This is Eli

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

Yesterday’s alarm clock/CF care time crunch issue has been conquered- for now- by charging my phone in the hallway. My alarm went off at 5 a.m. I had to sojourn the ten feet there, during which time, I woke up enough to next drag myself to the kitchen, make coffee and give myself the 15 glorious minutes minimum I need to start the day off good and proper. 

I indulged in conversation last night with my best friend since childhood for a luxurious hour 15 while Mark parented his offspring so we could talk. I woke up still thinking deep thoughts about the call. Amy and I both realized, her first, me, like, yesterday, an incredibly debilitating hang-up we share- the fear of disappointing others. We worked in quashing that, because srsly – who has the time and why are we, grown women, expending any precious mental energy on such thoughts or worry? And where does this come from? Why can’t we do like Elsa says and ‘Let it go’? We could fill a book, but that would cut into my pending 15 minutes of me time. Putting down my phone now. TaTa!

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#amiright?

Srsly what alarm clock should we buy?

edit: Mark slept through his phone alarm and I did too last week.

EVERYTHING

Today is Monday, Aug. 14, 2017. Here’s WTF just happened in the last seven days:

(WTF’d whilst Whole 30 failing):

WTF just happened in regular life?

Eli slayed me. I’m dead.

I discovered what romance looks like after 9 years of marriage. Hint: Boiled nebulizer parts.

My children started school. 

Laila asked uncomfortable questions.

Speaking of Laila: She went from Daisy to Brownie. I ironed on Daisy flower petals on her blue vest at the 11th hour. She’s missing a petal. SHHHH.

I made a new blog header. What do you think?

WTF just happened: The news

There was a horrific terror attack in Charlottesville, Va.
Hate in this country remains strong
Trump barely condemns hate that resulted in the deaths of three – a protester and two law officers. His aides struggled to explain why he failed to condemn white supremacy.
Warning, graphic. Video captures attack. 
Victim’s last Facebook post tragically poignant
Confrontation w/ N Korea NOT imminent: US officials
The Department of the Interior is wrapping up its review of the state of 27 of America’s total 129 national monuments. Here are five to watch.

Health news you can use

Americans want the GOP to stop trying to undermine the health law and fix it instead, according to a few polls rounded up by Kaiser Health.

An Oklahoma mom kicked ass on NPR 

Pharma Bro got dose of own medicine. HA. Smirk away motha##$%^^

Words

 

Some things we like. Some things we need to do this week. 

I’m really feeling an app this week:
Apple Clips for iPhone, which is free, easy to figure out, includes emojis and turns your voice into synced captions. I used it to make a little multi-media video of Laila’s Daisy-to-Brownie ceremony Sunday.

My one criticism: Needs more emojis.

Gotta do this:

We need to re-organize our family budget.

We need to get up on time.

We need to divide mom/dad Eli CF care and household labor again, in writing, signed, sealed and notarized, in light of the new school year schedule, which is kicking our ass three days in.

We need to brainstorm ways to get Eli 1,600 calories per day.

We need to decide whether or not we can swing swim lessons for the kiddos, both in terms of budget and time limitations.

We need a night off. Dear God, do we ever.

If we get one of the above listed things done this week, I’ll be calling it a win.

The 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.”

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.

The most romantic thing happened to me. 

This:

Continue reading

Summer has been some kind of dream. 

Eli has had no lung infections to contend with and gained weight and grown taller. 

It has been one adventure after another – but the good kind. Not white-knuckle health scares. January through July and into August. Smooth sailing. 

Last week, Eli coughed for the first time in a long time after he got up. I gave him allergy medicine. He’s just clearing his throat, I told myself every morning.

Today he coughed again. The cough was different. It rattled his chest. 

“Mommy,” he said, “My chest hurts.”

I felt relieved he could tell us how he felt. Sad because he has never told me that before. Worried for what may come.

His lungs are like fly paper to bacteria. Even a little cold can spiral into an infection and hospital stay. Is this one going to stick? 

Eli goes to ‘real’ school this week. 

Thinking of him marching through the doors in a uniform with his sister, his little backpack and lunch pail- oh my heart. 

My chest hurts too buddy. 

I want to protect him. I want him to have a normal childhood. Can we really give him both of those things?
I don’t know.

wtfweek2

It’s Monday. What, have you been living in a cave all week? OMG me too! Here is a story and other items:

Small humans throw playground shade on Bunny Bun

Laila has a bunny. A toy stuffed bunny named Bunny Bun. Bunny Bun is no ordinary bunny.

I was in the hospital, recovering from Laila’s birth, when Bunny Bun made an appearance. The glamorous labor drugs I coveted had worn off. I was in paaaain. I needed to sleep. I couldn’t sleep. I couldn’t sleep for three or four days. My mother appeared in my hospital room. And she proffered, in a little brown paper sack, Bunny Bun.

My mom, AKA GiGi, AKA Notorious G.I.G. (pronounced ‘geedge’) had lovingly selected that little stuffed bunny, small and terrycloth and cream with a pastel brown belly and paws.

My mom had late-stage cancer but there she was, swooping in to give our new baby a gift, and to help me when I couldn’t help myself, or Laila. I couldn’t even fall asleep. I wouldn’t fall asleep. I wouldn’t fall asleep because thoughts kept intruding. Thoughts like, “You’re going to throw your water bottle and it’s going to drown your baby.” “You’re going to toss in the night, throw a pillow on top of your baby. She’s in danger. You are a danger to her.” What? These thoughts made no sense. It was a sign of things to come, for my postpartum mind. But that’s not a story for today.

My mom died when Laila was six months old.

Fast forward seven years and four months. Laila took Bunny Bun to summer day camp. Laila played, alone, with Bunny Bun, because Laila likes to operate like this at times –in her imagination, in worlds she creates. Mini humans on the playground threw shade at Bun Bun. Two small human females told her Bunny Bun was “creepy.” “So are you. You and your bunny are creepy.”

Laila arrived home, confounded at the unprovoked cruelty, and shared the story.

This was no small matter. This involved Bunny Bun. Thee Bunny Bun.

How should she respond?

WHAT WOULD G.I.G. (pronounced Geedge) do?

to be continued….at the end of this post…

This week some things happened, including to thE ‘pharma bro’ Shkreli


A lot happened this week, in the news.

One story caught my eye, a turn in the ongoing saga of Martin Shkreli, aka, “Pharma Bro.”

He jacked up the price of a decades-old, life-saving pill. Then he smirked a lot about it. His story actually inspired a speech and a petition from me. It prompted me to start paying more attention to the way Eli’s drugs are being priced. But that was two years ago.

Last week he got his comeuppance. Sort of.

Reports the L.A. Times:


The baby-faced and gutter-mouthed 34-year-old, often known as “Pharma Bro,” had been charged with eight counts of securities fraud and conspiracy to commit both securities and wire fraud. He was acquitted of five of the charges, including the most serious, which allowed Shkreli and his defense team to claim victory.

Prosecutors claimed that Shkreli ran what was effectively a Ponzi scheme, defrauding investors by exaggerating his own credentials – for example, claiming that he attended Columbia University. He used their money to capitalize a new drug company, Retrophin, which he then looted to pay them back, they alleged.

Shkreli was acquitted on the charges relating to Retrophin, but convicted of making fraudulent misrepresentations regarding two hedge funds he ran.

He called the whole ordeal a witch hunt. And you know what’s crazy? I agree with him.

Here’s a post I wrote about a common cystic fibrosis antibiotic. Its non-Pharma Bro manufacturer raised the price 9,000 percent for no reason (except you know, greed). No one made a peep! Except for a coupla docs in medical journals!

Point: The shit Pharma Bro pulled with the drug is so commonplace it’s not even funny. His weird creepy baby face smirked a lot. It’s the only difference. He put himself on prosecutors’ radars. He got caught. He got shamed.

And yet, the long arm of the law basically just scratched him, nothing more.

We all need to wake up. He’s not the exception, he’s the rule. The world is full of secret Shkrelis. But it’s going to take some doing to lift up that benevolent veil under which these frackers hide their perma-smirks.

In other news…

Eclipse WTF

You should read about the total eclipse! An explainer (Vox.com)

Trump WTF

Trump is golfing. He’s golfing a lot. 43 times and counting. It’s cost taxpayers more than $57 million, according to the self-explanatory Trump Golf Count.

Kim Jong WTF

Is he really a threat? One columnist is like, “meh.”

Small humans throw shade on Bun Bun contd…


More news happened, which I’m too tired to report. You need to go to a legit news site and get caught up, reader.

Here’s what happened with Laila. With Bunny Bun.

I thought hard about what my mom would have told Laila to do.

Well, first, Geedge would have, obviously, thought of 7-year-old appropriate comebacks, such as, but not limited to, “Your opinion is meaningless to me.”

Indeed, I told Laila she was free to express this truth to Bun Bun’s tormentors.

Also a good strategy: Ignore these mean-girls-in-training. It deflates any power they have over you.

But, while you are at it, how about you take the way those little people treated you as a lesson in how not to treat others?

Remember how they made you feel.

Don’t act like them. Don’t diminish other children. 

To be honest, I was more bothered than my daughter about this whole Bunny Bun scenario. She told me about it in passing, the story relayed with bemused confusion as to why two others took issue with her obviously adorable rabbit. 

Maybe, Laila, you should leave Bunny Bun at home from now on, I advised.  You know, just for safe keeping. 


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.

Happy Monday, beautiful. I’m going to try something new here and see if it sticks.

Every week, as we get to the end, I find myself wondering, “WTF just happened?”

Here are things that assuredly happen each week. The kiddos get one week older. So do we. Eli asks 23,465 questions. So much news breaks my head spins. I try to hide from screens each evening and most of the weekend.

The hopefully weekly installment of WTF just happened? commences now. I bring you the first installment:

wtf

Running in heels

I’m running in heels on a gym floor. I’m running from my son. He’s screaming “Mommy,” arms outstretched. I pick him up, snuggle and soothe him. I bring him to his sister and her bestie, H., who is wearing a crown of flowers like Frida. I almost double over, overdosing on cuteness, looking at that little crown, OMG it’s dear. H.’s mommy is from Durango. They visited over spring break. Not Colorado, Mexico. I hope H. and her mommy can still visit whenever she wants. H. does not celebrate birthdays, Christmas, St. Patty’s, Halloween or any other holiday. But she brings Laila a presents to school, literally, every other day. Laila on this day will give her a small stone carving of a rabbit from our summer travels, to the Fantastic Caverns of Springfield, Mo.

Anyway, I approach Laila and H. I plunk Eli in between them. Hug Eli, I say. Hug him tight and don’t let him chase me, whatever you do.

I sprint out the door in heels.

I learn later he cried for exactly three minutes before going on with the rest of his day at the kids’ new summer day camp.

WTF happened in the news?

Black women earn 67 cents on the dollar relative to white non-Hispanic men, per the Economic Policy Institute.WTF that’s not cool. July 31 is Black Women’s Equal Pay Day.

The Mooch, WTF?:

The Mooch ranted like no communications director has on-record ranted before.

Murkowski, Collins and McCain, Oh my!:

How much should the government be involved in ppl’s healthcare? Luckily for Eli, the GOP couldn’t agree last week. The CF Foundation has been texting us every day, asking us to call our Senators and ask them to vote “No,” on every iteration of every repeal bill put forth.”Skinny bill,” and every other proposed bill (I believe there were four shuffling around in D.C.) were terrible for people with cystic fibrosis, per the CF Foundation.

Which, may I add, has been rocking it on the advocacy front with the clarity and utility of its message: Tell them to vote no. It will hurt every person with CF.

Skinny repeal sunk early Friday morning with the surprise “No” from McCain, the Senator from Arizona. Now what? We get to wait and see if Obamacare will implode, if Dems and GOPs will work together, or if more Repubs will win in 2018, growing the GOP majority. Oi.

So, half of people w/ CF are on Medicaid. We have private insurance, but caps on coverage are back on the table. Those caps used to stand at $1 million, according to a Vox.com dispatch I read this week. Pretty sure Eli has hit that already. I’m also terrified about pre-existing condition protections evaporating on someone’s whim.

I hate the politicization of healthcare, but I’m forced to pay attention and participate on behalf of my son. It’s increasingly important to my family. We have to speak. We have to vote. We have to protect Eli. It’s life or death, not a hypothetical.

Kim Jong WTF:

North Korea keeps launching practice missiles. Whilst I sipped coffee Friday, it launched an intercontinental ballistic missile. Oh, goody. Its Friday projectile did not have the capability to reach the U.S., but analysts predicted Kim Jong could get there by early ’18.

WTF: are we reading and watching

Just finished The Handmaid’s Tale, my bookclub selection. Next, re-reading The Glass Castle by Jeanette Walls. Book Club selected two books this go-round. We picked T.G.C. because those of us who had read it before felt it far superior to our last read with Appalachian ties, Hillbilly Elegy.

Handmaid’s Tale gets a thumbs up from me. Dystopia at its finest. Stirring descriptive writing, Margaret Atwood.

On a whim, I started a little ladies bookclub for Laila, 7. We are reading Little House in the Big Woods.

I binge watched The Last Kingdom on Netflix. Mark was a non-participant, as BBC-esque, slow-moving dramas don’t do it for him like they do for me. We re-watched Superbad. I forgot how hilarious that movie was. For mindless distraction, we keep watching Parks and Rec. We let Eli and Laila watch Disney shorts, which looks to be a new NF addition. They felt it. We are trying hard to keep them away from the TV. Do as we say…not as we do…

Area child breaks area mother’s heart

Transitions are a huge deal to littles. My kids were afraid of starting summer day camp after chilling with pops for weeks on end. Mark’s school schedule is a little different from theirs. He had to go back. They had to go somewhere new. I picked Eli and Laila up after that first day.

“Mommy,” Eli said. “We didn’t go to the auditorium. The school doesn’t have a jungle gym like my school. My friends weren’t there.”

Eli didn’t seem too cut up earlier in the summer, when he left our beloved Special Care, the nonprofit school he’s attended for the last two years.

Well, he mourned for it this week.

“It’s OK, buddy,” I told him. “You’re going to make new friends. And you have your sister in the mean time.”

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