a-holes. Don’t stake out Toys R Us. Just move on, with the help of this handy, dandy letter from Santa Claus! Helpers need only write in the name of the recipient.

I investigated, and, as it turns out, there’s been a supply chain issue. The glittering golden globes triggered an avalanche before tumbling into the Arctic Ocean.

Love, me.

P.S. The YouTube video is below. It is excrutiatingly long. It makes me want a large margarita. The end.

Download a letter here:
NoLoLSurpriseBigSurpriseNoProblem
Here’s what it says:
NoLOLSurpriseBigSurpriseNoProblem

Hello. This giving Tuesday, I am asking for your help on one thing on behalf of my son Eli, who has a fatal disease called cystic fibrosis. It’s not cash. It’s time for a pair of phone calls.

For giving Tuesday, please make a phone call to your senators on behalf of medically complex kids like Eli.

Call your senators TODAY 202-224-3121 and tell them GOP tax and budget bills will hurt children with complex medical needs like my son Eli in the following ways:

1. 13 million people will lose insurance coverage.

2. For millions with insurance, premiums will go up 10 percent a year.

3. It ends a deduction for high medical expenses.

4. Billions less in Medicaid spending with more than $1 trillion in cuts forecasted in the GOP budget. NOTE: Half of children with cystic fibrosis are on Medicaid.

There is no time to waste. The GOP is ramming its bills through and wants the Senate to vote this week.

Your calls are especially important in the following states, where GOP senators rightly have their doubts about the harfmul plans moving forward.

OKLAHOMA: (!!!! Eli’s home state!!!): James Lankford

TENNESSEE: Bob Corker

WISCONSIN: Ron Johnson and Steve Daines

MAINE: Susan Collins

ARIZONA:John McCain AND Jeff Flake

KANSAS: Jerry Moran

Have a heart for medically vulnerable children and make these calls.

Our son has a terminal illness and life is tough enough.

My family thanks you from the bottom of our hearts.

 

CALL NOW: 202-224-3121

elih

 

I am in an airport and I’ve fully turned into my mother. I am wearing pennyloafers. Mine happen to be silver. But still. Penny loafers. Is it 1994? I ate fries for breakfast. And a burger. I’m calling it brunch. Another Gayle move. It happened to be Smashburger and not a kamikaze mission into Mickey D’s. But still. I’m thinking a lot about my mom this week.

She died in 2010 of esophageal cancer. I read a post by a young man with CF yesterday about the ways having an illness makes you thankful. And I found myself thinking about the same thing. Here are 4 ways I’m feeling really thankful right here right now at the intersection of life and illness.

1. Eyes wide open to the present

Because there have been times I’ve experienced an overwhelming darkness, I appreciate the light a lot more. (Thanks, Wellbutrin!) Depression is like a screen that blots happiness from your brain. Anxiety is its shitty BFF, loading worry onto a conveyer belt twisting around your brain and heart. This is how I know I’m feeling all the feels but they aren’t pulling my strings. On Oct. 30 I left my family back in OKC and moved to Maryland ahead of the tribe to start a new job in a new field. I definitely got hit with waves of lonliness and sadness 10 days in as the excitement wore off (So I cried on the phone to my sister, WHATEVER).  But once I stopped being pathetic, because I let it all out and realized I had control of my emotional state, not the other way around, I forced myself out of the house to hang out with my pals in the area and meet new people. I also know myself well enough to know that if I don’ expel stress with exercise, I’m in trouble. I worked up the nerve to join an exercise bootcamp run by a former Marine. I have no name in that group other than “New Recruit.” And we had a lot of laughs and now all the muscle fibers in my thighs are torn apart from squats. THE END

2. Even with loss, you can think back to the good times

You have to train yourself to think this way or bitterness will consume you, but losing my mom forced me to look at what I had and what she continues to give me, not what I lost. Yes, I roll sans mother. I got her for a full 30 years. And after her diagnosis, we had a year and a half together. And her penny loafers are still making me smile. And her french fry obsession is still making me smile. And her propensity for being just a little bad – impulse silver penny loafer purchase here, french fries for breakfast there, is making me smile.

Gayle

Gayle, kickin’ it from the great beyond since 2010. She’s got your back 24/7.

3. Low, low standards

My standards for happiness are really low! I swear to you low standards really are the key to happiness. When something as heavy as disease is in the picture – Eli’s cystic fibrosis – what does it take to make us happy? Not much! Are we breathing? Roger that. Then we accomplished something big today. Am I wearing pants? BONUS. Mascara? Damn I look good. I mean DAMN. Are my kids fed and dressed and only five minutes late for school today? Oh my gawd we are on fire. The highlight of my day – maybe the month, maybe the year – is going to be surprising them at the airport in St. Louis, where I’m meeting my tribe and our extended family. We haven’t told them I’ll be there. In fact, I’ve been playing it up that I won’t be. MWAHAHAHAHA

Processed with VSCOcam with g3 preset Standards so low this flower made my day[/caption]

4. I don’t have time to overschedule the hell out of us

My son’s care is time consuming. So, poinsetta sale, kindly eff off.

I’ve arrived in Washinton, DC, and it’s permanent.

And now it’s Saturday morning, 20 days after my plane landed.

My family isn’t here yet, technically, physically.

I carry them all around like magic.

lailaeli

Eli is with me right now, sitting on my heart playing choo choos, for instance.

But how did this all happen?

I’ve been thinking a lot about that.

To get here, in a little suburb right outside the nation’s capital, I had to land in Oklahoma first.

That was back in 2012. Shortly thereafter, Eli arrived. He was squishy and pink and perfect, with wise dark eyes. He fussed very little, even for a newborn.

His tummy began to swell. Nurses began to panic. They put him on ze chopper.

Ze chopper?

Was that necessary for a 10-minute drive across town? I still have the bill we got a week later, made out to my one-week old son, for $22,000. And I later found out the hospital where he was born offered to drive him in one of its ambulances across town. But in a decision I was not a part of, he was instead made to wait six hours for a helicopter transport from the hospital where we wanted him to be, the only children’s hospital in the state.

Eli in the beginning

The beginning

When I learned these facts later, about the travesty transport decision that put his life at risk, our finances at risk, and that I was not a part of, despite being a consumer for healthcare, one of the most expensive fucking things you can ever buy, it hit me square on my brain.

Your son has a target on his back. He is sick. And everyone wants a fucking piece of him.

Every entity that will save my son wants to rob him, too.

New hospital, after robbing us, saved my son’s life. His doctors diagnosed him with cystic fibrosis.

Side note: It’s stunning to be told a baby has a fatal illness. There really aren’t adequate words to describe what that felt like. A mack truck? A wildfire? I grieved for the life we wouldn’t get. One that was normal, like everyone else’s, at least from the outside.

But things got better as real Eli replaced fake Eli from my mind. Caring for him has become our honor. Sometimes he breaks our hearts, asking why he has an illness, or thrashing at us and scratching at us when it’s time to do the care that is keeping him alive. Other times he is docile and cozy, laying on our chests during hours of breathing treatments with cartoons or video games. He is frustrated, screaming in anger from a deep, primal place after his stupid shaking vest knocks over the wooden train track bridge he so carefully engineered, yet again. He is funny, playing pranks, like turning the lights off when we are in the room, and keeping running jokes going for days.

Every entity that wants to save him wants to rob him, too. It hit me again at our first drug denial. We couldn’t afford the RSV-preventative drug Synagis. That was a special kind of hell, knowing a drug existed to keep his lungs safe and that he wouldn’t get it.

There was no fucking grant program. There was no fucking charity. He didn’t get the fucking drug, and then he was fucking hospitalized for five days, where there are fucking superbugs fucking roaming the halls waiting for a set of lungs like his to destroy.

Fuck that.

I shall say it again in all caps FUCK THAT.

Luckily I have pleasant distractions in my life that prevent bitterness from settling in.

Since I’ve moved to DC, Eli and Laila have remained in cahoots, attempting to trick me every single phone call, saying it’s night when it’s morning, morning when it’s night, as if they are now half way around the world.

Back to Oklahoma. Right after Eli’s birth.

I met an inspiring group of people with our local Cystic Fibrosis Foundation (Love you, Celia), and they invited me to Washington, DC for a volunteer leadership conference.

The event was incredible, and it left me wanting to do more. Later, I would, locking down about $70k in grants for drug research for the foundation over the next three years.

But at the event,  at this big forum in a conference room, my son having just been denied a drug, I sent a big, obvious question up to the front of the room about drug costs. It was along the lines of – so we’re giving you all this money, where is the guarantee we will be able to afford the drugs?

The CF Foundation leaders totally ignored my question.

It pissed me off.

Back in Oklahoma, I’d made a friend named Brianna. She has two littles. She is really smart. Her ideas are really fucking good. She is also a reporter. She is a boss

She did this smart thing, walking down one of Oklahoma City’s arterial roads. it is really difficult to walk anywhere in Oklahoma City. There are no sidewalks. She walked anyway and talked to people along the way, and then she wrote about it, and then she gave a speech about the walk, which I found inspiring.

Also, there was free wine.

The group putting on the speech was looking for speakers to talk about what inspired them. I had too much free wine and I signed up for the next round.

The speech was to be about something I was passionate about. But anger is passion, and I had lingering anger about the cost of the drug Eli couldn’t get.

Looking around, I didn’t see anyone in the cystic fibrosis commiunity raising the alarm about the cost of our latest drugs, which were a lot more pricey than Synagis.

The most exciting and groundbreaking drug, from the Boston-based company Vertex, Kalydeco, approved in 2012, gave all of us in the CF community hope. It had been announced at 376k per year, which stunned me. I mean – the CF community had paid for this drug. The company had used tax incentives for orphan drugs to create it. Where do they get off putting that kind of price tag on our drug?

The phrase that comes to mind is “Drinking from both sides of the trough.”

Where do they get off threatening my hope?

What’s shitty is – we’re all desperate for our children to stay alive. We would do anything, pay anything. We are busy as hell, too. CF care takes at minimum 2 hours a day for Eli.

We are occupied and desperate, myself included.

We are beinge extorted. And it’s easy to extort us.

On principal, I objected.

I gave the speech. A petition I designed to go along with the speech took off, eventually gaining 130,000 signatures.

What good is a petition on the internet? It’s yelling in an echo chamber. So what?

I wanted to give it to the company. I wanted a sit down.

They oblidged.

Vertex first offered to come to Oklahoma. I told them no. I’ll come to you.

I didn’t want them to spend money on me. I didn’t want a steak. I didn’t want to be pals.

I sold T-shirts instead so I could take Eli and deliver it, without taking their money or gifts.

We put our petition in a yoga mat and got on a plane. I put Eli in a Hamilton costume.

Shameless:

elih

Our visit – futile and frustrating as it was – got a little media coverage.

I got a phone call.

His name was David M. I googled him. He was an ‘M’ in a mysterious DC firm named for first letters of the partners. He divulged he’d be retiring soon. He told me he had  terminal cancer. He told me $450,000 worth of drugs had pumped through him to stay alive.

He told me he knew patients who weren’t so fortunate as he, that were dying because they couldn’t get a hold of the drug Revlimid, or others. They couldn’t afford it. So they died. Quietly and in the shadows.

You hear from the sick in the shadows sometimes. GoFundMe is like their last gasp of fucking air.

He was starting something new and calling it Patients for Affordable Drugs. And he wouldn’t take money from drug companies, or any other industry, in going about this activism, which no one else was doing, because everyone takes pharma money. Everyone is, therefore, muzzled.

No one is truly speaking for patients in the ongoing drug cost tragedy.

We were same page, David and I.

I helped them launch and gave them advice for eight months on a volunteer basis.

I was really down after that first stupid, futile meeting with Vertex. My smart friend Brianna with all the ideas told me to buy stock in the company and become a shareholder activist.

So I did.

My new friends at the patient group even flew me back to Vertex so I could finally get facetime with the CEO, in the boardroom.

He gave me more runaround.

A job opened up at P4AD and David hired me.

I put some stuff in some suitcases and got on a plane. I’m in DC now.

My family is still in Oklahoma, but they are here, traveling with me by way of my heart.

I’m glad to be here, because greed keeps trying to kill my son. Not just along the lines of drug costs.

The GOP tax plan is a greedy hot mess that will hurt the sick. If it were a plan from the Dems that hurt the sick, I’d say the same thing. It happens to be from the right. And I’m opposed to it because it’s wrong to do things like take away deductions for medical equipment from families whose children have incredibly complex medical needs.

littlelobbyists

I’m connecting with other activists now who are independent and who want to work with both sidea of the aisle on drug costs.

My group may be small, but we are good at making connections with others who refuse to be owned and muzzled. We are good at telling stories.

And little people have big stories to tell. They maybe just need someone to listen. Someone to deliver the messages to the right places and to the right people.

That’s what I’m trying to do now.

I’m here trying to occupy the space between yelling on the internet and getting something done.

And what I’ve found in a few short weeks is that getting something done is going to be infinitely harder than yelling on the internet. My brain needs to catch up to my loud mouth. I’m humbled by how little I actually know. I’m humbled by the people I meet who know so much more.

I only know now that compassion is going to win. Greed is threatening the livelihoods, lives and liberty of the sick.

Here is a good place to be. Here is a good place to fight.

Eli is sitting on my heart and his little fists are up. He’s ready. Me too.

 

 

 

Eli loves school.

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Processed with VSCO with a6 preset

He brings his teacher random presents: zinnia heads (always missing the stem) from the garden. Paper-duct tape-popsicle stick sculptures. He brings us stories: About his new best friend Hank, mixing it up on the playground. He comes home on occasion with his school shirt covered in red dirt. He’s not supposed to dig, but manages to evade the playground monitors like some hole-digging ninja.

His schoolmates, in turn, love him back. When we went to the fall festival, Mark and I noticed that something kept happening. Tiny people kept ambushing Eli, yelling “EYI!” moments before aggressively bear hugging him, and zipping away. He was getting hug bombed.

And yes, it was just about the cutest thing I’d ever witnessed.

This week we made his “All about me” poster for school.

We pasted pictures of the family on our various adventures: Digging for crystals in the salt flats, us at the Grand Canyon, in front of a “cabinet” (kid speak for cabin) in Medicine Park, Okla. (a real frontier town!). His current career goal: Builder. His favorite color: green. His favorite food: chicken noodle soup. Chicken noodle soup, really Eli? It was the last thing he ate.

I wondered: Do we include a couple of photos of the care we do every day?

Do we put cystic fibrosis on the poster?

I asked him.

He said it would be OK.

I pasted the photos in the lower left hand corner. A part of him, but not centerstage.

Under dislikes, I put a photo of him receiving a haircut from daddy. He wore a concerned glance. I kinda put the photo of him in his vest near the dislikes, too. As of late, Eli has declared war on his vest machine.

Some mornings he is docile, but others he wakes up, angry. A jarring, childhood awake-asleep anger that can’t be assuaged. So imagine putting a kid on a medical device in the middle of a fit like that. That’s what we did.

It was 6:15 a.m Wednesday.

It took both Mark and I to get him in the thing. He was screaming at us and scratching at us, punching at us and kicking at us. And I just let him.

Eli is strong. I had to hug him from behind, like a human arm and leg clamp, and try to white noise him off his ledge.

Shh Shh Shh. It’s OK, buddy. Shh shhhh.

NO IT’S NOT MOMMY! he screamed, writhing and vibrating and occasionally coughing.

He’s started to cough again, about three days ago now.

All of us have a small cold, but I can sense his getting worse, not better.

The vest moves that shit outta there. Otherwise the gunk would sit in his lungs and draw or worsen an infection.

Then I said something stupid.

“I’m sorry Eli. It’s not my fault, Eli.”

YES IT IS MOMMY.

He was right. It’s a genetic disease. I gave it to him.

And my heart broke, again.

But, Human clamp lady needed to move on to a new tactic: distraction.

“Do you want a TV show buddy? You Tube?” I whispered in his ear. “Netflix? How about a video game on mommy’s phone? Video game? Which one?”

We went on like this for what seemed like an hour but couldn’t have been more than three minutes.

Finally, I hit the jackpot.

“Cookie. Do you want a cookie?”

His whole body relaxed. I unclamped.

He scooted up to the corner of the couch, wiping his tears.

He paused, looked at me.

“Two cookies, mommy,” he said in a small, but determined voice.

“Two cookies. You got it buddy.”

This is not the story I would tell his class the next day, when I stopped in for Eli’s “All about me” week to read a book to the class.

May I just pause and compliment the teacher, Mrs. S.

Naturally, I was running late. And I do mean running. I work down the street, a few blocks from the school. I was running in heels. I sent a desperate text.

“Be there in five!”

I walked breathlessly into the class, and there that group of pre-K students sat, perfectly still, completely quiet and attentive, on the rug, waiting for me. Incredible work, Mrs. S. Anyone who has ever tried to wrangle a group of young children needs to pause and take a moment and be in awe of that not insignificant accomplishment.

Eli hugged me. He sat down with the group and put his head down and covered his ears.

He told me I could read the book “All about me,” which is about a day in the life of a girl named Patti with cystic fibrosis. The book is mostly about regular kid stuff, with treatment and hand washing and extra calories thrown into the mix. It’s a really sweet book.

Now Eli seemed embarrassed. Had I made a mistake?

Too late to turn back now.

The ABC rug full of cross-legged littles and their wide-eyed faces before me needed a story.

I read the book.

“Any questions?” I asked this well-behaved crowd.

About ten hands shot up.

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Processed with VSCO with a6 preset

The first boy forgot his question, or never had one. I think he just wanted to put his hand in the air.

Another boy asked about hand washing.

“Why does it get rid of germs.”

I told him that soap makes the germs slide off hands. Hand washing is the best thing to do to stay well. And it helps Eli extra, too. When he gets sick, it’s a little different, so we wash hands a lot.

I called a girl who just wanted to tell me she was Eli’s friend.

More hands shot into the air.

“I’m Eli’s friend.”

“I’m Eli’s friend, too.”

“Me too.”

“I’m Eli’s friend too!”

“I do breathing treatments, too!” a girl told me shyly.

“That’s really good,” I said. “Eli, did you hear? She does them too!”

He buried his face in my side.

It was time for me to go.

Mrs. S. asked me if anything had been wrong lately. Yesterday, Eli was sad all day.

“Well,” I said. “I am moving. I got a new job. The family’s moving in December, but I’m leaving Monday, and I think he’s upset. I’m sorry I hadn’t mentioned that yet. I really should have mentioned that.”

“Oh, that makes sense,” she said. “He did just say, ‘I’m moving,’ but didn’t explain. He’s going to be missed here. He’s really popular.”

And I wondered about that on my walk back to work.

Eli’s got a little something different going on.

Do these little people somehow instinctively know that?

Do they love him a little extra, care for him a little more, because he is a little different?

Or is he perhaps extra kind, a caring friend, because he has had his share of hardships for 4? Or is Eli just Eli, a gap-toothed kid who likes to build, mix it up in the dirt and play pranks, and their fondness for him has nothing to do with illness?

I don’t know.

But I’m so glad he loves school, and that his classmates love him, too.

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Processed with VSCO with a6 preset

 

 

 

 

 

 

 

WTFinGRAY

WTF Just Happened? The week in review (a day late).

WTF is happening in the world?

Please do this ASAP do not delay!

Please call your lawmakers ASAP and tell them to oppose the utter shit Graham/Cassidy bill. It does not support people with cystic fibrosis or sick people or the elderly. Sixteen patient and provider groups oppose the bill, including the Cystic Fibrosis Foundation.

It would institute lifetime caps, which could kill Eli. His latest drugs cost more than $200K/year people! Half of children with CF are on Medicaid. This bill limits Medicaid. And if you think the poor don’t deserve coverage may I suggest launching a search for your humanity? Include search dogs. And flashlights. Because that is cruel as hell. People with illness are often unable to work and have to rely on these programs to stay alive.

Go to CommonCause.org to find your elected officials. Please read the position statement and call for Eli’s sake.

 

Lawd.

I don’t do awards shows.

I did catch some after-tweets. Look at how sweet and classy the kids from Stranger Things were at the Emmy’s!

Amber Tamblyn says no one believes victims. She’s right. (NY Times)

A botched surgery left a barber with erectile dysfuntion. Decades later, he takes his revenge. (The Washington Post)

Who are the Rohingya? (Al Jazeera)

Myanmar’s Rohingya crisis explained(Bloomberg)

Houston church to Jewish lesbian volunteer: ‘You’re fired’ (Newsweek)

More than 80 arrested after protest violence in downtown St. Louis (SL Post Dispatch)

Maria pounds Dominica (CNN)

Live Maria updates (The Guardian)

WTF is happening on this blog?

I wrote about our trip to the Grand Canyon in Grand Canyon, Chasm of Death, Part 1. I sell words to get my family to the Grand Canyon. The Texas Panhandle disappoints us all.

I need to re-do my blog categories. I’m going to make a new one, called Adventure, which is all encompassing for our adventures, big and small. Much how the rich turned ‘summer’ and ‘summering’ into a verb ala “Buffy, where will you summer this year?” “Why, Mah-rtin, in Mah-ta’s Vinyaaayd ofcaaahs.” I have turned adventure or adventuring into our action word for poor people/middle class/livin’-on-the-edge people activities.

WTF are we watching on Netflix

First they killed my Father.

Holy. Motha. Well-told, poingnant and from the eyes of a child, Angelina Jolie’s movie based on the book is gonna bowl ya over.

It’s sad as hell. Be prepared.

To counterbalance, I started watching Portlandia again. At first Portlandia annoyed me. Now I can’t stop laughing. Go fig.

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