The Truth About Butterflies: A Memoir

by Nancy Stephan

  “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.

  I sang happy birthday, and I read her, her birthday cards. The card from her paternal grandmother had a purple octopus on the front, a card for a little girl. Inside she’d written, “My beautiful granddaughter, WAKE UP!” And when I read that to Nicole, I paused to look at her, to see if she’d do as she was told. In that moment, I was filled with desperation. Since December 6 when this whole thing started, I had shown nothing but strength and resolve. I had only spoken positive things. Every word that had come out of my mouth was life. But right then, desperation consumed me. With the door still closed and the curtain still pulled, I lay my head next to hers on the pillow, and I wept and pleaded for her to come back to me… to please come back to
me.

  If a girl is going to come back to her mother, surely her birthday would be a fine day to do it. If not on her birthday, then on Christmas, just three short days away. What better Christmas gift for a mother than that her daughter should come back to her on Christmas morning. And if not on Christmas, then on New Year’s. There’s so much symbolism in coming back to your mother on New Year’s Day; after all, it’s a day of new beginnings. All of this would be so simple if she’d just open her eyes and look at me. If she looked into my eyes for only one second, I would know whether or not my “30 days” was long enough, or if I should hold out for Valentine’s Day. What could be more glorious than a girl coming back to her mother on the rosy-red day of love? But Nicole didn’t open her eyes and look at me on her birthday, or Christmas, or New Year’s, so I kept my word. The “30 days” had dwindled down to 5. The next day I would visit the first hospice center.

  As I drove up the long, secluded road that led to the first hospice on my list, I thought what person is able to die peacefully in a place surrounded by these ridiculous pine trees? When I reached the parking lot, I sat for a while looking at the ridiculous cars and wondering about the ridiculous people who drove them. I walked in, and there was no one to greet me, no one in sight; it was like a ghost town. It was obvious that I couldn’t trust these people to look after Nicole. But before I could walk out, some ridiculous woman walked over and asked if she could help me. “I’d like to see the facility.”

  “Sure,” she said. “I’d be happy to give you a tour. Are you considering hospice for a parent?”

  “No.”

  And she waited for me to give her more details, but I didn’t, and so there was an awkward moment of silence before she took me to see the facility. But I had already decided that this was not the place for Nicole; it was too quiet, and the lighting was all wrong, and the colors were off, and the bedspreads were ridiculous… and those ridiculous pine trees flanking the road.

  Before I left, the lady handed me a brochure. On the front was a graying woman with a loving arm wrapped around her gray-haired mother, who obviously had lived a long, full life, and now, thanks to her caring daughter, was going to die with dignity in a hospice. This brochure had nothing to do with Nicole and me, so as soon as I walked out the door, I dropped it in the trash.

  The next day, I visited the second hospice center on my list, which was newly built and quite a long distance from my house. Throughout the day, I kept putting the visit off, and by the time I did arrive, it was already dark. When I walked in, it was as if I’d walked into someone’s living room. There were two or three nurses at the desk, and one of them came around and said, “Hi honey, how can I help you?” I’d walked in with the intention of giving my stiff-upper-lip answer of I’d like to see the facility, but what came out was, “I need a place for my daughter.”

  With that, the other nurses came around to where we were, and they led me to an armchair. “Honey, what happened?” She asked. And I told them, tears aplenty, about Nicole. And then the nurse said something that no other nurse, or doctor, had said to me before. She said, “This is absolutely horrible; it’s unthinkable!” And she was right. Of course, there was truth in what the other doctors and nurses had said too: This is the reality… You need to accept this… She’s not going to wake up… You’re being selfish…, but none mentioned the bare-bones truth, that a mother burying her child is horrible and unthinkable no matter what else.

  As I sat surrounded by these women, who were all touching me in some way, I knew this is where Nicole would come. I left without brochures and without a tour of the facility, but indeed feeling like so much of my burden had been stripped away.

  When I made it back to the hospital that night, I told the nurse who was caring for Nicole that I had made a decision. By the next morning, January 7, I had been contacted by the social worker, the chaplain, and the hospice liaison. On the following day, January 8 at 10 a.m., Nicole would move to hospice.

  During that first week of January, Georgia hiker Meredith Emerson had gone missing while hiking in the mountains with her dog Ella. I followed the case closely, and it seemed as if I now had two situations to deal with. But it also seemed obvious to me that not both girls would die; that’s not how the math works. And since I was moving Nicole to hospice, it stood to reason that Meredith would be found alive. When they found Meredith’s body the day before Nicole moved to hospice, I knew that reason itself, like every other thing in my life, was no longer reasonable.

  Nicole lasted three days in hospice. Seconds before she stepped out of the cocoon of her body, she opened her eyes; then she closed them and was gone. On the 14th, at 2 p.m., she was laid to rest, and for the first time since I was 14, I’d continue my journey without her.

  Part 3

  2008—2010

  What the caterpillar calls the end of the world, the master calls a butterfly.

  ~Richard Bach

  Chapter 22

  Two months after Nicole died, Dr. Anedi Akwari called to see what my plans were for the Easter holiday.

  “Go to the cemetery, I guess; put down some flowers.”

  “Why not come to church with me and my family?” She asked

  I didn’t immediately answer. I had gone to church a few weeks after Nicole died and was so overcome with emotion that I left within 10 minutes. “You know,” she continued, “what better way to celebrate Nicole’s resurrection than in a place for the living, instead of a place for the dead.”

  I had to say yes because I couldn’t keep saying no. She’d encouraged me to get together for coffee. I couldn’t do it. She’d invited me to her house for a Super Bowl party. “There’ll be lots of people here you don’t know, but you’ll still have fun. Please come.” I declined. She’d kept in constant contact through calls and email, even phoning to say that she’d signed Nicole’s death certificate and I could go downtown and pick up a copy for my records. That was in February; I waited until May to pick it up.

  Picking up a death certificate seemed like an occasion I should dress for, a pair of heels at least. I took the day off work and drove a couple counties north to the courthouse. “I’d like to pick up a death certificate,” I said to the woman behind the security window.

  “Fill this out and sign it. It’ll be $25.”

  She slid a form under the glass. I filled in my personal information along with my relationship to Nicole, whom the form referred to as the Decedent.

  I slid her the money; she slid me the certificate. This sacred occasion of picking up the death certificate was nothing more than a transaction, like paying the light bill. It was definitely not worthy of heels.

  I waited until I reached the car to look at the certificate. I read it top to bottom. I examined every word for errors, for any reason I could stand up and shout, “Stop everything! There’s been a mistake.” But there was nothing. The cause of death was listed under Part I, Section 23 a. Immediate Cause: Anoxic Encephalopathy, b. Due to, or as a consequence of: Renal Failure. There were five signatures.

  I told Anedi to email me the church’s address, and I’d go online for directions. The next morning, I struck out for the church. What should’ve been a 45 minute drive turned into a two-hour fiasco. After winding my way through narrow hills that bordered a robust river, I ended at an old, weathered shed, in front of which was a rusted motor boat. Just as well, I thought. I found my way back to the main road and returned home. I decided I could use the day to do some more packing for the move.

  Not making any headway in packing up Nicole’s room, I turned my attention to the attic. It’s where I’d find the box that would change me in ways I couldn’t have imagined.

  When I unsealed the box, I found two shoe boxes inside. I removed them. Underneath were several notebooks; I removed them also. Loose in the very bottom of the box were Nicole’s ROTC insignia, name tag and uniform neck tab, a name badge from one of her jobs, a napkin and pencil from her 8th grade dance, and a baggie with bits of cake crumbs
and 16 birthday candles. I gathered it all and set it aside.

  I opened one of the shoe boxes and inside was a thick stack of cards and letters. I wondered with whom she might’ve been so enamored, but as I removed the stack from the box and began thumbing through the cards, I saw that all of them were from me: birthday cards, Valentine’s Day, Easter, Christmas, letters, I Love You notes, every card and letter I’d ever given her over the years she must’ve saved.

  In disbelief, I read every single one, many of which I barely remember writing. In a card dated August 1996, I’d written, “This card is so pretty, I wanted to get it for you. Every time you look at it you will think of how much I love you. You’re my angel, much more beautiful than the one on the front of this card.”

  In a 1997 Mother’s Day card, I’d written, “You probably think it’s strange for me to give you a Mother’s Day card, but if it weren’t for you I wouldn’t be able to celebrate this day. I’m glad to be your mother and wouldn’t trade you for anything. Being your mother has taught me faith and courage. I really do believe you are worth your weight in gold.”

  And in her 18th birthday card, I’d written, “For your 18th birthday, I chose emerald earrings. In Revelations 4, the rainbow that surrounded the throne of God John said was like unto an emerald. That’s why I chose them for this special birthday.”

  During our separation when Nicole had been diagnosed with diabetes, I wrote to her frequently. Those letters were stacked together separately. In one of the letters, I had taken a blank sheet of paper and plastered it with eight lipstick kisses. I forgot I’d even made the kiss page, but there it was in the box. A kiss from the upper right corner of the page had been torn away, and I knew that Nicole had removed it to keep with her at all times, a portable kiss stashed in the hip pocket of her jeans.