This is Eli

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

It’s time to face the music!

As much fun as it is to stare at my baby’s face and distract myself with things like Target quilts and Walgreens Instagram photo aps, it’s really not going to cut it.

I gave birth to Eli. He threw up. Kept throwing up. He was admitted to the neonatal intensive care unit at Mercy. He took a helicopter ride to Children’s. He had a blocked bowel, a condition that is serious, a condition that can kill, has killed. What followed were two major surgeries and 30 days in the section of the hospital reserved for its newest and most fragile patients. During that time, we learned he had cystic fibrosis, a chronic, deadly disease that takes a person’s lung function away over time.

This is the part where I thank God I have insurance.

The darn chopper company was the first to send a bill. A $22,000 bill, a week after my son was born. Well, that sent me into a state of panic. If that was just the beginning, we were ruined.

Sensing financial doom, I started a fundraiser for my family. We raised about $1,800. I’m extremely grateful for that boost. It paid for two $850 deposits and a good portion of the at-home nursing care Eli needed for his month spent with us in between surgeries. Thank you. Thank you. Thank you, everyone.

Still, running your own fundraiser is a chump move. I know, I know.

I cancelled mine, opting to raise money for research instead. In the mean time, my family members have thrown us several. My sister-in-law, Laura, did this party at a store called Hot Mama. We got a check in the mail today. My sister, Laura, did a Pampered Chef party, raising money for CF research and then matching that with a donation to my family.

As much as I appreciate it — there are really not enough words that exist to express the depth of my gratitude and Oprah did not tell me to say that I just did — Mark and I can’t rely on charity to pay for the care Eli will need throughout his life.

We need to get ahead of it.

That means I can’t shove bills into the back of a drawer while I distract myself by staring at my babies’ faces.

Time to grow up.

It only took three decades and some change and then a second child, one with a chronic disease.

We need to get our money right.

Money. What a fascinating topic. How much other people have, and how they spend it, is an endless source of gossip and speculation. People kill for it. They aspire to have a pile of it. They die without a penny of it. It is wasted, stolen, given and used to do wonderful things. Our gold standard’s been gone for a long time, or so I’ve been told. Doesn’t that make money, technically, worthless?

Oh yeah, and it’s the root of all evil.

Well, be that as it may, I need it to pay for care that will keep my child well. And to do other things. Like, survive.

We’ve got some, not a lot. Not very much at all. Let’s be honest!

It’s taboo to admit that. Like, shouldn’t we be fabulously well-to-do by now?

Except I’m a journalist. And Mark’s a teacher. And we married each other. Then we had two kids.

That was stupid!

Shouldn’t one of us have a trust fund or be a company man? Wait a minute, this whole deal would make more sense if we were both investment bankers! A power couple! Maybe all of us who breed should do so contingent on being one half of an investment banker power couple!

That would make life easier.

Then the world would be full of investment banker power couples.

Sounds dull.

Easy is easy but it comes with its own special set of pitfalls. Like boredom. Struggle is a more intriguing topic. That doesn’t make it easier. It’s hard. So hard you want to pull your hair out sometimes. You wonder if you can handle it, really. If you’re cut out. You want a damn vacation. On a beach somewhere. A break.

We all have choices and each of us has made a lot of choices along the way to get exactly where we are.

Mark and I are not bitter. We’re not unhappy. We’re also not perfect.

It was a real chump move to throw all my bills in a drawer for, like, months.

At our house, Mark pays the bills, because I’m a flake when it comes to paying bills, or putting anything in the mail, and we both know this. He pays everything but the medical bills addressed to either Eli or myself. That’s our deal.

Today, Mark couldn’t help but notice I had started getting collection notices.

Pathology and radiology wanted to get paid.

We absolutely had the cash to pay those bills – both between $75 and $100.

Why hadn’t I?

Oh fiddlee dee. I had a lot going on. Finding a nanny, getting back to work, figuring out not just how to care for two kids, but how to make it work when it was so important to keep one of them well. And oooh, Target’s just done another designer collab! Wait a minute — neon? Neon, really, neon? No. Ew.

Excuses, excuses.

The bill collector’s come a knockin.

Time to face the music.

I paid a number of bills today. I set up payment plans.

Mark and I, our family, we’re people in the middle. Like a lot of people in the middle, we’re about one ordeal away from total ruin.

Things don’t go as planned sometimes. Example: an unexpected illness arises.

Unexpected illnesses happen. A lot of times, they happen to people in the middle. The people in the middle don’t qualify for government programs to help them. The people in the middle aren’t rich.

If you’re not fabulously well to do, if you’re not well prepared for a large bill associated with some kind of ordeal, there is a chance you are screwed.

We’re not screwed.

Eli’s bills are in the thousands, not the 10s of thousands. I haven’t tallied it up yet, but it really doesn’t seem like a terrible expense given the fact my baby is alive because of the excellent care he received.

I’m totally willing to pay this.

That chopper company bill? It was in Eli’s name.

“I’ll just give it to him,” I told the customer service person. My voice was just dripping with snark. I mean, just oozing. “I’m sure he’ll take care of it, my 3-month-old son.”

I used to be nice to customer service people. That changed the day I held a 22K bill in my hand addressed to an infant who was in a neonatal intensive care unit.

For a company that transports people so they can receive life-saving care on the double, I found the superfast billing practice predatory. And annoying.

So my tone was more along the lines of : Are you @#$# serious?

The company redirected the bill to my insurance company, rather than my infant child.

This is what happens with insurance companies: they haggle with the hospital or whatever entity it is that is trying to get paid. They haggle hard. The insurance company wants to save a buck.

$22K became 19K. And then my insurance company, instead of tiny Eli, wrote the check, in full.

I want to do more than pay.

I want to prepare. For the next time.

The thing with cystic fibrosis – you don’t get better.

It’s not a disease that gets terrible in infancy, the first year of life. The lungs are typically good to go during that time. We put Eli on a vest to shake him up as a precautionary measure to prevent infection. Now, with Eli’s care, the focus is on nutrition.

He will get sicker. There is a chance, later in life, Eli could need organ transplants. A pancreas. Lungs.

I don’t like to think about that.

There is a chance medicine will advance to the point he won’t need to mess with that kind of ordeal.

There is a chance it won’t.

We don’t know.

We are going to prepare.

That’s going to mean a lot of things for my family, and I’m not even clear yet what all of those things are.

The first thing that it means, is that we are going to take those bills out of the drawer, make a lot of phone calls and write a lot of checks. I started that today.

I’m making a pledge, right here, on the world wide webs, to open my mail on time.

I’m going to stop throwing down money on lattes. What a waste.

It’s the little things. Little things amount to big things long-term.

I don’t want people to feel bad for us or feel like we think we’re owed something or we’ve got our hands out.

We’re just like anyone else. Here we are, sitting in the middle, facing the unexpected, figuring out how to pay for it.

Not sure yet, but one thing is clear: It’s time to face the music.

Stretching

Stretching

Advertisements

3 thoughts on “Time to face the music

  1. Ruth says:

    First of all, you could sell that adorable photo of Eli! Wow. What a cutie. I love the ideas of fund raisers, that aren’t fund raisers. I’m thinking. I love your writing.

    Like

  2. Angela says:

    So true. And I can relate having had two unexpected surgeries and trying to save while living with in-laws. Like you, we’re not poor, just trying to get ahead, just a little. But if there is anything more I can do, I would in a heartbeat.

    Like

  3. Carrie says:

    Prayer is powerful Julie. Love You Guys

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: