The Truth About Butterflies: A Memoir (3 page)

What is
faith, though, if not exercised during times of impossibility?  Even so,
because medicine is rational and faith defies all rationality, conflict arises
when the two face off.  Denial most certainly exists for those facing a loss;
it’s part of the natural process, but it has absolutely nothing to do with
faith.  When denial has run its course, faith, ideally, persists unscathed. 

For what it
was worth, I was going to tell this doctor exactly what I wanted for my
daughter.  She could either take it or leave it.  Either way, I had nothing to
lose.  “I want her to get better.  I know what her prognosis is,” I said, “but
even now I don’t think that her healing is beyond God’s jurisdiction.”  I
waited for her lecture, which would be filled with words like
denial
,
realistic
,
and
false hope
.  Instead, she reached for my hands.  “My dear, I’m a
born-again Christian, and I know God can do anything.  If He wants to heal
Nicole, He certainly can.  I don’t know what He will do in
this
case,
but in any event, you won’t go through this alone.  I’m here to make sure you
get through this with your faith intact.”

If there was
indeed a balm in Gilead, her words had been steeped in it, and for a moment I
was speechless.  For once, there was no concern over whether Nicole had adhered
to her fluid restrictions, no undertones that she somehow deserved this, or
that she was rebellious and angry and got what was coming to her.  The only
thing under consideration was that in all likelihood a daughter would be dead
very soon, and a mother, who in 27 years had never been without her daughter,
would have to learn how to keep living.  That’s all that mattered.  She
explained a little more about what changes to expect in the coming days if, of
course, God didn’t heal Nicole. 

I made it
home by 9 p.m.  As I lay in bed completely spent, I began to hatch a plan. 
Unbeknownst to this Nigerian doctor, she and I would join our faith and force
God’s hand in this matter.  We would march over to His place unannounced.  She
would take the front door, and I would take the back, and we would beat
relentlessly.  He would cover His head with His pillow, but our pounding would
echo in His ears like a muffled heartbeat.  He would turn on His music and
blast the volume, but He would be unable to drown out our wailing.  Finding no
peace, He would acquiesce and
come out to us.  Having His
full attention, I would speak first. 

I would
explain that if He took away my only child, I would have nothing.  My entire
being would become hollow; my lungs would fill with dust, and I would be
useless.  Then the doctor would chime in.  She would compel Him with impressive
jargon and woo Him with her medical prowess.  She’d tell Him how this miracle
wouldn’t be lost on her because she was fully aware of the improbability of it
all. 

While she
spoke, I would render my own soliloquy so that there would never be a moment
when our cries were not ringing out.  We would continue back and forth, nothing
short of a filibuster, until He threw His hands in the air and said, “For their
own sakes, give them what they want, and send them away.”  It never occurred to
me that Nicole might be nestled inside bathed in bliss with no intentions of
ever coming back to this place.  At some point during my strategic planning, I
fell fast asleep and slept soundly until morning.

The next
day, Nicole’s breathing was noticeably worse.  Even with the assistance of the
ventilator, her shoulders shrugged slightly with every breath.  Her face was
becoming puffy; it had been five days since her last dialysis.  I asked Dr.
Akwari how long Nicole could survive without dialysis.  She caressed the back
of Nicole’s bony hand and said, “Even though she’s not eating or drinking, her
body is still producing toxins that are not being removed.”  I remembered the
hospital dietician explaining it to me once. 

When the
body doesn’t have food, it begins metabolizing its own muscle, and the
byproduct of muscle breakdown is potassium. “If your kidneys work, you just pee
out the extra potassium,” the dietician had said, “but if not, the potassium
builds up in the blood and can be very dangerous to the heart.” 

I’d had the
conversation with the dietician because the month leading up to December 6, the
day Nicole’s heart stopped, Nicole had been in and out of the hospital with
cardiac complications due to high potassium.  The doctors believed she was
intentionally eating high-potassium foods with no regard to her health.  I
insisted that she wasn’t because I had rid the kitchen of potassium-rich foods,
and I was the only one buying groceries.  Nicole was hardly eating anything
anyway and was spending most of her time in bed.  “Then how come when she’s in
the hospital a few days, her potassium comes down?”  The nurse practitioner
Reba had asked.  I couldn’t give her an answer because I had no clue why it was
happening.  This seemed to further validate her claim that Nicole was doing it
intentionally.  I guess it was possible that when I left for work each morning,
Nicole would throw back the covers, call her friends over, and have an all-out
potassium party, but it was highly unlikely.

The
situation had bothered me, so when the dietician came by to see Nicole, I asked
her why Nicole’s potassium would be high at home, but stabilize once she was in
the hospital.  “What does she eat at home?”

“Hardly
anything.  I’m lucky if I can get her to eat some crackers.”

The
dietician thumbed through Nicole’s chart.  “It looks like she’s at least eating
a little bit while she’s here in the hospital.”  She turned to Nicole.  “You’re
not eating at home?”

“No, when I
eat my stomach cramps really bad.”

“It doesn’t
cramp when you eat here?”

“Yeah, but I
get dilaudid in my IV, so even though my stomach hurts I can tolerate it.” 

“Well, that would
explain it,” the dietician said.  “If she’s taking in nutrition here at the
hospital, her body is no longer metabolizing its own muscle.  How long has she
been not eating?”  I told her that it had been a gradual process.

The previous
January, the endocrinologist had diagnosed Nicole with gastroparesis, a
complication of diabetes that makes digestion difficult and painful.  Nicole’s last
attempt at a meal had been Thanksgiving. 
From November 22 until December 6, she had
refused almost all food.  Her thin, tall frame was nothing more than a skeleton
with a layer of flesh.  Regardless of what the doctors believed, I knew that
Nicole wasn’t eating potassium by the fistful.
  

As Dr.
Akwari explained that the toxins would continue to strain Nicole’s respiratory
system, I knew that Nicole’s struggling to breathe was not a threshold I was
willing to cross.  When Nicole and I had talked about either of us being in
this situation, she had said, “Mommy, I don’t know if I could let you go.  How
would I know when to do it?”  We’d had this conversation as Terri Schiavo’s
[1]
case unfolded in the
media. 

Like we had
on so many occasions, we sat in the car in the driveway after coming in from
dialysis.  At dusk, rabbits would come from their burrow, and we’d count the
pairs of ears we’d see bouncing through the tall meadow grass that grew in
abundance along the edge of the property.  We’d sit and talk, sometimes for
hours, on different subjects, each of us raising the philosophical bar for the
other.  But that particular spring night, we talked about Terri, who had passed
a few months earlier, and we talked about letting go. 

I was unable
to give Nicole a definitive answer on
when to let go. 
But
I do
believe there’s a place on the brink of suffering where all of one’s emotions
gather like great philosophers.  They reason amongst themselves on the best
course of action.  But it is only when love stands up and decides when and
where the line must be drawn that all of the other emotions fall silent in
agreement because they know that love is never wrong.  It’s in that moment of
pure love that decisions and actions become clear.

“I don’t
think you’ll know until the moment comes,” I told her, “but when it does come,
you’ll know for sure.” 

Nicole
always trusted me to make the right decisions, but it was her own words that
would help me when the time came.  “Ma, don’t let me go until you’re satisfied
in your own heart that I won’t wake up.  Don’t listen to the doctors either;
they’ve been trying to kill me since I was little.”  From the time she was nine
years old and first given an insulin needle, Nicole believed that doctors had
it in for her.  I asked the nurse when Dr. Akwari would be coming.  “She’ll be
in later this evening, six or seven-ish.  Would you like to see her?”  I
nodded.

The social
worker came and gave me a list of funeral homes.  There were over 40 of them on
the list.  Only one was familiar; it was a funeral home about a mile from my
home.  I called the number, and the funeral director said he’d fax over a list
of services.  When I got the list, I went down it with a pencil, very much like
I would a grocery list, placing a check mark by the services I would need.

Early that
evening, Eunice’s niece Tye, her husband Jay, and their two girls came for a
visit.  We laughed and talked and alternated between watching TV and watching the
children play.  I wanted to scream and beat the walls, but instead I smiled and
asked Jay for the recipe to his steamed asparagus he’d fixed at Christmas.  
Wanting to play hardball, he said an outright gift of the recipe was
impossible, but he’d be willing to barter for my cranberry cobbler recipe.  I
looked him up and down.  “My cobbler is easier to make than you think.” 

“So is my
asparagus,” he shot back.  

We narrowed
our eyes, glared at each other, sneered a little.  No recipes were swapped that
night, but I would’ve given him my recipe on a silver platter if it meant that
Nicole would wake up.  We both knew that cobbler and asparagus had nothing to
do with our Nicole, but we used the mock standoff as a temporary release from
the stifling reality that hovered over us.

During our
visit Dr. Akwari came in, and I asked to speak with her out in the atrium.  Tye
insisted that the doctor and I stay in the room while they waited in the
atrium, but my not wanting to talk in the room had nothing to do with them and
everything to do with Nicole.  I would try not to, but I knew I would cry when
I started talking to the doctor.  I didn’t want Nicole to hear my crying or
sense my anguish.  It would serve only to make things more difficult for her. 

She had often
told me that she feared for me when I was home alone.  “What if someone breaks
in, and I’m not there to protect you?”  She’d asked.  On the many occasions
that she was hospitalized, she would call me at odd hours of the night to see
if I was okay.  “Did you lock the back door?  Keep my baseball bat near your
bed.”

Regardless
of her need to feel like my guardian, Nicole always trusted me to make the
right decisions no matter how difficult the situation, and so I sat down with
Dr. Akwari and made the decision because, as Nicole had admonished, I was
satisfied in my own heart, without any external pressure, that the time was
right.

I’m sure Dr.
Akwari knew why I wanted to talk to her.  Even so, she didn’t bring it up or
even suggest it.  She just sat quietly, held my hand, and listened as I choked
out the words.  “I think you’ve made the right decision,” she said.  “Please
don’t second guess yourself.  Just think of it: no more diabetes, no more
shots, no more kidney disease, no more dialysis, no more suffering.  It will
simply be goodnight, and then heaven.  It will be so beautiful.”  The tone of
her voice, mellowed further by her British accent, made it impossible for me to
feel anything but peace.  So the decision was made; at four o’clock the next
afternoon, we would remove Nicole from the ventilator. 

As my guests
prepared to leave, I walked them out.  Tye stayed behind for a moment.  I knew
she was whispering something sweet into Nicole’s ear, caressing her cheek,
telling her that all was well and that her mother would be taken care of.  We
all gathered out in the parking lot.  It was dark and cold and had begun to
rain.  It would’ve been a good time for me to cry, but I feared that somehow
they would discern between the teardrops and the raindrops on my cheeks.  Maybe
they would question my strength, my ability to square my shoulders and face
this storm head on.  I had been a no-nonsense handler of all things difficult
my entire life.  It was important for me to keep up that appearance no matter
how hard my insides were buckling. 

The girls
had given me a card they’d made.  On the front they’d written: “We love you
very, very, very, very, very, very, very, very, very much!”  Nine “verys” from
two giggling little girls added at least five healthy years to my life.  The
girls climbed into the SUV, and Tye, Jay, and I stood quietly in the rain. 
Words weren’t needed.  Nothing we could’ve said would’ve added any meaning to
that moment.  Besides, silence is a language we understood, so we embraced in
silence, and nothing was lost in translation.

January 11,
2008.  I wondered if it was the day my daughter would die or the day that God
would work His miracle.  As I readied myself for the trip to the hospice
center, it occurred to me that I probably should clean the kitchen before
leaving the house.  The thought of coming home to dishes in the sink worried me
in an almost unnatural way.  But what good mother cleans house on the day her
only child might die?  I did the dishes quickly and left for the center.