The Truth About Butterflies: A Memoir (22 page)

They stood
around me in a semi-circle waiting, I suppose, for me to bow out gracefully and
tell them to stop working on her.  Instead, I stood up, walked around them,
went into the restroom, and locked the door.  I didn’t come out until I saw the
reflections of their feet shuffling away.

Once she was
resuscitated and stable, Nicole was dialyzed.  When I was allowed to see her, I
pulled up a chair next to her bed and didn’t move until the next morning when
the neurologist came to talk to me.  “Your daughter is not going to wake up,”
he said.  “She can persist in this vegetative state, or you can remove the
equipment and let nature take its course.  I wish I had better news.”  And then
he left. 
I knew what he said was not the truth
because Nicole and I had just signed our Christmas cards, and we had yet to put
up our tree.

After the neurologist left the room, the nurse came in. “Can I get
you anything?” She asked as she reached for my hand.

“I don’t think so,” I said.

“We’re gonna take very good care of Nicole. She’ll continue to get
her dialysis on schedule and all of her meds, so while you’re deciding what
your next step will be, I don’t want you worrying about any of that.”

I thanked her.

Dr. Bihar peeked in and asked if he could talk to me in the hall.
“Has the neurologist been in to talk to yet? He asked.

“Yes.”

“Well, we kinda knew from yesterday that it didn’t look good,
didn’t we?”

I answered his question with a question of my own. “Is it true
that you guys think Nicole did this to herself intentionally so she could come
to the hospital and get dilaudid?”

He looked at me, speechless.

“Because that’s what Reba said, that
all
of you had agreed
that Nicole somehow did this so she could come here and get drugs.”

He looked down at the floor and said, “I’m very sorry she said
that to you.”

And I waited for him to say that it wasn’t true, that Reba had
misunderstood the conversation, or that the conversation hadn’t even taken
place, but he didn’t. “I’m sorry,” he said again, “and I apologize on behalf of
the team.”

I wondered what other conversations they’d had about my daughter
and what other labels they’d assigned her. Something shifted in me. For the two
years that Nicole had been in their care, I had always used tact and diplomacy
when talking with them. I didn’t want to do or say anything that might ruin her
chances of getting a transplant. But all of that changed in that moment. I
could feel myself bristling, my jaw tightening.

“You’ve got some decisions to make,” he said.

“I know I have decisions to make; I don’t need
you
to tell
me that.”

The atmosphere had grown hostile, and he knew there was no use
continuing. He nodded and said, “I’m here to help you, so if you need anything,
just have them page me.” He patted my arm and walked away.

I went back into Nicole’s room and stood for a moment at her
bedside. They had just changed her gown and bedding for the fifth time. She was
sweating so profusely that every few hours they had to strip the bed and
reapply the monitor leads that kept slipping off.  The neurologist had said the
thermostat in her brain was malfunctioning and her body was having difficulty
cooling itself. I leaned down and whispered in her ear. I told her how very
much I loved her; I wept and apologized for allowing this to happen. Of course,
no mother allows disease to take over her child’s body, but to me, not being
able to prevent it was the same as allowing it to happen. 

I told Nicole that I was going home to shower and change clothes
and that I’d be right back. I hadn’t left the hospital in over 24 hours, so
when I walked outside, the sun was far too bright, the air far too cold. When I
got home and walked inside, the place looked like a crime scene; the floor was
littered with medical debris, the furniture pushed to one side of the room.
Instead of cleaning up the mess, I flopped down in the nearest chair and cried.

Once again,
I faced a burdensome dilemma, and once again, I wanted to take my baby and run
away.  But I couldn’t run because there were decisions to be made.  Nicole had already
told me that if she were ever in this situation, not to let her go until I was
satisfied in my own heart that she wouldn’t wake up.  Being satisfied in my own
heart was not asking too much; it was the least I could do.  

Thirty days.  That’s the amount of time I gave the situation, but
I didn’t tell Dr. Bihar.  A few days earlier when we’d discussed Nicole’s
prognosis, I’d told him I needed time to pray and think about how I should
proceed.  “Against all odds, people have woken up from comas,” I said.

“Yes, but it’s rare,” he said. Then he said that if God were going
to heal Nicole, He would just do it, that He didn’t need us to give Him time.
“He
is
God, after all,” he said. 

I liked Dr. Bihar.  He had a good heart and I knew he was genuine
in his concern for Nicole, but I also knew he represented the interests of the
hospital.  They had made their prognosis, and they wanted Nicole either taken off
the ventilator or discharged to hospice or to a nursing home. They didn’t come
straight out and say this, of course, but it was very clear that whether Nicole
was going to live or die, she needed to do it somewhere else.

So when I decided to give the situation 30 days, I kept it to
myself. Every morning when Dr. Bihar made his rounds and asked, “Have you
decided yet?”  I’d say, “No.” Still, he would press me for a specific time
frame saying, “It’s very frustrating for us doctors when we don’t see an end in
sight. We need to know that there’s closure in the foreseeable future.”  But,
much to my credit, I was no longer concerned with what frustrated the doctors
and had learned, more importantly, that keeping things private and close to my
bosom would be best for Nicole and me.

“Best for Nicole and me” is all I cared about at that point, not
the doctors, or hospital administrators, or the people in the basement who
counted the money… or moaned over the lack thereof… only what was best for
Nicole and me.  

I couldn’t be pulled away. Every day and night, I sat at Nicole’s
bedside. I sang to her, read to her, and talked to her. I bathed her, shampooed
her hair, and massaged her body with the exotic butters she kept on the top
shelf of her bedroom closet. I rubbed her joints and exercised her long, thin
limbs. I laid holy hands on her, anointed her head, and prayed for her.

During one of her dialysis sessions, Nicole’s heart rate was
hovering around 140, so Amber, her nurse that day, called for the cardiologist.
 Amber and I had been having a wonderful conversation about love, life, God,
family…, the usual things women talk about when we get together. 

The cardiologist came while we were talking.  He asked Amber some
questions, listened to Nicole’s heart, and ordered some medication.  Then he
walked over to where I was sitting and said, “Do you even know what’s going on
here?”  His question was so direct and unexpected that it caught me off guard. 
“Do you think she’s going to wake up?  Because she’s not.” 

Just moments before, Amber and I had been caught up in a wonderful
conversation, and even with Nicole right there next to me, I’d forgotten, just
for those moments, that anything was wrong, but now reality had returned. For
some reason, I was embarrassed and wanted Amber to leave the room, but she kept
standing there listening and fluffing the same pillow.

“And I hear
that you haven’t signed a DNR,”
[11]
the doctor continued. 
“So if she crashes again, I, and everybody else, will have to come in here and
do CPR, and for what? 
I know you love your sister,
but you need to do what’s best for her and not what’s best for you.”

I saw Amber inhale as if she were going to say something, perhaps
straighten him out on whom he was talking to, that I was this girl’s mother, not
her sister. But she only sighed and continued fluffing the pillow. Just as
well, as I don’t think my relationship to Nicole would’ve changed the point he
was trying to make.

After he walked out, Amber came over and sat down next to me.  “Do
you know what’s going to happen later today?”  She asked.

“What?”

“At the end of the day, while you’re sitting here with Nicole, he
and all the other doctors are going to go home, have dinner with their own
children, and enjoy their families.  The decision you make regarding Nicole is
not going to change the course of their lives one bit.  So while they’re trying
to back you into a corner, you better make a decision that
you
can live
with.”

I was glad she’d stayed in the room after all.

“If this were my child,” she continued, “I wouldn’t do anything
for at least a month.”

Delighted to hear her say this, I blurted out, “Thirty days! If
there’s been no change in Nicole’s condition, I’ll transfer her to hospice in
30 days. A nursing home is completely out of the question.”

“So you’ve thought about this and have a plan,” she said.

“I do have a plan,” I said, “but I don’t want to tell Dr. Bihar
because he’ll try to convince me why 30 days needs to be cut down to 1 day and
why that 1 day needs to be right now.”

She was still holding the pillow. She stood up, walked over to the
bed, and positioned the pillow under Nicole’s arm and said, “Like I said,
whether it’s 30 days or 1 day, make sure it’s
your
decision, not theirs.
If you don’t, you’ll regret it for the rest of your life.”

Regardless of what the doctors thought, I was not in denial, or
shock, or oblivious to the severity of Nicole’s situation. Nicole and I had
talked about this scenario a long time ago. I wasn’t making this decision on my
own, selfishly, without any consideration for her or her wishes.

By
the second week, I still hadn’t let Dr. Bihar in on my 30-day plan.
“Think of it this way,” he said, “at least you’ve gotten
her this far. You should be proud of yourself.” I know he meant
those words to be encouraging. But this is what you might say to a
marathoner who realizes he can’t finish a race; it’s
not
something you’d
say to a pilot whose plane is going down half way across the Atlantic, or to
the captain of the Titanic after it has sideswiped an iceberg, which is how I
felt, like an ill-fated ocean liner… If only I had set sail a day later… or
earlier, if only I had eggs for breakfast instead of pancakes, if only I hadn’t
jaywalked when I was nine, if only I had done one single thing in my life
differently, perhaps Nicole and I wouldn’t be preparing for a crash landing.

The social worker called and said that the doctors wanted to have
a meeting with me. “For what,” I asked, “and who’s going to be there?”  When
she started calling off the names of those who would attend, it occurred to me
that this might be less of a meeting and more of a trial… like Salem. 

I imagined that we would go into a conference room and sit at a
long table. I would sit on one side, and all of them would sit on the other. 
They would tell me that Nicole was a hopeless case, and that I needed to make a
decision. And I would tell them that Nicole got her first tooth when she was
only two months old. 

They would tell me that she was never going to wake up. And I
would explain how she took her first steps on July 31, 1981, when she was only
seven months old.  I remember because it was my birthday. 

They would tell me how frustrating I was making it for them by not
signing a DNR. And I would ask them if I could perform some of Nicole’s
one-person skits.  And before anyone could slam a palm on the table and say -
“Enough with this foolishness!” - I would stand up and do Nicole’s
impersonation of a down-hill skier avoiding a tree. 

If that didn’t leave them in stitches, I would give Nicole’s
rendition of a paralyzed rabbit. 

Next, I would do her impersonation of what she called, “A White
Boss Firing his Black Employee after Giving Said Employee Ample Opportunity to
get His Shit Together.” 

I would save the best for last.  No one in his or her right mind
could sit through Nicole’s impersonation of a drunken ballerina.

I asked the social worker for an agenda.  “Tell me exactly what
the meeting will be about, and I’ll tell you if I can make it,” I said.  She
called back to say that the request for the meeting had been withdrawn.

On December 22, Nicole’s birthday, I took her pink top with the
rhinestones to the hospital with me. Of course, I couldn’t put it on her with
all the tubes and IVs, but I’d lay it across her chest just the same. I
had some birthday cards that friends and family had sent to the house. I’d read
those to her, I’d sing Happy Birthday in her ear, but beyond this, what more
could I do in a hospital ICU?

When I approached her room, the two glass doors were shut and the
curtains were pulled. I imagined they were inside tending to her. There was a
sheet of paper taped to the door that read, “Happy Birthday, Nicole!” And this
made me smile.

I eased open the door and peeked around the curtain. The room was
decorated to the hilt. There were streamers and confetti and even balloons
taped to the bulletin board. The IV polls were draped with ribbons. These
wonderful people knew that in all likelihood this would be Nicole’s last
birthday, and they had taken the time to make this heartfelt gesture, not for
Nicole’s benefit, but for mine. I was keenly aware of this and humbled to
tears.