Chapter Two: Ode to My Family

Post-first kidney transplant, my body and health took on a life of their very own. I quickly filled out and gained weight with round rosy red cheeks and layers of lard on my once frail and sickly thin body. I obtained taste buds and fell in love with food, thanks to the hunger pain side effects from medications. The weight gain and love for food was a small price to pay in order to keep my brand new kidney functioning in removing those nasty wastes and pumping life in me. I became endlessly more active with skipping and running around and chatting and laughing loudly to compensate for my formative years of quiet and bewildering pain. I saw life through different, bright eyes. I was a brand new me—all thanks to this gift of life.




1988/1989 (age 6/7):
The first school photo
post-first kidney transplant


However, the more my health continued to improve significantly from my first kidney transplant, the more my family life was spiraling downward into pieces. I thought that forming somewhat lost relationships with my parents and sister due to my chronic kidney failure would magically rekindle just like my health, but that just did not happen. I never minded too much about my chronic kidney failure hurting me, but I cared about it hurting and even killing my family. And, that is exactly what it did.


We lived in a red brick house. It was the only red brick house on the street that even had crookedly lined bricks up and down the driveway. As I became healthier, stronger, chubbier, I absorbed everything inside and outside that house. Inside the house, my bedroom was my safe haven and real home. I had a white, cracked painted old cabinet where I housed my blonde-haired Barbie dolls. I combed the hair lovingly, experimented with different outfits, and used them to act out various and made-up scenes of a happy family—a family I did not have. I had this ballerina jewelry box with sparkling cosmetic jewelry scattered in it. The ballerina twirled around as a sweet lullaby song whirred along with her. My million and one stuffed animals and toys that my parents’ Church friends gave them to give me were lined on a large mahogany dresser or stowed away in my study wooden toy box. My bed was adorned with Disney’s “The Little Mermaid” bed sheets. I slept on a pillowcase of Ariel holding a starfish in her small hands and dreamt sweet dreams that I never had when I was in the hospital.


My sister’s room was across the hallway. It was large, massive, and seemed a forbidden castle to me. She often had the door closed and I could hear her typing away; She was always the writer. When she was not in her room, she was downstairs in the basement playing beautiful and haunting melodies from our old and out-of-tune piano. My sister was a mystery to me. My illness was a thief that stole the budding bond that my sister and I had somewhat created and had for only 3-4 years. From the time I was age 4 and on, our sisterhood was drastically changed in not the best of ways. I should have been the energetic and jumpy younger sister that ran around in circles and had my big sister chasing after me. I should have been the one to make her laugh with silly faces and pranks. But, I was too sick to do any typical “little sister” tasks. From a young age, I was certain that my sister disliked me for one reason and one reason alone: I gained every single ounce of attention from everyone and anyone. I was the center of attention from my parents who walked on cracked eggshells and shards of glass when it came to my precarious health status. They had eagle eyes on me in administering my medication and that I did not go above and beyond in physical activities. I was dead-set in the spotlight yet again when all of my parents’ friends and their family members asked: “How is little Mary doing? Is she better? Is she healthier? She is so brave.” It was never or rarely ever: “How is Mary’s older sister doing?” There is always rivalry between siblings, but when one sibling is ill at a young age and the other is not, that rivalry is intensified tenfold that bubbles over into adulthood. My disease had achieved a strained relationship with my sister when we were little and growing up. I only remember snippets of happy and giggly moments of her curling my hair with the hot and steaming curling iron and dressing me up in a Snow-White costume and her pretending to be my Tooth Fairy when I caught her sprinkling pennies and dimes under my pillow, but never told her. I remember her singing and dancing to Whitney Houston and Kermit the Frog’s “Rainbow Connection” and I watched with glee as I clapped my hands. Most other sisterly moments were unpleasant. We barely spoke and, when we did, we often argued that started from verbal spats to physical brawls. My sister was bigger and stronger than me so she always won—and she always got in trouble. Her getting in trouble with the wagged finger from my parents and the lecture: “You are supposed to take care of your younger sister. She isn’t healthy and strong like you. You need to set a good example,” was yet another reason for her to resent and dislike me. When I look back, I do not know how my sister managed (and still manages) to constantly put herself and her needs aside for me through no choice from either of us, but through the choice of my chronic kidney disease.


Because of a nearly non-existent relationship with my sister, I spent most of my childhood alone and outside in the open air. I was a lonely and lonesome child that was unsure about how to interact with children my age, but only knew how to charm and socialize with adults who pitied me or who were inspired by me. I am certain now that I wanted to taste, feel, hear, and see all that the outside world and especially Mother Nature had to offer after I was trapped in a hospital for so long. The grass felt so ticklish, the trees were so huge, and the air was so crisp that it seemed to make everything clearer. I craved to climb trees, but I was still too short and stout to even reach a single branch. I use to stare at our brick red house from our outside street with a swell of pride that our house stood out in color and build. I use to stare between the cracks of misaligned red bricks, touch the green grass, and then skip up and down the driveway in my black polished shoes and sing aloud: “We’re off to see the Wizard! The wonderful “Wizard of Oz”! La, la, la…” I ran outside and skipped and skipped until my legs ached. Mother Nature became my reliable friend that I turned to when my sister was holed up in her room and especially when my parents argued. They argued a lot.


I did not understand what they argued about because their biting words were spoken in Chinese. I did not know a word of Chinese because I gained the medical language of IVs, needles, catheters, dialysis, and transplant. I just knew their constant fighting was not right, not normal, and contradicted any perfect image that our classic nuclear family portrayed. To this day, I still do not know what my parents fought about, but I have heard the stories and the blame crowned upon my Mother. Yes, my Mother was the evil seed who constantly put down my sister and Father. My Mother called my Father stupid and my Father’s response was throwing himself headfirst into his work even more to avoid her emotional and verbal abuse. The story goes that my Mother told my sister sharply and with finality when my sister was 10-years-old: “I’m not going to deal with you anymore.” I hold a frightening memory of my Mother aiming to slap my sister across the face and my sister darting out from our Mother’s iron hand before it struck her icy cold or burning hot.


I remember how my Mother treated me. No, my Mother did not put me down, snap, or strike me. Instead, my Mother nurtured and loved me out of guilt and as though I was a wilting flower that required constant care and love. There are endearing memories of sleeping in my Mother’s bed and her lying next to me with the thick ripples of her dark hair tickling my skin. I remember the scent of her strong perfume intoxicating and overpowering me as I was lulled into syrupy dreams in her enveloped arms. I heard her tell me how much she loved me as she stroked my hair and cheek. She called me “Bao Be,” which meant “Little Treasure” in Chinese. I never wanted to disappoint her or make her think less of me. I never wanted her to leave me the way she had somehow emotionally and mentally left my Father and sister behind.


But, I was confused.


I did not understand why I rarely saw my Father and why I was put in a situation where I saw my mother with two sharply contrasted faces: one who was loving to me and the other who snapped and snarled at my Father and sister. I barely hold any memories of my Father when I was a little girl and immediate post-transplant because he was not there, or maybe it is that I just do not remember him there. Rather, it was my Mother there—helping me with homework, singing Chinese songs, twirling around in dizzying dancing circles, or yelling and ranting and sobbing in foreign Chinese words. I never knew what to expect with my Mother and my reaction to her erratic actions was wavering between happiness and fear. As I became older and was more aware of my health problems, I wondered about my Father and if he was forced to work around the clock as a way to pay the heavy sums of hospital and health bills or as a way to truly avoid our dysfunctional and troubled household. It did not make sense to me why my mother treated my sister so poorly and bordering on brutal when my sister did nothing except to keep to herself with her writing and piano playing as a way shun what our family started out as and what it was dangerously becoming. My confusion slowly manifested into a dark guilt that my health problems and I were to blame and the cause of my family falling apart. This guilt never completely went away, especially when my parents finally divorced when I was 9-years-old.


In answer to my turbulent and unpredictable family life, I ran away from home at least two times. My Father had always called me the “bold one” and that fearlessness was my friend and foe. The first time was when my parents were screaming at one another so loudly and violently that I dug out my red suitcase (well, it was really my sister’s because her name was on, but I stole it anyway because that is what little bratty sisters do) with the words “To Grandmother’s House we go” with a cartoon of a girl with braided hair grinning at me. I stuffed my blonde-haired bombshell Barbie dolls inside because I thought that all I could do for the rest of my life was just play and not have to face this family and reality. My parents were so involved in their Chinese shouting match that they did not notice when I crept out and went down the street to the neighbor’s manicured white house with the black shutters. I rang on the doorbell and the teenage daughter answered with wide eyes and a half smile. She asked me: “What are you doing?” I announced with my chest puffed out: “I’m running away.” Less than ten minutes later, my Dad picked me up with a soft and forced chuckle. He did not say anything to me when he grasped on to my hand and placed me back in my room. Apparently, they thought my run away episode as cute. The second time I ran away was when I argued with my sister. She made me so angry and so furious that I stormed out of the house and went to another neighbor’s house in the other direction. They were an elderly couple that I spent a lot of time with. The husband was half deaf so I had to yell extra loud and he would still let out a gruff and booming: “WHAT DID YOU SAY???” I had no idea how he could not hear me because his wife was this soft-spoken and sugary woman with a white apron and snow-white hair. When I told her I was running away, she did not ask me: “Why?” or immediately call upon my Dad to pick up his reckless and rebellious child from their home, but distracted me with telling me stories. They had a huge window overlooking our house and I glimpsed my Father in the backyard looking around and around. She said to me: “I bet that is your Father looking for you. I bet he misses you. I bet he wants you to return home.” I pouted, stuck out my lower lip, and spat out sharply: “I don’t have a home or a family.”


I stopped running away when my parents finally divorced. Unlike most children, I was extremely happy, relieved, and yet there was a whole lot of emotions fluttering erratically within me. How could a Mother who was the first person to protect you in her womb and then hold you in her arms leave like this? What did I do wrong? Why did I have to be born this unhealthy way that hurt my family? Why me? All my fingers pointed to my health problems, but it was years later that I realized that my Mother did not really abandon us and me when she divorced my Father. Instead, she abandoned the three of us long before the divorce finalized because she could not withstand the harsh reality of my health problems, her loveless marriage to my Father, and her confused feelings towards my sister. Her answer was to leave us and start a new life with the man she had an affair with. My response was frightening fury that should not exist in any child.


This anger stayed with me for nearly half my life when I felt a sense of familial loyalty to my Mother to visit her and her new family after the divorce. I had to see her because she was my Mother. She was the one who gave birth to me. She was the one who stroked my hair, kissed me on my cheek, and told me she loved me. Blood ties bound me. Very strangely, my Mother underwent a severe and sudden religious transformation that did not exist when she was married to my Father. When I visited her, she went into rituals of praying at least 3-5 times a day and saying: “God Bless You,” “Amen,” or “Let us Pray,” throughout the day. Her religious obsession and metamorphosis was unexplainable and just plain peculiar to me since she was the one who had an affair and left our family. Wasn’t that the most supposed “un-religious” action? Out of that blood tie obligation, I endured these prayer rituals and bit my tongue until I tasted blood when she told me that I was a sinner because I did not go to Church and pray. I was brainwashed to believe that I was the one at fault when she wormed her infamous guilt trips on to me that I should visit her more often because she was my MOTHER. The moments that I visited her, the little girl came crawling out that craved my childhood when I laid in her bed and took in every minute, scent, word, and breath from her. I craved a warm mother-daughter relationship where I could be proud and smile at my beautiful mother rather the crumble into pieces as I often did after those visits with my Mother. It dawned on me that my Mother was truly a troubled soul when I was 11-years-old and had asked her what had led to her affair with another man. She stared me in the eyes. With a hypnotic expression, she simply said: “Well, Mary, don’t you know? The devil made me do it.” From then on, I made every effort to avoid my Mother and put off visiting her or any means of contact. This resulted in an estranged and nearly non-existent mother-daughter relationship.


Years later after a tumultuous household family life and a messy divorce, it took years to make my Dad, my sister, and me into an actual family. I remember my Father often cried and twisted in his sleep like a little boy at night. My sister whispered to me that he dreamed of our mother and all that she had done while they were married and when they finally divorced. The mornings after my Father’s nightmares, he was somewhat cheerful and carried on with putting food on the table to feed us, going to work, and tucking me in at night while we stared up at my glow-in-the dark sticker stars on the ceiling. My sister was the quiet and sullen one who had somehow trained herself that as long as she stayed stoic and strong then she would get through this and put the pieces of our new threesome family together. I never knew what my sister and what my Father thought or felt. One could say that we lived up to the typical Chinese-American family and individuals who do not share feelings, but get through life’s most difficult encounters by doing what needs to done. Truly, it had nothing to do with my Chinese background, but had everything to do with the strength of human nature. My Dad, my sister, and me did what had to be done: We slowly became a lovingly disoriented family with Dad’s delicious homecooked meals and philosophical lectures and my sister and me arguing every now and then out of silent sibling expectations and love rather than hatred. This new chapter with my new family consisting of my Father, sister, and me had officially begun. I placed my guilty feelings of being born with kidney failure and motherless moments from age 9 and older away for just a little while, but they never went away. No matter the new chapter, the damage had been done. There were and always would be “what ifs” and “maybes” that lurked in the back of my mind. What if I had never won the lottery with my chronic kidney failure? What if I had been born healthy? What if I had maybe never been born? Maybe my family would have survived, stayed together, and managed if we were a stable and strong force to begin with, but I am reminded that we were unstable and weak from the start. Maybe my mother would not have left us to turn to and depend on another man and religion for comfort and a new life. I will never know. I learned before the age of 9 that life just was not fair and it was an entangled combination of things happening for a reason to make us stronger and sometimes there was no damn reason at all for certain things happening in life like my illness.


I like to think now and that I never had a broken family to begin with or end with. Instead, I just had a family that began with four and then of three because it was meant to be and regardless of my lottery-winning chronic kidney failure diagnosis and defect. Yes, I like to think this and hold this comfort or maybe even lie in my heart.

9 comments:

Mónica said...

Oh Mary!

This chapter is really touching. I have almost cried reading how much you suffered because your family situation. It's so brave from you to share those painful memories with us. And I think it wasn't you fault. I can't wait to read more, such a sincere and beautiful text!

Aunt T said...

I wish some of the parts weren't so detail and personal. Not everybody needs to look into our dirty laundry basket.

N said...

This chapter was quite touching. I found myself crying thinking of you running away from home. Thanks for posting it.

Pap said...

Sorry about the little glitches in your blog thing. That is technology for you. As great as it is, it can still malfunction. Oh well, you can't have everything. You are one heck of a writer, although yes, this chapter was more serious than the first but the part where you mention your glow and the dark stars cracked me up and when you talked about when you ran away twice was quite amusing as well.

Alice said...

Hi Mary I will email you my comments, I have many things to say and I don't want to share in public.
In the meanwhile, big hugs.

TS said...

I just finished reading it and i really enjoy getting to know you better! i love the way you put things into words! good job Mary!

AHW said...

Wow congratulations on posting this, please let me know if you want me to help you publicize. I admire that you can complete something that is such a long term project.

Catherine said...

Hi Mary!

I won't spoil your comment session with another very long comment so I prefer to send you my comments via e-mail.

Good job little bell! ;-)

Eva B. said...

As always, I loved reading this! It was really touching, and I feel like it gave me a lot of insight into what it would be like to be in your situation, especially in terms
of the family breakdown. I think you did a really good job of giving an impression of your mental state, as well as the atmosphere within the family environment.

The part about your mother's religious obsession was particularly vivid in my opinion. The bit where she told you
why she had an affair was chilling!

Just one minor negative comment, and it's a small one: in a couple of places, I felt like the wording was a little bit awkward. One example that I can think of off the top of
my head was where you used the phrase 'two times'instead of 'twice'. It could be just me, but little things like that disrupted the flow of the writing for me in a couple of places. Like I said though, it could just be a
matter of personal taste.

But forgetting that small issue, I thought it was great! I really look
forward to reading the rest of your story.