March 4, 2009 (PROM)
Mariko was invited to the Senior Prom during her 11th grade at Terra Nova High School...and it was one of the Happiness day's of her life. She truly felt like a princess on that day....and she was! We were all surprised and excited when she was invited...but we were also a little tentative because this was THE prom. The real High School prom...not just another gathering with other kids with disabilities. But her teacher Judy reassured us that it was going to be great and that she was going to be one of the chaperones so we shouldn't worry. So with great hope we agreed to let her go. Her date for the evening was a senior named Luke...a very sweet kid with downs syndrome as well.
to be continued...
The day started out pretty early for Mariko. You see Luke was a Senior and since he was graduating his family started the day with a graduation brunch at the party room at the golf course. Mariko had on this perfect summer dress with green, yellow, orange, & white stripes, with a white sweater on. She had these tiny white tennis shoes and white socks. She looked like she belonged in a Country club. And she was treated very special because she was the date of the graduate. She had a wonderful time.
After the brunch she came home and started to get ready for the Big Night! We wanted to make sure this was the best night of her life. We bought the perfect dress. PINK! Everyone knows how tiny Mariko is but we were able to find the perfect dress (not babyish at all...very age appropriate). It was a pink lace, 2 strap dress that fit her perfectly. It also had a long pink scarf that hung gently around her neck and down her back. She looked beautiful. Mariko couldn't walk very good so we had to find her tennis shoes so she would be able to be comfortable and dance the whole night in. We found her these tiny pink, slightly platform, tennis shoes. Instead of the shoe strings I put pretty pink laces as her shoe strings. I fixed her hair with these very tiny little pink sparkle buttons that shined in the light. We also found this gorgeous 3 layer necklace in pink from Claire’s. We polished her finger nails and I carefully applied makeup on her to conceal her very red cheeks, and added soft pink lipstick and shadow. She truly looked gorgeous and she was so excited.
to be continued....
March 22, 2008
Once she was ready and waiting for her date...she was transformed. Instead of this little girl...we saw her for the first time as the young women of 17 she really was. Her behavior also changed. She was acting exactly like a 17 year old going to the prom. She was moving ...almost floating around like a princess. Her mannerisms were very ladylike and very mature. She was absolutely careful of how she was walking ..gently lifting up her long dress and smoothing it out when she sat. She had this slight tilt of her head when you spoke to her. She was so excited.
Luke finally came with his mom and her friend. They would drive and pick them up later. Luke had the most beautiful wrist corsage for Mariko with pretty pink flowers...and they ordered it perfectly to fit her tiny wrist. He placed it gently on her wrist. Mariko then helped pin his flower to his suit. It was such a wonderful site and we of course took lots of pictures inside and outside before they left. They looked so happy. When they got into the car Luke's mom had this tiny champagne glasses and sparkling cider for the young couple, and they toasted the beginning of a wonderful night.
We were told that Mariko had the most wonderful time. She danced, and danced and danced. We have the beautiful prom pictures and it was truly a magical night for her. She felt like Cinderella at the ball. I thank God everyday that she had a night like this. That she got to experience a grown up moment and she was on cloud nine for days and days. She came home that night and she couldn't stop smiling. She was so wired from the experience and the high lasted for quite a while. I can't express how much I appreciated Luke and his family and Judy Dietel for giving her this most wonderful night ever. It was a dream come true for her.
to be continued....
March 26, 2008
I really believe I would like to adopt a child with Downs Syndrome. They are the most beautiful people you could hope to know. Their hearts are so loving. I think I would if I were younger...but I don't feel it would be fair to them to have older parents. Also, I fear that I would not have the time really needed to give enough of myself to them. I still have guilt that I didn't do enough for Mariko, so I would not want to be unfair to another child with Down Syndrome because I couldn't give enough. I will not want to do this because I miss Mariko so much...because no one could ever replace her in my heart. I'm just not sure...it's still too fresh in my memory. It's amazing though when I see a child with Downs I feel so happy. I just want to hug them so badly...but don't worry I restrain myself. (I don't want to freak out the parents. hahaha...) But I miss the innocence of them...I miss the sweetness of them...Mariko just LOVED HUGS.
to be continued...
The child with Downs Syndrome's capacity for love is infinite. Just a simple act of sincere kindness by anyone would make them your friend for life. They are genuinely grateful for any amount of attention you would give them. But they also have the ability to understand if someone is insincere. They know when you care or when you are just brushing their feelings aside...or when you are not really paying attention. So if someone truly cares about them...they KNOW it!
They really don't expect or demand much. All they really want is to love, and be loved in return. I wish all of you could have truly experience the love that was Mariko. To have spent more than a few moments with her. You too would truly know what it is to have been in the life of one of true goodness. And that is why I cry for my girl every day.
I know I have mainly been focusing on everything that was Mariko. Please don't get me wrong. I love my other two daughters. They are so wonderful. Yukari is the coolest, most interesting kid, and has this ability to make me laugh everyday. Tomomi is a whirlwind of constant change and fascination. But they have a lifetime of living to do. A lifetime of experiences to live. A lifetime of loving, growing, & learning to do. They loved Mariko. Even though she was half their size, she was their big sister. Mariko was the best big sister to them.
When Kari & Momi were born nobody love them more than Mariko. She was so gentle with her baby sisters. When we placed the babies in her lap, she would carefully hold them, and gently kiss them. She was their big sister until they out-grew her. But she never let them get away with thinking they were in charge of her. She would scold them when they were bad. She would cry with them when they were sad. She would gently hug them when they needed it. And she more than anyone was so proud of them with their successes. When Momi was in the talent show dancing she was cheering her on. When Kari's band had a gig she was right out front dancing and screaming with the audience. When Momi played a show with the rock and roll band camp she was bobbing her head to the beat. When the girls came home with their boyfriends...she would say "he's so cute". She was truly always happy and proud of her sisters.
She was in total awe of Kari. She thought Kari could do no wrong. Everything Kari did was amazing to her. Very rarely if ever was she mad at Kari. As for Momi she still treated her like a little sister. She would boss her around...she would ask Momi to do things for her all the time. She knew she could always count on Momi.
to be continued...
March 30, 2008
I was just getting ready to go to bed...and Oprah's 'The Big Give" is on TV. The contestants are going around trying to find people in need. One went to the fire station and asked if they knew anyone in need. The contestant was told that there was a family with a girl with Down Syndrome that is in need. He just went by the house and no one was there. The neighbor came out and said the girl just died about an hour ago. My heart broke...I am crying as I write this. She was 22.
to be continued...
March 31, 2008
Mariko being downs had difficulty speaking in full sentences. She may know all the dialogue from her favorite DVD's and Disney shows...but to say a complete sentence quickly and coherently was difficult. However she was able to say certain short statements, and quotes, and funny lines. Downs kids also tended to repeat their favorite lines, words over and over again.
So the following are what I will call Mari-isms....
"Hold on there mister!" (used a lot to get daddy's attention). "He's cute!" (used to describe any male she liked). "She's beautiful!" (used to describe any female she liked). "Ok leave now!" (used when she was done with you and wanted you to leave her room). "ummmm...I don't know!" (used when ever she didn't know what the hell you were talking about, or when she didn't feel like answering your questions). "NEVAAA !!!" (meaning never....used when she didn't want to do something). "Yeah...yeah...yeah..." (used when she's blowing you off). "Zip it" (used when she didn't want to hear it). "Ok...ok...ok.." (used when she wanted to appease you). "I'm not going!" (firmly used a lot when she didn't want to go to school, or anywhere else). "NO bath!" (self explanatory). "Oh Snap!" (When you correct her at something...or she knows she did something wrong). "Whatever!" (used when you are lecturing her or telling her something she doesn't care about. The intonation was different depending on the situation...Whateverrrrrr, whatever, WHATEVER!!!!).
April 1, 2008
Friday's my 50th birthday...a milestone. (I know I don't look 50...hahaha). I'm really dreading it. Not because I'm getting older...old. But because I will not have my baby there to celebrate with. Mariko absolutely 'Loved' birthdays. Anyone’s birthday. She was always front and center when it came to singing Happy Birthday. She always had the biggest smile, and the loudest singing voice, and the best birthday hugs. Her little hands would clap with utter joy. She also loved presents...even if it wasn't for her. The excitement was so overwhelming for her. She just couldn't contain herself. She always loved to help you open presents and squeal with delight at the gift. There's like a tradition in our family after we sing the traditional Happy Birthday song ...we also sing 'You are my Sunshine'. And I think that all started with Mariko. She loved that song. She was/is my Sunshine. I know she would want me to be happy on my birthday so I will try. I plan to go and have a small celebration with Mariko at the cemetery. It wouldn't be a birthday without her. I will have a small cake. I will talk to her about how it feels to turn 50. I will tell her that I'm picturing her up in heaven.. front and center surrounded by Angels (her new friends) singing as joyfully as she usually does...Happy Birthday Mommy! And I will cry with Joy, and hopefully not sorrow this time, picturing her and the Angelic choir.
to be continued...
April 2, 2008
I have to admit that I got angry at my kids today. I just lashed out at them, and started complaining about them to Tom when he came home from work. I said I don't want a birthday party, I don't want anything... I DON'T CARE!!!! I succeeded at making everyone I love miserable. I took out my frustration on them. I just got so pissed off that Mariko could not be here for my birthday. I was disappointed that Kari & Momi couldn't be as sweet as she was...that they weren't her. They're teenagers with attitude. I know it's horrible...I would give my life for them...and I would just die without them. But at that moment when they were fighting with each other over typical teenage stuff... I just lost it! I was just so angry to the point of tears. Tom couldn't understand why? The girls respectfully became quiet because they somehow knew what I was going through. (They didn't get mad at me). He said Mariko would want me to be happy. But I can't help it. I told him I couldn't explain...I just don't care right now. I don't know what to do. I told him the only thing I knew with certainty is that I have to be with Mariko on my birthday. From there I will see. It hurts so much!
I can't stop crying. How can I possibly have a party? How can I possibly celebrate? I know I promised in my heart to Mariko that I will try to be happy. But right now...this night...this very minute...I just can't! I'm so sorry Mariko. Please forgive me Kari & Momi. (I wasn't being fair to you & I do love you both more than life itself). God help me please!
to be continued...
April 3, 2008
Today I received a birthday card from my friend Kathy...inside was a picture of Mariko that was taken a couple of years ago at her daughters wedding. I didn't remember the picture, but it made me cry to see it. It showed Mariko reaching out to a little girl who was just a tad smaller than she was. She was just gently reaching out to touch her checks, and knowing Mariko she was probably telling her how cute she is. That's Mariko in a nutshell ...she was so gentle, so loving, so happy to reach out to others. She saw herself as a young women, and she loved little kids even though she was barely taller than that little girl. She was having a wonderful time, she loved Weddings... and it brought back so many memories. Thanks Kathy and Courty for inviting her to the wedding. She was probably dreaming of her own wedding one day...because she wanted to get married too!
to be continued...
April 4, 2008
Tom & I spent some time with Mariko today to celebrate my birthday. We brought a little chocolate cake with pink flowers because Mariko would have loved that. I talked to her and we sang Happy Birthday & You are my Sunshine through my tears. And I tried real hard to picture her singing along with us in Heaven. And I heard her voice in my memory ...that tiny, sweet little voice say "Happy Birthday Mommy".
to be continued...
April 5, 2008
Our dear friends Sandy and Pete took Tom & me out to dinner to celebrate my birthday. When we came home Kari's band the 'Candy Bombardiers' played a concert for me, including the song Tom wrote for me for our 22nd Anniversary on Nov 30th called 'Keiko on the Beach' about how we met. Kari and her band wrote the music. It's a great song and I love it. It's a beach song (think Jack Johnson style or the Beach Boys). It's not their usual style of music...but they wrote it thinking of me. As usual I think the band is wonderful. Anyway.. they then brought out the cake and sang Happy Birthday. Then they played Bob Dylan’s 'Forever Young'. The chorus goes "May you stay forever young"... and of course I thought of Mariko and how she will always be forever young in our memories because she passed away at just 21... and I cried! Everything I do, everything I think always comes back to Mariko. Everyone just knew and they quietly comforted me with their loving presence. They knew they didn't have to say anything. They just knew that I needed them there, and they did everything they could do to make it a special birthday in spite of our loss. I love these people. I love that they care about me and my Mariko. And I know they were also hurting in their own way, and being together gets us through the days.
I want to say a special thank-you to my friend Lynn for giving me a wonderful & thoughtful gift. She made me a beautiful Hawaiian print blanket and matching pillow. The blanket is lined with vinyl. She knows I spend almost every day with Mariko for lunch and I was looking for a blanket to sit by Mariko. I needed something that wouldn't get too dirty if the grass was moist, and also after much use. This was the perfect gift. Tom, Kari, & Momi gave me new beads for my Pandora bracelet. A beautiful deep ocean blue Murano Glass bead & a gold/sterling silver Queen Bee bead. They also gave me the 3rd season of Battlestar Galactica & Galactica's Razor (my favorite series), and finally a Holy Mother Statue for Mariko's headstone to look over her (it's beautiful). Tom also took me to Dinner and Breakfast this weekend and had this small party. My sister Lou & Manny gave me two pink Murano Glass Beads to represent Mariko (who loves pink), and a sterling silver snake bead which represents Healing. The teens in the band gave me a flower sterling silver bead, and a sterling silver bead with a dangling guitar to represent the band and music. Kathy gave me a beautiful angel book marker with pink beads because she knows I love to read. Thanks to all my other friends for remembering my birthday and wishing me well. It's been a wonderful birthday and I hope Mariko was looking down on us smiling, clapping, and singing along. I like to believe she was with us, because that's what made it a perfect birthday.
April 6, 2008
We just got back from visiting Mariko and the sun is coming up. Before we left it was looking gloomy...like it was going to rain any minute. But it didn't...and the sun came out. I like to think that Mariko brought the sun out just for me because she knew I get real down when it rains. Thanks Mari!
Anyways...Momi is watching 'The Wonder Years'...I love that series. I don't know if anyone remembers that show, but it reminds me of my own wonder years. When I was young in the late 60's ...early 70's. I bought the complete series on Ebay because it has yet to come out for retail sale. Someone had recorded the complete series and made a series of 9 DVD's...and I got it for $40 a few years ago. It's not the sharpest quality...but it's still great. I got my kids hooked onto the series, and they weren't even born when that show was on TV, or they were babies. I love watching it because it's a feel good series. At least for those that are around my age to appreciate or even remember that time. But it was such a cool series that my kids love it too. They are going through the same things now that Kevin Arnold, Winnie Cooper, and Fifer are going through. Youth and the confusion, joy, laughter, love, longing that all young people go through. I miss 12...I miss 16...I miss youth.
That's why I always loved that Bob Dylan song 'Forever Young'...because even though I'm 50 now...I don't always feel like that. I want my kids to always feel forever young. I still remember how it felt to be 12 and having my first crush on Jimmy Woods. I remember what it was like to long to be loved. I remember the butterflies when our eyes met. I remember what it was like to want to fit in & wishing I could be part of the cool crowd. I came close but I was basically on the edge. But it was still my Wonder Years. To me it was always such an innocent time. And the music was the BEST! Never would I have imagined that my future would be what it is now. Never would I have imagined being married to Tom (who is and always will be my one true love). And having 3 beautiful daughters...and losing one so young. I am blessed...this is my Life. Because I know what Love is. It's wonderful...it hurts...but it also means never giving up. I will love Tom forever this I know. I will love Kari, and Momi forever as well. And I will forever & ever love Mariko. to be continued...
April 7, 2008
As you know I spend almost everyday with Mariko...and I thought I'd share with you about what a dork I am. hahaha.... You know how there are a lot of mausoleums around Mariko? Well when I drive up I always wave at the Angels and Holy Statues that are on or around a lot of them. Why? I don't know...their my friends. I also take the same path to visit Mariko...so I say Hi to Eleanor & Edward, Peter & Annie, John, Sophia and several other folks that I pass by that have been there for years...some even a hundred years. I don't see a lot of flowers on these old time crosses, mausoleums, headstones because they are so old...so I'm thinking they don't get a lot of visitors. So I just want to say a warm hello and to let them know someone is thinking of them. Yes that's just me! haha...
Anyway a couple of graves over from Marko is a young police officer. His name is Murphy. He passed away in 2007. I always greet him by saying "Hi Murph ( a perfect Irish cop name)...thanks for watching over my girl". Now if you look at Mariko's resting place it is sooooo Mariko. Very girlie with pretty spring flowers and plants and the Angel Statue, the Holy Mother statue, and a cute little angel praying. Then you look over at Murph's...he surely must have been single, and it must be his buddies from the police force that visit him. Sure there are flowers and plants...but they are randomly strewed about. There's a glass of Guinness Beer someone left for him...but the piece de resistance' is there is an empty beer can with flowers pushed into it. It is so cool! I just think this is the fun loving guy with a heart, because he was obviously loved...and he's just the guy that would protect and watch over Mariko. So here's to Murph!!
to be continued...
Today while I was visiting Mari at lunch I ran into an old friend. She lost her son last year in an automobile accident. I was at the funeral. Anyway I stopped briefly to talk to her and give her a hug. She said something that I really don't begrudge her. She said that it was worse for her because it was so sudden and unexpected. I truly...honestly feel broken hearted for her. She is in so much pain. We've cried together. But to me it's really not worse because it was just as sudden and unexpected for me. Yes... we were told all her life that she was ill and that she could die any moment. So for 21 years I lived with fear...but as each day went by we just LIVED. We didn't expect her to die on January 8th...we didn't know that was the day. We thought yes she was sickly but she always pulls through. So even though I do sympathize ...I do understand... In my heart losing any child, no matter if the child was in the womb or 7, 16, 21, 45, or 60...if you out-live your child the pain is still unbearable for any parent no matter the circumstances.
to be continued...
April 9, 2008
I'm watching American Idol Gives Back...And Miley Cyrus from Hannah Montana opened the show. I cried. Mariko loved Hannah Montana. We would automatically call out to Mariko and tell her come quick...Hannah Montana's singing on TV. She would have run out of her room squealing with joy, and would stand right in front of the TV dancing...her little hand would be closed into a fist and her tiny little thumb would be up (her microphone), and she would be pretending to be Miley Cyrus singing on the stage. She would be tossing her hair around (at least she would try), and she would be running around the living room like Miley. She would not be able to sing all the words, but she would hear a word or phrase and sing it out loud. And then she would strike a pose at the end...just like Miley. And we would be clapping and cheering for her. She would be laughing and breathing hard. She would be so happy. I can picture her right now.
to be continued...
April 10, 2008
I've been putting off talking about this...because it's so painful. But I have been waking up with nightmares crying. It happened again last night. It still haunts me.
The day before Mariko passed away she was crying because her daddy woke her up from a nap. We didn't want her to sleep through the day because she was going back to school for the first time since before Christmas. She came out crying...and I asked her "What's wrong Mari?" And she came up to me and was so sad and tears were rolling down her cheeks. I hugged her tightly and she held on to me sobbing. She said "I'm so tired mommy"...I felt so sad for her and I said "It's OK baby... I know". And I tried to explain to her that she couldn't stay up late. I keep flashing back to that moment. The last moment I really had with her and it breaks my heart. Did she know...was she too tired to go on. Oh my God.... (I can't continue for now....)
to be continued....
April 11, 2008
I have not completed my last entry because it's too difficult for me right now...I can't get past it without crying and stepping back into that horrible day, and the days leading up to the funeral. So I will try again a little later because it's all part of Mariko's life and my memories of her.
Today was a beautiful day. I spent a long time with Mariko because I had some time before I had to meet Tom & then go to another funeral. One of our Pallbearers for Mariko...Big Lou's brother just passed away. I think I was more prepared for this one, because I sat and spoke with Mariko before it, and I was calm. But it's been such a sad year and it's only April. I don't want to ask God why? I want to have faith that there's a reason that I just can't comprehend, because I need to keep believing that Mariko's in a better place. But again my heart goes out to Big Lou and his family.
I'm trying not to think about all the deaths that have happened lately...it's like coming in waves. I hope the tide has receded for a while....like the tidal-wave of Thailand. It's too sad right now. But the loss in numbers of people and destruction is nothing like it was after that tidal-wave & that of Katrina. We watch in disbelief & shock. Those poor people. Their pain was so difficult to witness, but it was still not my reality...until now. Is God trying to tell us something?
to be continued...