I kinda hate the title of this post. And I kinda love it.
All that alliteration…the nod to financial experts on cable that point at you and yell at you about financial matters…guh….I’m talking to you, Suze Orman. Stop. Yelling. At. Me.
For the past few Mondays I’ve been spending the mornings trying to get our financial life in order, against my natural tendency to avoid the subject as if it were, oh, I don’t know, a Cholera-infested corpse.
I’m not doing this because it’s cutesy, or popular to be frugal or to make funny little blog posts about my slumlord and our dead tree, etc…
Having Eli, a little baby with a chronic disease, has been transformative in every sense of the word.
The financial aspect of cystic fibrosis is daunting.
My friend Pam put it this way.
The disease, she said, “Is an expensive pain in the ass.”
No, she didn’t mean our little ones are pains in the asses — although just like any other child, ours is sure to be the source of the occasional headache…

Aren’t I cute. I’m going to grow up and do naughty boy teenage stuff that makes mama coo coo. hehehehehe
The disease is the expensive pain in the ass – the deadly disease that Eli didn’t ask for, Pam’s kids didn’t ask for, we didn’t ask for.
CF is a lifelong medical condition. It’s here to stay and we need to figure out a way to deal with its cost.
How much does cystic fibrosis actually cost?
According to my clinic coordinator, medications alone in an older person with CF cost at least $10,000 a month.
There are other, life-saving medicines in the pipeline for which we are so very hopeful. It’s a matter of life and death to families like mine.
One version of a life-saving medicine, Kalydeco, is already out, for a different type of the disease than what Eli has.
Oh, but ya wanna know what those meds cost?
According to a recent article in the Milwaukee Journal Sentinel — a mere $841/ day.
That’s $300,000 a year.
Those numbers are before insurance and drug company financial programs, or else all hope would be lost.
Plowing through insurance processes and applying for a host of drug company programs has its own cost: time. And frustration.
Nothing is actually free.
We are facing a financial future that includes a chronic disease, and all the regular other stuff — like retirement, owning a home, two college savings at a time the cost of college is going up far faster than the rate of inflation, etc…
I don’t mean to start off Monday with a case of the doomy-gloomies, but this is the financial hand we are dealt.
And now, we need to play smart.
We have a lot to think about. Thinking of it all at once is a total mistake. Thinking of a piece of it at a time, a Monday morning at a time, is better.
I mention it all at once that so I can frame what I’m trying to do here.
Prepare
A brief history of our wackadoodle lives together
Mark and I want for our family what everyone else in this whole wide world wants: to be happy.
Even as I despise money, find it to be the root of all evil indeed, even as the subject of math and I have never run around in best friend forever necklaces…it’s time to really, truly, take this one on. Money can provide peace and security, and these are a large part of happiness, even as “Money can’t make you happy.” Yeah, OK, true, I guess. It helps, though. *John Stossel mustache Give me a Break*
I’m going to start this new financial journey by forgiving myself for all financial indescretions of the past.
Example: I put $5,000 on a credit card in my early 20s for things like, oh, food and gas money, and the occasional feel-bad-for-myself-because-I’m-broke-but-I’m-still-going-to-look-good-damnit purchase at H&M. Dumb self of the past, I forgive you.
I paid that off, by the way, as soon as I had the cash to throw at it.
The credit card came about after I got my first journalism job in the south suburbs of Chicago. I had made more as a lunch waitress at a German restaurant — the job I had directly before it. The take home pay after taxes and insurance was something like $9/ hour. I never signed up for another piece of plastic. To this day, Mark and I carry no credit card debt.
By the way, I do not regret any of that. I had fun at work. I exposed corrupt officials who were — quite literally — stealing from poor kids. I closed that chapter in my professional life a little confused with what to do with myself next. So I decided to pursue a dream: to live abroad in a foreign land. Mark and I had been dating for four years then, during which time he’d wrapped up a degree in history and teaching.
We moved to China to teach at a college.
Mao money, mao problems
The Chinese bring a whole new meaning to frugal. In ‘merica we think it’s a real hardship to cut down on things like cable.
Paha!
The Chinese people do things differently when it comes to money, I learned.
We were visiting a student in Nanjing, a city in the south. It was freezing outside, which was somewhat rare for the area. The apartment didn’t have a heater. Why? Because heat costs money, and it wasn’t usually super cold. Everyone was walking around inside in coats and mittens and hats, even granny, who shuffled around the apartment, ancient and wrapped in her indoor winter gear.
Living in another country reframed my ideas about frugality, is my point.
While we were away, we got engaged. Then the economy in the US collapsed. The nerve! Mark and I moved back to the states, got married, moved to Chicago and found temp work at a university.
Next, we couldn’t believe our luck — he was offered a cush position – something that actually paid really well, had great benefits, by the university.
I was so proud — and relieved
Then we found out my mom had terminal cancer.
I moved back home — a few weeks pregnant. I got a job at a small news outlet near my mother with a meh pay check. Mark declined the much better offer to support me and my family at this difficult time. We moved to Michigan, where he couldn’t get a full-time job. During an interview with one school he described as a cattle call, the administrator never looked up from his cell phone. He stayed at home with Laila during the day, worked at a deli counter at night. He enrolled in a community college to try to re-train in a health field. There was a two-year waiting list. Great.
That was hard time for us on all accounts.
But we had out Laila, and she brought light into all of our lives when we needed it. Instead of thinking about stupid dumb cancer, my mom got to hang out with a teensy adorable little infant – her grandbaby.
After my mom died it was time to move on again. And our choice was economic.
To Oklahoma, where I got a much better media job, and Mark quickly found a job teaching.
For the first time in four years of marriage, we felt like we could breath.
Eli joined our party — a surprise, but a beautiful surprise.
His cystic fibrosis blindsided us.
We did grieve, because we had to put to rest the idea that life was going to be “normal,” the way we’d pictured it before.
We’ve discovered a new normal. And found out, actually, life is still good, every day.
We love our little boy, our daughter, each other.
Did I just get sentimental?…..ew guh whoops hate it when that happens. I can’t help myself but get gooey when I talk about my buddies.
Now cliche, take a piggyback ride on that piece of sentimentality:
You can’t live on love.
Gotta get that money straight.
So here I am, Monday morning — my day off, btw, I work an odd schedule. I’m wrapping up this post, drinking coffee and crunching numbers.
There is good news: we are already doing a couple of things the right way.
We’re trying out a weekly grocery budget, throwing down 10 percent of our take-home pay into a savings account and gearing up to open our minds to financial education. All of those things are the result of my recent Monday morning sessions, and discussions with Mark about how we can do better with what we’ve got. The missing piece right now is strategy.
We’ve got brains in our heads that we aren’t afraid to use and a willingness to learn.
So here we go.
Monday morning money madness.
And I’ll end it with lyrics from White Stripes Little Acorns…just because.
It’s best to tackle an issue a piece at a time, just like a little squirrel facing a long cold winter.
Be like a squirrel girl, be like a squirrel…
When problems overwhelm, us and sadness smothers us, where do we find the will and the courage to continue? Well, the answer may come in the caring voice of a friend, a chance encounter with a book, or from a personal faith. For Janet help came from her faith, but it also from a squirrel. Shortly after her divorce, Janet lost her father, then she lost her job. She had mounting money problems. But Janet not only survived, she worked her way out of despondency and now she says, life is good again. How could this happen? She told me that late one Autumn day when she was at her lowest she watched a squirrel storing up nuts for the winter, one at a time he would take them to the nest. And she thought, if that squirrel can take care of himself with the harsh winter coming along, then so can I. Once I broke my problems into small pieces I was able to carry them, just like those acorns, one at a time.
Take all your problems And rip ‘em apart,
Carry them off in a shopping cart,
And another thing you should’ve known from the start,
The problems in hand are lighter than at heart,
Be like the squirrel girl, be like the squirrel,
Give it a whirl girl, be like the squirrel….
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