This is Eli

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

This is my son, Eli.

Giving us a cheeky 'smize.' He likes the blanky.

Giving us a cheeky ‘smize.’ He likes the blanky.

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.

Us

Us

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8 thoughts on “About

  1. Rhonda says:

    For what it’s worth, I love when I see a new email come in from you. I love reading about you and the family and about your son. He is a handsome fella and you are a wonderful mother. I found your blog when I was pregnant with my daughter. I found out I was a carrier for the cf gene delta f508 and couldn’t afford to get my boyfriend tested to see if he was a carrier. My whole pregnancy I struggled with the what ifs and than found you. You gave me hope and strength that if my baby had this it would be ok. My cousins son has cf and times are changing for this disease. It is becoming more treatable as it seems.My daughter is fine but I just want you to know you gave me strength when I was very unsure and scared during my pregnancy. I’m glad you continue to write this blog, I look forward to reading it.

    Liked by 1 person

  2. Mrs Crawshaw says:

    Thanks for writing this blog. I too have a baby who has been diagnosed with cystic fibrosis, he is now 8 months old and although I wouldn’t change him for the world it can be so hard. It’s good to hear about other peoples stories and to know that we are not alone. Eli is beautiful and he is lucky to have a mom that obviously loves him so much. Good luck to you, Eli and your family xxx

    Liked by 1 person

  3. mamabearerin says:

    I started blogging a few months ago as an outlet myself. I am 23 weeks pregnant with my second son and just found out this pregnancy that both my husband and myself are CF carriers. We have opted to skip the amnio for the wait and see approach and are hoping for a happy outcome in June. While I am certainly hoping for the best, I’m also preparing for the worst. I came across an article about you and Eli during one of my many google searches a couple months back and then lo and behold, while doing some browsing around WordPress this evening I came across your blog. I’ve been finding a lot of strength in blogs by mother’s of cf children. I look forward to following your story. Best wishes to your family.

    Liked by 1 person

  4. lindaFB says:

    Just want to send you a hug from one mum to another. xxx

    Liked by 1 person

    1. j&m says:

      So very sweet, thanks!~

      Like

  5. Tiffany says:

    Thank you!!! Seriously! It’s nice to read a blog that has a CF kiddo my son’s age. I’m CF momma, my son just turned 3 years old (born July 2012). He’s our only child. Our family won the CF lottery so to speak. My husband’s sister has two boys with CF (her and her husband’s only two kids). All the boys are double delta f508.

    Liked by 1 person

    1. j&m says:

      Hi! Thanks so much and thank you for reading!

      Like

  6. Leah says:

    I have a 2month old baby girl, June Marie, who was diagnosed with CF at 2-weeks through routine newborn screening. I think your blog and others like it are especially important for Moms like myself who are in the early stages of understanding what life will be like with a CF child. It’s not like all of us CF Moms can get together and let our kids play while we discuss our challenges, so we have to find resources online.

    I have a 3yr old son as well, but learning to accept our new reality with June has had some major ups and downs that we didn’t encounter during my son’s early months. Reading your blog and seeing photos of your beautiful family gives me hope that we’ll find a norm with June that looks a lot like the life we always envisioned. On most days we feel very positive about her future and it helps to see/hear about other positive stories. Thanks for writing!

    Liked by 1 person

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