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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Post-mortem: The bodies, the battles, the stories, the summer, the week, the mornings, the school lunches, the date, the everything

I first learned about the the post-mortem, in the way the term applies to being better next time around, not doing an autopsy, while working a temp job at an academic hospital in downtown Chicago. When someone dies, there is apparently this big conference. At my hospital they called it M&M, which is a creepily cutesy nickname for Morbidity and Mortality. At the M&M, everyone talks about what they did wrong and what they did right on the case in order to improve. “It’s like we’re doing a post-mortem, not on a body but on the procedures,” my supervisor explained.

It came up again when I was a reporter doing a story on some deploying National Guardsmen.

Version 2

They did a post-morts on whatever training exercise they’d just completed.  I hopped out of the humvee to take some notes in the middle of this battle exercise in the Michigan woods, and they fired shots at the threats, but then jumped back into the humvee and left me behind, which I found hilarious, because I thought they all hated me. Then afterward, I was really moved that they were all down on themselves. Like, if this was Afghanistan, where they were headed, and they had an embed, they’d just left her in the dust. “It’s really OK fellas this is just pretend.” No, it wasn’t, according to them. They vowed to do better. They did a post-mort on the exercise.  One guy got down in a humble,  one-knee stance in the middle of a soldier circle as a higher-up told him how he’d screwed up. It was incredible and touching to see. They all just wanted to keep each other alive. Even me, an outsider, some reporter chick nobody trusted. And so, taking direction strewn with f-bombs, each vowed to do better. They even let me shoot a grenade launcher and an M4 later. Best. Day. Ever.

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In my newsroom, especially after big stories or news weeks, we post-mort stories, sitting around chatting about how we could have done a better job. No one takes it personally. We all need the time to reflect.

I bring all of this up because I follow a writer named KJ Dell Antonia , who for a while ran the New York Times blog Motherlode, which was renamed Well Family to be more about all parents and not just moms. She’s on a break from editing but she’s got a newsletter that I subscribe to.

She did a post-mort on her summer, and I thought that sounded like a brilliant idea.

Then I got to thinking that I want to post-mort, like, everything.

Mark and I achieved the goal of getting out last night.

Let’s post-mort our summer. What did you like? What did you not like? What could we have done better? Did we travel too much? Not enough? I wanted to try to swing a little cabin getaway for our family next year at the least, a trip to a new national park in best-case scenario. He wanted the kids to have more of a daycare option, because by the end, Mark, a teacher, found himself on the edge of madness.  He had a personal project that he never got to because accomplishing anything other than putting on pants with our kids at home is a friggin’ pipe dream.

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Over ramen and a glorious saki sangria for me and beer for him at a charming, new OKC establishment called Goro, we next did a post mort on the week–namely, our shit-show mornings.

They were frickin crazy and disorganized. We switched mornings on doing Eli’s care. I’m on the Monday, Wednesday, Friday schedule. I don’t mind as I’m more the morning person anyway. I did mind that Eli screamed at me every single morning. “I don’t want to do my vest! Why do I have to do my vest?!” One morning was particularly awful. He kicked and punched  at me as I tried to get him in the damn thing. “Don’t hit, Eli. If you want to hit, hit the pillow.” He beat the shit out of that thing. I kept trying to soothe him, give him choices. Do you want a juice or a milk? Do you want to watch YouTube or a cartoon? “MOMMY STOP TALKING TO ME YOU’RE MAKING MY THROAT CLOSE!” So I lay there on the couch, did some meditative breathing, tried not to cry and let him be angry and beat the stuffing out of the pillow. He finally covered himself with a blanket, stopped beating m his pillow whipping boy and, vibrating in his machine, went to sleep for the next 20 minutes. Understatement: We aren’t use to this 5 a.m. wake-up call yet.

I thought it’d be grand to try to do the vest AND breathing treatments at once. That did not go over well, as you can imagine. Mark had the genius idea of putting Eli on his breathing treatments before he even woke up. Of course, Mark got away with it, but on Friday morning, when I tried, Eli, asleep, swatted the mask away, rolled over and yelled at me. “STOP IT MOMMY!” He shot out of bed and said he wanted to move to the couch to do the breathing treatments and he did not want my help. “NO! I CAN DO IT MYSELF MOMMY!” So there’s that. And that’s what we did.

Each and every morning felt rushed and upsetting. I swear to you I could taste the cortisol. We were late to school at least twice.

And don’t even get me started on my genius idea to pack lunches this year. I mean, we’d save sooo much money, right? For two kids a school lunch is $6.50 a day. It all adds up. Ya know what else adds up? Packing lunches that THEY DON’T EAT. The time it takes TO THOUGHTFULLY SHOP FOR AND THEN PACK LUNCHES THAT THEY DON’T EAT. Da fuq, kids? How about you buy your lunches, moving forward. They are a little pricey, but that’s because they are actually nutritious n good n square, too.

Now I can’t stop post-morting. Literally we gave a post-mort to our date on the way home.

I was like – that dinner was expensive. I liked the part where we walked by historic homes and judged the ones with crap siding and fantasized about owning the good ones, and zillowed the neighborhood, and fawned over gardens and laughed at tacky lawn ornaments and got too sweaty and so we sat in the plaza eavesdropping. Like, the walking part. The house-gazing, people-watching parts. Not the freaking out b/c we just spend almost $70 on drinks and dinner part and we need to start buying school lunches so that ain’t gonna ride. Let’s hire a sitter and just walk and look at shit next week!!!!!

Anyhow, I like thoughts and phrases that start with the phrase, “Moving forward….”

It’s a healthy way to be. Learn from those mistakes, let them go, charge ahead.

I feel better already.

Ooooh what else can I post-mort?!?

 

 

 

“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.”

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

Sibs, an Oklahoma weekend

This morning, the game “Eli the friendly plaid ghost,” entailed Laila tossing a checkered blanket over his head and then repeatedly ramming her little brother with a pillow and knocking him over..and over…and over…until they doubled over with giggles. Bonus: No one ended up in the ER.

It’s not always so perfect between these two.

Laila on occasion dispatches psychological warfare and entices hapless Eli to use brute force against her, then immediatly tells on him. Such shenanigans are part of an eerily well-executed diabolical plot that makes me wonder if girls are born to fight dirty.

And, sure, now and again Eli’s frustration will boil over out of nowhere, and he’ll take a swing at his sister, which makes me wonder if boys are predisposed to knock out anger in parking lots and boxing rings and playgrounds.

Anyway, most of the time, they are friends, playing silly games.

I think back to when Laila met little Eli, who was in the hospital and strung with wires and tubes hooked to beeping machines and pouches of liquids, and she wasn’t afraid. Transfixed on his tiny face she patted the hair on his head for a long stretch of time in  reverential silence, melting my heart and making me wonder if siblings were born to understand and protect each other from all manner of unseen forces.

She made him a sign at the hospital with the help of grandma. “Eli, sent from heaven,” it said in puffy pastel letters stuck to a blue square of card stock encircled with haphazard crayon squiggles.

A year or so later she drew a family portrait, working in dad’s tall hair but forgetting to include her brother.

Yesterday on a walk Laila took on the role of “Shadow scout,” sprinting ahead to locate the next patch of shadow on our treacherous hot walk in a park, then running back to direct us there.

Today unsuspecting Eli became a part of her water stunt scheme.


I want them to always have this much fun together.

1.567 seconds after typing the above, Eli lobbed a Hot Wheel monster truck — Grave Digger, to be specific — at Laila’s face. Laila screamed, then Eli began wailing, and Mark walked upstairs and reminded them, “You love each other. Apologize. Play nice.”

And so they continue with their day..

How to investigate a drug company 

Yes, as through this world I’ve wandered

I’ve seen lots of funny men;

Some will rob you with a six-gun,

And some with a fountain pen.

-Woody Guthrie

If you, like me, are interested in getting a handle on the inner-workings of pharma, – the good and the bad – you’re going to want to take heed and say hi to Edgar.

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Eh?

Yeah, EDGAR, see? He’s got the inside knowledge. The scoop.

EDGAR stands for Electronic Data Gathering, Analysis and Retrieval. Can we call him Ed?

The database is an arm of the U.S. Securities and Exchange Commission, the Big Brother outfit that seeks to protect investors and promote transparency to win the public’s trust.

What that means is an s-ton of info is available to the public online about publicly-held companies, like Vertex, the target of my anti-gouging petition.

(Gouging  the hell out of a drug, BTW, is not illegal at all. Gouging a gallon of gas after a tornado? Why, that low-down dirty Tom fuckery’ll land ya in jail!)

Whether your are a disgruntled prescription drug consumer, an investor or a person who like me has a passion for original source material, you can follow these steps and start digging like a reporter-mom.

This is what you need to look for to get started:

  1. Visit this link to EDGAR
  2. On the sidebar along the left side of the page, click “Company filings.”
  3. Now what? To get started, here are a few things to know and do:

Know: EDGAR is unforgiving.

To pull up Vertex, I had to type “Vertex Pharmaceuticals” to find the correct company, quotes and all.

On the top left, I can filter the results by the type of document filed. Those document names, tho. Steel self for the opaque, acronym-plagued bureaucratic parlance that’s characteristic of Uncle Sam.

First, it’s helpful to understand a few basics about what you are looking at.

  • The 10K

    This important filing is an annual report. These are superlong and contain oodles of juicy info. The company needs to detail its business, like risks and potential conflicts of interest, with its named executive officers and directors.

  • The 10Q

These quarterly reports contain mostly financial info as well as updates on lawsuits and other goings-on that have changed through the quarter. Most of what is in a quarterly report is compiled in the annual report, so you might want to read the bigger summaries first and then follow interesting issues throughout the year or as long as you are interested.

 

  • The DEF 14A

I’m sorry, what? These terms are the worst type of jargon. DEF 14A is code for proxy statement, which is not self-explanatory. So let me explain: Ahead of a shareholder meeting, the SEC requires companies to debrief its shareholders so they can make informed decisions about info that will be aired at an annual or special stockholder meeting. The company must file a DEF 14A ie proxy statement with the SEC. These are public documents.

Back to the unforgiving EDGAR:

To filter your results, you need to type “10-K,”  for annual reports “10-Q”for quarterlies or “DEF 14A” for proxy statements. These search terms must be typed in exactly, including the dash, or it won’t work.

The work of combing through EDGAR yields lots of information, like the below chart of Vertex executive salaries. Mark n me combed through five years of reports, gleaned the compensation packages and then tallied it all up in a Google Doc to come up with what you see below.

VERTEXsalaries

Have fun and let me know what you find out about the companies you investigate.

Silly stuff at clinic

“The truth is like poetry.

And people fucking hate poetry.”

-overheard at a D.C. bar and quoted in “The Big Short” (on Netflix now BTW)

Dry, hot Okie summer: 6 Lessons learned

As a transplant to Oklahoma, it’s been somethin’ to get used to the insanity of Southern plains weather. I grew up accustomed to cool summer evenings, late springs, a chilly fall and a white winter.

At present, it’s searing hot in Oklahoma City. Heat-advisory invoking, dangerously, stupid hot.

Here are six summer lessons I learned in my four years as an Okie.

1.It’s so damn hot you can suffer from vitamin D deficiency trying to avoid the sun.

While pregnant with Eli at the height of the summer of ’12, I got hit with a wall of fatigue the likes I’ve not experienced before or since. The pregnancy had something to do with it, of course, but my doctor drew blood, ran some tests and discovered a vitamin D deficiency. Sunshine helps us get our vitamin D, and I’d spent so much time indoors avoiding the heat, I wasn’t getting enough of it.

2. Smart Hours marital fights are real

You can halve your electric bill by signing up for and adhering to Smart Hours, a program that aims to conserve power by using little or no air conditioning between the hottest hours of the fracking day. Electricity-savings minded Mark gets a special glint in his eye when Smart Hours time rolls around. Like most married people, we battle over the thermostat all year. Marktakes his Smart Hours commander post so seriously, I figured out quickly that it requires a lot less energy on my part to get with the program. Plus, his vigilance saves us a ton of cash. I’ve come home from work to find my family members running around in their underwear to deal with the heat. #truestory

3. The spiders get big…really big.

Spiders, we’ve discovered, like summer. There is the regal-yet-scary-looking wolf spider. I’ve gotten used to these. I exercise a catch-and-release policy, flinging them into my garden for insect control. Not so down with the brown recluse. These suckers slip into undisturbed areas, like the attic or garage or your winter clothes. After hosting a garage sale the other week we found two of them in our house. Mark called me up on the phone and in a tone of voice that suggested someone was dead, he informed me of these finds. That’s because the recluse has flesh-eating venom. Mark actually saw a wolf spider chasing a brown recluse spider in our home. He caught them both and put them in a Halloween pumpkin that served as a death arena. The brown recluse froze to play dead. We smashed it and released the other. Don’t even get me started on the black widow. We found a giant mother black widow in our shed. I wanted to burn it down. #notusedtothis

4. Summer makes you appreciate winter, spring and fall

As July and August post searing temperatures, you appreciate Oklahoma’s mild winter, beautiful spring and lovely fall. OK, OK, so occasionally, a wildfire, tornado or ice storm shows up. These are mere punctuation marks in between very tolerable strings of prose, people!

5. Fun in cold water helps us cope

Heat advisory, shmeat advisory. My pal Brianna and I still run in this weather. We make sure to run through the city’s various fountains and sprinklers, douse our heads with cold water and drink lots of H2O before, during and after. I’m a big fan of meeting up with other parents and kids at various splash pad areas in the metro. A community pool offers relief, and the city recently opened up a whitewater rafting facility, of all things. I’m considering getting a membership – they are oddly affordable – and learning to kayak in rapids. The lakes in the Sooner state, though? I’m from the Great Lakes state, so those man-made red-tinged puddles are never going to cut it for me. That’s why July and August also make trips north to see family all the more refreshing.

6. A belated love letter to Sonic Drive-in

Sonic Drive-in did not have me at hello.

“I don’t eat in my car. Gross,” I told a bewildered co-worker regarding my feelings about this drive-up Oklahoma-based fast food chain.

Little did I know I would fall for the ubiquitous restaurant. Was it the tater tots? The friendly and efficient carhops? The Diet Dr. Pepper on tap? Half-off happy hour drinks EVERY DAY? The secret menu?  Some of the carhops wear roller skates. There’s even a battle. A skate-off, people. COME ON.

Sonic is like that high school friend zone boy who becomes something more when summer strikes. You don’t know how or when it happened. But here we are.

“C’mon, kids! Let’s go to Sonic! It’s tater tots and ice cream O’clock!”

xo

 

Frugal Florida: 10 days, 2 tots, 54 hours in a car, 3,037 miles and $2,153

We took a Griswold-style road trip in the family truckster to Florida for Spring Break.

“Frugal” is a relative term. Taking a vacation, traveling, etc. –  not frugal moves in my book. I consider travel a luxury.  One I shall claim is mine to be had! MWAHAHAAA!

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Taking trips together to make good memories as often as we can is a maje. priority. That’s why I’m opening the books on our travels with this post. If a buncha knuckleheads like us can spring it, maybe all the knuckleheads out there can take a decent trip, too. I periodically try and write of our effort to be less financially f*cked as middle class people. As of late, that effort doesn’t leave a lot of time for writing – I scrambled in February to balance my full-time job and mom duties with a few side gigs so we could take a vacation. That followed Mark’s stint over the holidays with a second job in retail. We’re trying to stockpile some cash, not take on debt and generally, be better, more responsible grown-up humans, in light of my son’s cystic fibrosis diagnosis. That’s not a bad thing.

But srsly, ppl, you can only have so many priorities. Mark and I have been busy doin’ that shuffle called life.  Enough blathering, here we go:

Spring break is upon us again. Before we take off (next week!!!) to explore the great beyond, whatever that means, I shall write a round-up of last year’s trip to Florida. It only took an entire year for me to get this done. #slow #tired #ohwhocares

FLORIDA, March 13-22, 2015

The plan: Arrive in Sarasota with unexploded heads. Return from Sarasota to OKC with unexploded heads.

Before we left, we realized we had no reliable vehicle to get to Florida, and being frugal-walleted, we weren’t going to fly.

We rented a little Kia Sorento. Kinda small, but new. The rental fee was $477. We agreed to leave at 4 a.m., which, obviously, meant we slept in until 9 a.m. I prefer sleep to an early start. Mark arrived to pick up our rental only to find some mix-up had delayed our launch. No surprise there! I messaged a friend I’d planned to stay with in Birmingham, Alabama. I’d given her the wrong date.  No surprise there! And we were off! 

I estimated our gas costs with the AAA cost calculator. If my record-keeping serves me, the estimate was $306 and we ended up spending $316 on gas in 3,037 miles total, there and back.

Note: Driving with toddlers is complete insanity.

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In L&E’s defense, they were each so good until somewhere between the hour of 8 and 10 on each of the four days we drove. Like clockwork, boredom kicked in, as did whining, and crying and backseat boundary wars. At the time we left for Florida, Laila was 4 and Eli, 2. For the best, it’s all a blur now. There was that stop at the Dollar Store for any crummy toy that stood to wow our little people, if only for a few minutes. At one point L&E ran circles in the parking lot of an Arkansas funeral home. Mark has this habit of topping off the tank 24/7. It totally jives with my small bladder, so it’s cool. TMI. He stopped for gas 11 times by my tally. It helped the kids get the grumps out to stretch out in the car.

Lodgings

We got motels to break up two-day journey to and from Florida. No bed bugs and a free breakfast. Under $80 a night a pop. I’ll take it.

For our stay, we settled on an RV park! I’ve never done an RV park. As it turns out, my aunt and uncle, who I almost never see, were in Florida and staying at the Sun N Fun RV Park. They are hardcore RVers, and somehow, had a spare and extremely nice RV for us to borrow. This baby was like the Cadillac of RVs. We serendipitously took advantage of the free RV and their vast knowledge of RV livin’.

The Sun N Fun RV Park

Indeed, Sun N Fun lived up to its name. There was sun. There was fun.

Below, Eli gives cheek at a low country boil hosted by friends of my aunt and uncle.

What is a low country boil?

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I, cheeky fellow, am thinking of the next time I will splash in big blue ie the ocean.

You throw Southern food items into a giant pot – corn on the cob, potatoes, shrimp, etc. etc. You boil it outside. You throw it all on a table. And then you dig in.

Other great thing about Sun N Fun – you can drink margaritas at the toddler pool. We drank a lot of margaritas. They had goofy theme nights, too. We did the karaoke on our last night. The RV set is full of ‘glamping’ families and retirees, so if that’s not your scene, you might consider staying elsewhere. It had good amenities for kids like a playground, giant bouncy air bubble thing, etc. We spotted no gators in a pond.

OH – you should note it is not on a beach. That was the downfall of the Sun N Fun, unless you are the type who doesn’t like the beach. I do like the beach.

Do you like dogs? There are a lot of dogs at Sun N Fun. One woman walking a little dog yelled in a thick New Jersey accent at another RVer whose big dog wasn’t on a leash, per the park rules. So it is that kind of place, which you should know before you book, in case you find dogs and/or angry New Jersey residents less than palatable.

We had an overall fun experience and got to visit not only with aunt and uncle, but other relatives who happened to be in town, like my sis & hubs and new nephew Ben and Mark’s parents. Thus, we got the best of both worlds, with a healthy rotation of extended-family face time and inner-circle family face time.

It cost $475 for seven nights.

Food and sundries

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To keep costs down, I shopped in the off-off season on Amazon.com for things like a new (vintage-yet-extremely-high-coverage thank God) bathing suit for me and beach gear for the littles. We used Kohls gift cards for things like towels and flip flops. BTW: Best thing I spent my cash on before we left? About five new $5 DVDs from Target and an adapter for my laptop so the kids could watch in the car. Worth it.

In Florida, we stocked up on lunch and breakfast foods. Even if you eat out at cheap places – Cracker Barrel, Waffle House, etc. –  it adds up! We went out to eat a few times. I don’t like eating seafood in landlocked states (ie Oklahoma). I try to eat a lot of seafood while on the coast. Not a fan of cooking seafood. More of a fan of having someone else cook it for me.

I have little in the way of restaurant reviews to share. In Sarasota, we at at a place called the Blue Dolphin Diner that appeared to be the only breakfast place in town, so long was the line and unremarkable the food. A little road-side restaurant/bar stop on a mini-trip to Sanibel Island called Dock of the Bay Diner had a tasty fish n chip.

OH – I threw a party at our RV site after having  three too many margs at the toddler pool. The spread was pretty thin and if I remember correctly included an aging pasta salad that had made the trip from Oklahoma to Florida in a cooler. I banned the children from having barbecue. PBJ for you! No meat for the kids! It had to be the worst party ever! Luckily, everyone there was related to me, so they had no choice but to forgive and forget. HA.

This is what we spent on food and supplies in ten days of travel: $390

Other ways we saved money:

Speaking of booze, spending days in the sun sipping margs robbed me of my night-time power vacation drinking energy. I discovered I’m not 2o anymore, which was how old I was the last time I visited Florida. Thus, I retired early. I mean, like, even ONE toddler poolside marg had me in bed by 8 p.m. Point being, since I was too tired to hit the bottle full-tilt vacation style, we saved beer money.

A lot of saving money entails refusing to spend it. We skipped Disney. Two-and-a-half is a nightmare age for Disney. Sorry, Eli. Later! I suppressed the urge to buy lattes and pedicures and massages every six hours.We spent nothing on souveneirs for ourselves, though we bought a few gifts for others.

Enjoying free things, and each other! 

We spent a lot of time on Sarasota beaches, which are free to enjoy. My kids loved the ocean. We used massive energy stores saving Eli from himself. Toddlers, man. They fling themselves toward danger and death at every turn. For peace of mind, I strapped the kids into Puddle Jumper life vests.

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We also took a day-trip to Sanibel Island, where we picknicked, made sandcastles and hung out with snow birds grandma & grandpa. That vacay-within-vacay was a huge highlight. Grandma Chris and I dove for shells to take home. I screamed and flailed as unfamiliar sea vermin poked heads out of the damn things. Per online research, Sanibel beach was covered in seashells which I assumed contained no living matter. Not so. We had to swim a ways out into the ocean to find shells. I felt hardier after surviving the seashell mission.

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The total cost of the trip: $2,153

Totally worth it.

Now for the vacation post-mort:

The question: Should we have flown? 

I have a limited amount of vacation time, roughly a dozen days per year. To spend four of those in a car is a lot of vacation time spent in a car. Time is a priceless commodity, but saving it often costs. I’m willing to plan, save and pay more next time to save time. A budget airline has added routes from OKC to Florida, so there’s that!

With more research and planning, airline tickets could be in order next time we take a trip.

Cheers. We head to the Grand Canyon next week. I’m going to try and make dispatches from the road. Wish us all luck. xo

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