This is Eli

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

“This is Gigi’s grave,” I told Eli.

“You didn’t know her,” Laila said with a sibling’s brew of pity and triumph. “I did, but only when I was a baby.”

We were all standing around the cemetary in my hometown of Michigan, my sister, Laura; my neice and nephew, myself, and Laila and Eli.

I hadn’t been home in two years.

Besides seeing relatives, my mission on this vacation was to pay my respects at my mom.

She died almost eight years ago.

The truth is, I’ve never felt particularly connected to the actual place we buried her, but I wanted to say hello, anyway.

“I left her a Chai on Mother’s Day,” Laura remarked, picking it up. “Look it’s empty. She probably stuck a straw up and had a sip.”

“Is she down there?” Eli wanted to know.

“Just her body,” I said.

“Oh, no, it’s decomposed by now,” offered my niece Anna, 11. “Oh definitey her skin and muscle has fallen off the bones and…”

“OK, Anna, we’re good there. She’s not really down there,”I explained to Eli. “That’s just her body, not her soul.”

“What’s a soul?” came the follow-up from my 5-year-old.

“A body is basically meat casing for the soul,” I added. “A soul is like – who you are. The essence of you.”

“Put your hands here,” said my sister, directing Eli to a lush patch of grass, which he patted oblidgingly. “Do you feel her here?”

He shook his head no.

“It’s OK, Eli,” I said. “I don’t feel close to her here either. It feels like I should, but I don’t.”

Eli reached toward me and I scooped him up. He wrapped his mitts around my neck and gave me a hug.

“Gigi,” he said a little longingly. “Gigi. Where is Gigi?”

“She died,” I said.

“How did she die?”

“Cancer,” I said. “C’mon, let’s go look at the other graves.

We contemplated the older stones, some worn down by weather and barely legible, which my sister found tragic.

Drew, my 9-year-old nephew, and Laila wandered off to explore the mysteries left by the inscriptions on slabs sticking up like rows of grey teeth.

But soon it was time for a snack break and a trip to the park. They bounded down a hill.

“Sanctity, children! It’s a thing. Stop running.”

I took another look at the dates on my mom’s headstone before we left.

I knew her, but did I, really? My memories are fading, which I hate.

The story of her has massive holes in the plot.

Her childhood? I know almost nothing.

When we wrote her obituary it occurred to us that we didn’t know where she was born.

The wedding date on her tombstone was even a source of dispute. Somehow she and my Dad went back and forth on the year they donned matching white suits like Sonny and Cher, tied the knot and sped off in a baby blue vintage Jag. Parents not present. Never explained.

Should I go looking for answers before my own memories disappear forever, before those that knew her long ago say goodbye, too?

An intensely private person, I doubt she would approve of any effort of prying.

And yet, I’m tempted to anyway, for completely selfish reasons.

I don’t want her to disappear from my own mind.

I want to understand who she was.

I want my son to know her, if only a little.

It was time for graveside trail mix and Capri Suns out of the back of my sister’s SUV.

Back at home in Maryland, I still don’t know if I want to go looking for my mom’s secrets.

And if I did — where would I even begin?


It’s cystic fibrosis awareness month.

Question: Should we as parents pump the breaks on the ‘fighter’ language?

I know I’ve called Eli a fighter many times, throwing the term out there without giving it a second thought.

He uses a vest twice a day when well, takes a whole bunch of pills, and is so conscientious about keeping crud out of his lungs he asked if he should wear a mask while we gardened. No, I did not make him, but I keep him away from piles of wet leaves as well as potting soil…because…pseudomonasb. cepia.…it’s just waiting in the wings to frack with my son’s lungs.

We are wrasslin’ with a life-threatening illness for which there is no cure all the time— even whilst gardening!

But, by saying fighter, am I implying that, when he becomes sicker, he didn’t fight hard enough? Which…would be REALLY shitty of me, his mom, to imply.

I wonder what older CFers think. If there are any who stream on in here, perhaps you could weigh in.

I’m going to pump the breaks on the fighter talk, though, no matter how tempting it is during cystic fibrosis awareness month and all the time every single day to call Eli a ‘fighter.’ Or even better, a ‘little fighter.

Right, I’ve obviously become addicted to the term fighter. And the only cure is to SAY IT MORE.


must…resist…fighter…language….DONE. OK that was really hard. I mean REALLY HARD.

Because he’s soo cuuuuuute when he *don’t say it* when he … um… staves off his very serious illness with an intense daily regimen of physio and pills.

…. GAH!





K. and I met on my very first day of college. I had a weird, giant, inappropriate Abbercrombie & Fitch poster of a man I was, natch, plastering on my dorm room wall as she walked by.

She said something like, “WHO IS THAT?”

We named him A.J.

Our by-chance living arrangement and shared interest in giant man posters at an all-girls dorm changed the trajectory of my life.  In between classes, we would write e-mails to each other detailing every minor detail and drama of our day (this was apparently a thing, pre-texting). We studied for hours at a cafe, building a friendship in between books and spying on any human boy in eyesight. This precocious gal from the Flint ‘burbs had worked for her high school paper, something that had never occurred to me. After she got a job at the student-run newspaper, I gave it ago.  She is the sole reason why I bumped into writing there, and, not knowing about anything else I’d want to do with life, nor having anything else to do with myself, really, I declared it my major and poured my blood into getting the paper out for the next three years, in what is now an ink-stained memory blur of Jimmy John’s desk meals, Thursday Long Island ice teas binges and boy dramas. The newspaper defined my college experience.  And we got really shit faced. A lot.

Visiting the circle of friends I met a the paper in Chicago at a 2003 anti-Valentine’s Day party, I met my future husband.

K’s life and my life diverged. But we’d reunite, K and I, many times over the years, traveling from our different respective cities, converging at cabins and bars in her home of Michigan or mine in Chicago, and typically at reunions soaked with wine and beer, reminiscent of the good old days.

K. was the first in our circle to have children. The economy had just collapsed when she had a baby born with a complicated heart defect. I, jobless and living with my parents at 28, had just returned from teaching in China, and I drove to the hospital in my grandpa’s donated-to-me 1984 Honda hatchback. It had plaid seats. This baby had to make it. I sensed she could use a break from the beeping machines. She let me drive her in my Hatchback to a near by pizza joint. I insisted she have a Sangria.

Her baby made it. Then I had a baby. My mom died. K came to the funeral. I moved to Oklahoma. She had another baby. I had another baby.

She called me. My son was hospitalized and we didn’t know why.

“They say it’s cystic fibrosis,” I told her, falling apart on the phone.

Newspapers everywhere were laying everyone off. She dropped journalism first. Then I did. I moved to Maryland. We both work in communications now – for good!

Nine months ago, K. stopped drinking. She shared her choice with me.

And, of course, I was supportive.

There was a networking group I should join, she messaged me. She was going to be there, in DC, and I should go, too.

But I wondered: In our years of career entanglements and booze-soaked hangouts, what would it mean now that one of us was a teetotaler?

Did she not want me to drink around her? Would she not want to be near a bar?

At the event, the network leaders made multiple references to us “needing a drink” after the training was done.

Dear God, what had I gotten myself into?

But the training was relatively painless. We were just told to follow instructions and meet and talk to the people there about provided talking points on a handout.

At the networking portion of the evening, K. asked the bartender if she had sparkling water.

She didn’t, so K just took a bottle of regular water.

But, the wine was free…sooo…

I had two dixie cup-sized glasses while catching up with K after the training.

In fortunate circumstance, the following day, we had a window to hang out after work.

But where would we hang out if not at a bar in downtown DC????

I suggessted a cafe. She suggested a place with drinks and snacks. We landed at an oyster bar.

And, despite it being a beautiful, sunny day at the end of the work week — I passed on the crisp glass of white wine that seemed like the obvious choice. I got iced tea. She got plain water. The bar staff had to launch a search party on Pelogrino, and it found a lukewarm bottle. She had iced tap water instead.

We strolled out onto the street and by a bar that struck us as *possibly the sight of a booze-soaked swingin’ from the chandeleir-esque outing during a college DC journalism conference.

Thank God that period of our lives is over, I said, and I meant it.

Her flight was delayed. We walked to Dupont Circle and sat in the grass.

Come to my house! I said. Catch the early flight tomorrow!

We realized she’d never met Eli and hadn’t seen Laila since she was an infant.

My normal routine on a Friday might be a glass of wine during my family’s weekly movie night. Why? Because Friday.

We got some La Croix instead.

My children shushed us repeatedly as we chatted throughout the movie, catching up on life.

I offered to make her a La Croix mocktail I’d learned about from my repeated forays in to the Whole 30 (a program I dropped THANK GOD).

“You don’t have to not drink because I’m here,” she insisted. “I have no problem with anyone drinking around me,”

“No, I actually don’t want to drink,” I said, and I wasn’t lying. “For one thing, I’m trying to lose weight. And I’m working out in the morning.”

We had a glorious evening of catching up that culminated with a discussion on self care, me pulling all of my skincare items out of a cabinet and an impromptu showcase of our deepening middle forhead wrinkles.

Even one damn glass of wine jacks up my sleep turns my face into a prune, I said.

As 18-year-olds, we built a friendship in cafes and in newsrooms and bars, on days that melted into evenings. But as time went on, and visits became more and more sparse, alcohol crept in to our every activity. Booze went from the fun side show to the main event. When – and why – had this happened? How had we let it?

I hadn’t given it much thought until I met my friend in this newly sober phase of her life.

Hanging out alcohol free felt more refreshing than any crisp glass of Sauvingon Blanc.

I had been worried about it. But it was — beyond fine.

As fine as the early days, stretched out on blankets in the grass, reading, chatting and thinking tortured thoughts about the boys we wanted to love us.

Only now, we’re sitting on my couch, talking about the men who do love us and the balance of parenting and career and smart phone use in children and how many activities are too many activities and the univese of good self care — one with a lot of intention and far less booze.
















My baby is 8.
In another eight she’ll be 16, a thought I’d rather not have ever again until it actually happens.
What is 8?
It’s posing with balloons, arranging Beanie Boo’s just so. It’s shrieking protests over cutting hair that’s a year overdue for a trim. It’s unicorn colors and headbands galor and her own hair brush. It’s brudda Eli photobombing her moment and gettin the what for.
It’s riding bikes and a solemn pinkie swear with Eli that she’ll let him win despite his notable lack of scooter skills. And next, slow, determined awkward zig zags on her bike so she trails behind and he actually does.
It’s tacos for dinner by pops and cheesecake for dessert that I bought at the store myself.  It’s planning a little party for new friends from school and missing our old ones a lot. It’s bottomless mom guilt for letting 7 pass me by and dragging 7 across the country, which looks like a rock tumbler and new gear and a Crayola cornucopia.

Eight is already going  by way to fast. I’m missing 7 and mourning 8 and it’s only been a day.

I can’t let 8 be like 7.  I can’t let 8 slip away.

Eight is magic!



There is a way to behave at a memorial.


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


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.


I gave the kids the same speech.


They nodded solemnly because mommy was being REALLY SCARY.

Eli didn’t get the concept of war.


“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.”


“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.








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.


“There is none, buddy.”


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


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

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

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

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

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

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

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

Then Mark and the kids agreed the kitchen smelled bad.

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

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

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

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

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

“Santa won’t find it,” Eli said.

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

“Are you sure he can get in there?”

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

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

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

pitter … patter … hurl

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

It’s that time of year.


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

I kinda do. And I kinda don’t.

And this year it’s more like – don’t.

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

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

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

So why t.f. am I sad?

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

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

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

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

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

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


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

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

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

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

Would my son make it there, to the bassonet?

Or would he die an infant?

I didn’t know.

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

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

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

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

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

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

Yes they sure AF do.

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

God bless hospital volunteers.

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

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

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

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

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

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

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

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

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

GUH. This time of year.

Dear little one,

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

For your birthday.

You are my 5-year-old boy today.

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

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

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

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

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

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

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

Love, Juliana, your mom

Processed with VSCO with a6 preset

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


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

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

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

Love, me.

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

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

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

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

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

1. 13 million people will lose insurance coverage.

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

3. It ends a deduction for high medical expenses.

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

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

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

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


WISCONSIN: Ron Johnson and Steve Daines

MAINE: Susan Collins

ARIZONA:John McCain AND Jeff Flake

KANSAS: Jerry Moran

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

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

My family thanks you from the bottom of our hearts.


CALL NOW: 202-224-3121



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