Kids like Eli lose in the GOP tax and budget bills: MAKE A PHONE CALL TODAY for #givingtuesday

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

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

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

1. 13 million people will lose insurance coverage.

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

3. It ends a deduction for high medical expenses.

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

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

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

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

TENNESSEE: Bob Corker

WISCONSIN: Ron Johnson and Steve Daines

MAINE: Susan Collins

ARIZONA:John McCain AND Jeff Flake

KANSAS: Jerry Moran

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

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

My family thanks you from the bottom of our hearts.

 

CALL NOW: 202-224-3121

elih

 

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4 ways illness makes you thankful

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

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

1. Eyes wide open to the present

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

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

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

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

3. Low, low standards

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

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

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

Eli, hug magnet

Eli loves school.

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

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

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

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

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

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

Do we put cystic fibrosis on the poster?

I asked him.

He said it would be OK.

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

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

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

It was 6:15 a.m Wednesday.

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

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

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

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

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

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

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

Then I said something stupid.

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

YES IT IS MOMMY.

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

And my heart broke, again.

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

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

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

Finally, I hit the jackpot.

“Cookie. Do you want a cookie?”

His whole body relaxed. I unclamped.

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

He paused, looked at me.

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

“Two cookies. You got it buddy.”

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

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

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

“Be there in five!”

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

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

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

Now Eli seemed embarrassed. Had I made a mistake?

Too late to turn back now.

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

I read the book.

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

About ten hands shot up.

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

Another boy asked about hand washing.

“Why does it get rid of germs.”

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

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

More hands shot into the air.

“I’m Eli’s friend.”

“I’m Eli’s friend, too.”

“Me too.”

“I’m Eli’s friend too!”

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

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

He buried his face in my side.

It was time for me to go.

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

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

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

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

Eli’s got a little something different going on.

Do these little people somehow instinctively know that?

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

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

I don’t know.

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

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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, my chest hurts.”

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.

Shake-up: An exercise in empathy

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

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

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

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

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

“NO VEST MOMMY! NO VEST!”

Shit. Think fast mommy.

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

My offer hung in the air between us.

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

But then…

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

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

Relief.

And so here’s what commenced.

#whateverworks.

Winter visits

Our relatives from the frozen North like to visit us and defrost during the winter months.

Here’s a photo highlight!

I gave all the girls 40s hair, because, well , – why not?

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Laila tolerated my impromptu beauty salon only after witnessing cousin Nicole as guinea pig.

The plains weather drops and rises, drops and rises. On a cool and gusty day we headed to a favorite spot when the weather gets testy. The science museum!

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Hair twins
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Laila gives this dino the what-for.

A new dino exhibit captured the kids’ imaginations. Animatronics have come such a long way since “Pirates of the Caribbean,” (which I still love. #disney). Eli feared the life-like dinos and worried our family would be eaten in short order.

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There’s just something about sand spinning on stone…
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Auntie gets into the science.
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We watched Eli “play” basketball. He runs up and down the court. It’s great for the lungs!
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The Oklahoma bombing memorial remains a beautiful, quiet place. Except for those moments when my kids  destroyed that peace with piercing  banshee shrieks and required a lesson on sanctity for the dead.
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Our morning outing entailed the memorial. Cousin Nicole took notes with a sparkly pink pen.
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I wish, kids.

I had to pump the breaks on writing here to finish up a big project at work that requires all of my attention. And I needed to think about where I would be putting my energy in 2017. The months of September through January kept us on our toes with Eli. Three rounds of antibiotics failed him as he fought a cystic fibrosis flare-up. Finally, Cipro – strong enough to kill anthrax!- got the job done. He lost weight while fighting his illness and we are now focused on fattening him, as bigger kids have better luck handling his illness over time. We have our fingers crossed that we’ll get through the winter without a hospitalization. Winter’s not over yet. His illness management is a part-time job on top of my full-time job and other neglected life duties, like this blog, and the laundry.

Anyway, I miss writing here. When I quit I could feel the stress build – this is one of my favorite releases! I have some 2017 ideas. We’re going to keep on trucking. We’re going to keep on having lots of fun. It’s still good to be alive, in conclusion.

That moment when you’re trying to be pathetic and your son body slams you back to reality

I tried really hard to be pathetic.

I poured a glass of wine that was more like 1/3 of the bottle. I got under the thickest, warmest blanket we own in bed and called my sister to cry.

Not my proudest moment, perhaps, but every human has license to be ridiculous now and again.

What set me off was the news that Eli had a plug of goo in his lungs keeping his upper left lobe from fully expanding. It’s called atelectasis, and the official definition is “complete or partial collapse of a lung.”

WTF?

Because the last time I checked he just had a cough. 

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We be coughin and playin

We got test results back from his clinic, including an X-ray, nasal sample for viruses and throat swab to check for bacteria living in his throat, which suggests it is also living in his lungs.

The X-ray showed “appears to suggest” atelectasis, according to his clinic coordinator Debbie. (Hi, Debbie!)

What I’ve gathered is that next, instead of going straight to IVs, we try a new, stronger antibiotic at home (cipro) and do a lot of extra airway clearance since atelectasis can take a long time to clear up – weeks, or months.

He does not have a bad cold virus nor any new alarmingly named bacteria in his lungs.

That was a huge relief, as there are several bacteria strains that can really hurt him. These strains are found in common places, like the faucet, damp piles of leaves – in moldy onions, for Pete’s sake. They will not hurt people with regular lungs, but they could devastate Eli’s ability to breathe.

So if you see me sprinting like an insane person to stop Eli from drinking from a drinking fountain or from jumping in old leaves, now you know why. Pseudomonas is why. B. cepacia is why.

Atelectasis (WTF). That’s a new one for us from cystic fibrosis. I don’t react well when his disease surprises us. I’ve learned you’ve got to let the sadness play itself out.

So there I was, on the phone, tearfully explaining this latest development to a sympathetic ear, when Eli and Laila ripped into the room like a coupla EF5 tornadoes.

Ugh, kids. Can’t you just let mommy be pathetic and ridiculous alone?

“WHO ARE YOU TALKING TO MOMMY? WHY ARE YOU CRYING MOMMY?” demanded my son. “WHY DO YOU HAVE TEARS MOMMY?”

They successfully hijacked the conversation with my sister, who started asking them about what they wanted from Santa. As Laila offered a list, in great detail, Eli body slammed me.

“Buddy – the wine. The wine!”

“Oomph. Eli. Really. No more body slams. OOMPH.”

The interruption curtailed my pity party.

The wine sloshed onto the sheets.

Eli managed to simultaneously shout out Christmas list while slamming me like a 36-pound wrecking ball.

I stifled a laugh. Wait a hot minute….I’m supposed to be in the depths of despair here….

Hey – what’s this…My wine glass …it’s …it’s…half full…

WTF?

It took body slams and a f ew days of perspective on our latest turn with bud’s disease to banish the sadness and bring clarity.

His cough improved after days of breathing treatments and 1.5-two hours of shaking vest. We did as much manual patting per day on the spot giving him trouble, that upper left section of his lung, that we could get away with.

We kept him home from preschool for a week just to get a break from germs.

Mark took three days off in addition to his Thanksgiving break to care for Eli. I’m really glad he could do that. They were both really ready to get back to their routines today. Eli missed school. His classmates missed and worried about him. Mark was slowly, steadily losing his mind (no offense, little buddy!).

Keeping Eli home doesn’t make sense. Let’s face it – germs are everywhere. We live in a big wide world of germs, and I’m not raising Bubble Boy.

We went to fill a liquid version of Cipro and learned from Walgreens it is on backorder until February. WHAT? Working on finding the antibiotic today. (UPDATE: Found)

I hope it works, because it is his fourth round of antibiotics since September when he started hacking.

What if it doesn’t?

I turned that  scenario over in my head. You know, if we have to hospitalize Eli – is that really the worst thing that could happen?

No.

Because modern medicine.

Mark told Eli last night he has a frog in his throat and tadpole in his lung. Eli seemed pleased to envision amphibians stuck in his body.

“That’s why we’ve got to pound on you and you do your medicines,” Mark told him. “We’ve got to get them out of there.”

“OK, Daddy.”

Eli drifted off to sleep vaping albuterol and dreaming of tadpoles.

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5 #GivingTuesday ideas

Today’s the day. Everyone is asking for a handout!

That includes me!

Donate here.

It’s Giving Tuesday!

Here are 5 ways to give:

5waystogive

Sickboy

I discovered a podcast. More specifically, my pal Marquina discovered a podcast. She is only a year older than me –which makes her, what, 29 maybe — and she is a cancer survivor. And she mentioned she was at this camp for adults who have overcome stuff – like cancer – and she met a man named Jeremie. He is 32 years old and has cystic fibrosis. He also has a great podcast called Sickboy he’s put on with his best friends. It’s hilarious, vulgar and inappropriate. In other words, it’s everything a podcast about sick and dying people and destigmatizing illness should be. Seriously, though. Sometimes life gets so absurd, you just have to laugh. Humor is medicine. It’s definitely Jeremie’s medicine. And if he is alive and thriving at 32 with my son’s fatal illness, I’m willing to dose on that.

So you should donate to Jeremie’s podcast. You can even give a small amount a month – like $1 – which is pretty exciting.

Bonus: Canadian accents

Esophageal Cancer Action Network

One in five people diagnosed with esophageal cancer will survive five years.
It’s a depressing statistic, and one I know well. My mom died in October 2010, just one and a half years after her diagnosis with this cancer. Luckily, she got to meet my baby girl Laila. We said goodbye when Laila was just six months old.

We had no idea that acid reflux can cause cancer. It’s something my mom suffered with her whole life, but we never even thought about getting her an upper endoscopy, a procedure that could lead to early detection and be lifesaving. More people should know this, and that’s what ECAN is all about.

You can give once or schedule a recurring donation. Easy like Sunday morning.

Foster Wishes

There are 11,000 foster children in the state of Oklahoma.

They need Santa, too.

Foster Wishes is my favorite charity in the Sooner state. My family adopts a child every year.

There is so much yuck gross commercialism involved in the Christmas season – why not give to a little person who would appreciate a doll or truck more than any little person on this planet? My colleague’s sons are adopted. They had a handful of McDonald’s toys to their name when he took them home – you know, the kind you shovel in the trash when your kids aren’t looking.

If you are local, you can request a Christmas list from a child and drop the toys and goods off at a local spot. Or, you can donate online.

Miracle messages: Because everyone is someone’s somebody

This nonprofit began when its founder took a walk on a San Francisco street at Christmastime and asked every homeless person he met if they might like to record a video message for a relative or loved one. A man named Jeffrey took them up on the offer. His video was posted to Facebook. Within an hour, they’d found his sister, which led to a phone call reunion after 20 years apart. Jeffrey had been listed as missing for 12 years.

There are a variety of ways to get involved, from contributing to a crowdfunding campaign to starting a local chapter. Read more about the org at its website.

Help me be your corporate gadfly, baby!

You didn’t think I’d let Giving Tuesday go by without begging for cash myself, did ya?

It’s true – I’m raising money. I’m raising money in my personal life, and online, to purchase stock in Vertex, the flagship drugmaker that holds the power to save my son’s life and/or bankrupt him and/or his family.

The latest drugs that can help Eli cost more than $250K/year.

Donate here.

If I hold $2,000 worth of Vertex stock for one year, I can propose plans at the annual shareholder meeting in Boston related to areas of corporate governance.

Don’t fall asleep, listen: Shareholders want companies to do well, just like I want Vertex to succeed and thrive. It’s just – the company needs to be accountable. I had this meeting with them in Boston and they weren’t accountable. This is one way to make them more accountable.

I’d also really love it if you, right here, right now, took $1, $10, $25, $50, etc., out of your tin can hidden in the wall, or, your bank account.

Next, put it white envelope and write on that envelope “Vertex shareholder cash.” Or, stick it in your savings account.

Then stay tuned, because I’m going to teach you (and myself) in 2017 to be a corporate gadfly. We are going to form a coalition of shareholders who will look out for the cystic fibrosis community by keeping an eye on the companies producing Eli’s drugs. No one is going to do this for us, don’t kid yourself.

Nearly every patient advocacy group out there is tied up with drug company money. Think about that as you listen to the thundering silence of those “advocacy” groups on our drug costs.

Keep reading this blog. Keep stashing money in your special Vertex boot.

Keep keeping on. Don’t give up.

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Eli won’t give up.

Donate here.

Eli’s cold doubles down, and so do we

Any cold Eli catches can flare up the gunky stuff his lungs hold. It is called a “CF exacerbation,” which is, basically, a bacteria party in Eli’s lungs.

That is what happened in September, and then October, and again, potentially, in November.


We’ve reached 60 days of hacking and counting after three rounds of antibiotics. The meds would appear to work, Eli would get better, and then, sicker. He’s been off antibiotics for about a week now and doesn’t seem to be getting better.

It all sends me into periodic moments of despair. I’m stuck in one now.

I feel like I’ve somehow failed him. Like – maybe we should have pulled him out of school for a week. Or I should have enrolled him in a sport by now to boost his lung strength. Or hooked him to his shaking machine for more hours of torture. Or started cooking anti-inflammatory meals sooner than a month ago.

And then I think…You have no vacation or sick time left and need to save your salary for larger medical events, for which unpaid FMLA won’t cut it.  Mark’s teaching schedule means Eli can be home later this week for a Thanksgiving break, and around Christmas, too, for a break from the preschool germs.  And as painful is it is to watch his colds stick, he needs to catch them to develop his immune system. Hey, you –  he is just 3, too little for most sports, and you run and play all the time in the fresh air with him, until he plops down on the sidewalk and claims he is “running out of power.” You took him to swim class. He refused to let you leave him with the instructor, screamed bloody murder and chased you to the bleachers before you gave up and took him home early because he didn’t want to be there. And are you not about to enroll him in both winter basketball and spring hockey now that he is a little older? And at least you care about nutrition, you!


My mom guilt ghost haunts me, never far away. All I can do is push the negative thinking aside and focus on what we can do next for Eli, instead of how we have failed him.

I’m taking him to see the doctor tomorrow, and in the mean time, collecting a poo sample from him. The method would otherwise be a prank -plastic wrap over the toilet bowl is apparently how you get that done. I shall next take that encased poo, place it in Tupperware and transport it with us. Oh, joy. His clinic is testing him for C.diff because he has the runs. C.diff can happen when antibiotics inadvertently clear away your good gut bacteria, and I am hoping and praying Eli does not have this, because that would be serious.

They are also going to swab him to see what viruses or bacteria are lurking about in his lungs.

We in the mean time added the unsexily-named postural drainage to his routine, in addition to his shaking vest, breathing treatments, enzymes, Culturelle and vitamins that he takes. That means Mark or I will pound on him for an extra half hour with cupped hands or rubber cups while putting him in different positions, all designed to get him to clear infected gunk out of there.

We gave it a go over the weekend, and Eli tolerated the therapy and goofed around with me while I tapped on him.


Then he broke my heart.

“Why are you doing this too me, Mommy?”

“You have a disease called cystic fibrosis.”

He paused thoughtfully, then turned and asked, “Is it bad?”

What could I say to my baby, my inquisitive, rowdy little bruiser with dimples and curls, as I tapped him with blue rubber cups on the carpet Saturday morning?

“It’s – it’s just a disease,” I said, shrugging. “It’s just a disease, buddy.”