The Truth About Butterflies: A Memoir (4 page)

Instead of
taking the expressway to the hospice, I took the back roads.  Along the way, I
stopped at a deli and picked up a sandwich.  Then I stopped at one of the mega
hardware stores and roamed the massive aisles looking at lamps, lawnmowers,
floor and window coverings, and tools.  Anything one could possibly need to fix
or improve a home could be found within these walls.

Then it hit
me like a punch in the stomach; Nicole might die this very afternoon, and what
would she think if she knew I was milling around a hardware store?  Why had I
even gone home at all?  Why hadn’t I spent the night?  The guilt was sickening,
like a bit of bad meat rotting in my stomach.  Stalling was useless, and it
surely wouldn’t change the events of the day.

When I
arrived, there was no significant change in Nicole’s condition.  I couldn’t
wait to kiss her and let her know I was there.  The phone rang; it was my
friend Sherry.  “How do I get to where y’all are at?” She asked.  “Are y’all
near the hospital up there?”

“Yeah, pretty
close,” I said.  “We’re on the same street.”

“I’ll be up
there when I get off today.  Y’all need anything?”

I hesitated
for a moment as I wondered if I should tell her what the plan was for that
afternoon.  Should I tell her not to bother coming because if everything went
according to plan, Nicole might be dead at four o’clock?  I didn’t know how to
put that into words that sounded appropriate, so I didn’t mention it.  “No, we
don’t need anything.”

“Have y’all
eaten?” 

She kept
saying “y’all,” but I knew she meant me
.

“Yeah, we’ve
eaten.”

“What y’all
eat?”

“Sandwich.”

“Alright
then.  If I get lost, I’ll call y’all.”

“Okay, we’ll
be here.”

Shortly
after I hung up with Sherry, the nurse came in and sat with me for a while. 
She looked up at the white board.  “That’s a beautiful scripture,” she said as
she recited it aloud.  “This is the day that the Lord has made.  I will rejoice
and be glad in it.”  I explained that I was anxious about what would happen
later, and I wrote the scripture on the board as a focal point.  She told me
that she had come in the room earlier before I arrived and talked to and prayed
for Nicole.  “I just loved on her and loved on her,” she said as tears welled
up in her eyes.  I was humbled, and I thanked her, though thanking her seemed
most meager.  “Have you eaten?”  She asked wiping her eyes.

“Yes, I had
a sandwich.”

“That
sandwich sitting over there unopened?”

I looked
over at the sandwich that I was planning to eat at some point.

“I’m not
very hungry.”

“But you
need to eat something.”

“I’ll throw
up.”

She left and
quickly returned with a cup of coffee.  “Just sip on this,” she said, “and I’ll
be back to check on you.”

Over the
next hour or so, several people stopped by.  One by one, they came and
introduced themselves as employees of the hospice and said they had come for
nothing more than to simply be with Nicole and me.  They asked if I needed
anything.  They might as well have been asking a newborn if it was hungry or
cold.  If I needed anything, I didn’t know it.  Like an infant, I would depend
on someone else to know and supply what I needed. 

All I knew
for certain was that I was there, and that not too long ago Nicole and I were
living our own lives.  And then she got sick and, by the score, doctors and
nurses and therapists and social workers began falling out of the sky.  They
were everywhere, in our refrigerator and cupboards.  They found their way into
the ice trays in our freezer.  Their names could be found on food labels.  In
our wallets, their faces replaced those of dead presidents.  In the attic
behind the Christmas decorations, in our medicine cabinet, they were there. 
Our lives were no longer our own.  Every facet was governed and judged by
someone else.  First we were free, then we weren’t, and now we were here. 
That’s all I knew for certain.

A tall,
well-built man in a suit came into the room and introduced himself as the chaplain. 
His first comment, as was almost everyone’s, was how tall Nicole was, how she
filled the bed from top to bottom.  He eased down into the armchair across from
me and asked how I was feeling about that afternoon.  Truthfully, I was feeling
as if a thousand tiny shards of glass had lodged in my throat, and every time I
swallowed, I was reminded that I was a few seconds closer to losing Nicole.
“Anxious,” I said. 

“Sometimes I
sing when people are removed from the ventilator.  Would you like me to sing
this afternoon?”

“Thank you
for offering, but I’d like for it to be quiet.”

“Do you or
Nicole have a favorite scripture you’d like me to read while the machine is
being turned off?”

I shook my
head, “I’d just prefer it quiet.”  The truth was, I didn’t want any of them
there.  I wanted to be alone, but I didn’t know how to tell them without
seeming rude or ungrateful.  The night before, the nurse told me that they had
a protocol:

When
someone is removed from the ventilator, we all come into the room and gather
around the bed.  We place our hands on the person so they know they’re not
alone, and we send them off with love and peace.  It’s so beautiful. 

I was
horrified.  I didn’t want friends, doctor, nurses, or chaplains present for
that sacred moment.  But how could I even suggest this to these caring people
whose only objective was to make sure we weren’t alone?  How could I tell them
that Nicole and I and the sunlight that was pouring through the window were
enough? 

As I sat
sipping the coffee that the nurse brought, I thought about what might happen
that afternoon.  I knew, by all indications, what was
supposed
to
happen.  Nicole would be removed from the ventilator and at some point shortly
thereafter die.  Contrary to indication and aside from my faith, however, that
seemed unreasonable, and I couldn’t believe this would be the outcome.  God
would come through.  He was bluffing me like he’d bluffed Abraham, and at the
very last minute, right before she took her last breath, He would say, “Now I
know for a fact that you have faith,”  and then He would restore everything. 
There had to be a ram in the bush because there was no way He would actually
take her.  He knew she was all I had. 

In any case,
I walked to the foot of the bed and pulled back the covers.  Nicole’s feet were
warm and soft, and I caressed them as I began to pray.  “Father, forgive Nicole
of all her sins, and place her spirit in right standing with You.  Teardrops
splashed down on her feet, and I massaged them in like an ointment.  I covered
her feet and made my way up to the head of the bed.  I ran my fingers through
her soft, curly hair.  “Don’t worry about me.”  I choked back tears.  “Your
mommy is tough, and she’s gonna be okay.”  But deep inside, I didn’t feel
okay.  It felt as if my bones had turned to chalk. 

As I stood
there humming,
You are my Sunshine
, a song I’d sung to her since her
birth, I imagined how wonderful it would be if the angels came and spirited
both of us away at the same time, that in one instant I was a mother weeping
over her dying child and in the next both of us would be suddenly free; all of
our looming fears would become extinct.  The mere thought of it was rapturous. 
I sat down in the chair next to the bed, not knowing that within seconds, and
without the intervention of medicine, my Sunshine would slip away.

I had grown
tired of the music that was playing, so I turned off the CD player and turned
on the TV.  Tom & Jerry’s “Robin Hoodwinked” was on.  As I watched, I
thought about what would happen when the ventilator was turned off.  “You know,
Nicole,” I said as I turned to her, “later on, this room will be filled with a
lot of people we don’t know, and you know how I feel about that.”  I said this
jokingly because she knew how uncomfortable a situation like this would make
me. 

I turned
back to the TV as Jerry and his diapered young cousin were about to spring
Robin Hood from jail.  Just as they sneaked the key from Tom the jailer, I saw
Nicole moving in my peripheral vision.  I sprang up and pressed the nurse’s call
button, but it wouldn’t ring.  When pressed, the buzzer could be heard very
clearly throughout the small facility.  I pressed and held it, but nothing
happened.  I started to run for help, but it would’ve meant leaving Nicole
alone, and that was out of the question. 

Her upper
body twitched several times as if she were trying to suppress a cough, and then
she opened her eyes for the first time since December 6.  She gazed upward and
past me.  There was no grimace, no expression of fear or pain, just the
effortless gaze of someone who had been awakened out of a light sleep.  I knew
the angels had come to take her and that
she was
seeing beauty and light. I knew she was seeing the warm, loving faces of people
who had come to embrace her. I knew that she was stepping out of the cocoon of
her flesh and walking into an ecstasy that she never imagined possible.
I
called her name several times.  I caressed her shoulders and cupped her face in
my hands.  I kissed her lips and told her it was okay. 

The entire
episode lasted about 10 seconds, and then her eyes closed and she fell still
once again.  I ran out to the atrium and called for the nurse.  Both she and
the assistant began running my way. 

“Something’s
happened,” I said.

“What do you
mean?”  The nurse asked as they rushed into the room.

“She was
moving.”

By this time
we were at the bedside.  For all intents and purposes, Nicole looked to them
exactly as she always had, lying comatose with her chest rising and falling to
the ventilator.  I couldn’t bring myself to say to them that she was gone.  The
two of them were on one side of the bed, and I was on the other holding
Nicole’s hand.

“She was
moving, and then she wasn’t,” I told them.

“It’s okay,
honey,” the nurse said.  “It’s probably her sugar; you know how brittle she is.”

The nurse
had donned her stethoscope and was listening to Nicole’s chest.  The assistant
was preparing to stick Nicole’s finger to check her sugar.  There was something
about sticking her finger that sent a panic through me.  I didn’t want anything
else done to her—no tests, no needles, nothing.  “But she doesn’t have a
pulse,” I said, and they both stopped what they were doing.

I looked up
to see Dr. Akwari rushing into the room.  I was surprised to see her as she’d
said she would arrive at 3:30 p.m.  It was only a minute or so after one
o’clock. “What’s happening?”  She asked.  The nurse shook her head, “She’s
passed.”  Dr. Akwari motioned with her arms for them to move.  She leaned over
and listened with her stethoscope.  Then she disconnected the ventilator tubing
and listened again.  She stood up straight and simply nodded.  Finally, she
whispered, “Yes, she has gone.” 

Before I
could move from the bedside, Dr. Akwari had come around to my side and embraced
me, hugging me tightly to her bosom.  But I felt okay.  My daughter had just
died, and I was okay.  I was saying this over and over in my head, “I’m okay,
I’m okay,” when I realized that I wasn’t standing on my own and that the doctor
was bearing most of my weight.  I was weeping, but it sounded like someone in
the next room. 

As I
struggled to pull myself together, Dr. Akwari whispered in my ear, “This is so
beautiful; please understand how beautiful of Nicole to have gone this way. 
Please, come with me,” she said as she grasped my hand. 

As we were
leaving the room, the nurse switched off the ventilator, and the sudden silence
was overpowering.  I turned to see my daughter, my little girl, lying dead, the
covers pulled back, the ventilator tube jutting from her mouth.  It came to me
in that moment that maybe I was the one in a coma.  I was sure of it.  I had
been in some type of accident and was in a coma.  I was hallucinating; all of
this was some type of drug-induced hysteria.  Soon I would come out of the coma
and Nicole would be standing at my bedside.  All of this, the kidney failure,
dialysis, all of it will have been a horrible nightmare.  “They’ll take good
care of her,” Dr. Akwari said as she tugged my hand. 

We went out
into the atrium and sat on the sofa.  She began talking, but my attention was
focused on what might’ve been going on in the room, the sounds of things being
turned off, and switches being flipped.  I was anxious that they were with her,
touching her, changing her gown, and giving her clean blankets.  I was her
mother; these are the things I should’ve been doing.  I struggled over the
doctor’s voice to hear what was going on.  Dr. Akwari stayed with me until the
nurse came and said I could go in and sit with Nicole.

It was the
first time in over a month that I had been alone with Nicole that there was
complete silence, no ventilator or machines whirring, no tubes or IVs. 
Earlier, I had opened the windows in the room.  Even though it was January, it
was a very mild day, and the blue skies were filled with the bright, noonday
sun.   Everything was quiet and still, except for the inhaling and exhaling
sound the earth makes on a breezy day.  I leaned down and kissed her forehead,
cheek, and pale lips.