My God,
why are You so far from my cries?
I’m crying out by day and night.
I don’t find any rest.
Why You don’t answer?

I’m despised,
the German Embassy in Jakarta was heartless
and refused to grant a year visa to my parents.
I’m disheartened,
when people are staring and laughing at me.
I’m dismayed,
DIPG warriors I know are dying and one-by-one is passing away.
I’m distressed,
of all the treatments and uncomfortable side effects.

DIPG pinned my arms and legs,
chained my neck,
pulled apart every joint in my body.
My strength is dried up.
I feel discouraged.

My God,
me and my fellow DIPG warriors,
we are on the dust of death.
I feel misaligned and distorted,
Your goodness and our sufferings,
Your mercy and our pain.
We’re climbing a rock wall,
we’re slipping and losing our foothold.

feels like I’m falling apart.
No coherence and cohesion,
in my mind and my heart.
Image of anxiety and anger,
isolation, pain and grief.
I have no vitality, no vigor.
I can’t hold it together anymore.

don’t be far!
You have created me,
You have made me trust in You.
You have been my God.
You’ve always cared about me.
You’re my strength,
come quickly to help me,
comfort and strengthen me.
Rescue me.

You never put to shame,
those who trusted in You.
You have proven Your faithfulness.
Do it again, LORD.

I have witnessed Your grace and mercy.
You never scorned the suffering of Your children.
You never hidden Your face from me.
You have listened to my cry.
You have recorded my misery,
collected my tears.

I flung to You.
I will be still,
in Your sanctuary.
I will come out the dark night of my soul.
From You comes the theme of my praise.

Wether I’ll see answer in life or in death.
I put my trust in You.
My savior, LORD Jesus, 
Your life, death and resurrection has identified with me.
I will forever proclaim 
You are a good Father,
who loves us,
who is here with us.


6 Replies to “MY PROTEST”

  1. Dear Titien,
    Holger the chili plant from your sink here.
    I can feel your desperation, wishing I could offer more than just words of comfort and compassion.
    I feel pity for those who stare and laugh at you. They lack basic empathy and behave like little kids, ridiculing everything which is different instead of being curious and open.
    You deserve to have your family and close friends around you, especially now that DIPG is hitting you hard and relentless. They cannot take away your pain and frustration but they can add love and closeness to counter these dark feelings.
    I cannot understand the visa denial from the German embassy. Weren’t they aware of your condition? Can’t your parents at least get the usual tourist visa to be able to stay a few months?

    Whenever you feel miserable, don’t hesitate to reach out to the ones close to you. You’re not a burden, you’re being loved and I am sure they will always comfort you.

    All the best wishes, hugs and love

    PS Did you start to grow new chili plants already? 😉

    1. Hello our talking chili 🌶 ,

      I was so delighted to receive your message!
      Thank you for being so connected though we never met. I feel truly encouraged by you.

      In January, after radiation, my parents applied for a year visa, with a supporting letter from my doctor clarified my hospice condition, and a letter from my husband. Unfortunately, the embassy ignored our request and granted tourist visa which expired in 3 months. So my parents will come in March for 3 weeks, and back home before the expired date.

      Reason why we want to apply for one year visa, because we can’t predict my health condition. I want my parents to be able to book flights whenever I need them here. Without visa they can’t book flights. Anyway, my parents should apply visa again in April 😞

      Yes, I am fortunate to have Tobias and friends who listen and love me. Also through immersing myself in the Scripture and through writing, I feel comforted and climbed out of this desperation sucking-mud monster.

      This year I will focus on the existing chili plant, hopefully it’ll again flowering and fruiting, bringing me a burning pleasure 😂

      Maybe, we will have a brother or sister for you, coming out from the sink.

      Have a nice week Holger! ☀️😊

      1. Hey Titien,

        you touched a nerve in me with your blog and your personality that shines through all of it. I feel blessed having the chance to stay in contact 🙂

        A truly heartless and bureaucratic decision on behalf of the Germany embassy. Such arbitrary decisions really stir up anger inside me.
        However, seize the precious time with your parents and make the most out of it as you possibly can. Probably unnecessary of me to even mention that, I guess.
        Enjoy the spring time that is finally setting in, bringing sunshine and casts away feelings of melancholy.

        Yes please, I want a baby brother – and call him Jens, so it’ll concur with my reality 😀

        Hope to read many more of your blog posts 😉

        You too have a nice week!
        Hugs n love

  2. Hi Titien.
    Although we have not written much recently, we want you to know that we think about you and Tobias every day.
    Hugs and smiles from Gavin and Sònia. 😘😁🤗

  3. Dude, that sounds creepy. So, we’re stuck on your mind?
    Just kidding 😘 Thanks Gavin, Sònia.
    Hugs and love,

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