My parents finally arrived. I have no idea how long it took them to get to the hospital, but with the drive, it was probably an hour or so.
I felt Mom’s dry, scratchy hands on my face. “How’s my little Mary Sue?” she asked as she stroked the hair around my face. My middle name is Suzanne, but when I was a kid, everybody called me Mary Sue. Now that I was in high school, only my mom and some of the moms from childhood called me that.
“I’m OK,” I said quietly. I had been lightly sleeping. I was on my second pint of blood.
Dad walked in and immediately turned on the bright overhead lights. “You OK?” he asked loudly. I smiled and nodded.
“Patrick! Shhh!” my mom said, scolding him and motioning him to turn the bright light off.
Just to my left about three feet was the door to the bathroom. Juvenile wallpaper decorated the room in the pediatrics department. In front of me was a grainy TV that hung from the ceiling and had cable TV- a luxury considering we only had the local channels at home.
The remote was like a radio. It had one button for the TV and one to call the nurse. You could turn it on, go forward through the channels, then turn it off. That was annoying, and so was the sound. There wasn’t closed captioning and my dad couldn’t hear a thing.
This is the version you'd find today... it actually lets you turn the channels up or down!
So there we were. The three of us just sat there as I was given blood. We just sort of stared at the TV not saying anything.
I was still exhausted from losing so much blood, but with every blood transfusion, I was slowly feeling the return of energy.
My brain started working, and I started considering my plight. And I started to wonder why my parents were content with not knowing what was happening.
As I look back, I think Pops might have been a little embarrassed to ask questions. He couldn’t hear well, and often waited for Mom or one the kids to explain what he missed. He didn’t want to seem ignorant, either. But none of us knew a damn thing… not even the doctors.
Mom grew up in the 1940s and 1950s. Like most good Catholics, she didn’t question authority. Over time I’ve learned that you don’t have to be a good Catholic to feel like the doctor is omniscient and shouldn’t be questioned. Most people never question a doctor or nurse. It’s called a second opinion because that’s what it is… an opinion. But for some reason, many of us think a doctor is always correct when making a diagnosis or deciding on how to treat a certain condition.
Under the TV was a small, wide table- it kind of looked like a coffee table. That’s where the Christmas tree decoration stood. And in front of the table was Mom’s purse and an overnight bag, though I thought they had just brought me some extra stuff- like magazines or nail polish or something.
“Is this blood transfusion safe?” Mom wondered out loud.
“Mom, they test for AIDS and all kinds of diseases when you give blood,” I said. “The Red Cross ends up throwing away a lot of blood because they are very careful.”
“I’m so worried about you,” Mom said.
“Thanks, Mom.”
“Are you OK? I just feel so terrible,” Mom said. It took my mom a long time to accept that having three kids with Crohn’s Disease wasn’t her fault (two brothers were diagnosed soon after I was).
“I’m fine. This blood is a little uncomfortable.” It was. After hours of blood pumping into me from the same site near my shoulder, my whole arm ached- right down to the fingers.
I fiddled with the tubing, but it didn’t help. When I looked back up at my parents, Mom was crying and Dad had his arm around her while giving me little smile.
What’s with the drama, I wondered.
My mom suddenly sat up straight and wiped her tears. “I’m going to stay. Mamma’s going to stay with you tonight so you don’t have to be scared,” she said to me.
No. No, no, no. Please, God, no.
“No, you don’t have to,” I said. “I’ll fall asleep fast. Why don’t you just come back really early in the morning?” I asked… one suggestion after another. “You’ll be bored. Wouldn’t you rather go home, shower, get some sleep and then come back?”
Nope. She felt guilty for going to that damn “party” while I lost all that blood. She was going to make up for it by sleeping on a cot next to her daughter. As she turned toward her overnight bag, I realized not only did they not bring a book or nail polish, I had to endure a sleepover with my worried mom. I pleaded with my eyes and shook my head violently no to my dad. I even mouthed, “NO!” He looked down and shook his head. His body language said, “There’s nothing I can do about it. The woman’s got her mind made up, and I don’t know what else to do.”
“Well, you better go. The kids are probably tearing the place apart,” Mom said to Dad.
I was angry with my dad for not saying anything, but I was upset that I didn’t say anything, either. I was so sick of just accepting the decisions of all the adults around me.
My stomach hurt so much. I lost a LOT of blood, and we didn’t know why. I was doing a good job of reading fashion magazines and watching TV to get my mind off things. We were only allowed to watch shows like “The Cosby Show” or “Little House on the Prairie.” We watched the news and a little PBS, but that was it. Even with its grainy picture and terrible sound, cable was the best thing about that hospital.
The nurses had to be a close second, though. Pediatrics nurses always talk in such soothing tones, even to a teenager and her parents. Every one of them was sweet. Some were really, really sweet. I thanked God for those nurses that night.
As my mom struggled to unfold her cot and get ready for bed, she was slowly losing it. She was upset with herself, with my dad, with me, with an interrupted Christmas, with doctors who didn’t know anything, with that stupid cot… I could feel a storm brewing.
I was right. First she was upset because she couldn’t sleep with the TV on. So I turned it off. One or two complaints launched a litany of troubles. Her twin sister is awful. Her brother is awful. Her mother is awful. She does everything for everybody. Nobody does anything for her.
My night nurse checked in on us more than once. Mom said in a very upset, but trying-to-be sweet voice, “Oh yes, it’s just been a difficult day.”
“Oh sure, I understand,” said the nurse. And she was gone.
Dammit! I was hoping she'd say something useful. “We’ve got sick kids and babies so shut up, you crazy lady!!”
Man, that was one of the longest nights of my life. You know, from the time those nurses were calling my parents to the time my mom was bitching in the dark to the time I got to sleep, I bet only three hours elapsed. It felt like two separate days full of memories. The anger, outrage, fear and helplessness It was all just festering inside of me. I was too weak to get into a fight because I was too weak to win.
I eventually fell asleep and woke up to a shooting pain in my arm as a third pint of blood was making its way through the IV and into a vein.
It was around 8:30a.m. on the 29th. I woke up to see Mom scurrying around the cot, folding a shirt, putting a comb through her hair, putting on lipstick…. the normal things a mother does when her daughter is the one suffering on the other side of the room.
I told this story to a friend of mine once. She was my age, but she had two children. She told me that when I become a mom some day, I will be able to see everything from Mom’s point of view. My friend said as badly as I hurt physically was how badly my mom hurt emotionally. I don’t have children yet, but as I’ve grown older and become a wife, I’ve gained some perspective and understanding.
At the time, I hated her. It was easy to be so angry with her. I was going on day four of dealing with pain and no answers, but who was I supposed to be angry with for that? It was much easier to hate Mom.
I was sick of not having answers. I was sick of letting the doctor not giving even a guess as to what was happening. I don’t know if it was my mom, my own frustrations, a boost in energy from replenishing my blood supply or the realization the night before that I had to start sticking up for myself, but when the doctor came into the room that morning, I was not the same patient I was the day before.
“Good morning,” he said while flipping through the pages of my ever-growing chart. “How are we doing today?”
“My arm hurts.”
He didn’t say anything.
“From all the blood…”
Nothing.
“Maybe we can move this IV to another vein and give this arm a rest?”
“Sure, we could do that,” the doc said without looking up. He paused, closed the chart and looked at my mom. “We didn’t notice anything abnormal on yesterday’s x-ray. Once we can finally see the results of today’s tests, we’ll have a good understanding as to what’s causing all of this.”
My mom just gave him a worried look and nodded.
I broke my silence. From that moment on, I’d never be silent again.
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