Friday, January 16, 2009

Part 1

How can I possibly describe Mariko in words that can do justice to who she really was. I guess I should start at the beginning...
Tom and I were so excited at the anticipation of her birth. She was our first child. Throughout my pregnancy there were no obvious signs of anything unusual than what any expectant mother experiences. The wait seemed like forever and we just couldn't wait to meet her.
The 'big' night finally came and we were driving to the hospital, and all of a sudden I knew with certainty something was wrong. I couldn't explain it but I just knew. Tom reassured me that I was just nervous and that everything was going to be alright. But that dreaded feeling would not go away...something was wrong with my baby! After over 24 excruciating hours they finally decided to perform a c-section and our beautiful baby girl was born. And she truly was beautiful. He almond shaped eyes, her button nose, her hazel eyes...perfect. The first words I spoke coming out of anesthesia was "is she ok", and they assured me that everything was fine. After a few hours of recovery I made my way to the nursery & I noticed that she was the only baby with a bandage on the soft spot on her head. I honestly didn't think anything of it at the time...I thought there was a logical explanation. Well throughout the day we had many visitors admiring our baby and wishing us well. By around 8pm when the last of my visitors were getting ready to leave my doctor was still there. I was wondering why.... When everyone finally left he was holding her. He closed the door and came back and gently handed her to me to hold. My heart dropped because I realized that he had something serious to discuss with us. He started by asking us if we heard of Down Syndrome. I didn't even know what that was. But Tom did and I could see it in his see ironically Tom actually worked as a counselor for the disabled. Then the doctor said mental retardation and my heart sank. How could this happen? No parent ever prepares to hear this.. especially with their first child. After a lot of talking (mostly from him), he mentioned Institutionalization...strides in dealing with Down Syndrome...yada yada yada. I was just crying in pain from the c-section and the BLOW! I insisted I didn't want to hold her. You see I didn't want to bond with her. Tom was so upset he said he had to think and left for the night. He left me alone... crying.

Throughout that long night the nurses kept bringing her in for me to feed her...I was so hesitant but they kept coming in every few hours. But by then it was too late! I had bonded with her and I came to the conclusion that if Tom wanted a divorce, I would keep her and raise her by myself. I feel in love with my beautiful baby, and I was at peace with that decision. Early the next morning Tom returned and the first thing he said to me was that if I wanted a divorce...then he would raise her by himself. What a guy!!! That's why I have loved him, and no other man for over 25 years.
We named her Mariko based on the book and mini series Shogun, and the main female character was named Mariko...and because I am part Japanese and we wanted a Japanese name for our child. We proudly brought her home and loved her with all our hearts. She was the center of our universe. She was this tiny, sweet little girl. I loved dressing her up and putting tiny clips in her hair. She was like a doll. She was perfect. She was pure JOY!
Everything was great until around her sixth month when I noticed her tiny fingers were very purple. I thought at first she had ink or something on them...but then I would gently push on her fingers and the purple would disappear so I knew it was something else. The doctor confirmed that indeed it was something serious. She had a heart condition that was not detected at birth because she was so tiny. Because we were living in Guam... we needed to get her someplace with a specialist that could properly diagnose her condition. We needed to get to the States. I immediately called my sister who lived in San Francisco, CA. She got in touch with UCSF Pediatric Cardiology and set up an appointment for us as soon as we were able to get there. Within a couple of weeks we packed up everything ...not knowing how long we would be gone. We sold off or gave away everything else. We gave up our lives that we loved in Guam for our daughter...and it didn't matter. What mattered was doing what was best for Mariko.
The 16 hour plane ride was horrible...but we finally made it to California. Unfortunately due to the pressure on the planes atmosphere Mari swelled up terribly. We were so scared.

The next few months were a series of doctors, specialist, test, hospital stays, fear, anger, stress, ect...and we were finally given the final diagnoses. The cardiologist sat us down in a room to deliver the bad news. Mariko had a severe heart condition...all these medical terms that I won't get in too. He kept stopping in the middle of delivering the bad news to answer his beeper...until in a moment of utter frustration Tom lost it, and told him to stop answering his @**&! beeper because he is talking about OUR DAUGHTER!! Well the doctor got the message and through my tears he told us that Mariko's heart with inoperable. That she was considered terminally ill. That she had 2 weeks...2months...2 was hard to know how be continued...For the next 21 years of her life I have lived in constant fear & dread...of that day. But each day, week, year that passed it became a little thing in the back of my head and not a reality. Once in a while though the thought would enter my head and that little flutter of anxiety would hit...but would slowly fade as each day of her life she out lived that dreaded initial diagnosis. She was still with us...she was still "stable"...she was be continued...
For the next few years Mari was in and out of the hospital. She was always a favorite with all the staff because no matter what she was going through she was always smiling. She would scrunch up her tiny nose, and squint her eyes tight and her lips would curve to into the most amazing smile. You just 'knew' she was genuine and smiling with all that she had to give. She had a wonderful gift of not holding a grudge. She may cry from all the testing, blood work, pain, and discomfort she was put through...but almost as if that never happened she would always smile the next moment and give you a hug, and a gentle kiss on the lips or cheeks. She made you feel like you are forgiven...and that she knows you didn't mean any harm. Instead of making her feel better.. it was as if she was making you feel better with her love.

She didn't really talk the first five years of her life ...but she knew sign language. She would curl her little fist and tap her chin as a sign that she was hungry. She would put her tiny thumb and fingers together at a point on both hands and tap them together as a sign that she wanted 'more'. She would purse her cute little lips together when she wanted a kiss, and she would wrap her arms around herself when she needed a hug. Her cheeks have always been bright rosy red because of her heart condition, but she just looked like a living doll with rosy be continued...
I must admit that I was very sensitive...defensive when it came to Mariko. I remember that when she was around 2 years old she had to wear an Oxygen tube 24 hours a day. Not only would she get stares from strangers because of her down syndrome...but it would be more obvious when she had this oxygen tube on her wherever we went. Once we were in Costco and this man actually came up to us and said "she should be kept at home". I was in shock and shaking dare he have the gull to say that when she deserved to be out and about with her family if the doctor says it's ok to do so. She loved being out and that's why we had a 'portable' oxygen tank for her.
Another time we were in the city at the Aquarium, and this Chinese lady kept staring at her to a point where she was following us around. I admit I lost it and told her that "she is not an exhibit here!" Well she finally stopped following us around. I mean seriously how would you feel if people followed your child around just staring with this shocked looking face?
There was also an instance when there were a couple of kids who kept loudly saying .." hey's Chucky Doll". I honestly wanted to whack their mom because little kids didn't know any better. But that so-called adult could have pulled the kid aside and explained to them how 'wrong' that was. Luckily Mari was too young to understand, but my heart was broken. My sweet girl deserved better than this.

There were many instances throughout her life of me wanting so desperately to protect her. In this day and age you would think people would know better. Don't they know how lucky they are that their children are 'whole' and healthy. Intellectually I know that for most people seeing a disabled person can be uncomfortable because they do not have any first hand experience being around them. They look 'different', they seem 'weird'...but my God if they only took the time to think and know them...they are the sweetest, purest people you will ever know. They are innocent.
One last thing I guess I should share is that another time some teenagers working at a store keep staring and then giggling at her...I again lost it and said " What's so funny?" One of the guys spoke up and said "It's ridiculous ...look at her"..well I spoke up with words I will not repeat, and went to the Management...and thank goodness the manager was actually so upset with these teens that he said "I will take care of this". He was obviously ashamed at what they did and rushed to take care of it. I didn't stick around...but Mariko who was speaking a little now said "Mommy my face...wrong"? My heart sank because before this she never actually knew she was different! She was about 6 years old at the time. Again holding back tears I said " Nothing're beautiful"!to be continued...
Have you noticed that everywhere you go adults, teens, pre-teens, on TV, in often you hear 'retard', 'that's retarded', 'I'm retarded', 'you're retarded'. For some reason that has become an acceptable word in the English language. Well as a parent of a so called "retarded" child that word cuts like a knife. It's used as an insult...a slang to cut down someone. It's saying it's the worst thing you can possibly be. So what they are saying to me is that my child is the worst thing to be. Does that make sense? I wish it wasn't used so casually in conversation, but I can't change the world. Just please don't say it in front of my family and other families with mental disabilities.

February 10, 2008 (added)One really scary incident happened at Golden Gate Park when she was probably about 4 years old. We were extremely poor back then, so we practically lived at Golden Gate Park when she was little, because it cost nothing it was beautiful and Mariko who was so tiny could walk around. We spent practically every weekend walking around the park. Well one particular weekend we were there as usual, and it was a wonderful day. We spent practically the whole there day and Mariko had a great day. When we returned to our car we noticed there was a paper placed until the window wipers. We obviously thought it was a flyer for some show, sell, ect.. (what most people got under the window wipers). Well it was a paper with photocopies of kids in various forms of severe physical deformity...I was shocked! In bold letters it said something like..."this is what happens when you mix races". Well as you all know Tom is Caucasian and I am Asian/Pacific Islander. I was so afraid for us and especially for Mariko. Tom was pissed and looking around wanted to find the M*&%..F*&&$ ...wanting to protect his family. I felt we were watched and that someone took the time to place that paper on our car because they saw us & little Mariko. I looked at all the cars I could see around us...and you see... not one other car had that flyer!to be continued....
In her short lifetime...she had to endure more than any of us would ever have to go through. Yet she never really complained about those things nor did she feel sorry for herself. She loved life! The simplest things could make her happy. She loved Music. She loved to dance. She loved her DVDs and teen magazines. She loved notebooks & pens for stenciling. She loved Harry Potter movies. She loved the Disney Channel. She loved lip gloss, rings, nail files & pink polish. She wanted a boyfriend. She wanted to get married. She wanted to have a baby.... things she never thought for one moment couldn't come true. And at times I'm grateful that she never found out that those dreams that most girls wanted, were really out of reach for her. We treated her like our other daughters and like any other girl. She was never made to feel less.She felt pain. She cried. She laughed. She loved. Just like you and me. And yet she was apart from the world most people lived in...and not always by choice. But by lack of ability or lack of be continued...
February 9, 2008What a lot of people didn't understand or that Mariko loved attention. But I don't think a lot of people knew how to talk to to treat to act around her. Most of the time people would give her a nice greeting, smile sweetly, and when she spoke they probably didn't understand her. So they would politely nod, or smile, or say something in passing. But then she would become invisible. Don't get me wrong she didn't expect much more. She didn't demand attention, she didn't impose herself into other peoples conversations or lives. I guess she got used to how she was treated, and how she was perceived. People inadvertently (through no fault of their own), didn't really give her much thought, because they didn't know what more they could say or do.
My biggest guilt as her mother is that I didn't give her as much as I could have. People tell me now that I was the best mom...that Mariko loved me. I know she loved me, and that's why it hurts so much. It's after she is gone that I wish I could do it all over again...that I would be more. I try to justify it by telling myself that I was pulled into so many directions. Home, work, and trying to do the best by my other two daughters and their needs as well. Now I have to live with the fact that IF I only knew that this was it...that if only I knew the exact time and date (January 8, 2008 @ 2:45pm) by beloved child would pass from this world...that I could have done it all better. You see she never demanded my time either. She never demanded my attention. She was so easy. GOD I wish I could do it over so much more. I'm so sorry Mariko...please forgive me.
For Christmas just two weeks before she passed away...she received one of those 365 day Harry Potter calendars. So for everyday of the year there were pictures of different people, scenes from the movie. She absolutely loved that calendar. She would flip through all the pages and once in a while point out a particular picture that she liked. We would nod and smile and say a comment or two and then she would be so happy, and go back to her room and continue what she was doing. I never had the chance to just sit with her and go through all the would have made her so happy. Why didn't I do that? Why... Why ...

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