Random Rambling: The Decision

I don’t remember much about the day I made the decision to torture my only sister until she died. I know it was December, right after Christmas. I know it was 1988. I know it was before classes started back after break. I don’t remember exactly what the doctor who was consulting with us said because all I could hear was the “ding…ding…ding…” of one of the elevators opening and closing, DING, open and close DING. It went on and on. It was driving me crazy.  I was operating on 3 hours of sleep. None of us had even left the hospital for more than a few hours since my sister had been rushed there earlier in the week.

We had known for about a year that something was wrong with Amy. Even though she was classified as being profoundly mentally retarded, she was healthy She always defied the odds. Doctors said she’d never walk but she learned to walk when she was 3. They said she’d never speak but she could say: eat, dada, she could hum the first bar of her favorite song, “This Old Man,” and she could say my name, Nikki. That’s it. It was enough for me.

During the late winter of ’88 my parents and I began to suspect something was wrong with Amy. She started having seizures – an affliction many children with her disabilities suffered, but Amy never did.  She had the first one at school. Not a big one. It was as if she was zoning out while her eyes would jerk quickly from side to side. Over the next few weeks she had more. They didn’t last long, they weren’t violent, but they were concerning. We took her to a pediatric neurologist at The University of Iowa, which is where I was going to start college as a freshman in the fall. This particular doctor was known to be one of the best in the country. The appointment lasted no longer than an hour. He declared that at 15 she was now beginning puberty and very likely these seizures were caused by hormones and would just be a part of her life now. I remember he said we were just lucky she hadn’t had them her whole life. He sent us home with a prescription.

Over the next few months, Amy’s seizures increased in frequency and lasted longer. One day that spring, she was in her room jumping on her small trampoline with a bar she held onto that had long been her favorite activity. We heard a crash and my mom and I both jumped up from the living room couch and ran into see what happened. Amy rarely fell. She was laying half on the trampoline and half on the floor. She was having a seizure. After that one, she never walked again. We took her back to the doctor with the glowing reputation and again, he just shrugged his shoulders and with a sad face told us again that the seizures were due to puberty and he didn’t know if she’d ever walk again.

She was fitted with a wheelchair, grew more sick by the day and by the time I started college in the fall, Amy had to move, as well.. After nearly 16 years of taking care of Amy at home my parents had to admit that they could no longer do it on their own. It was with heavy, heavy hearts that we moved her to a care facility in Dubuque, Iowa just a few weeks before I left to start my freshman year of college. My parents traveled the 2 hours to and from Dubuque every other day to see Amy. I went as much as I could – which wasn’t enough, but I saw her at least twice a month. 

My first college finals kept me away from Amy for most of December. We had her home for Thanksgiving and things almost felt normal. We tried so hard to make it feel like past years, but underneath the façade we were all so sad. My parents and I didn’t talk about it though, each of us were so careful not to burst the ever-so fragile bubble that we were trying to live within. So while I blamed finals for being the reason I didn’t go see Amy in December, part of why I didn’t go see her was that it was just too sad. I was avoiding her. And besides, I kept telling myself, I’d be home with her over the holiday break.

To say my first semester of college was a disaster is an understatement. I believe my GPA was 1.92, a D+ average. My parents hadn’t been overly concerned with my grades because of everything that was going on with Amy – but I was still scared shitless for them to see my first report card. I felt bad that I was going to add to their list of things to worry about. I was drinking a lot and pretty self-absorbed by the end of the semester so I wasn’t at all prepared for what I found when I got home and saw Amy for the first time since Thanksgiving. She looked like a skeleton. She had always been petite – but this was different. This was SICK. She looked like someone who was dying.

My parents had been seeing Amy more often in December, so her appearance wasn’t as shocking to them. I, however, couldn’t hide my fear and frustration. I let Christmas Day go on without saying anything but the next morning I got up early with my mom and told her with a shaking voice, “Mom, she’s dying. Just look at her. She looks like a skeleton!” I remember feeling so much anxiety and I was afraid my mom wouldn’t hear me but without even taking her eyes off of Amy, who she was feeding, she said, “I know. I wanted to see what you thought, but I agree. I’m calling her doctor in Dubuque after dad takes her back this afternoon.” So while my dad drove Amy back to her new home, my mom called her doctor. I stood around the corner to eavesdrop. There was some initial chitchat reminding the doctor who she was (he remembered) and who my sister was (he knew) and it quickly escalated into her saying in a calm but slightly raised voice, “My daughter is dying before our eyes and no one will do anything about it!”

Since no doctor had shown much interest in what was going on with my sister I think my mom was shocked when he immediately agreed with her and it seemed ike he had already been thinking about her. “Has Amy had a CAT scan?” he asked. “No,” my mom replied. Her doctor was incredulous, “I don’t understand that. When all of Amy’s issues are because of her brain it shocks me that no one has ever performed a CAT scan on her.” My mom agreed and he told her to meet him at the hospital in Dubuque the next morning.

My parents got up early to drive to the hospital in Dubuque. They told me to stay home and they would call and let me know what was happening. Around 9:30 that morning I was surprised to see my mom’s best friend pulling into our driveway. She walked into our house with a look on her face that I still can’t shake. She was smiling and she tried her hardest to use the same singsong voice she used when she was goofing around with me, but her eyes told a different story. I could tell she had been crying and that she was going to cry again. I immediately started wailing. “What? What? Just tell me!”

“Oh honey, they found a tumor. Your mom said it’s the size of a small grapefruit. Amy is on her way to Iowa City and we’re going to meet them there.”

The drive there is gone for me. I have no memory of it. The next thing I remember is seeing my parents sitting together, holding onto each other in a way I had never witnessed before. My first thought was that she’d already died. When they looked up and saw me, my mom started crying. The first thing she said was, “We don’t know much yet. The doctors here told us that if we hadn’t gotten her here today, she might not have lived another day. They’re in the operating room with her right now putting a shunt into the base of her skull that will run a tube into her stomach.  That will release the pressure against her brain being caused by fluid build up and give the doctors time to figure out what they’re dealing with.”

“Does she have cancer?” I asked

“We don’t know. We don’t know anything,” my dad said in a monotone voice.

I sat down next to them them and started waiting. A skill we’d come to finely hone. I wasn’t quite 19 yet and I’d never really ever been in a hospital, let alone the Neurology ICU of a huge hospital. It seemed really scary and deadly official. When I had told my mom just two days earlier that Amy looked like a skeleton to me and I thought she was dying, I wondered afterward if I’d been melodramatic. Based on where we found ourselves that afternoon, I realized I hadn’t been and that likely my speaking up had saved her life. All of the sudden, I felt a lot more grown up.

A few hours later a tired group of doctors came to see us. She would be out of recovery soon. The shunt had been placed properly and was working correctly. Now we had time to begin to assess what, exactly, was wrong with her.  They left without giving us anything more. Later, they got Amy situated in a room and my mom declared that she would be staying at the hospital. I had somehow managed to pack up everything I had brought home for break with me (when did I DO that?) so it was easy for me to just go spend the night at my dorm. My dad got a hotel room near the hospital. I told him he could sleep in my dorm, but he already knew this wasn’t going to be a short stay and he told me he was going to find a place where they could stay awhile. I spent a very lonely night in a vacant dormitory with no company.  I didn’t have any way to communicate with anyone – there were no smart phones in 1988. I couldn’t text my mom to see how they were doing. I couldn’t text anyone! I just lay down in my dark, quiet room with my clothes on and cried myself to sleep.

It’s weird how quickly life can change and how you can adapt to a new routine. My life went from being all about classes and parties to a single focus: my sister in the hospital.  On her third day in the hospital Amy’s doctors finally felt comfortable giving us a choice in how we would proceed with her treatment. While they felt as though her tumor was malignant, there was a chance it wasn’t. In order to find out for sure they would have to open up her skull and de-bulk the tumor.  Because of her disabilities and her frail condition – doing an exploratory surgery wasn’t an option for us.  If the tumor were malignant, even if they operated, she would eventually die from it. We had the choice to operate or do nothing. If we did nothing, they would make her as comfortable as they possibly could until she passed away.

It was hard to focus on what the doctor was saying.  How could this be happening? How could we possibly make this choice? We were sitting in a small room right by the elevators and not only was my head spinning from the enormous weight just placed on our shoulders, but my ears were ringing from the constant “ding…ding…. ding…” of the elevator doors opening and closing over and over again. It was broken. I was so wrapped up in what was going through my mind that I barely heard my mom say, “We have to let her go.” She was crying but resolute. “You agree, don’t you?” she asked my dad.

“No, I don’t. I think if there’s a chance it’s not malignant – even if it’s a small chance – we have to take it. What if it’s not and we let her die? I could never live with myself.” He said.

“Larry, it’s malignant. It’s the size of a grapefruit and growing – you heard the doctor. If we allow them to operate on her – think of the pain we’re putting her though. I can’t do that to her. She’s been through enough. We have to let her go,” my mom said.

“I just…I can’t walk away from the chance it’s not malignant and that she could live if we get rid of the tumor,” my dad was just as certain of his decision.

Before I knew it all eyes were on me. “Nikki, what do you think we should do?” What?! Did they really just ask me what I thought we should do? I don’t know! I’m just a kid! And I’m not even sure I’ve been following this conversation because all I can focus on the “ding…ding…ding” of the elevator. And just as I’m about to tell them I couldn’t make that decision, I think of Amy with her favorite toy. A bell. We always joked that we should get her a job with The Salvation Army at Christmastime because she loved to ring her bell. It was a sound we were so used to at our house that I didn’t even hear it anymore. But here – in this moment it’s all I could hear. “Ding…ding…ding.” We called Amy “the bell ringer,” and now this bell is ringing and it won’t stop.

“We have to operate to see what it is,” I burst out. “That elevator bell is a sign, I think! We can’t just let her go. We have to fight for her.”

Both of their shoulders slumped. My dad breathed a sigh of relief but my mom stood up and looked at the two of us as if we had offended her, “Ok fine." In my memory she yelled at us (because she was upset) and left the room. I'm not sure that's what happened though. All I know is in my mind, I cast the deciding vote. I know my mom was upset and I wanted to scream, “I’m just a kid! I don’t know! Don’t ask me!” But it was too late. Like it or not, the decision was made and I made felt like I made it. She was scheduled for surgery the next day.

I don’t think my parents spoke to each other the day of the surgery. In 1988 they still had  “smoking” and “non smoking” waiting rooms.  I spent the day in the smoking waiting room. I’m sure I easily smoked a pack of cigarettes while she endured the hours-long surgery.  When they were done, she was in recovery for a while and then they moved her back to her room. We waited some more until finally a team of weary doctors entered the room.

“We are so sorry to tell you that the tumor has completely penetrated Amy’s brain. While we took out as much as we could, there was no way for us to remove it completely without removing most of her brain. We can say with 99% certainty that this tumor is malignant…” The words that followed were “blah blah blah” to me. Amy was going to die. The doctors left the room as we all sat there staring at my sister, who was asleep.

No one spoke. I remember the three of us standing by Amy’s bedside. My mom quietly left the room. I stared at the doorframe she just walked through. My eyes then shifted to my dad and then onto my sister. There, she lay still, sleeping. With the new, grotesque scar outlining where they had removed her skull earlier that morning. She looked more like Frankenstein than Amy. Oh my God, what did I do?