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.

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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…

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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…

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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…….

Little Escape: Sambisari Temple

Sorryyyyyyy dearrrrrr, my blog, it has been soooooo looooongggggg….

Yup, I could not manage my time, my energy, my life as well. However, it often happens till I meet my equilibrium and awareness to find myself and come back to my track. Yach, need little mess to be aware how our life is wonderful, and what are really things in life.

Well, thankfully, I am surrounded my beautiful supporter… and with them I had a little escape from my mess to contemplate my mind…

Tara… we went to Sambisari Temple, is located in Sleman, 12 km from the downtown of Jogjakarta. Its only 4 km away from Prambanan Hindunese Temple. Not so far from our home. Its very unique temple, small temple, was built at 9 century during era Hindu Mataram Kingdom under the King Rakai Garung.

It was found newly in 1966, because it was covered by Merapi’s material, possibly caused by its huge eruption in 1006.Well, because we only spent 1 hour there, I will continue my story about Sambisari temple after my second visit. I promise to go there and bring Marvella’s book with us…okaaaayyyyy….

Enjoy our picts now….

 

Welcome October…

I will keep walking, keep learning…..with