This is Eli

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

A gala?

This worried me.

First of all, I’m not a regular on the gala circuit slash I’ve never been to one.

Secondly, the world of cystic fibrosis, my son’s disease, has been a hard one for me to accept. It’s hard for me to think too far ahead when it comes to Eli. Looking too far ahead means facing things I don’t want to face. Namely, that my son, as medicine stands now, is going to get sicker. That yes, no matter how hard we try to forget this, his disease is deadly, and it’s not going away. I struggled to finish my piece for The Oklahoman several months ago for the same reasons.

I do feel drawn to this cause — raising money for research, and awareness for CF. I’ve thus far inched my way in, unsure of what I could handle. I’ve met a few wonderful people who’ve helped us feel not so alone. Writing feels good and brings me a lot of comfort, so I do that. The Cystic Fibrosis Foundation’s annual gala is central to the CF community here in Oklahoma. It raises a lot of money. There are lots of people who show up who have loved ones who have CF, or are the friends or relatives of those who have died of the disease. Would I be able to face all of that and hold it together?

I eased my way into the gala, helping gather a few humble little items to auction off. I volunteered to set up a little bit in the morning. There I met another volunteer, a sweet woman named Laura. Her father died of CF. Laura and I “fluffed” ‘baskets of love’ family members put together to honor a loved one with CF. This was fun — we arranged and and fawned over the goodies, and I read the info cards about the person each basket represented. Already, I recognize some of Eli’s sweet ‘lil CF buddies. I was sorry to hear of Laura’s dad’s passing, but at the same time, it gave me hope. He’d had a child. Men (I’m not sure about women) with CF are actually sterile, something I’ve never addressed here. However, with modern medicine, kids are possible. Laura was evidence.

Cure CF
Getting to the gala was the (relatively) easy part. I forced myself to do crafty stuff for the auction and I didn’t even jump off a cliff in the process. I did burn my fingerprints off with hot glue as I smooshed flowers on to my auction baskets, but the wine I had whilst wielding the hot glue gun took my pain away. Making a look, getting dressed up — that was the fun part. Galas are prom for grown ups, with booze! We were going to the prom! Moments before we were set to leave, Mark walked down the stairs in a mismatched jacket and pants. Apparently, the pants for the one suit he owns had ripped. He also discovered his black shoes were broken. We used Super Glue to patch him up. Good Lord. We ditched the jacket. He was walkin’ kind of funny so his shoe didn’t fall apart. Time to make our entrance to society!

The event itself was super fun with lots of Oklahoma touches. It was at the National Cowboy and Western Heritage Museum. And yes, there were cowboys in attendance. There was a yummy dinner with a little southwestern spice, a photo booth and all kinds of auction items to browse — signed Duck Dynasty poster, ppl! (I totally wanted it). Three nights at a New Mexico ranch, ppl! (I totally wanted it). My friend Alyssa did a great job as emcee for the evening’s presentation and auction.

Then came the reality check.

Alyssa and the ladies of the CF chapter showed a clip of a documentary about a woman with CF. The woman was beautiful and vibrant at 23. Without new lungs, she would die. She got them. She blogged and made videos through the process. Two years after her transplant, flanked by loved ones, she posted a final video. “Thank you for loving me,” she had said. She was going to die. Her body rejected her new lungs. The film cut to her parents. A half hour after her post “She just stopped breathing,” her father said.

Alyssa brought it back to Oklahoma. She read the names of Eli and his CF buddies. Their pictures flashed across a giant screen.

We have to find a cure.

Tears poured down my face. Mark held it in, barely. He squeezed my hand. This was one of the saddest things we’d ever seen.

Was I ready for that? Probably not. But I’m so glad we saw it.

This is what we’re up against. This is our reality. If we do not find a cure for CF, that’s what awaits Eli and his sweet little friends. They will stop breathing. They deserve better. They deserve to live.

The Sooner chapter really came through this year — the ladies brought in a fast-talkin’ Oklahoma politician to auction off some pretty fancy stuff.

I mean, after that movie, that reality check — you better believe people reached deep into their pockets.

The beautiful auction items. The reality of CF. The skill, humor and artful pressure applied by that auctioneer. Synergy, friends, synergy. Cash flew at this cause.

My son’s life.

It was a beautiful night.

I feel stronger after experiencing it, and imbued with a renewed sense of hope for Eli’s future.

My son is going to live.

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Breath of life

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2 thoughts on “Beauty, reality, Breath of Life

  1. Ruth says:

    Beautiful

    Like

  2. Amy says:

    I saw Eli’s basket but didn’t know you were there. It would have been nice to meet! It was amazing to see how generous people were and how much was raised to help find a cure. I have high hopes for our babies.

    Like

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