when words are not important anymore

Do you ever feel that you wanna say so many things, even too many, but you think that words are not important anymore, then keep them unspoken is your way?

Do you ever feel that all around you are moving, but you feel stuck in the spot  you are standing?

Do you ever feel you don’t wanna do anything except enjoy the loneliness…being alone and isolated..?

Do you ever feel that anything you have, anything in front you, inside you, even all over world, are not important anymore…?

To be honest, I’m in that stage. I don’t know when it started and when it will end up, but strangely i don’t wanna lose such feeling.

Painful yet beautiful!!!

I know its gonna be difficult to understand, but you will… when you see me personally, see into my eyes deeply…that in every smile I have, there is a huge tide inside my heart that is not everyone could understand.

Then came a day I arrived at Kuala Lumpur. Big luck for me coz soon after knowing that I will be in KL, I contacted my dear T18 mommy group, Ezri, and she said she will meet me up on Nov 14, 7 p.m. in the hotel i am staying.

To be honest, every time I meet T18 mommies, I can’t hide my feeling. I am sooo exciting. But at the same time I reach them, hug each other, I lose my words. All the words. It suddenly changed to the feeling, such an indefinably heartbroken feeling. Then our eyes will be watery  when gazing each other. I, personally will always feel amazed to my beloved T8 mommy sister, as I feel her life journey was beyond amazing. Yes… for sure…!!

Can you imagine that you had, faced, period of moment in your life that you think you cannot pass? Every burden that you can’t lift it up? But you had to. No choice. And came into the hardest period, losing someone!! Even you know that you have prepared your heart, second by second [not enough day by day] that someone you are taking care will go… but how can you prepare it? How can a mother prepare her heart to lose her daughter or son?

Ezri and her husband, Muhaimin met me up at the hotel. I hug her tight as if I hug myself. I found myself, my story in her. Bittersweet amazing story we had, really unites us, the trisomy 18 mommies.

Painful yet Beautiful!!! Those two words we agreed to determine our feeling. Well, even we lost our daughters, we don’t wanna lose those words inside us. All the memory with Marvella and Zarifa, our precious angels, are too astonishing. Those little angels made us meet each other in same feeling. And words are not important anymore. Simply, all are beyond.

We spent a precious evening dinner [well, food is just the spice hehe, but not the main menu]. Our story is the main menu, the main course that we really enjoyed.

Having days with Trisomy 18 kids are never easy. Either they still with us in the world or they have gone back to heaven. And we are just lucky persons to have both. Well, up to 3 hours  spending with really full stories are never enough.

What I really feel happy is receiving a book of Zarifa’s life story “28 HARI DI NICU”, directly from them. Start to read with prolog after I arrived at my room, my heart was soo heavy, and again, my eyes were watery, so I said to Ezri ,”I will read your book at home, dear”. I know it’s not easy even to read, but I do know I will enjoy every single word written there. I will dive in every sentence as I dive my own story in it.

Above all, we are really thankful that we are chosen to have special daughters and beautiful angels in heaven.

Painful, yet beautiful.

It is!!!

You will see it when you see eyes to eyes into us.

 

 

 

 

 

What a coincidence, what a beautiful encounter….

Again…

what a coincidence…

what a big surprise…

Our Marvella story was published in a Indonesian parental magazine [Majalah Ayah Bunda edisi no 19, 2016], on October 6, 2016.

How we spent precious 7 months 7 days with a precious heavenly baby Marvella…

How we started everything with minus, more than “knowing nothing“, then frustrated feeling, then fighting against stigma, then accepting the unspoken feeling… Omg… I really want to translate my book into English… crossing fingers having such energy to do so….

what a metamorphosis…

Well, its not perfect metamorphosis yet… but hopefully it comes to there..

And on Oct 11, at night [what a trully coincidence bcoz at that night, till Oct 13 I was in Bogor, only 2 hour away by train from Jakarta], I got an email from nova zakiya, a TV reporter in Jakarta. She said that she is interested in knowing about Trisomy 18 and Marvella, then… long short story, finally we decided a date on Oct 13, in a cafe in Grand Indonesia, just simply chatting about my experience with Marvella.

What a beautiful encounter….

Yup, you can guess…. I am really exciting whenever I get a chance to share about Marvella’s story. Not only about her, but how the kids with T18 in Indonesia are struggling, how T18 mommies are really the genuine researcher of their baby, how smart and great persons they are… love you all my sisters….

Well, taraaa….. 2 hours with a story about Marvella, just like a tap water flowing from an opened one, lol… I said to her…. sorry, everything about her [Marvella], I could remember in detail….nothing loss from my mind.

And, thanks to mba zakiya, at least, she helps me speak up about T18 babies in Indonesia, about one of genetic rare [not absolutely rare; yet complicated…] disorder, and hopefully many Indonesian researchers want to know more, many babies are more well treated, and many families are happier….

And I, myself, will never stop to do my project, raising awareness of Trisomy 18 in Indonesia.

So, thanks again…to everybody who ask me about Marvella.. If you need the book, just contact me…

And above all, thanks to the Earth and Heaven… thanks to the universe…

Jakarta, Eijkman, an Emotional Journey

Suddenly…

I decided to participate a workshop about a plant genome editing in Bogor, 11 -13 Oct 2016. Well, I am a learner, not excluded for something relates to my work. Well, to be honest, its not easy for me [well, perhaps only few percent I understood hahaaa…], but okay, i need it..

so, when the mountain calls, i m going…

Amazingly, among all lecture I had, one really touched my heart… visiting Eijkman Institute, Jakarta. Well, you can go through its official website http://www.eijkman.go.id/about/, and here I copied from its page:

Eijkman Institute is a renewed, non-profit, government funded research institute conducting basic research in medical molecular biology and biotechnology. The institute is located at the heart of Jakarta, the capital city of Indonesia.
The institute has a main mission of advancing the progress of basic and applied research related to molecular biology in Indonesia, with focuses in biomedicine, biodiversity, biotechnology and biosecurity, as well as translating the findings of the research for the benefits of Indonesian community.
The institute was named after Christiaan Eijkman, a nobel-laureate, Dutch-born scientist whose works in beri-beri at this institute in late 19th century leads to the discovery of the first vitamin.

Well, at least you know now what kind of institute it is. Besides its historical, authentic Dutch building, it has very important trace in my life. Well, among many research and labs it has, one made me stop breathing for seconds. Cytogenetic laboratory, a lab which serve a diagnosis in chromosomal disorder.

Yes, Marvella.

Yup, my angel, my trisomy 18 baby, you know, she is always be with me. Everywhere, everytime. She is watching me from heaven, but forever she is in my heart. You wanna know her a bit more? Just click…

I am really enthusiastic in following the presentation there and asking something relates to T18 research. Well, this journey was successful to bring me to the moment 2 years ago. Yes, it was… 2 years, but still… seems it was yesterday. Fresh… in whatever detail, anything about her.

And, I do enjoyed my trip there in my silent, enjoyed meeting myself with Marvella, just through passing the door of a laboratory where some blood samples of Indonesian T18 babies were checked. Yes, i stopped in front of it for a while. Kissing my baby in my mind. Talking with her in my heart. Cudling her in my imagination…

Just imagine, if I could see the person who checked Marvella blood sample…the person who saw her caryotiping figure for the first time…. I just would like to thank… [although inside my heart wanted to know what she/he felt whenever found a baby with T18 caryotipe?… hehe..]

Omg, i miss her too much? How much? Not really so much, but too much….

And thankfully, because of my question in Eijkman visit session, made 3 of my mentors in that workshop ask me to send Marvella’s book… Wow, I am sooo happy to know more people wanna read Marvella’s story. I miss her too much and by that way I can tell everybody how I miss her badly, how I love her finally…….. yes, finally… [do you know what I mean?]

Thank you, Mr. Eijkman… Thank you Eijkman Institute…

if my tears come out from eyes now, it is not because of my grieve…it truly because of a missing heart… an endlessly missing heart…….

Sailing in a boat of life….

Row, row the boat gently down the stream; Merrily, merrily, merrily, merrily; Life is but a dream…

My son and I frequently sing that simple song. Looks simple but it’s so true. Life is but a dream for me. A bunch of surprises, sometimes have no choice to like or dislike..just sailing down a river or even a sea. In odd moments, with no life jacket, yeaahh sounds crazy, but it could happen.. Oftentimes we simply have to pick one, take it or leave it. Difficult? Its very. But once we take a chance to be on boat, then no other option. Try to be merry and keep being aware of what are around us, and also in which dock we should get off, otherwise we will pass it unconsciously. But even though we get off at the wrong dock, its also no problem. Ya, coz every journey has its own adventure, for another surprise, another lesson…. But I know for sure, it’s not as simple as I said… I had many times sunk in my boat…

Two years ago I delivered a very special need baby with a chromosomal disorder called Trisomy 18. Somehow it brought me to where I am now, who is mentally [main part] different. Ya, she changed me a lot. I called it a life metamorphosis.  However, I’m still on progress of it, which I believe during my lifetime [including to be more patient…;)]

And in these two months, I was sailing down different rivers, different countries. Yeah, different journeys. It’s a kinda time for meeting myself up, not only looked at what I could see by naked eyes, but also a time to soothe my own, a contemplative moment to bring me back in thankfulness of each moment I have.

I found this perspective during sailed along Amstel River, one day in June [2016] and Chao Phraya River on another day in July [2016]. Hehe, nice sailing isn’t it?

Well, I could see view around each of theam was different, but both were amazing. Each has it’s own beauty. Let me share some picts here…

The Amstel River is the main river in The Netherlands which run through a city of Amsterdam. We will see the nice unique architectures along the river. Then see everybody there, enjoy walking down Damrak, the avenue lies between Amsterdam Central in the north and Dam Square in the south. Then our group took a cruise trip sailing along the river and… singing along [in my heart though ;)]…row row the boat…..la la la la… 😉

Looked at other people being cheerful having their boat parties, saw some museum buildings, bridges and for sure enjoyed my own journey itself.

Amsterdam Central

unique architectures

gud moments in Amstel River

cruise trip along Amstel river

sailing alog Amstel river

me down at the Damrak

And below are the views when a Thai friend of mine invited me to take a boat trip rowing along the Chao Phraya, the main river in Bangkok, Thailand. I saw mixed of modern architectures and Buddhist temples which were soon obviously noticed.

me in the bank of Chao Phraya

Wat Arun temple, now under construction

another boat

restaurant in river’s bank

inside the boat

Hmm, actually I just feel funny, because I shared my experience in foreign countries, but not yet about adventure in my country’s rivers. Well, I hope having a gud chance to sail along them then share the story here, hehe…

However, this is my life journey, my surprises. Never imagined before that I could experience in sailing there. So, I took the chance, be merry and… here I am.

Suddenly it’s heard a song from Jimmy Buffet,

Shell sinks, dream float

Life’s good in our boat…

Happy sailing in a boat of life, dear friends…

Many thanks to my sister Eka [Jakarta] and Kae [Bangkok]. You made it for me girls…

You came too far, Salted Eggs….

came a short message…

“Are u in your office? May I come to see you…?”

“aaaah, sorryyy… I am in Bangkok now. What’s matter?”

“Nop, I just brought you salted eggs from my town. I have just arrived from hometown after Eid Mubarak.”

“What??? Omg… how nice…. well, okayy….Let my hubby take them from you, okaaayyy….?”

Then here you are, the salted eggs, came from Brebes, north part of Central Java, to Jogjakarta [south part]. Well, it is 252.8 km far away from google map. But can you imagine? Eid Mubarak is the biggest moment that most Indonesian people go home to see family and spend special moments with them. And  can you imagine…. my friend got extremely severe traffic jump from Brebes when he went back to Jogja, the place he studied. So that is the same story with those salted eggs. I don’t know how long he spent time for the traffic jump, but probably normally it took 6 hour. Might be doubled, or may be 10 h? And he went by motorcycle. 10 hours? motorcycle? Yes, why not? It happened… Then I said,

Then I said,

“Omg….its so heart-touching? How come you remember me and bring the salted eggs for me?”

“I remember Brian..”, he replied.

Well, looks something not really big thing, but it’s so special for me.. the attention to my family…. That’s the great thing!

Well, the story of those salted eggs actually just a smal part of a strong bond between me and my volunteer teamwork of Marvella book launching. I called them The Marvelous Team. Started from 12 young people who happily work in my volunteer project, raising awareness of Trisomy 18 through book launching and talkshow. And he, the one who brought me the salted eggs, is one of them. Here we are…

They are students of my university, Gadjah Mada Univ in Yogyakarta. We first met when we have a community service together for horticultural farmers in a montenous village close to Selamet Mountain, Purbalingga Regency, Central Java. Then, when I informed that I have my own project, they kindly joined.

Yes, I am really a lucky person to have them. They are creative, smart and nice persons, worked totally for the best performance of 3 times live talkshow in different time and places. They created all decorations for photos exhibitions, all leaflets, posters, backdrop design, even our Marvella T-shirt design and making, creating Marvella’s video in youtube, [you can simply click on it], moreover give me emotional support during the program. They came to my house twice a week, till late night, to discuss and prepare anything. Well, you see…. how the worked professionally…

And this is the latest talkshow we have to celebrate Kartini [Indonesian Woman Emancipation hero] this year [April 21, 2016].

Well, I know my thankfulness is not enough for them. If there is another word instead of thank to express my gratitude, please let me know…

You did great job guys, not only for me but for all Trisomy 18 babies in Indonesia.

I wish your success and bright shine in life, every one of you.

Well, that’s the story of salted eggs that really came too far beyond….

Thank you Asep for the salted eggs and the story today came from you…

And all of you guys, really deserve many thanks, I owe you much..

Me and Marvella, my Trisomy 18 baby

The readiest topic I found in my mind is about my connection to Trisomy 18. Absolutely, you are right,  it’s because I have someone very special with such condition. As I wrote in my previous note, she is my beloved daughter. It’s not because what had happened to us bout her was easy, even in the contrary, it was the most difficult time our family had experienced. Yet it changed us to do something, a raising awareness of Trisomy 18. For our bond is too strong and will never be broken. Ya, our cutie baby Marvella, has an extra chromosome in number 18, therefore her little body has so many problems.

Well, below is what I took from www.trisomy18.org

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a error in cell division, known as meiotic disjunction.  When this happens,  instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth.  A Trisomy 18 error occurs in about 1 out of every 2500 pregnancies in the United States and 1 in 6000 live births.  The numbers of total births is much higher because it includes significant numbers of stillbirths that occur in the 2nd and 3rd trimesters of pregnancy.

Extra one chromosome at number 18 causes fatal problems in organs such as: abnormalities in heart [Marvella has 2 big VSD], kidney, ureter, lung and diaphragm, pockets of fluid (cyst) in the brain, cleft lip and palate, swallowing difficulty, small skull size [microcephaly], clenched hands, clubfoot [rocker bottom feet], stiff joints, physical and mental retardation, etc.

Marvella’s caryotype

Because of these problems, many people believe said that children with T18 are incompatible with life. Reported that 50% of fetuses with T18 are not be able to survive until the time of birth and the baby boy had higher fetal mortality rate. Although it is said that less than 10 percent of T18 babies are able to survive until their first birthday, some children with T18 can live for years with their families due to great family support and nurturing.

Marvella, from a word marvelous, is really a marvelous gift from God. She had most of the problem listed above, however, she is the one teaches us to live thankfully in every second.

Marvella on her 6th month

Thank God, I wrote a diary of her, from welcoming her birth, during we spent difficult time in NICU 45 days, and then continued our nervous as well as joyful moment at home. I dedicated all the writing to her and really expected someday I could read for her, her own story, as because she failed her 1st hearing test, but I believed she heard in her own way.

Despite surprising feeling after her birth, God patiently taught us that she is a blessing, not a disaster. This starting point perspective later changed me personally and my family, creating a different story of life and love. It’s a complete story of encounter, struggle, love, hope, tears, emotion and missing feeling which were lovely mixed with the limitations of knowledge, concerns, and fears, repeated day by day.

Well, I battled against time finishing the book, 4 months, 5 months, 6, finally 7 months, I finished. Being gladly telling her that I am done with her book….her life story was different. She seemed just waiting for me to finish the book. She gained her wing on her 7 months 7 days…..

Marvella Book in Bredenburg Berlin

It’s a pearl; when the prediction of death is defined as a special call of life duty. What we had really taught us about giving and receiving are just two sides of one coin that always come together. Life is really beyond of logical thinking. A bittersweet feeling, sweet painfulness, bitter taste but so relieving; we felt all as the same.  It’s not easy to explain, but we take it as one journey of life. Then for me, it came to a metamorphosis of the sense of losing a child, a grieving mom, into a thankfulness for the gift of life from The Almighty through her.

Brother and sister

Yes she is, our butterfly, our angel, our guardian…

Love her to the moon and back…

Miss her endlessly…

And deeply thanks dear Marvella, you fought to see us in this earth…

Happily ever after in the heaven, you are just too precious to live in the earth [April 11 – Nov 18, 2014].

love marvella

started talking

the only pict we have

Love you endlessly, mommy…