November 26, 2019

Parenting is tricky. I myself have only been a parent for 7 years which means I'm a newbie compared to those with grown-up children. Kita selalu dengar orang cakap- "dulu aku membesar gitu gini, aku turn out okay je" atau "mak bapak aku dulu buat aku gitu gini, aku alright je." Hakikatnya, benda biasa belum tentu benda betul. Old ways (or new ways) are not always the best. There's room for improvement, no matter how experienced. Buang yang keruh, ambil yang jernih. Parents are only humans. Parents make mistakes too. Most mistakes began with good intentions, tapi niat baik tak menghalalkan cara.

Through my experience of consulting and educating parents of MRKH girls, biasanya ibu bapa ni ada dua jenis: 1) Jenis tak nak deal with the issue, comfortable staying in denial, tak nak panjangkan cerita. 2) Jenis panicky, protective, berfikir jauh ke kutub utara. Jenis nombor dua ni yang selalu tak benarkan anak berkahwin. "I don't want my daughter to get hurt." Ibu bapa pada anak yang normal pu...

November 23, 2019

I must be honest- speaking about redefining family, marriage, parenthood, and motherhood to THE Lembaga Penduduk dan Pembangunan Keluarga Negara (LPPKN) was scary. I'm talking about a conventional government body here. Tapi ini perlu. Sebab saya tak boleh buat seorang diri. Kerja membentuk mentaliti masyarakat bukan kerja satu orang atau satu hari. And this isn't just for MRKH Syndrome, but all DSDs (disorders in sexual development) that cause infertility. Infertiliti tak buat kita mati. Asal selalu berbalik pada asas:

Allah Maha Baik.
Maksudnya, apa pun bentuk kejadian kita, ada hikmah dan kebaikan di sebaliknya. His test is His love. His plan is the best. Just because you don't see the kebaikan and the hikmah just yet, doesn't mean that it doesn't exist. Tuhan tak pernah jadikan seseorang / sesuatu dengan sia-sia. Dia tak cipta kita untuk aniaya kita. Berhenti bersangka buruk.

Allah Maha Kuasa.
Maksudnya, kejadian kita ni macam-macam. Beza-beza. Ada orang beranak ramai. Ada orang ber-a...

November 21, 2019

Usai sesi perkongsian sindrom MRKH di Lembaga Penduduk dan Pembangunan Keluarga Negara semalam, saya dihubungi pegawai dari Bahagian Reproduksi Manusia. Beliau mahu bekerjasama dengan saya untuk program akan datang. I actually read "Bahagian Reproduksi Manusia" with sci-fi films in my head. 😂 Never thought I'd reach this point. Alhamdulillah.

November 20, 2019

Rasa amat bersyukur diundang untuk bercakap tentang sindrom MRKH siang tadi di Lembaga Penduduk dan Pembangunan Keluarga Negara.

These are the key people. The National Population and Family Development Board. It was full-house and none of the audience had ever heard of MRKH syndrome before. Or any other DSDs (disorders / differences in sexual development) for that matter. I am so grateful that today, they know and they learn.

One step forward. Slowly but surely. Alhamdulillah.

#sindrommrkh
#mrkhmalaysia
#mrkhsyndrome
#mrkhawareness

bit.ly/mrkhmalaysia

November 19, 2019

Dari Jakarta ke Kuala Lumpur, Suci datang mencari dua orang adik lelakinya yang bernama Alias dan Taib. Tiga tahun mereka terputus hubungan akibat pertelingkahan besar yang berlaku di antara adik-adik dengan bapa. Sebuah keluarga yang terdiri daripada lelaki-lelaki keras prinsip dan perempuan-perempuan pendamai. Bapa sudah keuzuran, ibu makin kerinduan. "Iya, dik. Bapak kita sakit. Makanya aku udah janji sama ibu, aku harus membawa kalian berdua pulang. Yuk pulang, dik. Kita jangan bertengkar lagi. Bapak udah ga marah-marah."


_


'Suci'
-Satu gerak balas terhadap puisi Kakilima Kota karya T. Alias Taib. (Nama Suci diambil dari puisi Lampu Kota.)

November 18, 2019

Ikhlas. Best student in social skills, apparently. You are always different than me. Than your fathers. I secretly like that about you. You have your own personality and characteristics. I like that you love everyone in your life and acknowledge everyone through your do'a. In return, everyone who knows you loves you, and it has always been your rezeki - to be so easily accepted and loved by many, yet owned by none but Him. You have more parents and grandparents than anyone I know, and all of us would die for you if we have to. The same can't be said for just anyone, and in today's world where so many kids are starving, hurting, and begging, I am extremely thankful to God that my baby has been blessed with love, health and happiness, families and friends. Syukur alhamdulillah.

November 17, 2019

Dalam banyak-banyak consultation sessions (Skype and face-to-face) yang saya pernah buat dengan pasangan MRKH (isteri / tunang menghidap sindrom MRKH), ada satu pasangan ni saya paling tak boleh lupa sebab mereka kelakar dan comel. Si isteri jenis pessimist, panicky. Si suami pula jenis optimist, tenang. See- in any consultation session, adalah perkara biasa untuk suami isteri berbalahsayang di depan saya. (Berbalahsayang maksudnya berbalah out of concern for each other, not out of rage.) Selalunya saya senyum saja... sambil cuba bawa mereka kembali ke perbincangan. Saya bukan kaunselor JAIS; saya cuma MRKH advocate.

So this husband and wife, like many others, also argued in front of me. Si isteri geram agaknya tengok si suami tenang, sedangkan dia rasa macam nak pengsan bila dapat tahu dia menghidap sindrom MRKH. Si isteri mula bisik membentak: "Awak tak faham, awak takda dalam badan saya ni!" Si suami cepat-cepat memujuk: "Saya faham, yang... Saya pun takda rahim..."

🙃😂🙃😂

Sumpah kal...

November 13, 2019

If I have to choose between a thousand ringgit and a hug right now,

I would choose a hug.

A long, warm hug.

November 12, 2019

Mulut orang kita ringan kalau bab mengata atau meneka orang lain sebagai khunsa, pondan, dua alam, dan sebagainya. Cuba kita ringan juga belajar bab sex education dan gender, serta kepelbagaian jenis kejadian manusia - lelaki dan perempuan.

DIFFERENCES IN SEX DEVELOPMENT (DSD):

MRKH SYNDROME

Normal karyotype 46 XX. Normal ovaries and eggs. Tiada rahim atau rahim tidak terbentuk sepenuhnya (tidak berfungsi). Laluan vagina untuk sexual intercourse tiada atau hampir tiada (2/3). Perlu dilation therapy atau pembedahan pembentukan vagina. No menstruation. No pregnancy. Possible abnormalities in kidneys, heart, skeletal, hearing.

SWYER SYNDROME

Ada karyotype 46 XY (usually present in males) tapi rupa perempuan. Raised as females, identify as females, dan ada kemaluan perempuan. Ada rahim dan tiub fallopio, sama ada normal atau kecil daripada biasa. Tiada ovari / kelenjar reproduksi, yakni tiada telur / ovum. Boleh cuba mengandung jika menggunakan telur / ovum dari penderma.

COMPLETE ANDROGEN INSEN...

November 11, 2019

I've always loved being invited by universities / colleges and it's always a pleasure to share everything I know, from creative writing and performing arts to advocacy and more. Alhamdulillah thank you for having me, @litsfestivalmy. I hope it was beneficial to many. So cool to discover that your lecturer was my colleague! Lucky you.

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