Chapter Ten: Homecoming
The day I returned home after two weeks of recuperating from my second kidney transplant was picture perfect. A blue blanket sky. Colorful flowers and green blades of grass standing proud and tall. Sunshine that was warm and crisp on my face. Air that tasted so fresh and delicious that I could not stop inhaling.
But when our small forest green Ford finally lurched up and down on the bricked pavement of our home, all the beautiful blends of nature and colors seemed to come to a complete standstill. The red brick house loomed over me, monstrously intimidating. A pitted fear twined with excitement formed in the depths of my stomach along with my heart pounding in my ears. This was it. I was starting my brand new life. But, what laid ahead?
I quickly found out as soon as the front porch door was thrown open by my two aunts.
My Dad’s two sisters came to his assistance to take care of and nurse me back to tip top form. My Dad had an older sister by the name of **Audrey who I visited in Canada in the summers after my parents divorced. She was the disciplinarian who would not take crap from me (or anyone). When I visited her, she gave me chores that ranged from mopping floors to watering her plants, but she also gave me her unending love and nurturing with her spicy spaghetti, crispy salmon, and choosing the most fashionable clothes for me. My Dad’s younger sister was **Terry. She was the fun and cheerful one who always played games with me and made me laugh until I could not breathe anymore. Together, they were the perfect pair and balance in helping me to regain my strength again and keep my kidneys in top form. I was scared what my aunts had in store for me, but I was also incredibly grateful. I knew my Father could not take care of me all on his own when he had his own responsibilities and that family was the only people in the end that could be depended on when times were tough. My aunts were proof of that as they gazed at me with concerned, shining, happy, and militant eyes all in one. Right away, they got to work with one too many surprises.
The major surprise was I was not allowed into my cozy and sanctuary bedroom that had transformed from “The Little Mermaid” bed sheets and Barbie dolls to teenager-postered heart throbs as I went from childhood innocence to the cusp of teenager world. My bedroom was on the second floor and I was not physically strong and able enough to even go up one step without someone or something to hold on to, much less a flight of stairs. I had a new and temporary bedroom right in the living room where my family members could keep a constant eye on me. I cringed at the lack of privacy, but also welcomed the constant companionship. My aunts covered the cream-colored couch with my stuffed animals and extra blankets. The coffee table that was once filled with magazines and fake flowers was replaced by tall and short medication bottles, a huge pillbox, a pill cutter that sliced the fat horse pills I had to swallow in half, a medication chart of when to take certain medications and how much, and unending schedules. A schedule for when or what time to take my medication and how much of each. A schedule of physical therapy. A schedule of when the home care nurse was going to come to see me to measure my blood pressure. A schedule of when the private school tutor was going to visit me and me completing my homework assignments on time. As a side note, I was not to return back to school for the rest of the school year, but that did not mean that I was let off the hook with no school work at all. A timer to remind me to urinate every 90 minutes even if I did not feel that I had to urinate because I had to keep reminding my kidneys to work, work, work. To keep my new kidneys, I had to fight at it in ways I never could have guessed. To start my new life was more work and effort than I ever imagined.
Suddenly, with all the schedules and constant medication reminders, being back at home was strange, scary, and surreal to me. Although all around me at home was the same from the smoky and spicy foreign Chinese scent of my Father’s cooking, twisted green bamboo plants, and Buddha statues that stared back in me in complete serenity, and the lilting Cantonese and Mandarin languages bouncing off the walls from my aunts and Father, I did not feel like I was home. Home was a place to kick back, relax, and be positively lazy. This home was like boot camp to keep my kidneys. I thought the biggest challenge would be getting my second kidney transplant. Now I knew that the biggest challenge would be keeping my new kidneys.
For the first few days when I returned back home, all I wanted to do was sleep. It was partly because I was lazy and did not want to face the reality of all this work. It was mostly because I just underwent major surgery and my nephrologist said that sleep was the normal reaction and a part of the healing process. My aunts would not have it, nor would my Father. They fed me touch love at full force.
Auntie Audrey pointed at me and then at my medication schedule with her perfectly manicured finger: “Take your medicine. We take a walk together and do therapy together. Don’t be lazy. You have a new life, so live it.”
My Auntie Audrey quickly befriended my home care nurse who taught her how to measure my blood pressure and understand all my medications. She also became fast friends with the physical therapist who forced me to slowly walk back and forth and up and down a step at a time. In the beginning, each step was still like pins and needles to the bruised transplanted area, but with time, each step I made up and down became a triumph and a reminder that I was going to fully get better.
My Auntie Terry reminded me while we watched soap operas and tawdry talk shows: “Did you go to the bathroom yet? I think 90 minutes is up. Go take a pee while there is a commercial break and then we can play this card game together. Maybe we can even play mahjong together. Oh, wait, but we have to do your school work first.” My Auntie Terry was the one who befriended the private school tutor and did homework assignments with me, particularly the math assignments that always gave me a headache.
When my Father returned home after a long day at work, he would spoil me with his infamous cooking dishes. There were too many foods and dishes that I could not eat prior to my second kidney transplant and particularly dairy and high sodium-content foods. Suddenly, my appetite was ravenous and I was greedy for all that I could not have and now could have. Ice cream never tasted so sweet and creamy. My Dad’s infamous roasted Chinese spare ribs tantalized my taste buds once again. My love for food was rekindled and we engaged in a love affair of me licking my lips and patting my belly with happiness. I was constantly reminded and cautioned by my nephrologist that this ravenous appetite was a side effect to the Prednisone and that I had to still carefully monitor what I ate. The Prednisone was an all-mighty and powerful drug that I was weak to and tried to overcome. My love-hate relationship with Prednisone started right then and there: Love for it keeping my kidney; Hate for making me want to eat everything in sight.
When night time fell, my Dad and aunts would munch on traditional Chinese watermelon seeds and chatter in Cantonese and Mandarin. I would listen to them and the TV, feeling lonely for companionship around my age. When it was time to go to sleep, my Father sat on the couch with me. We never said anything. We just enjoyed each other’s simple company and pleasures like that. Little things like that were what I treasured and I could only feel extraordinarily grateful once again for my second kidney transplant for giving me all this time and all those moments with my Father and family again.
Each and every day soon became a boring routine. I memorized my medication reminder chart and methodically popped colored pills in my mouth at 10AM and 8PM, maintained my studies, and turned to my aunts for company to play the Chinese game mahjong or card games. As each day went by, I soon ached for the physical contact of my friends or just anyone around my age and just to go outside for more than just a car ride to see my nephrologist for an appointment or to get my bloodwork drawn. I barely ever saw any of my friends face-to-face post-transplant because they went to school that was infested with germs. Coming into contact with my friends was equivalent to coming into contact with germs, which could lead to an infection and the possible demise of my kidneys. Apparently, it was more than fine to keep in contact with my Dad’s relatives because they were not in as much contact with the evil world of germs and bacteria as much as students that attended a public school.
My ONLY outdoor visits were to meet with the nephrologist and have blood work done on a weekly basis. As wickedly sick and strange as it may seem, I was excited about these visits because it was the only time I breathed in fresh air, felt the heat of the sun glowering on my body, and watched everything and everyone as though I were a baby seeing and experiencing everything for the first time. The exuberance dissipated when the prick of the needle went in me. Replaced was a fear in the pit of my stomach that my creatinine level increased and that I’d wind up in the hospital again with failed and wasted kidneys possibly rotting away in my body. Each time my Father and I saw my nephrologist, we smiled brightly and declared that everything was okay—and it was more than okay; I never felt more healthy or alive. Each time I left the laboratory, blacks and blues appeared all over me. Each time I bid farewell to my nephrologist, I hoped that I would not have to see him again so soon and that these visits could taper off slowly and surely and I could go outside for ANYTHING a part from my health.
Into the sizzling and sweat-filled heat of the June month, my craving to go outdoors and be around people became even bigger. I was about to be swallowed alive by this isolation and complete lack of human contact, especially around people my age. My aunts and I sometimes ventured for a walk up and down the drive way and up and down the street as I gained strength from my second kidney transplant. I inhaled everything around me during those small walks. The world never looked so beautiful. But, I dare say that I missed school with the noisy hallways and endless chatter and my variety of classmates that ranged from jocks to cheerleaders. As liberating as it was to return to the comforts of my home, that trapped feeling in the hospital still remained at home where my life revolved around my health and nothing seemingly more or less. I spent many minutes and hours imagining what it would be like to return to school and to see all my classmates again. Would they recognize this new me? Would I still be the shy and anti-social girl that focused more so on studies rather than socializing? When I was not invaded by these images, I continued to spend my afternoons glued to the TV as my outlet to the outside world, meet with my tutor, nurse, and/or therapist. When I was not wrapped up in my minimal medical and academic responsibilities, I spent too much of my time daydreaming and observing. When the yellow school bus dropped off the students at the end of my street, my ears perked up to the squealed sounds of the tires. I rushed to the window and saw the students tumble out of the school bus. I stared at the students with their carefree ways from laughing aloud to whispering secret jokes and with their backpacks tilting them from the heavy books. I was jealous, and my chest ached and hurt when watching them. I pressed my hands to the window and watched and yearned for that normalness. Eventually, I turned away, dejected that it was still not yet fully my time to experience that life.
I would often catch my Auntie Audrey and Auntie Terry exchange knowing looks at one another to my sadness over my loneliness. They would say to me: “Don’t look out that window anymore. It will just make you feel bad. Come over here to watch TV or we play another game.”
I was tired of TV and games. I just wanted human contact. When my aunts ordered me to stop looking out the window, I did not say anything. Instead, I then often ended up staring at our Japanese maple tree out in the front yard and filled my journals with countless entries of how confused I felt. On one hand, I was so happy for this gift of life, but I was so sad that I was not living out this life by being stuck in the house. What was the point of this kidney transplant when I was not even enjoying my life with other people?
It was almost the end of the school year when I was fully stronger and better. I was able to walk with the minimal use of the wheelchair and no longer using crutches. In the middle of the nights, my body still managed to shake me to go to the bathroom. There was not a trace or load of adult-sized diapers left in the house. The aching and sharp pains that first began when I urinated faded away as time marched forward. The bruises that seemed imprinted on the transplanted area were fading. My nephrologist shared the unbelievably exciting news that my kidneys were functioning at a pinnacle point with the Creatinine blood levels at the lowest it had ever been. My second kidney transplant was becoming more and more like a distant dream and blur. I journeyed forward with my required routines and falsified happiness. I continued on as the good girl because I believed it was only a matter of time before I would be set free from this house and incubation to really start living life.
With time, a genuine feeling of happiness and burst of liveliness overcame me when Gina was allowed to come to visit me. This was a huge step in the right direction that I was soon going to be in contact with others. Gina would walk to my house to see how I was doing or even to give me homework assignments. Her eyes were wary with concern when she first stepped foot into the house, but once I threw my arms around her or grabbed on to her hand, we both knew that I was the same Mary who loved and treasured life even more. Any time she visited me, I hung on to her every word about how she was doing, what school was like, and what was going on in the outside world. I also was revitalized when Claudia called me nearly every afternoon anywhere between 2-3PM to tell me how her school day went. I listened with envious thrill and wished she was sitting on the couch next to me to tell me the stories. She and the other couple of friends who phoned me were reminders of a world outside of a hospital, my home, and my health.
Almost at the end of June and after a daily conversation with Claudia, I was about to hang up when Claudia said rather abruptly and nervously: “You know, Mary, field day is coming up.”
“Yeah, I know,” I said slowly. Field Day was the last event to end the school year, full of sporting and team events. Each team dressed in different colors with a competitive and wild spirit. Smokey hot dogs, burgers, and buttered corn on the cob were served to students. It was the time when the teachers let down their guards, lectures, and chalk.
There was a silence on the other end. I asked curiously: “Why did you bring up field day?”
“Well, I was talking to our school nurse and she thinks that maybe you are healthy enough to come out and join us.” Another pause. “Maybe you would like to come. Would you like to come?”
I inhaled sharply and my heart thudded with joy and nerves that I had not experienced since the news that I was to get my second kidney transplant. I opened my mouth, ready to shout loud and proud: “YES!!” Claudia obviously knew that I was not and could not participate in tug-of-war or the three-legged race, but it would be a chance to reunite and see everyone again. I was FINALLY going to get what I had been dreaming about. I was FINALLY going to be out there with humans and not just medication bottles and endless charts and schedules on what was possibly one of the best days out of the entire school year filled with food and fun. But, then, the jolt of reality hit me like a bolt of lightning about truly seeing my classmates and returning to the real world and school. Could I really handle it? Did I really want this? Could my kidneys handle it? Why was it that when I was faced with doing something I dreamt about and wanted that I hesitated and was engulfed with suspicion and doubt?
Claudia spoke up before I could say anything: “Well, just think about it and talk to your Dad and doctor.” It was quiet again on the other line of the phone. Claudia knew me well that the wheels in my head were already turning with worries if I could handle such a packed and emotional day as field day. After spending all my days homebound and isolated, I did not know if I was physically or more so emotionally and mentally ready to leave my cocoon of safety though I had dreamed about it just about everyday.
Before Claudia hung up, she said: “We would really love you there. I think you will love it, too.” With that, she hung up.
I held the phone for a minute or two, just hearing the dial tone and then the busy signal. My mind and heart were moving at roadrunner speed, but in all the right directions that I was returning back to the human race. I could feel the transplanted area and my heart quivering with pulsating excitement.
My aunts stared at me with concern, took the phone from me, and placed it back on the cradle. “What’s wrong with you?” They asked. “You look like you saw a ghost. Do you need your Daddy? Do we have to call him at work?”
I turned to them with enormous eyes and a smile that could have lit up the universe. I announced to them: “Nothing is wrong. Everything is right. I’m going back to school to see my friends again in about a week.”
My aunts began to exchange spitfire Mandarin phrases at warped speed as to if I was really healthy enough to go to school for such an event. I barely heard them. I was going to go. My mind was made up.
There was a lot of cajoling, pleading, assuring, and begging from me to my Father to go. He was worried it would be too emotionally draining and, more than that, coming into contact with all those students could bring on the germs and have my immune system attack the germs AND my newbie kidneys. After a couple days and confident clearance from my nephrologist that I could go out of the confines of my home and neighborhood to a school, my Father and I finally compromised that I could attend Field Day as long as my Dad personally drove me to my school and brought the wheelchair.
On the night before field day, my stomach churned with an unexplainable feeling that something big was going to happen. I did not know what it was. Only the next day would tell what that something big actually was.
**created name to protect individual's privacy