I see you everywhere….

Finally,

after 15 years passing by when a man who becomes my husband now said that he would like to invite me coming to one of beautiful islands in Indonesia: L o m b o k island. It is located next to Bali island [as everybody in the world knows Bali lol…;)]. Even i have already forgotten what he said. Not only because we never thought we could afford to go there but also too many things to do and to think of.

Well… however, suddenly… after my exchange students from Japan visited there, guided by my friend, Mo n fam, and they showed their extra happiness, both in words and eyes…seemed i was pulled out to the pool….:)

Well well well…..thanks God, as if he planned and prepared for anything, especially about time and heart to leave, to get a small escape from routine and to know, everything was alright when i came back home.

Three of us departed at Saturday evening Dec 3, but when we were there…apart from our nice tour guide, the three of us, our family, completed to be four again. Hmm…Sorry i couldn’t explain in words… but i see her everywhere… not only in the kids’ face, but in all the beauty of the earth as well. In the face of ocean, cloudy sky, high or calm tides, hills and valleys, just like my favorite song…can you paint with colors of the wind…..

So, I dedicated all those beautiful pictures here for someone i miss in the rest of life…. the little one who changed me totally. I know, I m not same person as before I knew her. Even now in every beauty i see the pain, vice versa. Don’t ask me why… it’s too complicated. Just enjoy those pictures, okay…..

those days were cloudy though, but stilllllll…. clouds couldn’t hide the nature’s beauty….

And if you wonder where the place is, that is Lombok island, not all parts, just few of them.

Special thanks for best family shots, heart-warming and guiding us there, Mo n fam.

  1. Southern beaches, Lombok : Selong Belanak, Mawun and Tanjung Aan

and also these….

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or this cute pict…

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2. Kenawa Island, Sumbawa

3. Sembalun Village, gate to Rinjani Mountain

4. Western beaches, Nipah and Malimbu [well, we chose the silent places. Senggigi, the most famous *its just too mainstream for us lol*, is just next to Nipah]

Ngelanggeran, Gunung Api Purba [Ancient Volcano] Gunung Kidul, Yogyakarta

Just some pictures….

It is one of Geo-park site located in Nglanggeran village, Patuk, Gunung Kidul regency. Not  so far from Jogja, we took about an hour from UGM to go there…

Well, it’s just a coincidental visit. Yeahhh, life is not always by purpose…. many things are “coincidence” or “looks like coincidence”? not sure though…

But often, one connected to another…at least, in my life… ❤

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.

with-ezri2

 

 

 

 

 

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

Keep moving keep learning

I feel like inside a very dark room,

couldn’t see anything even though just next to me,

I got fever every time and nothing could soothe me,

I feel all my bones got broken so I couldn’t get up in every morning,

I feel my stomach burned but still I wanna eat all of things uncontrollably

Got crazy coz of hectic unstructured jobs that come over me in various faces at the same time, collides one to another and made me really become nothing. And crazier thing is, probably only me felt such a mess world. I feel very stupid why I could not take them easy. On the contrary, I thought why other people could do their best own way but I am caught in a panic room?

Well,  to be honest, I wanna give up in this situation. But how can I? I often feel this is not really me… I saw another world that makes me smile or eager to spend whole time with. But do I have pieces of courage to move there? Or, it just my feeling to escape that is not real me?

I am not very young to be confused by a choice to be one who I really want in the future. I have a son, I have responsibility. But in my messy world, I often lose myself. I need much spare time with myself. I miss me, my real me… like I miss my angel Vella. And, well, thank God, I still have this, my diary.

I need to see, to find a beauty in me, in my life. I need to talk with me. I need to write for me. But I can’t deny the reality, I have to dedicate my life to my family.

Yes, dedication, devotion…

And I ask God and universe to guide me, lead me to remind me coming always into the essence of awareness…. devotion of life….

And no matter what,

though life seemed very hard,

I have to dedicate, devote myself, to celebrate life…

Soooo….

Keep moving, keep learning…

Nothing wrong with my feeling, though I feel it isn’t right….

Love will guide me the way…

Thank God for loving me…and always give me time to learn…. Teach me to give my all of life to be loved by You!!

Gud morning myself, this is your new page of life. Keep moving and don’t worry, you are in a safe way.

9/9/2016

 

Let Hope be Hope

It has been a month over from my last post.

Finally, passing hectic days which really made me crazy. Got panic, high heart beat rate, lost concentration and finally, lost control of myself. Then the thing usually happened to me, that i really don’t want to have, is gaining weight. Haha…. But well, it means i still have many things to learn. And the nice thing is, feel stay young coz of staying foolish to learn controlling myself.

Nothing special in this month, but what I really feel grateful is, my family. Watching my son growing each day, being much more talkative [even sometime uncontrolable], spending playing time together are never replaceable. Then seeing day by day over and everything is alright [what i was frigntened were never happened], is really wonderful feeling. Thanks God for everything.

Aaahhh, and one nice story that I’d like to share now. My son found a disabled bird. Tiny, looks weak and alone. It couldn’t fly properly and seems couldn’t see appropriately either. Crying alone and jumping [not flying] here and there. Perhaps, it was left alone by its family. That’s why we thought it’s disabled. And we call it Hope.

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My son loved it very much. As well as my family did. You all know, Marvella taught me to love unconditionally everyone, everything, especially who/which are considered as unlucky. Right after he found, he prepared rice to feed it. Gave it directly to its mouth coz Hope’s eyes seemed did not work well.

One day I had a work 200 km apart from my city Jogja. And because my son’s school was holidays, and my husband would take us drive, so we went together in a village of Selamet Mountain’s slope.

Well, my son was still very exciting with Hope at that moment so asked us to bring Hope together. Hahaa… can you imagine? Hmm, looking at his genuine face, we could not refuse his request. Well, actually, because of its disability, we were afraid that Hope will be caught and eaten by a cat. Then my husband made a small cage for Hope to make it comfort, and there we go…

The trip took 5 h by car and soon arrived at the host’s house, Brian was asking about Hope, worried whether Hope was hungry and unhappy. Well, actually the view between Brian and Hope was so heart-touching. We could feel the untold love. He brought hope in his palm wherever he go.. To be honest, I worried Hope would get stress because of it. Yaa, it just reminded me a story about a bird saved a fish because the bird thought the fish was so cold everytime stay in water. I asked Brian to let Hope free or just to let it stay in its “cage”. But, well… could you give a piece of advice to 5-year-old boy?

And it happened finally. I dunno whether Hope was got stress because to much be touched by Brian, or just because of its disability, its condition and naturally getting worst, but long short story, Hope came to die in its cage. Oh noooooooo…..

And as my husband told Brian about it, spontaneously, he screamed and burst into tears. Hmmm again…. we had so heartbreaking feeling…

Yaa, I know it’s too far if we compare to our feeling when we got loss of Marvella. However, I can’t deny… the painful feeling is just same.

We love Hope. We lose it but Hope,the disabled bird, just taught me not to lose Hope. Life keeps going on. Happiness and Sadness just the same, come and go to bring us to our equilibrium.

And looking at the picture?

Aaaahhh…..

We love you Hope…

and Let Hope be Hope….

 

Celebrating Life

How do I define that phrase?

Eventhough I realize that life is a special gift from heaven, from God, but well… me… I often didnt know how I should live… Many things happened, bunch of routine works absorbed me, however sooo many times I failed to determine the meaning.

But, thankfuly, God is always good all the time. He gave me all signs I need to be grateful… Especially through my beautiful angel Marvella and her friends.

This week, we are trisomy 18 Indonesian family felt our heart was so heavy. We understand that heaven must be the best place which there is no pain, there are no tears, there is no sadness anymore, however, farewell with our lovely daughter is always heart-breaking. Nothing is more unbearable than a grieving heart of mother. Well, i know our tears will never dry for our daughters, not because of a broken heart, but its really a price of love, to honor their life journey, their fight, their growth as well, and as a price how we miss them endlessly.

Despite of all grief feeling, I am really touched what my friend will do to celebrate her daughter life. Release baloons to heaven…

Yes, celebrating life…

Not as a sadness expression because of our daughters went to heaven, but celebrating their life in earth, together with us.

Well, its not easy, I know, even I couldnt express my feeling better, I have no words for all, but I will remember this, and always keep in heart and mind, celebrating life.

Her daughter Dahlia, a Trisomy 18 baby, is my teacher about hope, about life, about love, about struggle, above all, about celebrating life.

And today, because of her, I change the title of my blog into Celebrating Life, as I want to learn to do so.

Marvella taught me, and forever teaches me… with whatever small things happened,

Thanks adek Vella, help me always, to celebrate life….

@sending this pict to Dahlia Denise, Angel Trisomy 18 in heaven. She kicked trisomy 18 for 3,5 years bravely..

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Colors of the wind

Yes, exactly, that is a title of song. A song that really hold my heart today, or lately. I am thankful that I have this blog to write what I feel, as my diary. Most of the time I am full of thoughts bouncing around in my head, and gratefully, with all words in my hand, the world just gets kinda quiet..

The song [from Pocahontas, Disney Movie] really touched my heart and fill my head.

Have you ever heard the wolf cry to the blue corn moon
Or asked the grinning bobcat why he grinned
Can you sing with all the voices of the mountains

Can you paint with all the colors of the wind
Can you paint with all the colors of the wind

A song written by Alan Menken and Stephen Laurence Schwartz, published by Walt Diseney Music Company

Then bring me all memories that I thought it was a dream, but it was not. Two years ago, when I delivered a baby girl with trisomy 18 on the way to hospital, yeah in our car, battled aginst time, and she didnot cry at the first time she saw the world. I still often watched what happened to us like a movie screened in front of me. Then during all 45 days we spent in NICU, with all heartbreaking days… I do still feel it. She got heart failure, so then she got her breathing tube, got intubated, and I saw her cried with tears [thats my first time I saw her tears..] It was a nightmare for me, till God showed me another soul adventure I had to conceive in days during her 7 months 7 days. I fought against myself, and I failed. I lost.

Then finally, without a sign, without a message, she gained her wing in the way I never knew, I never predicted, even I didnt see her went back to heaven. Yaa, she flew to heaven with nobody beside her. She never said goodbye. Its too painful. Not because of her nor her journey. But because I failed to recognize her as a true angel from heaven. I questioned why it happened to me, insisted, demanded her too much to be healthy instead of accepting her, instead of loving her as she was….

I was a heartbroken mother, not because of her, but because of myself.

Well, life must go on. I have to continue my life with whatever my guilty feeling. This is me, and she have already changed me to the new one that I didnt notice before. Now, I enjoy my staying alone, myself time, in the silence. I enjoy my grief, I enjoy my sadness with all unbearable and undescribable feeling… I enjoy my broken heart, because deep inside those feeling, I really found a pearl sparkling all the time, the unconditional love. God loves me, not because of who I am, but because He has already loved me since He pictured me. Then, this beautiful song really bring me to her….

Something too sharp stabbed my heart…. not only once I couldnot explain the feeling…. I am dying but I am really happy with that. I became a stranger for myself and I am totally okay with that.

I had jorneys to many places, but my journey to my memories with her is the richest, the most beautiful one I have, and one that I will always have, to be constantly repeated.. as my heart wish for that. The beauty of misery…

Then let me sing this song in my silent mind, and bring back all memories that I called them beautiful now…. Let me cry with myself, as my tears will never dry. No, I am not suffered from grief anymore, I am alright but how could I explain what I feel, sorry….

yeah, what I need now is to paint all with the colors of the wind…

yeah, I should paint all with the colors of the wind

I miss you, Marvella….

a litle too much

a lttle too often

a little too more, day by day

You think you own whatever land you land on
The Earth is just a dead thing you can claim
But I know every rock and tree and creature

Has a life, has a spirit, has a name

You think the only people who are people
Are the people who look and think like you
But if you walk the footsteps of a stranger
You’ll learn things you never knew, you never knew

Have you ever heard the wolf cry to the blue corn moon
Or asked the grinning bobcat why he grinned
Can you sing with all the voices of the mountains

Can you paint with all the colors of the wind
Can you paint with all the colors of the wind

Come run the hidden pine trails of the forest
Come taste the sun sweet berries of the Earth
Come roll in all the riches all around you
And for once, never wonder what they’re worth

The rainstorm and the river are my brothers
The heron and the otter are my friends
And we are all connected to each other
In a circle, in a hoop that never ends

How high will the sycamore grow
If you cut it down, then you’ll never know
And you’ll never hear the wolf cry to the blue corn moon
For whether we are white or copper skinned
We need to sing with all the voices of the mountains
We need to paint with all the colors of the wind

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love you to the moon and back…mommy