The Truth About Butterflies: A Memoir (5 page)

I pulled up
a chair next to the bed and sat holding her hand. I tried to make sense of the
fact that she was no longer in her body.  It was too much to fathom that she
was away from me in a way she never had been before.  I was acutely aware that
after 27 years, we were apart, and the separation was tangible.  And I thought,
so this is what it feels like. 
Although I wasn’t sure what “it” was.

I sat alone
with Nicole for about an hour.  Several times I thought I saw her breathing,
but when I rose to call for the nurse, the breathing stopped.  I began
preparing myself for Eunice’s arrival.  I wanted a clean face, no tears.  She
had just lost her sister Vivian, and I couldn’t have myself falling apart on
her.

As I sat at
Nicole’s bedside, Dr. Akwari came in and sat down in front of me.  She reached
for both of my hands.  “God is enough,” she said.  “He will see you through
this, my dear.”

“I know,” I
nodded.  “Thank you.”

“What will
you do this evening?  Where will you go?"  She asked.

Her question
took me by surprise. I hadn’t given any thought to leaving.  Nicole was lying
there, and she no longer had diabetes, no longer had renal failure or needed
dialysis, she didn’t need oxygen; she wasn’t required to be anywhere or do
anything.  She had no more restrictions.  She was no longer under a doctor’s
care, and I had thought of nothing but sitting next to her, holding her hand,
and embracing her freedom.

“You won’t
be alone tonight, will you?” The doctor continued.

“No, I’ll
stay with a friend.”

“Here, take
down my number, and don’t hesitate to call me anytime you need to talk.”

Eunice
arrived and took care of calling the funeral home and everyone else
that needed to be notified.  Soon, our friend Cynthia arrived.  The Director of
Nursing served us tea while we waited for the funeral home to come. 

As we
talked, there was a soothing calm that settled over the room.  I could feel my
muscles begin to unclench for the first time in as long as I could remember. 
The angst that always rested just below my ribcage was gone.  Occasionally, I
would look over at Nicole to see if anything had changed.  Sometimes, looking wasn’t
enough, and I would walk over and kiss her cheek.  For almost three hours, we
sat and talked and sipped tea, and I was very content.  But then I saw the
hearse pull past the window.   I listened as the doors opened.  I heard the
awful clinking sound of a stretcher being snapped into place.

When the two
men in suits came in, Eunice took my arm at the elbow to guide me out of the
room, but I felt the need to gather some things to send with her: a change of
clothes, her hair brush, clean socks.  It was very odd to me that she should
leave with nothing.  “We’ll take good care of her,” one of the men said. 

We stepped
out into the atrium, and the men closed the door, but as quickly as I could sit
down, the door opened and I could hear the wheels of the stretcher.  My back
was to the door, and I'd initially decided not to look, but I couldn’t help
myself.  I turned to see the thick, black bag atop the gurney, Nicole’s thin
frame barely making a dent in it; it looked empty.  It was in that moment that
I realized I wasn’t okay, that my daughter was dead, and that more than
anything, I wanted to be inside that bag with her.

I stepped out of the hospice building feeling naked and
disconnected, like I had forgotten to get fully dressed.  “There’s no telling
when she last ate,” I heard Eunice say to Cynthia.  I knew they were talking
about me, but it seemed like I wasn’t there, as if I were eavesdropping on a
private conversation.  “We’re gonna stop for dinner,” Eunice said to me. “Are
you okay to follow in your car?” I nodded. 

As we walked across the parking lot, the chaplain pulled into a
spot and got out of his car. “Are you leaving?” He asked looking at his watch.

“Yes,” I said. “Nicole decided that 4 o’clock didn’t fit her
schedule.”

“She’s gone?” He asked.

“Yes.”

He
looked confused, displaced almost.
“But what happened?” He
asked.
 
Eunice laughed and said, “Everybody decided on 4 o’clock, but
Nicole said, ‘Y’all don’t run
this
show.’ And then she blew kisses to
her mother… and left.”

The chaplain rubbed his forehead and let out a long exhale. “Are
you okay?” He asked.

“Yes, I’m fine.”

“Well, before I left for lunch, I wrote a poem for Nicole. Do you
have time to wait so I can print it out?”

“Sure,” I said. As he disappeared through the doors, Eunice turned
to me and said. “You know, Nicole did this for you because she loves you so much.
She couldn’t have you sitting through the ventilator being turned off and then
have you wondering for the rest of your life whether you did the right thing.
This was her gift to you.”

The chaplain returned and handed me a poem entitled, “When I Get
up to Heaven.” Underneath the title was written, “for Nicole Stephan.” I
thanked him and promised that I would read it in its entirety, which I did… and
sometimes still do. The three of us, Eunice, Cynthia, and I, climbed into our
individual cars, and pulled out of the lot single file. 

As I
followed them, one thought consumed me:
It’s over
.  The rituals of the
past 18 years are over.  The uncontrollable diabetes, the endless barrage of
insulin shots and finger sticks, the unpredictable heart, the lungs that don’t
work, the constant nausea, vomiting, and diarrhea, the headaches, the food and
fluid restrictions, the aching joints, the dialysis 3, 4, and 5 times a week,
the medical tests, the surgeries, the bad veins and central lines, the
appointments, they’re all over. 

No more
listening to my daughter cry through the night, no more dread of wondering if
she’ll pull through yet again, no more ventilators, no more fear about her
future, no more panic every time the phone rings.  No more trying to make a
good impression or walking a thin line in the hopes of being approved for a
kidney.  Relationships with doctors, dialysis centers, pharmacies, paratransit,
medical supply companies, home health agencies, and hospitals, relationships we
were in but didn’t want are all over.

As I rode,
another thought struck me.  I wondered if Nicole knew how much I
really
loved her.  When she was little, we played a game.  I would say, “I love you,”
and she would ask, “How much do you love me?”  And I would stretch my arms as
wide as I could and puff out my cheeks and squeeze my eyes shut, and she would
giggle and clap her hands; “Tell me again, Mommy, how much you love me.”  As an
adult, at those random moments, she would say, “Mommy, I love you.”  Trying to
make her laugh, I would mimic her little-girl voice and say, “How much do you
love me?”  Instantly her eyes would fill with tears.

By the time
we made it back to my house, the funeral director had called and left a
message.  He said I should bring clothes for Nicole and plan to sit down with
him to discuss the arrangements.  I agreed to come the next day, which was
Saturday.  I packed an overnight bag, and Eunice and I left for the 45 minute
drive to her house. 

The next
morning, we went back to my house.  Sherry dropped by, and the three of us
searched Nicole’s closet for an outfit to take to the funeral home.  It was
difficult to find something that would cover the scars on her body.  All of her
tops had low-cut necklines, and the surgical scar from her thoracic surgery
rested on the center of her chest like a thin, brown snake.

Eunice,
Sherry, and I made our way to the funeral home.  As we sat around the fine wood
conference table, I couldn’t help but wonder where in the funeral home Nicole’s
body was at that very moment.  Was she in a cold place, or was she lying in an
open room?  Was she covered up or exposed?  Was she really even dead? 

The funeral
director opened a file and passed me a document.  “I know we talked briefly
over the phone, and you expressed your wishes for the arrangements.  I’d like
you to review the document and make sure everything is to your satisfaction.” 
Nicole and I had talked about death often and in great detail, but it had
always been
my
death that we discussed and how she should handle the
arrangements.

I’d told
Nicole that the last thing she needed to worry about while dealing with my
death, was trying to make elaborate arrangements: paying for a funeral
location, paying someone to officiate, paying for expensive flowers, paying for
an outfit, paying for the programs.  “Death is a money maker,” I told her, “and
there will always be those ready to capitalize on your grief.”  My instructions
to her were clear. 

I don’t
want a funeral, wake, or public viewing.  A simple graveside service will
suffice.  No embalming, and the least expensive casket will do.  After all,
what good is a $5,000 casket?  Once it’s lowered into the ground, sealed in a
vault, and covered with dirt, it’s no different than any other box.  Afterwards
when you purchase a stone, it should be small and simple, no Bible opened to
the 23
^rd
Psalms, no praying hands, no angel with wings unfurled, no
cherub with a wistful gaze, instead, a simple stone with my name and dates.
 

After
listening to this, Nicole had insisted that she wanted the same thing when she
died, but I wasn’t convinced. 

A few years before,
we were having dinner with Eunice and her family.  As I fixed my plate, I asked
Eunice, “Did you put maws
[2]
in this dish?  Because
you know I don’t like maws.” 

“I did,” she
said.  “I forgot you don’t eat them.”

Nicole
stopped eating and looked down at her plate.  “Are there maws in mine?”

“What
difference does it make?”  I asked.  “You’re on your second helping.”

“Because I
don’t like maws.”

Eunice
laughed.  “Just because your mother doesn’t eat them is no reason for you not
to like them.”

 Doubting
that she even knew what they were, I asked, “What are maws, Nicole?”

She took her
index finger, put it on the rim of the plate, and slowly pushed it to the
center of the table before answering, “I don’t know what they are, but I know I
don’t like ‘em.”

Knowing that
she often liked or disliked things simply because I liked or disliked them, I
was a bit skeptical when she insisted on final arrangements like mine.  But she
insisted that, “for all the reasons you just gave, I want arrangements just
like yours.”  As such, I signed the document and gave it to the funeral
director.  As Nicole and I had discussed, there would be no funeral or public
viewing.  That Monday, we would have a graveside service, and she would be laid
to rest. 

When we
arrived back at my house, the cemetery folks called and asked me if I had other
children or if I was married.  I didn’t understand why she was asking, but
before I could even inquire, she said, “I hate to bring it up at a time like
this, but if you don’t already have a plot and vault for yourself, you might
consider purchasing a double plot with your daughter.  You can get it at the
same rate you paid for hers, but you can pay for yours over time, with no interest.” 
It sounded like a good plan, but I wasn’t sure if I was in the right frame of
mind to make an on-the-spot decision.  “Can I give you a call after I think
about it?”

“Well, I
need to know by tomorrow.”

“Why
tomorrow?”

“Because
that’s when we’ll open the ground for your daughter’s burial.  If you buy a
double, you’ll be buried on top of your daughter, so they’ll need to dig a
little deeper to accommodate both vaults; we need to know before we start
digging.”

I told her
I’d call her back within the hour.

When I hung
up the phone, I thought about how it would work out with my being buried on
top.  I can hear it now, Nicole tapping on the bottom of my casket asking me to
come down there so she could show me something.  And once she got me down there
she’d say, “Since you’re here, you might as well spend the night.”  And then
one night would turn into five nights, and then she’d say, “You might as well
just stay.”

I called the
lady back and gave her the okay on the double plot even though I knew it would
be a waste of money.  After I die, the best option would be to simply open
Nicole’s vault and drop me in with her.  We all know that’s where I’ll end up
anyway.

On January
14, a little before 2 p.m., we arrived at the cemetery.  The cloudless sky was
a pristine blue.  Nicole’s white casket rested beneath a green canopy that was
decorated with palm fronds.  The wind was so gusty that at one point I thought
the whole canopy would lift off the ground and blow away. 

We gathered
and took our seats, 15 or 20 of us.  My two friends Calvin Tibbs and Ricky
Hunter would eulogize Nicole.  Both had watched her grow up.  Calvin spoke
first; smiling as big as the day itself, he said the peace and culmination of
joy that we all longed for, Nicole had finally attained, that we would miss her
but that we shouldn’t be sad for her.  Then Ricky spoke; his words brought me a
sense of tranquility.