This is Eli

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

Eli loves school.

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Processed with VSCO with a6 preset

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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Processed with VSCO with a6 preset

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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Processed with VSCO with a6 preset

 

 

 

 

 

 

 

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