This is my son, Eli.
He was born Dec. 5, 2012 in Oklahoma City and required emergency surgery within his first day of life. Eli was diagnosed with cystic fibrosis, a fatal genetic condition that robs a person of lung function over time.
You know, that sounds really dreary.
We’re not dreary people, I swear! A little moody, sure, but who isn’t?
I am a mom, but I am also a reporter. On this blog, I attempt to cover life.
At work I chronicle the violent, the unexpected, death, tornadoes, wildfires, rebirth, journeys – you know, life. One time I chronicled a 1-lb. longhorn “seismic” burger named for Oklahoma earthquakes. Another time I knocked on a trailer door and was met by a young woman pointing a 12-gauge shotgun at my chest. She invited me in for an interview.
In my other world, I have my daughter, Laila, 7
6, my wee Eli, 4 3, and a husband, Mark, ageless, with rather unruly hair. Having a child with a deadly disease means I think a lot about life, the preferred focus of my existence.
Every once and a while I think about why I continue to write here.
I’ve got a lot going on. No time to try and get famous on the Internet. I need something else.
I started because something went wrong after we had Eli and I didn’t know what else to do.
My latest conclusion is that I keep writing because I want people to know about my son, but especially about life with his disease. Most don’t understand what CF is, or how fast treatments for the disease are changing. What does it really take to navigate healthcare? I don’t understand that, but I’m figuring it out. Those who don’t have to deal with this disease, even people close to me, may not want to hear exhaustive details about our challenges, and I don’t want to burden others in my life with that information either, necessarily. For those reasons, I continue to take our experiences to the interwebs. Writing is an outlet for me. I hope by keeping it up I can help others to be more understanding and sensitive to those on a different path in life than theirs. I hear from readers going through the same things that we are, and it helps me a lot. It helps me not to feel so alone. I also want to emphasize here that Eli is not his disease. He’s an adorable little guy with a big smile. I’m learning a lot, changing and growing, because of him.
He’s given me a big boost of creative energy. Not sure where it’s coming from.
Just like any other mom – I’m tired.
Since I have a life-oriented existence, I write a lot about life – his life, our lives.
It’s a nice balance to writing about death all the time. Notes on death occasionally slip in.
Speaking of life, at times I write some stories in series. The series might be a foray into storytelling in parts, or be an open-ended journey alone the lines of a connecting theme. I may end with a cliffhanger or something unanswered. There are a few reasons I decided to try this. Sometimes, I just don’t have the answers yet! I can’t always jazz hand out whatever’s knocking around in my head in a sitting I don’t have the time! And, I hope you come back.
Here are a few examples.
Read in order, but you may have to scroll to the end and read up. One of these days I’ll fix that:
The Runner’s Injury Mystery Hour
The Facebook afterlife-my mom’s social media presence after death
A Mary Kay Makeover in Noir – just because
My buddy and his tummy – Eli’s ongoing tummy issues
In the land of the rodeo queen – When I tried to learn to ride a horse because I met a bunch of rodeo queens because this is Oklahoma!
I like to experiment with the array of storytelling options that exist on the interwebs, ie, I make weird projects, ie, I sometimes take gawker portraits.
Some of my ideas (and by ‘some’ I mean 99 percent of them) wilt on the vine, to be sure!
Here are two that I still like to add to now and again.
In case you care: facesatdisaster.tumblr.com is me turning my camera at onlookers and humanizing elements at homicides and other disasters.
I like data. That’s why I made Chicks Dig Data, a Tumblr for lady journalists and their supporters who dig data. Can you dig it?
This blog has also become a place where I play with iPhone doohicky things and post pretty pictures of my children because I like to stare at their faces.
And of course, I want to write about Eli, especially updates on his growth and development. With cystic fibrosis, during the first years of life, there is a big emphasis on nutrition and tracking his growth.
I write about the ways he is changing us for the better.
I tell stories because I engage with life this way.
And Eli, my baby, is just a teeny man but he has made me realize this: It’s good to be alive.