We
were scrambling last minute for a patient.
Project Armchair had been approached by KFYR news out of Bismarck to do
a feature story on our volunteer services at Sanford hospital. The interviews were finished and now the
reporter, Max Grossfeld, wanted video of me reading to a patient and hoped to
interview the young patient as well.
How
could it be there were no patients available? I had been on the pediatric floor
in my role as reading volunteer numerous times and (unfortunately), patients
were usually in abundant supply. Why
today, of all days? There was nothing to
do but end the interview, pack up, and come back another day.
The
following week I arrived on the sixth floor to read, as I had done every Monday
during my summer break as a public school reading interventionist. I walked
into a hospital room and recognized the name on the door. Desirea Shelton was back in the hospital, and
one of my favorite patients. Her smile lit up even the gloomiest hospital room
and her laugh was infectious (pardon the hospital humor). Best of all… BEST OF
ALL, Desi loves books as much as I do.
She wants to talk about them, read along with me, and predict what will
happen on the next page. She is a teacher’s (and reading volunteer’s) dream.
I
sighed as I pushed open the door, because seeing my favorite patient meant that
she was in the hospital AGAIN. Poor lamb. Her wide grin chased away all
despondent thoughts and pretty soon we were reading and discussing and
predicting, just like always. When I was done with all patients that day, I
contacted the appropriate parties and said, “If you can get here tomorrow, I’ve
got the perfect patient.” And just
like that, Desirea became a TV star.
Well, to those of us that adore her, anyway.
After
the interview, I stood and chatted with her mother for awhile, which is rare
for me while I am in my role as volunteer.
I make a point of NOT asking personal questions or being inordinately
interested in their personal lives. I
don’t ask about diagnosis, prognosis, or treatments. There are privacy
directives and laws, but beyond that, I have found that parents and patients
alike are weary with discussing the illness. There are tired of thinking about.
Tired of living it. Tired of being consumed with it. It’s a break from all of
that that I hope to provide, for the brief moment I intersect in their lives. I
am there to read and to brighten a day.
That is all.
For
reasons I cannot explain, God has granted me the ability to walk into the rooms
of gravely ill children – children with tubes and drainages and chemo drips –
things that should break my mother’s heart – and yet these realities do not
prevent me from coming back. They
should. It is awful and utterly heart
rending. And yet, I keep coming
back. I cannot explain it.
But
as Desi’s mother began to share her story, I stood transfixed, and the
carefully compartmentalized sections of my heart began to wobble and melt, like
sandcastles during high tide. Desi is chronically ill, that much I had surmised
from her frequent hospital stays. But
the breadth and scope of her illness was more than I could take in.
As
the details spilled from Kristina, my heart ached for this sweet child and her
family. They have been living a medical
nightmare for seven years. It blindsided them from Desi’s first days of life.
I
asked Desi’s mom if I could share a tiny portion of Desirea’s story on social
media, as a backdrop to the news story. “Oh, please do!” she cried. “I want to raise awareness in any way I can.
This is such a rare disease that it needs more research and awareness.”
Kristina paused for a moment and searched for words. “It needs a cure,” she
ended with soft hope.
And
so, Kristina began to write down details of their journey. Once she started writing, her pen took on a
life of its own and seemed unable to stop. Fourteen pages later, she laid down
her pen, emotionally spent and out of things to say. Kristina told me later that it was the first
time she had taken the time to record the crooked path of their medical
saga. I got the feeling it was
therapeutic, somehow.
The
next few paragraphs are a summation of that exercise. With Kristina’s full permission and hearty
support, I share their story.
Desi’s
mom first noticed something was wrong with her precious newborn, when Desi was
just one week old. She developed severe
cradle cap, and her hands and feet were scaly.
At three months of age, her hands and feet were so dry that they would
crack open and bleed. Thus began this single mom’s relentless search for
answers.
At
two years of age, Desirea was hospitalized for the first time with breathing
problems. There would be six more
hospital stays during that year, for either lung or skin infections. Kristina was getting desperate. What was wrong with her baby girl? Why could
no one offer any answers?
By
the time Desi was three, she had suffered fourteen individual cases of pneumonia
and numerous skin infections. In July of
her fourth year, Desi was diagnosed with her first case of MRSA in her left leg
and right wrist. The usual rounds of
antibiotics were not helping this time. The local hospital realized they could
do nothing for her and transferred her to a larger hospital. Kristina waited, alone and terrified, while
Desi underwent surgery to drain the infection.
MRSA would become a constant in their lives.
It
wasn’t until 2014 that a new doctor began to view Desirea’s repeated seeming
disjointed symptoms as a larger, unsolved puzzle. As the ICU doctor dug into
Desirea’s medical history, he found a shockingly lengthy list of recurring symptoms:
1.
Ichthyosis
(genetic skin disorders)
2.
Scoliosis
3.
Sever
Anxiety
4.
Atopic
Dermatitis
5.
Left
Valgus leg deformation with ¾ in. differential
6.
Knock
knees
7.
Asthma
8.
Severe
perleche (cracked corners of the mouth)
9.
High
Ige levels
10.ODD
11.OCD
12.Functional disorder of
the polymoronclear neutrophilis
13.Severe allergies
(If
I misspelled any of these terms, please forgive me. These words are like a foreign language to
me).
Finally,
someone in the medical world was determined to put the puzzle pieces together
and search for answers. Many diseases were suggested, but blood work finally
confirmed Low Ige Igg with Primary Immune Differcy.
Job’s
Syndrome.
I
know who Job is. At least, I know of his
legend. Job was a biblical character who was put to the ultimate test of
faith. In a conversation between God and
Satan, God held Job up as a man of true integrity and righteousness. Satan scoffs at this. Everyone has their breaking point, and Job,
however righteous, has his, too. Satan kills Jobs children, takes away all of
his vast wealth, covers Job in excruciating boils, and in a certain twist of
irony, leaves intact Job’s nagging, unhappy wife (book of Job, Holy Bible).
Little
five-year-old Desirea was similarly suffering on the scale of biblical
proportions. There is no “normal” for
her. A trip to the mall might bring on an asthma attack severe enough to
hospitalize her. She must nightly have her hands and feet slathered in cream
and wrapped in gauze. She missed half of her entire year of Kindergarten. The school environment can reek havoc on her
fragile immune system. She can’t have
friends over to her house because of the risk of infection. Can’t ride a bike without inducing an asthma
attack. Her scaling, raw skin invites
stares and shunning by other children and nervous adults. Her lungs are failing. A lung transplant looms in her future.
Kristina
recently added me to a closed-group Facebook page with frequent updates on
Desirea’s status. I watched all last weekend as the statuses came one on top of
another. MRI’s and port troubles and more MRSA.
This time in her hip and coursing through her veins. I prayed for her as I mowed my lawn, worked
on fall school activities, and cleaned the garage. By Sunday morning I couldn’t stay away any
longer. I skipped Sunday School and headed to the hospital.
That
smile… oh, that smile. It was there, just
like always. Desi’s skin is so sensitive,
it’s easier for her to go without clothing. She was putting a puzzle together
and fretting that six pieces were missing.
She was bored, hungry, and ready for company. I sent her mom out to take a break and
stretch her legs and then I read not one, but two books to this giggling
charmer. She is a prisoner in this
room. She cannot step outside her
hospital door. Can’t sit in the brightly
colored play room. Can’t venture outside
to feel the warm sun on her face. She is
a prisoner in both room and weary body.
I
read a pop-up book to her about a garden (thank you, nameless donor, that chose
this beautiful book!). Desirea sighs and
says she wishes she could go outside and play.
“Close your eyes, Desi,” I say.
She obliges. “Can you feel it?” I say. “Feel what?” she asks with her
eyes still closed. “The sun, Desi. Can you feel the sun on your face? Can you hear the birds singing and feel the
butterfly that just landed on your cheek?”
There’s that smile again. She’s
so gloriously irrepressible. “When you
get sick of this room, open your book and pretend you are outside with the sun
and the birds and the butterflies.”
I
am quiet on the ride home from Bismarck afterward. I read Kristina’s handwritten journal and am
awash in conflicting emotions. This
mother’s pain is splashed across page after page in raw honesty. I am heartbroken that any child must suffer
so. Filled with empathy and respect for all mothers that face each day with
courage. And am selfishly grateful that
my children have been so remarkably healthy.
The
biblical Job finds vindication at the end of the story. God heals Job’s body, restores his wealth,
and even blesses him with more children.
I wish these things for my little, sunny, friend as well. A healthy, restored body, and a long life
filled with every imaginable blessing.
So
there it is. We know how Job’s story
ended. Desirea’s is yet unfolding. When you read the last word of her story,
please say a prayer that this child - this brave, smart, irrepressible, suffering
child will enjoy her own “happily ever after.”
She
deserves no less.
*The occurrence of Job’s
syndrome is rare – literally one in a million.
**In 2008, only 250 cases
worldwide had been diagnosed.
Sources:
