A Mother Stands Up for Her Daughter and Herself in a Fight for Survival

Once upon Our Time

If you told me eight years ago that every story has a very specific point at which it begins, I
would have believed you. There would be no good reason for me not to believe you.
I’ve heard people tell all kinds of stories before. I’ve told stories. When the children were
young, and I read them books, all the stories—especially the fairy tales Madison loved—had
very specific points where they began. They like to start with Once upon a time.
So I’ve spent the last few months going through my life, wondering where our Once upon a
time is. I’ve been trying to pinpoint the one very specific point in time at which this story begins.
But instead of coming up with a place where this story—Madison’s story, our family’s
story—starts, I have ended up in the place I so often find myself these days: full of doubt. I’ve
started to suspect that every story doesn’t have an easy starting place. That not everyone has a
point on the timeline where Once Upon a Time should go.
Doubt.
Full of doubt.
Doubting what so many others around me can easily believe.
If you told me eight years ago that doubt would ever be my go-to reaction, I never would
have believed you. But I forgive that woman for her disbelief—she had no idea what she was
about to live through.
You see, for most of my life, my life motto was, “Life is what you make it.”
I used it as a motto because I believed it was true.

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When I was spending my weekdays hustling around, selling products and meeting with
clients, building the work relationships that mattered so much to me, I’d tell myself that the day
was whatever I wanted it to be.
If I wanted to be successful, I could make that happen.
If I wanted to double my business in a year, it was up to me to deliver.
If I was at home, picking up one of the kids after a hard fall, I would remind them (more
gently) that life is what they wanted to make it.
Would they see the glass as half empty or half full?
Would they be victims who got tested, challenged by a hill they failed to climb on a bike,
or would they be victors who pushed forward and up and got back on the bike even after they
fell?
Even with routine, everyday things, like conversations with Eric about what we were going
to eat for dinner, life was what we made it.
I wanted to make life good, and almost all the time, I was successful. Life was great!
But then I got to the point where I realized that saying, “Life is what you make it,” means
believing that life will never throw you the kind of curveballs that can knock you down for the
count.
I watched as curveball after curveball came at us as if they were hitting each of us smack
on our foreheads. They were all direct hits. We were down for the count.
I still believe life is what you make it. In many cases, I think we can decide immediately to
look on the bright side, passionately pursue success, and become the victor. But it’s not the main
truth—the life motto—I live by anymore.

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Now my life motto is even simpler. And because it’s simpler, it’s easier to follow. Because
it’s easier to follow, it’s more powerful. I think of this life motto every morning, all through
every day, and before I go to bed at night. I can look anyone in the eye—even parents about to
walk through the hell I walked through—and I can tell them this truth with a clean conscience,
one that is not overpromising but is passing on what I live by: Listen to your gut.
Listen.
To.
Your.
Gut.
My gut is what God uses every single day as a rudder to steer my ship. I don’t doubt it. I
don’t ignore it. I learned the hard way that if you don’t let the rudder move as it needs to,
especially when you are in the middle of a storm, you end up in the rocks.
So when people say there’s one specific place to start a story, I know it would be easy to
believe them. The people advising me are experts, and whoa, would I love to believe I can just
hand some things over to experts, trust everything that comes out of their mouths, and call it a
day. Isn’t that the easy life? When you just let experts make all the decisions about what’s good
and right?
But I can’t. My gut says I can’t do this story like other stories. My gut says I can’t let the
experts tell me how to write this story any more than I could let the experts tell me what was best
for Madison when she was sick. (And if I had, we’d probably still be locked in that hospital.)
My gut says I can’t just go through the timeline of life and find one beginning spot for the
story that brought me to the low, low valley of racing along the highway, in such a dark place I
did not care if I lived or died.

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My gut says I can’t find a place that pinpoints the beginning spot for how our family had to
go separate directions for two long years. With Eric and Zac going through the motions at home,
in pain because they couldn’t be in two places at once, while me and Madison fought her cancer
almost to the death in the hospital.
My gut says I can’t locate the very simple beginning for how I decided I wasn’t going to
quietly file in and out of the hospital, follow all the rules, and continue doing what the doctors
told me to do even as I saw it wasn’t healing my daughter.
My gut says I can’t pretend the storm just appeared out of the clear blue sky and, all of a
sudden, began. That one day there was no rain, and the next there was. And let’s be real, if I tried
to tell you that, your gut probably would tell you something was fishy. You know the weather.
You understand that storm clouds brew for a long time. Even on a cloudless day at the beach,
factors are mixing in the atmosphere to create an environment where a storm can occur.
Pretending there’s one point where the story begins is too simple. It’s simpler than our
family deserves. It’s simpler than you deserve. It would be too simple to be the truth.
My gut says you need to know who we were back when we thought life was only what we
made it so that you can truly understand who we are now: fighters with one ear always tuned to
our God-given rudders.
I have one goal for putting our story down into a book. By the end I want you to either
know for the first time, or be reminded and reinspired, that you can live life with your ear to your
God-given rudder as well. Calling it “your gut” is easier. “Instinct” works too.
Our lives changed in an instant when we got the diagnosis, but that wasn’t the one specific
point where the story began.

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We just don’t have that specific point in time. We do, however, have memories of a blow-
up pool with a giraffe head at the front. When the pool got too full, the giraffe would spit extra
water out. The Kids spent hours and hours in that pool, having the time of their lives.
My gut says you need to know about those good times and that pool, what life looked like
right before everything changed. So I’m going to listen to my gut and tell you more.

***

The giraffe pool was in the backyard at the house in Brentwood. That’s how we often
describe things in our family, by what house we were in when the memory happened. Maybe it’s
because we’ve only lived in two houses, so it’s a very defined line in the sand.
There’s the house we live in now. And then the house in Brentwood.
We left the house in Brentwood just a few months before Madison’s diagnosis, so maybe
that’s why the house dividing line works too. The house in Brentwood is before she was sick,
and the house we are in now represents a life that knows more about what can go wrong.
We can get nostalgic for memories in the Brentwood house because they were untainted
and happy. I brought both my babies home to that house. Eric and I learned to be parents there.
For me, the sun was always shining on the house in Brentwood. I know that’s not true, but it
feels that way.
When it comes to the giraffe pool though, I can be literal: The sun really was always
shining on that pool.
The Brentwood house was two stories and built almost to the shape of a townhouse. Not
quite as narrow, and we had a yard on all sides, but compared to the house we are in now, that

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house was a lot closer to our neighbors. It felt tight and cozy, and we had to make every square
foot of our backyard count. Eric and I were always up for a challenge though, and we made sure
that yard was a place the kids loved to play.
They were multiple ages when we lived there, but the years I remember most were when
Madison was around two and Zac was about five. We had a swing set in the backyard, and there
was also a rock-climbing area. It seemed like someone was always discovering a toy from the
toy box that felt brand-new to them. They would get really obsessed and play with it all day
long—the new favorite thing. Whenever the day was hot, the kids would come find Eric or me,
begging to get in the pool, so we would put on our suits and race out to the pool.
In the house we’re in now, we have an in-ground pool, which is big enough for each of us
to be doing our own thing. Swimming or reading or just floating, everyone has lots of space. But
in the giraffe pool, it wasn’t that way! It wasn’t for adults. And when more than a few kids were
in it, they were practically on top of each other. Of course, that was so much of the fun. The kids
would splash around and would try to get more and more water to pour out of the giraffe’s
mouth. It’s funny to think how Eric and I could spend so much time hanging out by that tiny
pool, just watching and laughing with the kids, but we did. And we loved it.
A weekend day would often mean pool time. It would also mean the kids getting on their
bikes—Madison’s was so tiny and had training wheels, and Zac was just mastering his big boy
bike without trainers. Then they would ride up and down the street in front of our house. They
loved those bikes. I have so many pictures of the two of them on those bikes, Madison standing
proudly right next to her big brother. Everything he did, she wanted to do too. She wanted to be
just like him.

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There was a park not far from the Brentwood house, and we would often go there. We were
also lucky to have friends in the neighborhood. It was the kind of place where a lot of young
families ended up. The restaurants and grocery stores were easy to get to, and it was the kind of
place where dusk meant listening to other families grilling in the backyard, or you would see
people out for walks and jogs. And you could get to the greater St. Louis area without too much
hassle.
The day care that Zac and Madison went to was so close to the house in Brentwood, and it
was one of the reasons we felt that house was so right for us. What were the chances that we’d
end up with such a great place for our kids to go to school just up the road?
It was a Catholic school called Carmelite. It was run by nuns who were the sweetest, most
caring women we have ever met. Zac had started out there, and then, as soon as Madison was old
enough and ready, she joined him. One of the best parts of that school was the huge play yard
that spread off the back of the property. Surrounding it were green rolling hills and huge trees,
which made it feel like a magical playground was dropped in the middle of a gigantic park. The
playground had several different playing areas, neatly separated by tables and benches or gardens
or trees. These areas kept the playground interesting, but the kids were free to run from one area
to the next without a problem. Zac would always come home with stories that included the
playground. Once Madison started going there, she loved the playground as much as Zac did.
She also loved getting to see him playing out there.
Because I’m in sales, I sometimes have to travel overnight. During that season in our lives,
it was no different. I didn’t like leaving the kids, but I very much like doing a good job for the
people I work for, so when it was necessary, I’d go. During those times, I’d call home each
night, and it was almost always the same story: Madison, Zac, and Eric dancing around and

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singing songs as loud as they could, and Zac telling me what happened on the playground at
Carmelite that day.
We had everything—absolutely everything—in those days. Like I said, I thought it was
because we were making the best of what we had in life. Now I see it was God’s grace too. A
gift of happiness.
From a giraffe pool to God’s grace, that’s a lot of territory, but it’s what I needed to share,
and I know my gut won’t lead me astray. As for Eric and me, well, that story has a whole lot to
do with God’s grace too.

***

When I met Eric, I had started to think that maybe I wasn’t the best at love. I’d had some
toxic relationships, nothing worth taking our precious time to recount. But all of us have either
been in, or known someone in, a relationship that was going nowhere, so it’s pretty easy to
picture what my dating life had been. There were reasons for why my relationships didn’t work
out: I chose someone who wasn’t right for me, I worked a lot and wasn’t able to invest in a
relationship, I liked to do my own thing without someone getting in the way, and on and on. I’d
been in love, or something I called love, but it was never an enduring love. Nothing that was
going anywhere. Nothing to bet a future on.
The good news was, I had a lot going for me. I was passionate and determined; I had big
goals, and I stuck to them. I was intense in everything I did and had no reason to slow down.
Remember, I was making life what I wanted it to be. I moved. Forward, forward, forward.

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Operating at that speed meant that from the moment I woke up in the morning, I hit the
ground running. One of my friends suggested to me that if I was interested in meeting someone
new to date, maybe I shouldn’t always hit the ground running and run straight to the gym.
She said it gently, but the gist was, “No one wants to flirt at 5 in the morning. You’re going
to have to flip things around and try the gym at 5 p.m.”
I remember thinking that I didn’t want to flirt at the gym ever, at 5 a.m. or 5 p.m. But I
knew I did want to meet someone special, and I was working my job so much, I didn’t know
where else I might meet someone. So in the end, I took her advice. I flipped my schedule around
and tried the gym during the 5 p.m. rush.
It was on one of those first days I went at that time that I noticed Eric. Boom, right away.
He was there lifting weights with one of his friends. Eric looked great, of course, but that was
secondary to why I was originally drawn to him. From that very first time I saw him, it was his
smile. Eric’s smile isn’t just a smile that says he’s a friendly guy. It’s warm and inviting; it draws
you in. It radiates kindness and safety and comfort. I don’t just say that as a woman who has
been married to him for fifteen-plus years; I say that as a woman who was seeing him for the
first time across a gym filled with people. I felt drawn to him, wanting to feel the warmth of that
comfort.
He smiled at me that first day, and I smiled back. Then the day after that. Then every day
for the week after that. Three weeks later, we finally talked to each other. I gave him my number,
and we ended up going for dinner. I won’t say that I knew immediately we were going to get
married and have children and spend our lives together, because my head wasn’t in that space
then. Back then, I thought I didn’t want kids. I’d seen too much heartache up close and knew
intimately how children could rip a parent’s heart out. But I knew the guy sitting across from me

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made me feel safe and secure. That his smile lit up the room. But even more importantly, his
smile lit me up. I loved being with him, so I was with him more and more and more.
There’s a lot more to our story than that, but at the same time, there’s not. I think maybe
that’s how the best love stories are supposed to be. Eric and I have always just loved being
together, just spending time together and hanging out. Once we got married, I thought that was
it—we’d be together all the time for the rest of our lives. It was exactly what I wanted.
I had no idea that down the line we were going to be separated by sickness. When the
officiant said, “in sickness and in health,” I always thought I was pledging my commitment to
him in the worst-case scenario—if he were to get really sick. But we didn’t have kids yet. We
didn’t know there was a scenario worse than the worst-case scenario. One when your child gets
sick.

***

When we were in the Brentwood house, there were signs that something might have been
amiss with Madison. She had been spiking random fevers for months, but the pattern was always
the same. She would have a fever, so I would get concerned and take her to the doctor. Then the
doctor would check her out and say it was nothing, that we should go back home and get back to
making life awesome.
I didn’t have any reason to disbelieve the doctors. Why would I? I’d always been a pretty
healthy person and never had encountered an illness that required me to even get a second
opinion from a doctor. My daughter was having random fevers. The doctor said it was nothing to
be concerned about. I chose to move forward as though that answer was the answer.

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I will tell you, though, I have regrets. Because that whole time, my gut was saying
something different. After the second or third time the doctor told us to go home and everything
was fine, I felt a twinge of a mother’s instinct kicking in.
Something’s not right about that.
It’s not adding up.
But the choice lay between listening to my gut or listening to the doctor. So I listened to the
doctor.
Looking back, though, I’m not sure why I didn’t listen to my gut. Maybe because
sometimes in life, I just hadn’t listened well enough.
Want to hear another time my gut spoke up and I pushed it to the side? When Eric and I
were talking about moving away from Brentwood to the house we are in now, I said, completely
out of the blue, “But what if something happens to the kids? This new house would be so much
farther away from the children’s hospital.”
What? I had no reason to think one of our kids would ever go to the children’s hospital! But
there I was, wondering aloud to Eric about it.
He said to me, “What are you talking about?”
And then I snapped out of it. Because I didn’t “know” what I was talking about. I just had
this gut feeling that something was brewing, and maybe, just maybe, we would need to keep the
hospitals in St. Louis within close reach. So, I shook off the feeling, told Eric I didn’t know what
I was saying, and then we went on with our lives. Again, I wasn’t a fortune teller; I was a mom.
It was easy to talk myself out of why my gut feelings mattered.

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We moved into the new house, unpacked our things, and loved getting to know new
neighbors, new routines, new routes to school. We were going full speed ahead, with Zac and
Madison leading the way.
Then one afternoon I got a phone call from school.
Mrs. Mary was Madison’s teacher—and oh did Madison love Mrs. Mary. But Mary wasn’t
calling with good news. She was calling to tell me that Madison was sitting down on the
playground.
There’s nothing necessarily wrong with sitting on a playground. I’ve sat down on a
playground; maybe you have too. People get tired. They get worn out.
But my gut, which had been whispering at me for months was now yelling: Alert! This isn’t
right! What kid just plops down in the middle of a playground? Not my daughter. She plays with
her friends. She runs around. She jumps. She laughs. Every day!
You better believe I listened. I dropped the work I was in the middle of and went straight
for Madison. The whole time I was thinking, “Why would she sit? Why would she sit?”
My rational, logical side put up a fight, trying to assert it was probably no big deal and
reminding me that the doctor had said everything was fine with Madison. But my gut was having
none of it. Something was wrong.
As soon as I got to Carmelite and saw Madison, I could tell she was just exhausted.
I hugged her, I asked what was wrong, and she said she just felt tired. Very, very tired.
I thought that the best thing I could do was keep her in my sight, so I took her home and
decided just to let her rest. That way, I could observe her and see for myself if anything seemed
to be wrong. Maybe we had been going too hard and pushing her too much. Maybe this was my
gut saying, “Slow down the pace and be with your little girl.”

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So that’s what we did. It was a Thursday when Mrs. Mary called, and I took Madison
home. My plan was to keep her home Friday to let her rest. Monday I was scheduled to fly to
California for a sales meeting, and I remember thinking we would definitely have Madison back
on her feet again by then.
So all day Friday, she and I rested. And we played.
I watched her and tried to figure out if something major was happening or if this was the
case of a little girl who just needed some rest.
I wish I could tell you I knew what my gut was saying that entire Friday, but I don’t. I think
about that day, and all I remember is Madison and me on the floor coloring. Red, orange, yellow,
green, blue crayons. Pictures of houses. Princesses. Anything that came to mind. We colored the
day away.
The resting didn’t help her feel better though, and the next day she was hit with an awful
stomachache and random temperature spikes. Although I didn’t have a fever myself, I did have a
stomachache, so Eric and I wondered if it had been something we ate.
I look back on that as one last gasp of hope. Of putting fingers in your ears and screaming
so you can’t hear what your gut is saying. The random fevers. The loss of energy. Now a non-
stop stomachache—and not a normal, run-of-the-mill stomachache, but a bend-you-in-half pain
that wouldn’t let her out of its grip. This intense stomachache and a fever that shot up to 104, led
Eric to take Madison to the emergency room on Sunday evening.
This is not right! Stomachaches are passing things, right. They’re supposed to get better on
their own.

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At 5 a.m. Monday, the day I was supposed to—and was still planning to—fly to California,
Eric shook me awake. He was not wearing the smile I knew and loved. In fact, it was the
complete opposite—panic and fear stretched across his face.
Someone from the ER had called in the middle of the night regarding the tests they had run
on Madison. Eric had taken the call, but he didn’t want to wake me up then because there was
nothing I could have done.
They told him that we needed to get Madison to Children’s Hospital first thing in the
morning. They wouldn’t say why, just that she needed further tests immediately.
When I strapped Madison in her car seat at Carmelite a few days before, I thought she
would be back at school that Monday, but in actuality, she would never go back to school there. I
was not going to be flying to California. Instead, I walked Zac to the school bus, careful to hide
the panic that was overtaking me, and then drove to Children’s, arriving just ten minutes after
Eric and Madison. We were about to discover that my gut had been correct all along.
Things were not right. My baby girl was sick. Our lives were never going to be the same
again.
Maybe I was wrong, maybe this is where the story should have begun all along.
Once upon a time, a beautiful, brilliant, strong princess named Madison got very, very sick.
The rest of our story will be me telling you how she fought the battle of her life to get well.