This is Eli

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

I cringe as a woman hacks all over the scrapbook paper. She does not cover her mouth.

Naaastyyy.

I mutter this to my 2-year-old, who is stopping every other step at Michael’s.

I push my cart onward, away from the craft-aisle hacker.

Laila remains unaware of my disdain because she is, first of all, 2, and, secondly, preoccupied with a mini Easter-themed watering can.

We are there because I’ve been potty training Laila all week. I promised to take her to get new craft stuff so long as she pee peed all day on the potty.

She calls crafts “craps.” As in, “Mommy, you gonna do craps with me?”

“Yeah baby. We’re gonna crap it up. Just keep pee pee’in on the pot.”

Just a random picture of Laila and Eli to break up mommy's long-winded blog!

Laila and friend

I have Eli in his car seat in the cart. The cart is too small to seat two with his honker carrier hogging the whole thing. So Laila is running wild at Michael’s, picking up this crap and that crap hyper-style and declaring she wants it all.

Speaking of hyper, I’ve been hyper-aware of others’ coughs since I had Eli.

I’m shocked full-grown humans are so dumb and inconsiderate when it comes to hacking in public.

Pam warned me about this.

People are stupid.

She didn’t say that. She said something along the lines of “You are going to fight with stupid people.”

I’ve been meaning all week to write about my dinner with Pam, which was last Sunday.

Then I started potty training Laila, and interviewing nannies, and setting up Eli’s next Synagis vaccine, and you get the idea. Also, as my son’s only food source, I’m tethered to him. Everything that has to be done has to be done in between feedings, which are about 2.5-3 hours apart during the day. Oh, there are so many many excuses not to write.

Arranging for sci-fi delivery of Synagis: excuse not to write.

Arranging for sci-fi delivery of Synagis: excuse not to write.

Then, after our dinner, I realized I had an ethical obligation to ask Pam that it was OK that I write about her and her two teenage boys, who, like Eli, both have cystic fibrosis. They even have the same mutation – the Delta F508. I had to work up the courage to ask her that it was OK to write about what she told me, which took a few days. And I had to let our conversation sink in, which took a few days. And when I did call her up and make sure it was OK to type up the things we discussed, I had to confess that I already typed up the things we discussed after the first time we discussed them. And I had to give her the blog address, and then make sure she was OK with what I said before.

She was.

“I laughed. I cried,” she told me on the phone.

I waited for the “but.” There wasn’t one. She liked my post about her. She liked my post about the poo bags. It brought back her own poo bag memories – her youngest son Preston was, like Eli, born with a blocked bowel.

Write about me momma

Eli

Whew.

“We should write a book,” she said.

I like how Pam thinks.

She had suggested we meet for an early dinner on Sunbday.

I drove south of OKC, eager to get out of the house and out of the city. I’ve barricaded us in the house since I had little man, avoiding flu season, the world, etc. It’s not a great way to exist long-term. I don’t plan to. Really, I don’t. That’s part of the reason I took Eli and Laila to the craps store.

Back to the dinner.

Early dinner. Does that mean…totally sober dinner? Bummer. I guess I’ll skip the wine.

We sat down and Pam ordered a sweet tea. A sweet tea with a shot of vanilla vodka in it.

Southern and specific and low-calorie and girly, with an edge.

I like the way Pam drinks.

I got a Malbec. I’m not sure what that says about me. I love red wine and I’ve been on a Malbec kick since I decided roughly two years ago it was my fate to vacation in Argentina one day.

Then Pam ordered a salad with dressing on the side.

Discipline.

I got a turkey burger with fries. I’m on a diet, except, you know, for the giant glass of Malbec and fries.

Less discipline.

She’d tell me a lot of things, but there are a few things that really stuck with me.

Like the bit about the towels.

Her sons don’t use towels twice in a row. That makes for a lot of laundry.

Why?

Pseudomonas.

It’s a bacteria often found in the lungs of people with CF that can cause chronic lung problems. It’s a bacteria that likes to grow in damp, dark places. Like in a towel cast on the floor. It likes to wreak havoc on the lungs of those with CF, from what I understand (which is not that much yet at all).

Pam’s youngest son, Preston, 16, has Pseudomonas in his lungs. Her oldest son, Stephen, 19, does not. I think everyone will get this common bacteria at some point in their life.

Stephen is at college now and he wants to be a doctor.

While he’s at college he can’t do his laundry in the laundromat.

This is so he doesn’t breath in bacteria like Pseudomonas, which also likes damp, dark places like community washers and dryers.

So Pam and her husband get a laundry service for their son, who doesn’t use towels twice. The laundry bill was $400 last month.

These are little things that become big things to people with CF and their families. But they just deal with it.

Germs are everywhere, and you can’t avoid them. You do what you can, though, to remain vigilant, if you are a Pam.

Pam and I also discussed how it seemed more than a little stunning that vigilant parents seem to be…in short supply, shall we say?

Whilst stuck in the NICU for nearly a month, I couldn’t help but notice the absence of so many parents. Maybe granny was there but daddy and mommy weren’t…ever. Or maybe mommy was there, so dedicated, like Teeny Baby’s mom, singing him a Native lullaby. Teeny Baby’s mom was always alone. Where was dad? Why were there so many lonely babies and lonely mommies?

It was the same way when Pam was there, with her son, with his blocked bowel, 16 years ago. Lonely babies. Lonely mommies.

In my infant CPR class, a class they required you take before you could check out of the NICU, three of the mothers or premies asked for educational material to help them quit smoking.

Wait, they were still smoking? After having a premie? So they were smoking while they were pregnant. So maybe that’s why the premie was there in the first place, since smoking has been linked to preterm birth. And, WOW, who is paying for that gazillion dollar NICU stay? WTF.

Pay no mind. I’m just letting my mind spin whatever way it wants, judging the crap out of these other mothers like a complete and total capital B. I can’t help it. When one of them busted out in the CPR class with “But I love my nicotine, yuk yuk yuk,” I almost fell out of my chair.

People are stupid and children suffer for it and before we know it we’ll all be living on the set of Idiocracy.

What can you do?

I need to not be stupid. I need to be more Pam-ish.

I did not know Pseudomonos grew in damp, dark places, like in towels or community washer-dryers.

I need to know these things.

Pam reminds me of Sandra Bullock from The Blind Side, minus Michael Orr and plus two CF teens.

She’s dedicated. She pounded on her babies’ lungs for five years. Five. Years.

Day after day, night after night, about an hour a day each, Pam tapped on her buddies’ chests to help loosen up the mucus that encourages bacteria to thrive. Her husband is a pilot and he works and is away a lot. That means their care has been mostly up to her.

When her oldest turned five they came out with the vest to help do the work of tapping for her.

I’ve only had to wait two months.

Our vest should be on the way this weekend.

A biology teacher told Stephen’s best friend’s science class that they would never know anyone with CF, since kids are dead by high school.

The friend raised his hand and informed her that Stephen was two doors down.

The teacher did not believe him.

He got Stephen, who said that, while he did have a feeding tube, and while he did have to take insulin for diabetes that people with CF tend to develop, he was very much alive. He played baseball. He rode motorcycles.

Unfortunately, Stephen faced a similar situation in college in Arkansas recently.

He wants to be a doctor. His biology professor told his class people with CF drown in their own mucus.

Stephen was so pissed off he stormed out of the class. He later confronted the professor.

Lung infections do create scar tissue and reduce lung function. People with CF do not drown in mucus.

People are stupid. Seriously, teachers of the world, update your curriculum once every 40 years.

Stephen has had to fight with stupid people.

“You are going to fight with stupid people.”

So we are in Michael’s, and we grabbed a few Michael’s clearance items – some Valentine’s Day stickers, some stamps – and we are checking out. The hacker is also checking out. I go in the line she is not in. Eli is in the cart, in his car seat. He has this snuggly over-the-carseat zip-up warm thing around him. But his little face is peeking out, because Buddy does like to look around at the world, after all.

Laila is messing with the Gummy Worms or some such item.

“Oooh, mommy, look at this!”

My Spidey sense activates.

The hacker is there, behind me.

“How old is he?” she asks. Her voice is husky, like a 30-year smoker with bronchitis.

She is actually poking her head around my baby.

Oh my God get the frack away from my baby. He’s got CF. He’s got CF. He’s got CF! How the eff did you just beam over to my line woman?

My internal monologue explodes. I say nothing

I move awkwardly to block her from my baby.

“He’s two months.”

“How old is she?”

“Almost three. Yeah, I’ve never taken them both out before like this. It’s stressing me out.”

I purchase my crap items as fast as I can and bee-line it out of the crap store.

I was unprepared to address her stupidity.

I am going to fight with stupid people.

And I need to be prepared.

The ultra-rude thoughts flowing through my mind could use a filter before I unleash them on strangers like the craft-aisle hacker. She’s not a medical staffer messing up my son’s care somehow. I don’t need to verbally destroy her. She’s a well-intentioned stranger, but, yes, one on the dim side.

On the phone the day after the Michael’s encounter I asked WWPD.

She suggested I say something like,

“I don’t mean to sound rude, but can you stay back? My son has a chronic lung disease.”

Don't cough on me, dum dums of the world!

Don’t cough on me, dum dums of the world!

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4 thoughts on “Coughing in the craft aisle

  1. Katie Majava says:

    I love the way you write Julie and am so thankful for technology to be in the loop about your cute kiddos and Eli’s story! We are praying for him and all of you here in Indiana! I love the line about stating back – a very polite way of telling people to BACK up!!

    Like

    1. j&m says:

      Thanks!!! Thanks for reading too!

      Like

  2. mandy says:

    I hear you! People are gross! Being sick so often I too am ultra aware of germs. Working in public is disgusting! I even find my co-workers disgusting. After seeing 2 people blow their nose and not wash/sanitize their hands, I posted a page about how to properly sneeze, cough,blow your nose and wash your hands! We all touch the same stuff daily and it totally grosses me out. I am amazed how many people I see that cough into their hands or don’t cover their mouth at all, rub their noses and wipe their eyes. No wonder I am always sick! I’d be interested in seeing what kind of germs are on those pinpads and stylus’ at the register.
    Good luck on keeping the gross and crazy people away from you all!

    Like

    1. j&m says:

      It is unreal – I’m much more sensitive to bad public health stuff like that since buddy has a chronic illness. Let’s all cover our mouths when we hack!

      Like

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