Eli discovers war, shutdowns

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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This time of year, part deux

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.

Dear little one, on your 5th birthday

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

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Eli finds inspiration…in county lockup

“MOMMY LOOK!”

“Nice building, Eli! What is it!”

“JAIL!”


“Oh yes, Oklahoma County jail! The orange and black, I see it now! Why…jail?”

“I SEE IT IN THE CAR EVERY DAY MOMMY”

“Painting another one, are you?”

“MOMMY GET THE TAPE!”


“And another one?”

“MOMMY HANG IT UP!”

“Want to paint another building?”

“NO I LIKE JAIL”

WTF Just Happened? The week in review

WTF

It’s Monday, Aug. 28. Just getting caught up? Here is the news you can use:

WTF is happening in the world

I went into hibernation mode this weekend. I missed a lot, like:

Hurricane Harvey unleashes on Houston

Catastrophic flooding is expected through Wednesday

Surreal drone footage

When disaster strikes, con artists move in

Don’t get scammed in the wake of this disaster. (Consumerist)

Tons of people are helping in Houston, including lots of Oklahomans, who are kinda good at disaster response

People are crying out for help on social media

A reporter stopped reporting to help save a man

WTF is happening on this blog

I started writing about my own mental health.

Here is my mental manifesto.
I landed in the ER with a panic attack.

BTW switching meds is no joke.

I’m feeling much better after two weeks on Wellbutrin that followed six years on Zoloft and a whole lot of running.

I’m nobody’s guru, but I’m going to keep writing about my own experiences.

I have heard from lots of readers who have had similar experiences. A few said they felt a lot more ‘normal’ now that I owned up to my depression and anxiety history!

And I say – let’s keep making mental health conversations normal. Let’s defeat the stigma.

It’s literally killing us.

If you are hyaving thoughts of suicide, the National Suicide Prevention Hotline is 800-273-TALK (8255).

If you have questions about mental illness, call the National Alliance on Mental Illness help line: 1-800-950-NAMI (6264) or info@nami.org

The NAMI HelpLine can be reached Monday through Friday, 10 am–6 pm, ET.

Watching

Old Boy on Netflix. Woooooah.
oldboy

I’ve been working hard to avoid ‘Game of Thrones’ spoilers. They are. Literally. Everywhere. I’ve watched the first ep of the new season. It’s tough as I watch this one solo. Mark is not a fan!

Reading

agoodlaugh

Laila started a book club! We are half way through ‘Little House in the Big Woods’ with only a few days left to finish by our Sept. 1 deadline! aieee!

All was well, I was pumping out Little House memes, right up until the point Pa sang a racist song. WTF? Didn’t remember that from childhood.

I sent an SOS to the private FB group and got some good feedback. I’ll write later this week about how our club is handling old, offensive terms!

My lovely friend dropped off a copy of ‘The Glass Castle’ by Jeanette Walls! I’m re-reading it as my book club got ambitious and selected two titles!

App-ing

Last week I had to take a moment and get my mental health in order. I got so many positive notes, calls, messages, texts and reassurances that I am not alone. It really shored up my battered heart. Thanks, everyone.

One of my other lovely wonderful friends suggested the guided meditation app Headspace.
(For iPhone and Android)

headspace

Thus far I truly enjoy it, having tried out the three and six minute meditations. The pleasant British voice is a bonus. I was immediately suckered into the subscription service.

I’d Googled guided meditations but the YouTube meditation voices are too much. LIKE TOO MUCH. Like Laila and I couldn’t stop laughing at one and that was not super meditative.

I used to think meditation was just a buncha woo woo, but finding even a few minutes to breathe and take stock of my thoughts and feelings has become a vital part of my existence.

I don’t remember when I started meditation, but it was some point around the time my children began holding me hostage at bedtime until they fell asleep.

That’s when I breathe in and breathe out, and focus on my breath.

It also helped me view the hostage-taking as benefit, not an annoyance. I’m a sucker for bonus cuddles.

“Mommy, is the world going to end?”

“Mommy, is the world going to end?” Laila asked on the way to school this week. 

She is 7, brudda Eli 4, and their minds are churning, ears listening, all the time.


“Well, yeah, some day , it’s likely,” I said. “Probably not today, though! What’s got you thinkin like that boo boo?”

“H. Said that,” she said of one of her little friends.

Was H. referring to escalating tensions with N Korea? Some other apocalyptic prediction? 

H.  is quite strict about her religion. 

“My God doesn’t let me celebrate birthdays or holidays,” she told Laila once, probably after giving Laila one in a stream of numerous gifts – a tiny purple painted bird house with a carefully fashioned cursive ‘L,’ Spanish baby books with simple words and pictures.

We were listening to NPR on our way to school.

“Ah, right. Sweetie, it’s not off the table, but unlikely North Korea is has the capability to fire a nuke that would hit us. World War 3 probably won’t start today. Just go to school and learn and mommy’ll let you know if something changes.”

Kids aren’t dumb. Laila has been asking about death, Syria, the police shooting scene we drive by once on the way to Saturday morning ballet, the police search choppers we hear, the homeless woman who lives in the doorway near her school, for years now.  With rare exception I give it to her straight. 

I only lied once, about the police shooting scene we drove by. She was really little then, 3 or 4. 

“Oooh it must be a parade!” I lied. There were blinking lights and bright yellow tape. 

Other than that I’ve been as honest as I can be.

 It seems this world-ending talk is coursing through the playground. 

A few nights later, Eli and I were hanging around. I was lying sideways on the bed and he was popping in and out of a wicker basket, chatting with me. 

He popped up and slayed me out of nowhere with:

“Mommy, I’m worried about dying.”

Eli has a life-threatening illness. I wasn’t ready for this.  I attempted to locate the source of his worry.

“What makes you feel that way, buddy?”

“I dunno,” he said. I probed more.

He finally mentioned A., Laila’s buddy, had on the playground been talking about dying, ala, “We’re all gonna die!”

“Do young people die?” Eli asked. 

“Yes, sometimes they do,” I said. 

He seemed to accept that. 

“Everybody is born,” I added. “Everybody dies. So every day, we try our best to have a great day.”

That was the best I could do in that moment. 

Later, I started googling ‘How to talk to kids about the news.’ One parent watched news with his kids at night. 

“No way!” Mark said when I asked if we should do the same.

“You’re right,” I said. “Way too scary before bedtime.”

Another column I found advised putting off the topics, if they pop up at night, with a phrase like, “let’s talk about that in the morning.”

I agreed there. Be honest…just not right before bed. 

It may not be the philosophy for everyone. 

Almost all of my relatives are raising kids in posh suburban enclaves. They aren’t confronted with the issues plain as day in front of us – homelessness, mental illness, police choppers, and yes, even death.

Draws did drop when on a visit north, Laila blurted out: “I probably shouldn’t tell you this…But we think the house next door is selling drugs!”

Darling, did you not get the memo? Snitches get stitches (and snitches who are bitches wind up in ditches)?

We live in the same neighborhood in which Mark teaches. He broke up his first fight of the year last week. Kinda early for the 12-year-olds to start swinging. Just some srsly weak punches and chest locking, though, nothing serious. Some of his students’  parents have walked out of their lives; teachers have adopted them. Some students’ parents are imprisoned. Some of the children are in foster care and dream of a stable family. One child wished that, in adulthood, she could get just into jail to make a family there. 

In poverty and through complicated and stressful lives, though, the children he teaches are often bright beacons of hope. The little guy whose dad and mom abandoned him is in high school, plays soccer and dreams of joining the Army.

Those children to me, are proof of a a young person’s resilience. We will keep listening to NPR on the way to school. I’ll keep answering Laila and Eli’s questions. I’d rather they get it from me than the playground rumor mill.

Tomorrow I anticipate questions about hate crime in Charlottesville. 

As Walter Kronkite used to say, “That’s the way it is.”

The first day of school 

Eli and Laila started school! 

Bonus: they get to go there together! 

Eli is in pre-K and Laila in Grade 2.

This is how the morning went:

​Here is what I learned later: 

I arrived at the school to find Eli engrossed in an abstract design he fashioned on a rubber band bracelet weaver. It wasn’t a bracelet. Definitely not a bracelet.

“Eli! What happened to your face?” 

He had dirt on his nose, having apparently just whipped up red Oklahoma earth to dig a hole with a posse of little girls. Playing in that particular patch of dirt is forbidden, but Eli managed to stay one step ahead of the playground monitors. He moves fast when dirt is involved.

I found Laila, his suave 2nd grade sister, who hugged me. Laila has always loved school. 

“We get to sit anywhere we want at lunch!” 

She sat by her sweet little friend L. , who sadly has not been her class since kindergarten. 

We got home and I tried to ferret out more details from Eli.

“I got lost,” he told me.

“What? How? Where?”

“I dunno,” he said with a shrug and a frown. “It was scary, Mommy!”

Luckily Laila remembered a few key details. 

Kiddos left the gym for the short walk to the main school building, and about a half a second  later a worker noticed he wasn’t there.

“I bet he’s in the gym!” Laila said, racing back.

She ventured into the boy’s bathroom calling his name– relaying this detail with wild gestures.

“I wasn’t suppose to be in there! I was closing my eyes!” 

And what sad little scene did she stumble upon?

Eli crying in a corner?

No. 

Whimpering in a stall? 

No.

He was sitting on the pot singing opera.

I have nothing more to add.

Shake-up: An exercise in empathy

Little buddy balanced a steamroller Hot Wheel over the mouth of a glass. He had a bulldozer atop an upturned rubber tub atop the same table. He had a grater in tenuous balance on yet another glass.

What was he doing? Imagining? No idea. We’ll call it “independent play.”

All I knew is that it was growing later. I’d procrastinated for too long already, dreading this moment, me interrupting his fun. It was time to put him on the shaking machine he wears every day for an hour.

“Time for your vest, Eli!” I chirped, bracing myself.

He screamed “NO VEST!” at the top of his lungs, bending over, as if to push the volume out of his lungs with more gusto. The chords in his neck throbbed.

“NO VEST MOMMY! NO VEST!”

Shit. Think fast mommy.

“Oooh…I know! Want Mommy to wear it first? Ya wanna see Mommy on the vest?”

My offer hung in the air between us.

If my son were green he’d be the spittin mini image of the Incredible Hulk in transition. I half expected his clothes to tear away, his muscles to erupt.

But then…

His eyes showed a flash of mischief. He uncurled his fists. Unclenched his jaw.

“Yeah,” he said. He gave me a crooked little smile.

Relief.

And so here’s what commenced.

#whateverworks.

I confronted my chronically ill son’s drug maker. Here’s how that went:

Here’s the short version of this story:

We went to Boston and received from Vertex the equivalent of a corporate pat on the head.

If you choose to read on, I’ll provide some details.

Details

Eli and mom traveled to Boston, lugging an over-sized carry-on that contained a machine called ‘The Vest,’ a backpack full of medicines and a miniature Hamilton costume for Eli, all the rest of our clothes for four days in one small carry-on, and a 20-foot long scroll in a yoga mat bag. (Yoga mat bags: perfect for those occasions where you need to unfurl a 20-foot-long 1700s-style petition on the go).

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Vertex, a major Boston-based pharmaceutical company that has come out with two inspiring cystic fibrosis drugs that cost hundreds of thousands of dollars a year, contacted us for a meeting after my change.org petition questioning those prices garnered nearly 125,000 signatures.

The petition is pretty self-explanatory:

“Vertex CEO Jeffrey Leiden: Stop price-gouging our charity-funded drugs.”

I checked with a constitutional lawyer three constitutional lawyers; my petition is protected political speech.

Confession: I had publicity photos taken of Eli. I couldn’t help myself. Look at this kid!

Here’s the least “angry-you-put-me-in-a-costume-mommy” photo I got:

eli-hamilton

We arrive at Vertex in Boston

We arrived in beautiful downtown Boston, where Eli went mad for all of the construction trucks and fire engines all over the streets.

Really, he was only there for the excavators. We rolled up to Vertex, our meeting housed in a towering and tasteful glass-paned building with an understated purple sign. In the lobby stood a sign emblazoned with the words “All in for CF.”

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A reporter and camera-man stood there in the lobby, too. Wasn’t expecting that, but I had e-mailed The Boston Globe’s STAT team ahead of our visit, just in case someone might care that we were there to mount a protest, mom and mini-Hamilton and my side-kick Amy, my best friend, who lives in Texas and who I hardly ever get to see anymore. Eli had taken to Amy, quickly developing separation anxiety every time she left the hotel room or otherwise got out of sight. “WHERE’S COUSIN AMY?” he’d cry out. Little Eli’s voice had one volume setting this trip: Loud.

That’s OK, because we were in town to spread a message: Compassion is greater than greed.

We got a little write-up in one of my favorite a.m. newsletters, The Morning Rounds. I send out a few Tweets, and there stood the camera crew. I gave an interview with an overview of our purpose and we checked in at the security desk.

Smiling Vertex minders met us in the lobby – I think there were three, maybe two, public relations people, to escort us up the elevator. I gave Eli the petition and started snapping pictures. When we reached our floor, a serious Vertex lawyer informed us of a no-camera, no audio policy within the building.

“C’mon,” I said. “I’m his mom. Look how cute he is! I have to take a picture!”

Then we agreed to shut it all down and I busted out my notebook.

I’d asked a number of times but was not told in advance of the meeting who I would meet. I only knew it would be two public executives of the company but not CEO Jeffrey Leiden, the subject of my petition, as he was booked the month of October, or so the story goes.

“Who am I meeting?” I asked.

Two public executives: Jeffrey A. Chodakewitz, the Chief Medical Officer, and David Altshuler, the Chief Scientific Officer, I was told.

I prefer to know something about people before meeting them, but here I was going in blind.

Curious.

Eli, flanked by the lawyer, three PRs and Amy marched into the conference room as I suppressed my iPhone camera trigger finger.

Inside the room, Vertex had arranged a nice lunch spread of sandwiches, sodas, and chips, and mac n cheese for Eli. There were coloring books, too. Thank goodness for “COUSIN AMY” the Eli wrangler.

I met another corporate communications employee and a government relations employee. Altshuler, an affable fellow, showed Eli that an entire wall was a dry-erase-friendly canvas. The atmosphere was pleasant and banter friendly.

Then we unfurl a 20-foot long petition on a conference table

I sat at the head of the conference table and set about the task of unfurling my petition, as Eli had abandoned our mission for the dry-erase wall.

Down the table it went. And out came the second section, which tumbled onto the floor.

Mr. Altshuler asked me how I’d printed it out.

“I’m a very resourceful person!” I responded.

I’d wanted to wring more time out of life to prepare for the meeting. I had much more to read, to learn, to understand. But I’d done what I could in advance of our trip.

We’d spent weekends since July packing T-shirts that paid for the trip. I work full-time. Mark works full-time. Eli’s disease care takes a good 20 hours a week. I’d taken Laila camping with her Girl Scout troop two days before we left for Boston . A damn pack of howling coyotes kept me up all night, I kid you not. And my God, there is something particularly terrible about trying to sleep in a sleeping bag as an adult. We returned, Laila and I, covered in dirt from digging for crystals on Oklahoma salt flats. I showered, packed, collapsed into bed, got up and got on a plane with my son.

Anyway, my point is, I had little time prepare, but only one question anyhow, and it was more like a statement.

My one request

Here’s what I said, if memory serves me correctly, since we were banned from recording, even in the name of accurate note taking:

“One hundred twenty five thousand people believe you are gouging our drugs. They think this company’s greedy. Tell me why we are wrong. Use numbers.”

Here’s how I remember what happened next:

Mr. Altshuler started talking about why he came to work every day, and a bit about his history. He’s quite new, about 18 months in at Vertex.

I appreciated the info, but suspected he was following a corporate script.

He’d pivoted to bullet points.

I spent a lot of time after that trying to pin down some numbers, since I was there for data that supported the usual claims: research and development is expensive. We have to charge this much to continue our work.

A few times, Mr. Altshuler mentioned there was a lot of data publically available. And he’s right. The company filings with the Security Exchange Commission contain quite a lot of information. As I said, I’d gotten through a lot, but not all I wanted to read ahead of our meeting.

It took a lot of doing to pin down from the team how much they had invested in the drugs.

The main numbers I received were from the corporate communications employee.

The company has existed for 27 years. It has produced three drugs. That’s taken a lot of failure, offered the CMO, Mr. Chodakewitz, and through failures, the company learns. But failing and learning is expensive.

I get it.

I took a moment to tell the executives that I knew how different Vertex was. Founded by pharma cowboy Joshua Boger, a brilliant refugee from Merck, it’s taken risks few companies would dare to take. The company is aiming high, going for cures and discoveries that aren’t exactly safe bets.

I know and appreciate that very much about Vertex. Mr. Altshuler mentioned that’s one of the reasons he came on board. The company is willing to take risks.

Circles and question marks

We went around in circles for a while as I tried to get a figure on what it takes dollar-wise to get a drug to market.

It went round and round until I finally said, “Are you saying there are no figures that exist on how much it took to create your drugs?”

The executives deferred to the corporate communications employee, who told me there is an accurate estimate from Tufts University that it takes about $2.6 billion per drug. The figure $9 billion was thrown around, too, as a ballpark for what it took to get Vertex to create three medicines: a hep C med that is no longer on market as Solvadi’s Gilead came around; Kalydeco, the $300K+ per year drug  ($376,000 per year retail) approved in 2012, the year Eli was born, that helps a small number of people with a different version of CF than what Eli has; and Orkambi, the $259K/ year drug approved in 2015 that could help Eli.

I threw out quite a few follow-ups but my notes on each question tend to end with: “?”

As in, question not answered, so time to move on to the next.

Toward the end of the meeting, Amy sensed via her body language-reading abilities that the corporate communications and government relations employees were getting annoyed. She couldn’t see their faces, but they exuded irritation as they turned toward each other like I was taking up too much of their time.

I didn’t notice. If I had, I wouldn’t have cared. I’d lugged my son, his vest, his costume and my petition half way across the country to ask these questions in person.

The executives apologized, since their time was drawing short, but I kept talking.

One of the last questions I threw out was about a scenario that bothered me a lot.

It happened in 2014.

Explain Arkansas

Four Arkansas cystic fibrosis patients required Kalydeco, the company’s signature discovery, to stay alive.

Medicaid refused to cover it, and the matter went to trial.

Following a two-year court battle, Medicaid lost; it was forced to pay.

Buried deep in a 2014 Wall Street Journal article is a tid bit that has gone widely unnoticed for two years.

I noticed.

During the trial, Vertex refused to provide the medication to the patients, who were severely ill. It’s right there in the 2014 article, just about at the point any reader would stop paying attention, and reported before Shkreli and Darapim, before Mylan and the Epi pens, before anyone cared.

I asked the execs to explain how that decision was made.

After all, “All in for CF,” the sign in the lobby said.

This alarms me, as a parent, that the “All in for CF” company let these dying patients languish as it waited to get paid.

My son could get sick, and as entities argue over who pays, his health could fail. He could die waiting for medicine. It’s a totally plausible scenario, the way the wind seems to be blowing.

The Arkansas scenario, the potential for it to repeat, it justified why I did all of this.

A pre-emptive strike on the struggles of future Eli. Orkambi, a two-drug combo that bumps lung function 3 percent in some, not at all in others,  costs $259K/year. What are they going to charge for the 3-drug combos?

Vertex has promised grant program help for U.S. patients, but I disagree any patient should need a grant to cover a drug.

I object to grant programs, which have failed my family before

And grant programs have fallen through for us before, with another drug, Synagis, by another company. Synagis prevents a severe type of cold called RSV. My insurer refused to pay for the drug for Eli in 2013 and the supposed grant program wouldn’t cover the drug either.

The soul-sucking insurance battle got us nowhere. It crushed me. Hopeless, I didn’t even bother to ask for the drug in 14/15 or 15/16 during cold and flu season. Then my son got RSV and went to the hospital for five days this January, scared, crying and begging for us to take us home, subjected to needle stabs and invasive tests and God-knows-what bugs that live at hospitals. And then we paid another thousands-of-dollars out-of-pocket tab, our third big tab in three years, all when a drug existed to prevent exactly that.

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Eli pumping antibiotics after his RSV bout

Arkansas, though. Those patients were on the brink

Back to the meeting, back to the question: Arkansas. Explain that.

What followed, as I recall, was some muttering and looking down.

Amy remembered the corporate communications employee saying something like, “Things are different now.”

Jeffrey Leiden, the subject of my petition, brought home nearly $95 million between 2010 and 2015.

Here’s a little run-down on the other execs’ compensations:

VERTEXsalaries

Executive salaries are easy targets. How about the Vertex board members, who hold part-time positions? How much money do they make?

It’s a lucrative deal. In fact, Vertex board members are the second-highest paid among all companies in the S&P 500, according to a report released October 5 by Equilar, a Redwood City, CA-based board recruiter and executive compensation consultant, the enterprising Arlene Weintraub reported.

The median salary of a Vertex board member, who again, works part-time, is 1.23 million per year, reported Weintraub for industry publication Fierce Pharma.

But, shrug, they just didn’t have the money to give compassionate use medication to the four dying patients in Arkansas who suffered horribly without it for two years.

I didn’t think of it in the moment, but afterwards, I contemplated:

Where was the Cystic Fibrosis Foundation while those women were dying awaiting drugs? (???) (!!!)

In November of 2014, the same year those sick patients suffered as entities fought over who paid, the Cystic Fibrosis Foundation, the charity that feeds Vertex millions of dollars to stoke research into this rare and fatal illness, sold the rights to Kalydeco to a hedge fund for $3.3 billion.

But if I’m not mistaken, the women languishing during the trial didn’t get Kalydeco from the CF Foundation either.

That would suggest no one at the foundation took a stand for them.

So who is going to help us, then, the next time this happens?

It appears we’re on our own.

This will keep happening

And it will happen again if nothing changes and our medication costs keep rising. Insurers are going to find every reason not to pay. During those battles, people will get sicker. People will die.

You can point fingers one way or the other, but either way, in the end, suffering people will only suffer more.

I thought the point of medicine was to ease human suffering.

Silly me.

Am I missing something here?

In conclusion, my meeting accomplished nothing.

I’d love to tell you otherwise, but I can’t.

There were no promises made, no decisions adequately explained.

I learned the company plans to expand its technology to other disease areas. Multiple sclerosis. Cancer. Neurological disease. Sickle Cell anemia. It’s as exciting as it is terrifying

Because to hold up life-saving medicine like carrots in front of the sick and dying, just out of reach, is cruel. That’s what happened in 2014, during the Arkansas trial. For two years.

It’s so cruel it should be criminal.

How is it not criminal?

And this will continue, unchecked. Society doesn’t care. We’re rolling over. We’re half dead. We’ve given up. It makes me sick.

I’m sorry to report it, but that is the conclusion I reached.

I accomplished nothing.

I’m sorry.

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jimmorinpharma
(Used with permission of James Morin of the Miami Herald)

Dragon mom gets a new nebulizer/ Eli gets a cold

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The notorious e-Rapid

Nine months ago we got a new nebulizer that was supposed to cut Eli’s breathing treatment time down.

Right now he inhales a medicine called Pulmozyme once a day to bust up some funky stuff his lungs with some science. Pulmozyme is supposed to reduce lung infections by about a third.

The PARI eRapid, straight out the box, worked poorly.

“This piece is more like the e-slow!” we exclaimed.

A Pulmozyme treatment on the alleged “e-Rapid” took a minimum 15 minutes for him to inhale, and as time went on, a half hour or more.

For whatever reason, it took us nine months of suffering through slow treatments to finally take care of the nebulizer issue and call the nebulizer’s maker to request a replacement

That’s when I turned into dragon mom.

The company wanted to send us a cleaning kit and try it out before providing a replacement. The company wanted to convince us its nebulizer’s problems were our fault, not theirs.

Yeah….no.

After two minutes of going in circles with  a customer service rep I cut her off.

“This thing has been the e-Slow since we opened it. Your product has wasted enough of my time. Put a supervisor on please…”

It seemed like I had to say it about three times. Supervisor on. Supervisor on. Supervisor on.

I told the supervisor the same thing: It’s never worked right.

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We’ve entered the ‘do it yourself’ phase

“It’s under a warranty. Send us a new one.”

The supervisor tried the same stunts the customer service rep, but I remained firm.

New one. New one. New one. Warranty. Warranty. Warranty.

Was I in an echo chamber?

We got a new nebulizer.

Thank goodness – this one does what is supposed to do.

It really is rapid like the name claims. It can deliver a whole dose in five minutes or less, not 15 or more like the first model we got.

Two weeks ago, Eli caught his first cold since January, when double whammy viruses sent him to the hospital for five days with a CF exacerbation.

His colds can stick. The virus flare up the bacteria that chill in his lungs all the time because of CF. We put him on an antibiotic after six or seven days of coughing. It’s amoxicillin and he’s been taking it for a little under a week now. He’ll stay on it for 21 days.

He has on hand two additional breathing treatments that are optional. He has a lot going on, so we only try these when he starts to cough.

We have albuterol, the same bronchodilator asthmatics use to open up lung plumbing. Eli doesn’t have asthma, just junky lung tubes. The third breathing treatment we keep around is sodium chloride, which encourages coughing.

This bout with infection, we’re trying out sodium chloride as a breathing treatment for the first time. It’s basically vaped salt water and it makes Eli cough a lot. We tried a 7 percent solution months back that he rejected. Mark and I sucked it in ourselves to see why. It’s like an unwelcome mouthful of ocean. Terrible!

The 3 percent is much more tolerable and Eli was luckily game.

There is no worse phrase on earth than “thick sticky mucus,” but that’s what’s in his lungs and that’s where the bacteria sticks. Without coughing his infections would settle in and go wild.

In conclusion, I’m thankful that I morphed into dragon mom to get what we deserved: A new, working piece of medical equipment.

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Chillin’ and vapin’

I’m thankful I refused to waste more of our scant time. With this cold he’s on his vest for 1.5 hours per day, and with three breathing treatments, it’s nearing two hours of care if you include the time it takes to sterilize his equipment.  It’s a part-time job on top of everything else we’ve got going on. I’ve got a cold. School has started. The laundry pile is six-feet tall. Etc…

Fellow dragon moms, protect your time from waste. Don’t apologize. Remain firm. Time is precious.