Chapter One: Lucky Me

My family and I won the lottery when I was 4-years-old.

Winning the lottery was completely unnecessary. After all, we were the typical (or as typical as can be) Chinese-American family that lived an “American Dream” in our cozy yet cluttered home with all the basic necessities of food, clothes, and toys—well, don’t know if toys were really a necessity, but they were at the time during those tiny tot days. My Father was the one with his round belly and warm laughter that erupted when I made silly faces at him. There was my Mother with her sweet scent and endearing broken Chinese-English language words. My sister was 6 ½ years older than me. She was a combination of serious with her facial expressions, but mischief in her eyes in the way she went out of her way to play toys with me and tickle me until I felt like I could not breathe anymore.

There was me. I was supposedly born healthy at roughly 7 pounds and X number of ounces, but as I turned 1-years-old, then 2-years-old and eventually 3-years-old, it became abundantly clear that something was not right. I could barely walk and could only half-crawl at around 3-years-old. I was a skinny, sickly, and pale child with dried lips and hair that had a mind of its own. My mother managed to tame my frizzy curls with a shrill Chinese-spoken curse at the brush that ripped through my hair and that made tears roll down my cheeks. I was weak, fragile, and it appeared as though I would break at any given moment. I was barely eating and when I did eat, I kept losing weight. Eventually, the paleness in my face turned a tinted and tinged yellow color.

That is when we won the lottery with finding out what was wrong. The lottery-winning story goes like this: I had a fever of 106 degrees and was rushed the emergency room. The golden coins fell in a heap and the Hallelujah chorus went on with the diagnosis: Chronic Kidney Failure. Alas, I was the lottery winner. Oh, lucky me. Upon the diagnosis of chronic kidney failure, I am not exactly sure if my kidneys had failed. All I knew is that my health problems had begun and this lottery-winning announcement led into a series of unfortunate events.

My memories of the time after my diagnosis and its effects are fragmented and like jagged jigsaw puzzle pieces that cannot fit together to form any picture at all. I have depended on my father’s stories about my childhood spent in a hospital. It is frightening not knowing what happened or at least how my shut-down memory concerning my childhood would have perceived everything. It is scary that my dreams and blurred and dizzying memories fuse together so I do not know what is real and what is unreal. My father told me he had many memories of me in the hospital and that most of them were unhappy, miserable, and fair to say a living nightmare. He couldn’t understand what he did wrong in his life that his little girl was sick like this, and he could not make it better if he had all the band-aids and alcohol swabs in the world. He told me how my Mother’s voice became so piercing like a siren full of panic that she would spit out Mandarin phrases combined with broken English words when I had tears streaming down my face from the pain and confusion of what was going on. Then, there was sister who turned sullen and was left home alone and wondering when one of our parents would find time to give her some attention and love while she struggled through her latest homework assignment and adjustments to school.

My father told me the facts: We all have two kidneys, which are about the size of a fist, located in the back area. The primary function of kidneys is in removing wastes through urination. When the kidneys fail, an artificial kidney machine known as dialysis comes into the picture. There are two types of dialysis—hemodialysis and peritoneal dialysis. According to my father, I was put on put on peritoneal dialysis almost immediately and the hunt for an organ donor began. Mind you, this was the 1980’s when living donation was known, but considered a rarity and on the brink of taboo. I tell the truth that all I knew about peritoneal dialysis is that it was now my failed kidneys job to remove my wastes, but I did not know how it went about doing that. Through research and my father’s tales, I had a surgical procedure to insert a small tube known as a catheter. Cleaning solution came into the picture of cleansing or removing the wastes that my failed kidneys could no longer perform. I always have the image of me as a washing machine with detergent poured into me. As I underwent dialysis treatments, the hunt for a suitable and beyond 100% organ donor was in full throttle. Months went by with the waiting, the wondering, and the ripple effects on my weak body and even weaker and unstable family. My Father said that he was tested to see if one of his kidneys was a suitable match. He was just about ready to hop on the operating table to donate one of his kidneys for me when the doctors said that it was beyond 100% of a suitable match. So, the hunt continued.

My father told me the bittersweet stories. The bitter was how he used to argue so intensely with the doctors and nurses hurting me by holding me down and poking me with needles in hopes of finding one more vein. There was the sweet and adventurous story of the dreams my father had to return me back among my stuffed animals, Barbie dolls, warm bed with the Little Mermaid bedsheets, family, and just home and not at the hospital, which had turned into my haunted and endless house. My father has insisted repeatedly when I probe him with more questions and curiosity that no matter the pain I endured with a twist of my face, tears streaming down my cheeks, or the occasional scream that would erupt from my mouth, I was a good and very happy child. Perhaps every parent has to say this, because to admit any faults in their child is to admit faults in the parents. Nonetheless, my father is adamant about this. He has described me as a “trooper” or “survivor” who had and still has the spunk and the social skills of a butterfly flitting from one nurse and person to another and grinning from one doctor to another with my once sickly and pale face and dark hair.

My father told me that his favorite memory of me is when I would shuffle out to the nurses’ station because I was tired and restless from lying in the stiff hospital bed and started chatting with the nurses. I was tiny and frail and the nurses hovered over me like a doll, but I had the energy, spirit, and passion of a larger than life person. I remember singing “Jingle Bells” in the stark hospital hallways when it would be a warm day outside with the sun streaming through the dusty windows. I talked, grinned, and had a cheerful and determined disposition that only became stronger with each moment of pain that I had no control over. My father always ended this story with a faraway look in his eyes and a serene and wistful smile. When he broke away from the memory and trance, he would look at me and repeat:

“You were always a survivor. Remember that you are always a survivor. Remember that were not ever scared of anything and remember not to be scared of anything now.”

And, I remember that fearlessness when I was in the hospital. It is a beautiful time to be a child AND even to be sick because not knowing is equivalent to sheer and utter bliss and managed to form a resilient yet innocent me. I was unafraid to speak with anyone who would give me the time of day and exploring the hospital hallways with intrigue at the machines all around me. I was the winner to gain the golden coins of perspective on loving life and learning about it at a wee tyke age. I was the lucky lottery winner of life.

Lucky Lottery Winner:
The above photo is of me in the hospital with the nurses

The hunt for a kidney came to an end and I had my first transplant when I was 5 or 6-years-old. The peritoneal dialysis came to a close. No more washing machine days. My time at my hospital home was completed. My parents could bring me to a home that I was unfamiliar with to start living with and being with them and my sister rather than the nurses and doctors I knew of. It was time to be among classmates my age to learn math, reading, and now social skills with them rather than adults. The ending of hospital days brought on the beginning of my brand new functioning kidney to start my new life.

Age 6:
This was me after my 1st kidney transplant. From physical appearance alone, you can see how the transplant changed me from the time I made my first "wish" to this photo here


Eva (you know, from the land of oz) said...

it's so great to be able to read your 'confessions' at last. I also love being able to see the photos... you were a very cute kid ^-^.

Can't wait to read more!

Anonymous said...

Great write up Mare! You certainly know how to tell a story. Looking foward to the next chapter!

Unknown said...

I felt sadness when I read this 1st chapter.
I felt how hard it could have been for your father, Amy and your mother.
I felt the big and awful contrast between the lottery-winning and the discovery of the illness.
I felt how your experience at the hospital could have been awful and hard as a little child. I could imagine the contrast between you singing winter songs and the beautiful weather outside... But finally I admire you because you find a "good" side to your experience as an innocent child at hospital.

It was interesting to learn about your illness. I must confess I don't know a lot about it and sometimes it's difficult to find 'easy' informations to read about it that I could understand. I think it was great to explain it as your dad explained it to you with easy words when you were a kid and couldn't understand everything.

You wrote a lot about your father but you don't speak a lot about your mother's feelings and what she did when you were ill. I have the feeling that your dad did everything for you and your mother nothing and I don't think it's true, was it? Or maybe we can learn more in the next chapters (??) Please don't feel offend by this negative point of view I know about your relationship with your mother but I think it could be interesting to learn about her feelings too...

This chapter is extremely personal and I admire you to share it with all your friends and people who could be concerned and interested.

I really feel honored to read it.

Miss Mary said...

Hi, everyone! Thanks for the comments and for all your support! Keep the comments (both positive and negative!) coming. You will find out lots more about my family in the next chapter!

Thanks for reading!

Mary :-)

Alice said...

Could you please delete my previous comment? I did a mess, sorry!!

Hi Mary, I missed this second post because blog usually has the most recent post at the top and so people don't usually scroll down!
Also the explanantion of the photo of you aged 6 is very tiny - at least on my computer!

Kids are kids because they don't know what pain or death is and all the kids in the world should feel such innocence and ignorance because it's knowing what pain or sufference or death that makes you an adult. Your motto fits perfectly your experience of life.
We, readers, could never know how it feels to spend part of your life at the hospital, as most of us went there only to take home a new brother or sister. When you are a child hospital doesn't scary you, but you grown up it's the most scaring place in the world.


Unknown said...

Can you believe that I am that nurse on the right!! Joanne from 7 south at Einstein!! I heard about you from a nurse that I work with at Westchester! She recognized me from the picture and I called up Blythdale to get more info! I am so excited to see you are doing so well. Will call you or e-mail you so we can meet. I live VERY close to you !!!