A different kind of life

Sunday, June 2, 2013 | Story and photos by Juliana Keeping |

Page 1 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life

The Oklahoman reporter Juliana Keepings son, Eli Ellison born with cystic fibrosis December 5, 2012. Photo provided

A different kind of life

Story and photos by Juliana Keeping

Hes perfect.

I said those words as my doctor handed me my

baby boy, born Dec. 5.
My husband, Mark, and I fell in love with Eli the
second we laid our eyes on him.
We did not know what was coming next.
We did not expect what was coming next.

We had 14 hours of perfection.

Something went wrong.
Elis tummy swelled. He threw up. Again and
again.
No one could tell us why.

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Nurses in jumpsuits whisked him away and put

him on a helicopter. They placed him in a sterile
contraption that looked like a giant, silver Easy
Bake oven.
They handed him a blue fleece blanket the size
of a pack of cards. He flew to another hospital. A
surgeon there told me his condition was serious.
They needed to operate.
Immediately.

I dont understand.
You need to cut him open?

I dont understand. You need to cut him open?

Yes, to operate.
I fell apart.
Ive since put myself back together.

My childs life
Pure and innocent, few things are more perfect
than a sweet newborn baby. Maybe thats why its

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Eli Ellison after surgery.

so terrifying, so heart wrenching, when its discovered something is wrong.

On Dec. 18, my husband and I learned Eli has
cystic fibrosis (CF), a deadly genetic disease that,
over time, steals away a persons lung function.
People with cystic fibrosis have bodies that make
thick, sticky mucus. There is nothing wrong with
CFers brains. Outwardly, theyre just like you or
me. Yet, the disease can impact every organ in the
body. Most commonly, it disrupts lung function
and digestion. Cystic fibrosis is deadly because
over time it robs a person of the ability to breathe.
Eli was born to a family of scrappers. We are going to do everything we can to keep him healthy,
and there are a lot of things you can do. Its not
the disease it once was. People are living into their
60s; the median age of survival is 38. Thats still
much too young.
Still, in medicine, in life, nothing is certain.
Cystic fibrosis is a difficult reality to face.
We faced it 14 hours after he was born. Elis tummy swelled because the meconium an infants
first bowel movement was thick and sticky. The
first poo got stuck, the upper gut puffed up. Its
called meconium ileus and its a condition that can
kill, has killed.
Im a reporter in my professional world. When
an ordeal hits a homicide, a fire, someone elses
tragedy I go there.
In the hospital, I faced an ordeal of my own.

I pretended to be tough. I tried to learn and

understand, but this wasnt a report. This was my
childs life.
I think I even told Elis surgeon, Dr. David Tuggle, something like, Give it to me straight. I can
handle it.
That was a lie. I couldnt.
The words cystic fibrosis, the very thought that
my infant was born with a disease that kills, made
me so lightheaded at first I almost passed out
several times. I could feel the color drain from my
face. The world started to spin. My ears rang. I
needed a chair, some water.
Tuggle saw right through me. He let me know
what I needed to know then, in the moment. No
more, no less.
I was in a fog, exhausted. The days in the neonatal intensive care unit ran together. I couldnt keep
doctors names straight, let alone the information
they kept delivering.
It was hard for me to face the information, yet I
didnt want to forget any of it.
Thats why I started to write. To record. Words,
pictures, video, sound. I havent been able to stop.

Juliana and her son Eli Ellison after surgery.

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Were not alone

My reasons for doing so are evolving. At first, I

just needed the stress relief, and to document, so
I could remember. It next became a great way to
update family members and people who care about
my family on Elis progress. He was in the hospital
more than 30 days and required two major surgeries before he was 3 months old.
Elis first surgery separated his small intestine
from his large intestine. Doctors flushed out his
blocked small intestine. The ends of his little gut
poked out of his tummy. They reminded me of red
lifesavers, the two dots, connected by an incision
scar. He pooed into an ileostomy bag affixed to his
stomach. He wore two of these bags, one for each
little gut end, for two months.
For two months, I wrote a lot about poo bags.
The prayers, the good vibes, were rolling in. The
support gave us a boost at a difficult time.
As I continued to write, I heard from other moms
who have children with cystic fibrosis. Theyd
been through something similar. Or, they were
going through the exact same thing, right then.
These mothers and fathers started following our
story. Moms and dads with children who had other
special needs also have started to tune in.
I figured that, maybe by writing, I could help
more than those in my immediate family.
My family is new to Oklahoma. Like others coming to Oklahoma City, we were drawn by the sturdy
economy, the chance for a better life. We are newcomers to the wind-swept plains.
It can be lonely to be the new kid in town.
Eli has opened up a world to us a world with
lots of interesting and wonderful people whose
lives have been impacted by CF. They are raising
money, pushing for a cure, together. Lives depend
on it. Thats why CFers and those who love them
are so driven. I think thats whats driving me to
share so much, here, now, on these pages and my
own blog. I want to help my son, but I want to help
his community, too.
Its a comfort to know youre not alone when you
face the unexpected. To you, the experience feels

rare, exotic and terrifying. Then you discover a

new world, one populated by others dealing with
the exact same thing.
We form groups like this to find comfort. Circles
of grief for the life we thought wed get, then,
didnt. Our new groups dont have to be dreary.
There is humor there. Happiness. Support. Fellowship. Love. These are the things that make a
harder life, the unexpected life, feel better than
tolerable. Life can feel normal again. Life can feel
good. Especially when youre not alone.
Eli is just a little man, but hes taught me a lot
about life in his first five months here on earth.
Im learning more about my sons disease as he
grows.
The most important thing Ive learned is this:
He is not his disease. Let me make that clear. He
is a baby just like any other baby. He is a happy
little man who likes being held, laughing, his sister
Laila, his daddy and trying to scoot, these days. He
loves his mama. Me.

I love Eli. He is perfect.

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Dec. 10 - This is Eli

Dec. 11 - Clothes
Poor baby finally got to put on some clothes after
bearing a lot of indignity with people messing with
his bum and guts for days on end. Hes not so sure
about clothes.

Dec. 19 - Diagnosis
Eli has cystic fibrosis. I dont care. I love him. He
is perfect.

Dec. 23 - A different kind of life

The nurse was talking fast. She wasnt panicked.

She wasnt calm.
***
Chopper nurses in black jump suits appeared.
They gave him a teeny blankie for the ride over.
I dont really remember what I said or did at this
point, except experiencing every symptom of a
sloppy freak out. Childrens Hospital at OU Medical Center surgeon Dr. David Tuggle told me they
needed to operate. It really didnt matter what he
said, because all I heard was cut my baby open
and I fell apart. Mark had left minutes ago to take
Laila to the park. A nurse told me to call him to
come back, so I did. I spent the next few hours
roaming around the hospital, a postpartum mess,
still stuck with IV tape, Percocet coursing through
my veins, flinging snot and tears every which way.
I was orbiting a disaster moon unaware of the
rest of the solar system. Along those lines, I dont
remember what Mark was doing other than being supportive and freaking out outwardly much
less than me. I felt like Id been beaten with a bag
of rocks and glass. I looked like it, too. So much for
the baby-mommy glamour shots to go along with
my perfect pregnancy and labor.
During Elis surgery, a nurse put us in a private
waiting room. I took this as a disastrous sign that
we would need somewhere private to hear the
horrible news. During his surgery, we both stared
at the wall and expected the absolute worst. My
innards were a big ball of doom.
We did not get horrible news. He handled the
surgery quite well.

I spoke to a woman named Pam Denham who

has two sons with cystic fibrosis.
There are more than 1,000 mutations of the
cystic fibrosis gene that cause the disease. Eli and
Pams two sons have the most common type. Mark
and I unknowingly each passed a copy of the Delta
F508 mutation to our son. Pam noted that even as
her sons have the same type of the disease, their
illnesses are very different. Pams sons are 16 and
19. Her 16-year-old, Preston, just got his license.
Stephen, her older son, is in college. Her younger
son, like Eli, was born with a bowel obstruction. Its
proper name is meconium ileus. Its not an indication of how severe his illness will be.
Youre going to have a different kind of life, she
said.
We would be OK, she assured me. She also
warned:
And youre going to learn real fast how to be a
bitch.
I quickly figured out what she meant--being a
good advocate for your child. Like when I argued
with a few different nurses about the way my sons
poo bag was attached to his skin. It was leaking
onto his as-yet-unhealed umbilical cord. Some
nurses did it right; others rushed it and the bag
would leak. I finally figured out I should stop complaining to the nurse if I felt her work sucked and
go straight to the boss, the charge nurse. Suddenly,
everyone was very concerned about my concern
of the leaking poo bag. There was a special order
for a wound care expert. Certain nurses are better
at working the bags, and they would be the ones to
deal with Elis problem. My constant presence at
the hospital didnt hurt. I still think Im too apologetic about my concerns. Working on getting the
Im sorrys out of my vocabulary. Because actually, Im not, so theres no use being a phony and
pretending I have any sense of remorse for hounding people about the finer details of my kids care.

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Dec. 24 - Applesauce and enzymes

heart. It is capped outside of his body and it is

extremely important we keep the cap and the
surrounding area clean. We have to flush a few
milileters of saline into his central line every day,
which makes me incredibly nervous and Mark so
nervous that he is leaving this part of the care to
me. There is a chance a blood clot could form and
that we could push the clot into his body, killing
him. This is why its important we are both conscientious and careful as we learn about and meet
Elis medical needs until his next surgery. A lot is at
stake. He also needs enzymes in applesauce before
every meal, a special vitamin goo and liquid iron.
Plus all the regular stuff babies like being held,
being cozy and eating a lot.

Eli gets enzymes in applesauce before every meal

to help him absorb food. Without the enzymes, he
would starve. You wouldnt think you can give a
new baby applesauce, but apparently you can. He
puckers a little bit but really seems to like it. Heres
Eli getting his enzymes in applesauce and making
applesauce faces.

Dec. 30 - Coming home

Jan. 1 - Home. Sweet, chaotic,

home

The most intimidating part of his care involves

his central line. This is a catheter that runs from
his clavicle to about a centimeter away from his

For the first time since Eli was born, I woke up

with baby boy in his own bed. Or I would have,
had I ever really slept.
I didnt have to call the NICU and ask how he
did overnight, since we already knew.
He did well!
We brought Eli home from the hospital with
bags and bags of medical supplies. His poo pumper, ileostomy bags, lots of different sterile wipes of
different varieties, etc. etc
One of Elis tummy bags started to leak, so Mark

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and I teamed up to fix it. We spread towels out on

the kitchen table, laid out all of his supplies, and
accomplished the switch-out of the bag. We were
a machine of efficiency.

Jan. 5 - Eli is 1 month old

Happy 1 month, little guy.

Jan. 17 - Welcome to the clinic

I took Eli (and Laila) to Childrens yesterday to
meet with pediatric surgery and for our first appointment at the cystic fibrosis clinic. Elis second
surgery is scheduled for Jan. 30.
Dr. Tuggle briefed me on Elis next procedure.
Then we went to the cystic fibrosis clinic.
They do things a little differently for CF patients.
The first thing I noticed is that the receptionist gave me a pen and told me to hang onto it to
prevent the transfer of germs. CF patients dont
wait in the waiting room, they go right back. The
clinic encourages parents to bring toys from home.
The people who come into Elis clinic room wear
a protective barrier over their clothes and rubber gloves. I know this is all done to prevent the
transmission of germs CF patients need to avoid
other CF patients so they dont catch certain lung
infections, for example. Still, that was all new. It
brought the fact he really has this disease home,
and of course, made me sad.
I heard a few of the children coughing. Their
hollow, rattling little-kid coughs got me down.
It upsets me that he has to deal with any of this.
At least now I can just get sad without crying,
wanting to puke or starting to pass out. An improvement.
Im reminded when confronted with new CF
things something as innocuous as a germ-free
ink pen that Im still coming to grips emotionally with the fact my child has this disease. Im a
carrier; Mark is a carrier; we unknowingly combined our recessive traits and against the odds,
passed cystic fibrosis along to our son. I shouldnt
feel guilty. I do anyway, mostly when Im dragging
him to and fro to the hospital or messing with his
tummy bags, which makes him upset.

Jan. 25 - Against the wind

Twice today, I looked down and realized I was

wearing a shirt with a big poo blotch on it. Thats

due to buddys poo bag, which tends to leak as
I hold and/or feed him. Or, for no reason, it just
leaks. I will not miss the poo bag. None of us will
miss the poo bag.
Mark and Laila modeled the strange infant poo
bag marketing materials last night. We are all perfectly sane. Nothing to see here.

Jan. 31 - Round 2
Eli had a second surgery Jan. 30 to put his gut
ends back together inside his body.
When they wheeled Eli back into recovery the
first thing I noticed was the pallor of poor buddys
complexion as he lay in his new stainless steel crib.
He looks gray.
He tried to cry out but his voice was weak, raspy.
The breathing tube hed had in for his surgery
irritated his throat.
Ugh. My baby was in pain.
He would need two blood transfusions and
then platelets to help with clotting. I think he lost
something like 10 percent of his blood volume.
I took a look at his tummy. Id gotten so used
to the red ends of his intestines poking out it was
strange to see his belly was smooth again under its
dressing.
Poor little guy.
Mommys here, buddy. Good job today. I love
you, buddy.
The color today has returned to Elis face. Im
relieved. His heart rate spikes when he whimpers in
pain. I just had the nurse give him a morphine boost.
I hope he heals fast and can be with us at home
again soon.

Feb. 5 - 2 months
Eli is 2 months old.

Feb. 8 - Progression
Being at home is nice. And busy. I thought Id
show Elis latest childrens visit in pictures. We
were there for six days instead of 26.

Feb. 11 - Never more devoted

We arrive in my neighborhood.
Why did I just see a semi parked on the street
and a feral cat?
I pull into my driveway after picking up my sister, Laura, from the airport.
Get over it. Urban area. Dont worry. The pros-

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time, other than to note the difference a month

had made in my reaction to little things like this.
Ah, progress.
***
I signed lil buddy up for a study and to be on
a national registry of CF patients. The study is
observational, meaning the research group will be
monitoring about 200 CF babies nutrition and
growth over a yearlong period. Eli gave the researchers his DNA via a cheek swab.
The woman working the study sign-up is Deanna. She is kind and smiles a lot at buddy and fusses
over him. Thats how she convinced me to give up
my DNA for the study, too, even though scientists
arent yet sure how the parents DNA will be used.
You want my genetic code? Yeah no problem. Now
Juliana Keepings sister Laura Wetzel with Julianas son Eli Ellison.
tell me more about how adorable my child is. Anything else? My soul? That shouldnt be a problem
now, what were you saying about his beautiful
titutes stay down the way. And that murder down
the street? Drug-related. Killer knew victim. Vic- eyes
The other thing about the study Eli will be
tim shot through peep hole. Totally safe here. That
put in this sci-fi pod that measures his body fat
was at least a half mile away.
composition. Deanna says this is really cute and I
Ha!
should definitely plan to take pictures and record.
Oh you think Im kidding. Good.
After I told Laura, my older sister, Id gotten a job She speaks my language. I told her Im all for that
as long as she doesnt force me into the pod.
on the plains, she said shed never come here.
Something like:
Feb. 17 - Buddy smiles
Oklahoma? FYI Ill never visit.
Big boy comin atcha with his grill.
Wow. Thanks.
For Christmas, days before I left Michigan, she
got me a deluxe weather radio.
Laura has a fear of flying and a worse one of storms.
My sister avoids planes, but the moment we
realized something was wrong after I had Eli, she
made plans to visit us here in OKC.
Our early decisions about Elis care were guided
directed, really by her knowledge of medicine
and hospitals. She tells me what to do. What questions to ask.
We are different people. I love my sister. She
loves me. Weve still clashed over the years.
Our differences dont matter so much any more.
We both love my son. Eli is a gravitational force, a
new moon for us to orbit around.

Feb. 14 - Xos
We had our second visit to the CF clinic yesterday.
They gave me my own pen to take around
something CF clinics do to avoid the spread of
germs. Last time I got all freaked out and sad that
I needed my own pen. I thought nothing of it this

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Laila and her brother Eli Ellison.

Feb. 23 - Coughing in the craft

aisle
I cringe as a woman hacks all over the scrapbook
paper. She does not cover her mouth.
Im shocked full-grown humans are so dumb and
inconsiderate when it comes to hacking in public.

Cough into the crook of your arm. And please, wash

your hands. I want to shout it from the roof tops.
I was in Michaels with Laila and Eli when I
witnessed the woman spread germs so carelessly,
without a second thought. Those germs could hurt
my chronically ill newborn who Id taken out on an
errand for the first time. This made me nervous.
He was covered in his carrier. Still.

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Should I have stayed home?

How can we stay home? We will go mad.
Germs are everywhere. So are stupid people.
Pam warned me about this.
People are stupid.
She didnt say that. She said something along

Dr. David Tuggle and Eli Ellison.

the lines of, You are going to fight with stupid

people.
Pam reminds me of the Sandra Bullock character
from The Blind Side, minus Michael Oher and
plus two CF teens, Stephen and Preston.
Their mother is dedicated. She pounded on her
babies lungs for five years. Five. Years. Up to two
hours a night.
Day after day, night after night, Pam tapped on
her buddies chests to help loosen up the thick,
sticky mucus that gathers in CFers lungs, encouraging bacteria to thrive. Her husband is a pilot
and is away a lot. That means their care has been
mostly up to her.
When her oldest turned 5 they came out with the
vest to help do the work of tapping for her.
Ive only had to wait two months.
Our vest should be on the way this weekend.
A high school biology teacher told Stephens
best friends science class that they would never
know a person with CF, since those kids are dead

by high school.
The friend raised his hand and informed her that
Stephen, a person with CF, was two doors down.
The teacher did not believe him.
The friend got Stephen. Stephen walked up to
that teacher and pointed out that, while he did
have a feeding tube, and while he did have to take
insulin for diabetes that people with CF tend to
develop, he was very much alive. He played baseball. He rode motorcycles.
Unfortunately, Stephen faced a similar situation
in college in Arkansas recently.
He wants to be a doctor. His biology professor told
his class people with CF drown in their own mucus.
Stephen was so pissed off he stormed out of the
class. He later confronted the professor.
Lung infections do create scar tissue and reduce
lung function. People with CF do not drown in mucus.
People are stupid. Teachers of the world, update your curriculums. Know your subjects. Stop
spreading ignorance.
Stephen has had to fight with stupid people.
You are going to fight with stupid people, Pam
told me.
Id been warned.
But I wasnt prepared.
Back to Michaels.
I didnt know what to do when the hacking
woman showed up, poking her head around Elis
carrier. She wanted to take a look at him.
I almost fell over. I didnt know what to say. I
wasnt prepared for this kind of stupidity!
I muttered some nonsense, put my body in between the woman and Eli and bee-lined it out of
there.
I later asked Pam how I should have handled it.
She suggested I say something like, I dont
mean to sound rude, but can you stay back? My
son has a chronic lung disease.

Feb. 26 - Tuggle time

Dr. David Tuggle saved my sons life. Tuggle
signs his emails Tug. He is a pediatric surgeon
and the chief of pediatric surgery at Childrens. I
met him this morning for Elis follow-up appointment.
Thank you for saving his life, I said. Ive probably thanked him about 20 times.
It was all in a days work for Tuggle.
Tuggle took a look at Elis scar, which has healed
nicely, and said I can yank out the stitches if I

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Luckily, the test she took today showed a low

level of salt in her sweat.
Every child Mark and I have has a 1 in 4 chance of
having cystic fibrosis.
Its a game of genetic roulette.
Laila does not carry the disease, but like millions, she may be a symptomless carrier of the
defective CF gene.

March 1 - Airway clearance

want. We can finally stick buddy in the tub, too.

The visit lasted only a few minutes Tuggle is a
busy man.
However, I made sure to get a picture of little
man together with his intestinal mechanic.
I later looked Tuggle up online to make sure I got
his name and title right.
Thats when I learned Tuggle performed an onsite amputation to free a victim from the debris of
the 1995 Oklahoma City bombing.
My childs surgeon is so more than just my familys hero hes a bad ass.
***
Now, were going to turn our attention toward
our wee lady, Laila.
She is getting tested tomorrow to rule out cystic
fibrosis.
Eli tested positive for cystic fibrosis in a newborn
screen and a sweat test.
Tomorrow, Laila will get a test to measure how
much salt is in her sweat. People with CF have a
higher level of salt in their sweat than someone
who does not have CF.
Laila doesnt cough. Her illnesses dont linger.
CF is unlikely. But, shes small. Shes always been
small. Being teeny can be related to CF, since the
body doesnt absorb nutrition right. Or she could
just be little.
We are terrified.

Feb. 28 - Dodging bullets

Laila dodged a bullet; she does not have cystic
fibrosis.
We are so relieved.

Every day we take an hour to do chest physical

therapy to clear little mans airways. As medicine
stands now, Eli will need to do this every day for
the rest of his life. Little CF buddies chests can
be tapped manually with a squishy cup device
that fits in the palm or the cupped hand or via an
(amazing, convenient) system called The Vest. We
just got ours. Its a lot easier than the manual tapping and Eli likes it more.
The therapy is done to rattle thick, sticky mucus
characteristic of cystic fibrosis. That way the mucus is coughed up. Otherwise it would pool in the
lungs and encourage infection. Eli doesnt sound
mucus-y but since we started him on the vest
he has begun to cough wee man coughs now and
again. The process of airway clearance is better
shown than told so I made a video.

March 5 - 3 months
Happy 3-month birthday to Eli.

March 7 - The nanny

How does one find a reliable baby sitter?
Well, I dont know. But Im learning.
Im looking for a baby sitter because I cant put
Eli in day care.
Well, I could, but he would get sick, and I would
lose my mind, because we need to keep buddy
healthy on account of his chronic illness, cystic
fibrosis.
All I want is a modern-day Mary Poppins.
Someone who is warm but stern and capable.
Someone who loves children. Plus a, flu shot, infant CPR certification and a car. Its not too much
to ask. Really, its not.
Back to my search.

March 16 - Coffee and a lovely

person
I met Alyssa Siler because we each have a child
living with a chronic, deadly disease.

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Laila Ellison and her brother Eli.

Living with a chronic, deadly disease.

Alyssa and her family made a choice to let living outweigh the chronic, deadly disease part of
that phrase.
We met at Starbucks in a busy strip mall off a
main thoroughfare in northwest Oklahoma City.
We met there because I had Eli and made this
impulsive decision one day to write about it. I was
upset really upset because something was

wrong with my newborn son and I didnt know

what else to do. Then people shared my words and
this person knew that person who knew Alyssa. I
got a Facebook message with her phone number.
I called. Through the powers of social media and
the universe, we converged at a Starbucks. We
swapped stories.
Like Eli, her daughter was born with a blocked
bowel, a condition called meconium ileus. This

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was not detected before her daughter, Hayden, was

born six years ago.
Alyssa had her baby and what happened next was
not supposed to happen. Her baby did not cry. She
only grunted, and her tummy was bloated. Hospital
staff whisked Hayden away at a hospital that did not
have a neonatal intensive care unit.
Whats happened since Hayden was born and since
the surgery is that she has become an artist, and athlete, a kindergarten student, a happy little girl. She
is a lot of things. She is not a disease, a diagnosis, a
set of lungs to be fretted over. Yes, she has had infections and takes breathing treatments via inhalers.
She wears a vest every day to shake up her lungs. Her
treatments have to start every night at 6:30 p.m. to
make her bedtime.
The downside is that Hayden has little-to-no
unscheduled Hayden time, and she is old enough
where that really bothers her. Alyssa feels bad about
that. Parents have to be strict with treatments,
because those treatments keep children with cystic
fibrosis as healthy as possible. Hayden gets to skip
them on Christmas and her birthday.
Hayden had emergency surgery on her gut at Integris Baptist Medical Center in Oklahoma City shortly
after she was born.
Alyssas reaction to her daughters diagnosis was
different from mine to my sons in one big way. Immediately, she wanted to research, to know more, to
know everything, about the disease. Right away, she
geared up for a fight. She called up the local chapter
of the Cystic Fibrosis Foundation when Hayden was
2 weeks old and asked, What can I do?
Ive only just begun to understand CF, because only
recently have I been able to emotionally handle the
research. Im getting there, however slowly, and Im
not trying to rush.
But despite our different paces on the path to understanding, Alyssa and I agree in a big way on this
point: Knowledge is power.
Alyssa is one of those lovely people that makes you
feel a little high on life. Also, I have to mention, she
happens to be a beauty queen. She entered the Mrs.
Oklahoma pageant a few years back because she saw
it as a platform to spread awareness about cystic
fibrosis. Her father died four days before the contest. She pushed forward, won, and thats what shes
done.
Due to her familys involvement in the Sooner

Branch of the Cystic Fibrosis Foundation, $750,000

has been raised in the fight against cystic fibrosis. In
the last few years, scientists have made major breakthroughs in the treatment of the disease, and more
are on the horizon. Private funding is key because its
a relatively rare disease that impacts 30,000 people
in the U.S. drug companies arent willing to risk millions looking for a cure. Thats where the nonprofit
comes in.

April 5 - Baby dreams

Eli is 4 months old today.
Happy birthday, buddy!
I returned to work this week.

April 13 - Of lice and nanny

Im rolling with the punches this week.

And Eli has learned to roll.
I found a nanny by placing an online ad. This
nanny quit after her first day of work.
Before she quit she told me my daughter had lice.
It was Lailas birthday.
Nanny X, as I will call her, called me at work. I arrived home in a panic armed with lice-fighting supplies. I sent Nanny X home.
I found no lice what was she talking about? I
asked her this on the phone. Could she be
more specific?
Her lice story just kind of disintegrated.
She then quit.
It occurred to me that new nanny had faked a lice
scare on my daughters birthday so she could get out
of work early.
Im relieved. Clearly, something wasnt right there.
But I had to think: Are we really that bad?
Eli has a lot of special needs. Laila is my darling
girl, but theres no denying she is 3. Three is the
new 2. I get it. Were not everyones cup of tea.
Luckily, a new nanny appeared. One who could
handle us.
The universe had to move Nanny X aside so we
could find her.
Shes our real modern-day Mary Poppins.
Her name is Lorena, and Marks co-worker sent
her our way.
Shes got a heart for my kids.
She potty trained three of her own siblings.
This was meant to be.

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April 14 - At the clinic (http://hithisiseli.

com/2013/04/14/what-cystic-fibrosis-does-tothe-lungs)
I met Celia Palmer, the executive director of the
Sooner Chapter of the Cystic Fibrosis Foundation
branch, for lunch.
It was great to meet her, because shes lovely.
The most exciting part of our meeting: there are
advancements in medicine now that could save
Elis life. I took her audio and made a little video.
A drug called Kalydeco was approved for another
type of CF in January. It addresses the disease at
the cellular level; patients on the drug are gaining
weight and their lung function has improved. A
drug combination that includes Kalydeco is being studied currently for Elis mutation, the Delta
F508.
In other news, I raced from work yesterday to
take Eli to his monthly cystic fibrosis clinic visit.
Since the lungs tend to do well during a babys first
year of life, most of the focus is put on nutrition
and weight gain. Hes doing great! Eli is just shy of
14 pounds. Hes in the 10th percentile for weight.
Thats small, yes, but he is tall. Something like the
87th percentile for height. Tall and skinny. Sounds
like someone I know, i.e., Elis baby daddy. And by
that, I mean my husband, Mark.
The staff took his measurements and did a throat
swab to check for bacteria that could harm the
lungs.

May 2 - The Principals office

(http://hithisiseli.com/2013/05/02/the-principalsoffice)
My editor asked me to step with her into the news
directors office.
What have I done now ...?
It was the first thought that crossed my mind.
My editors boss, the news director, is named Robby.
I followed my editor into his office. We sat down.
I found out Robby subscribes to This is Eli.
I find it very compelling, he said. Youll sleep
when youre dead. Ha-ha I liked that.
Oh, wow, I said. My bosss boss was quoting the
post I wrote the night before. Well, early in the morning, anyway. I finished around 1 a.m.
Thanks! You subscribe?
Ive read it since the beginning.

Now, he wanted to see if Id like to write a first-person account of my experience with Eli for the paper.
Like a column, but with more space. I could write it
however I want.
Maybe vignettes my editor, Kathryn, said like a
timeline. I could use the pictures Ive been taking.
I liked those ideas.
I told them I would have to think about it, even
though I knew as soon as he suggested it my answer
was Yes. And now its time to panic.
Ive got a deadline.

May 3 - Mean streets

I was a strange creature, a weird amalgamation of

life and death, growing a baby, chugging out copy on
violence. Eli went with me in utero to around a dozen
homicide scenes.
I often encountered pregnant women in the neighborhoods where the violence took place. Mothers.
Children. I leave each neighborhood when my reporting is through. They stay.
My pregnancy bonded me to my interview subjects
at times.
The mother of a man who died days after police officers cracked his rib as they arrested him was tickled
she guessed correctly I was going to have a boy. Her
son died alone in the hospital alone, of pneumonia.
He had a criminal record. He was her baby.
Hes sitting real low, mm hmm, she said, smiling.
Boy, she guessed, correctly.
The mans mother stood outside of the police station
to protest the handling of the investigation, along with
other family members, friends and an attorney. Some
of them wore T-shirts with the mans picture and the
words Cover up.
Eli is a tough little fella.

May 4 - Writing it all down

Ive gotten to know other moms who have children

with cystic fibrosis, but I met my first adult with the
same disease as my son today. Her name is Andrea
Cochran. Shes 27 years old.
I met Andrea because my family attended our first
CF fundraising event today. Its called Great Strides, or-

Page 15 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life

ganized by the CF Foundation. Andreas group caught

my eye because of the number of people wearing black
shirts at Lake Overholser in Oklahoma City. The front
of the shirt depicted an angel; the back said, Team
Cochran. The shirt listed a number of sponsors. There
were around 90 walkers. Andrea raised $3,000 last
year. The donations were still rolling in the day of the
walk this year.
I wondered about her adult life with CF. Using the
upcoming piece in The Oklahoman as an excuse, I
asked a personal question of her friends. Probably too
personal. Probably a little rude.
Is she able to work?
Her friends shook their heads no.
No, shes too sick.
It wasnt the answer I had wanted. It upset me to hear
that.
She had worked full time, then part time, but she
kept getting sick. She had open heart surgery last year
to remove a blood clot that formed around a catheter that had been placed too near her heart. She had
been receiving medicine through a port that sounded
similar to the port they had given Eli, his central line.
Something went wrong with Andreas port.
I dont know why I first asked about work, since the
ability, or even the choice, to work is not an accurate
measure of a persons usefulness, even if society thinks
it should be. Its not. Look at Andrea, raising thousands
of dollars, giving all these people a cause, a person to
root for.
I know that adults with CF do attend college. Pams
son Stephen is there now and wants to be a doctor.
CFers today hold jobs. Others get sick. Forty five percent of people will live past 18.
Thats not good enough for me.
The question about Andreas work was, for whatever
reason, the first thing that popped into my mind as I
asked her friends about her. Shes a fighter, her friend
added. Shes the strongest person I know.
The friends pointed out Andrea. She had such a
glow, an energy about her, as she buzzed around, the
center of this team. I asked her if she would talk a
little bit, and then maybe, give me her cell, and talk
more later. I was writing a piece for The Oklahoman,
but really, I would just like to chat with someone who
has grown up with CF, I said. I got her number. Said
Id call. Shes married. Her husband is John. She has a

Boston terrier named June Bug.

It might take me a while to make the call. Im taking it all in slowly. At the same time I feel compelled to
help fundraise and raise awareness about CF. It doesnt
feel like an option because it is actually a matter of life
and death for my son. Im a writer. I can write.
Thats why I agreed to write a piece for The Oklahoman, even as I knew it would be hard for me personally to share so much, to think or even wonder about
his future.
Hes like a character from my familys book, our hero,
but we dont know what will happen to him in the end.
We cant look ahead.
You know, thats OK. Everybody is born. Everybody
dies. I was born and I became a writer and Im on a
deadline to finish this piece. Were all on a deadline in
life. Death is a certainty for everybody, not just my son.
You. Me. The thing of it is, none of us know what that
deadline is. My family had Eli and we made a decision
together. We decided to enjoy the story as it is written
and try hard not to try and guess the end. That would
ruin the story.
I liked what I saw at the walk. All those people with
Andrea. Andrea was a moon for her friends and family
to orbit around, rally around, love, like my son is for
us.

May 5 - 5 months
Eli is 5 months old today.

Page 16 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life

Feedback & Testimonials

For A different kind of life by Juliana Keeping |
From: Lisa [mailto:lasankey@aol.com]
Sent: Wednesday, June 05, 2013 2:25 PM
To: Juliana Keeping
Subject: Elis Story
Friend of mine -- another CF mama, posted your article about Eli on Facebook. Ten years ago, my husband
and I had a similar experience. Our son Max was born after a normal pregnancy and took his first airplane ride
to Childrens Hospital in Minneapolis. While Max was recovering from his surgery, my husband and I learned
everything there was about enzymes, cpt... Today hes a busy 10 year old. Just finished 3rd grade. Is very active.
A normal little boy who just needs a few extra things to keep him happy and healthy. :) He too is homozygous
delta f508.
Im on Facebook -- Lisa Sankey
lisa.sankey.90@facebook.com
____________________________________________
From: Amanda [mailto: Amanda.Blanchard@dvn.com]
Sent: Monday, June 03, 2013 2:06 PM
To: Juliana Keeping
Subject: CF article
I had a science teacher in high school, Mr. Scott Overacre who had CF. He was 46 years old.
After I graduated Little Axe High School in 1995, he passed away in February of 1996 but we all knew he
lived longer than he was ever expected to.
I remember he used to credit his wife for beating on him to get all of the junk out of his lungs every
night.
Best wishes to you and Eli. What a cute little boy.
Thanks,
Amanda Blanchard
____________________________________________
From: Mari Gmail [mailto:mari.farthing@gmail.com]
Sent: Sunday, June 02, 2013 8:56 AM
To: Juliana Keeping
Subject: thank you
Juliana,
I just finished reading your incredible story in todays Oklahoman. Thank you so much for sharing your
baby boy with us. What a powerful narrative of mother love, family resilience. There is such power and
Page 17 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life

connection in honest sharing and interaction, and I understand how intimidating it can be to share that
part of yourself, but what a beautiful thing youve done.
All the best,
Mari
Mari M. Farthing
Writer, Editor, Doer of things.
www.marifarthing.com
____________________________________________
From: Ken Lay [mailto:klay3@cox.net]
Sent: Monday, June 03, 2013 9:15 AM
To: Juliana Keeping
Subject: CF Story
Dear Juliana,
Your beautifully told story in the Sunday OKLAHOMAN ministered to us as Im sure it did to many
others. It brought back many memories of our granddaughter, Abby, who died with CF at the age of
thirteen. She was a source of wonderful joy as well as deep sorrow. Her death was the culmination of
several sparrows that fell in our lives which prompted me to write the book When Sparrows Fall,
for sparrows do fall. If I may, I would like to mail you a copy without charge. If you would grant us that
privilege please send me your mailing address.
Thank you.
Ken Lay
Klay3@cox.net
341-5428
Edmond, OK
____________________________________________
From: Lynn [mailto:lynnprn54@aol.com]
Sent: Monday, June 03, 2013 7:44 PM
To: Juliana Keeping
Subject: Eli
Dear Juliana,
I was moved to tears by your powerful article about precious little Eli. It must have been extremely difficult for you to write about your experiences with your own son, and you did a masterful job. Your love
for him obviously has no bounds! I, too, have a son and a daughter (now grown) who have both faced
serious health issues. But it is truly hard to imagine being told that your newborn baby needs lifesaving
surgery, and then learn 13 days later that he has CF. I am an RN who specialized in pediatrics for over
20 years, so I know the challenges that Eli and your entire family will face. New treatments are being
developed all the time, and hopefully one of those will be the breakthrough that will cure this horrible
disease.
In the meantime, I know that Eli will thrive under the care of Dr. Tuggle, his nanny, a beautiful big sister, and two fabulous parents. Dont forget to take care of yourself and ask for help when you need it. I

Page 18 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life

would love to see follow-up articles in the paper about Elis progress. Thank you for sharing your story.
Sincerely,
Lynn Yadon
____________________________________________
From: Bill Parker [mailto:bparker175@cox.net]
Sent: Sunday, June 02, 2013 12:30 PM
To: Juliana Keeping
Subject: Sundays Article about CF
Juliana,
I so appreciated your article about your families life with Eli. I am certain you will be getting so much
response to your article about Eli, but I simply could not not respond to you for several reasons: 1) I have
CF with one Delta F508 mutation; 2) I am 70 years old!!!; 3) I live in OKC; 4) I have worked my whole
life; 5) all of the practices one does in the mornings and evenings for treatment and air passage clearence
have given me the appearence and the fact of a normal life in between.
Your interior reflections on life as Elis Mother brought me to tears as it reminded me of what my Mother
must have gone through with her child 70 years ago, not knowing what was wrong, or why, or what to
do. At one point, when I was 31/2 the doctors had declared me dead and was in the process of telling her
and my Father that it was over, when the monitoring equipment at that time started to indicate a return
of life. Fortunately, penicillin helped me live for a long time, then other antibiotics until the mycobacteria complexes hit and new strategies were required.
But the point, I am thankful for you and your family because it caused you to write this piece. Stay
strong, before long they will harness the Delta F508 and Eli will live longer than the rest of us.
Bill Parker

Mark, Juliana and their son Eli Ellison. Photo provided

Page 19 | Pulitzer Prize Entry: Feature Writing Category | A different kind of life