Cabaran membesarkan Irfan..

Assalammualaikum

In the previous post, I was saying 'kalau ada rezeki' I will share about our challenges in raising a child with disability and how we manage them physically, mentally and emotionally. But then, I thought, 'why should I delay?'. There is nothing to hide, no worries about others talking, because everyone knows about him and there are many other parents with disabled children who may search for parental stories and experience for their own motivation and preparation. Plus, saya pun seronok berkenalan dengan ramai orang baru. 

Aktiviti mingguan Irfan di Spa Terapi al-Fateh

Assalammualaikum

Haha! Again, I've been typing and deleting and type and delete and type for a thousand times already. I'm losing my writing skills I guess.  So, what's new for everyone? I hope everyone is having a great time. Setiap hari adalah hari baru untuk kita. Take a chill pill. 

Entry blog saya harini ibarat tribute buat Kak Ija, pengasas Spa Terapi al-Fateh sempena birthday dia beberapa hari lepas. Spa Terapi al-Fateh ni adalah re-branding daripada nama Pusat Stimulatherapy Klang. Untuk segala detail rawatan, lokasi, hari dan waktu operasi, temujanji dan macam-macam lagi boleh click link : Spa Terapi al-Fateh.

Lissencephaly and Muhammad Irfan

Assalammualaikum

Everytime, whenever I tried to post about Irfan's health condition, it took me a while to write then delete the post and write again. It was just so hard for me. I'm worried if by sharing about Irfan, people may think that I'm in need of symphaty or not being redha with his condition.

But seriously, my intention is to share my experience raising a child with lissencephaly and get connected with new people throughout the world. Please, don't judge me from my writing.

His recent emotional development that caught our attention

Assalammualaikum.

Still remember my beautifully written story of our child from heaven, Irfan? "Muhammad Irfan, a story of a beautiful boy of us.." Just a quick recap for those who still do not know of his health condition, Irfan was first diagnosed with microcephaly (a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age of his). After a year, he was then confirmed with lissencephaly (which his brain does not fold properly, a cause of having microcephaly). And so, because of the condition, his growth development is delayed, including his emotional development. 

But! Just recently, he has been showing reactions towards voices which we believe that his emotions has developed and ready to show them off!! Honestly, I am very thrilled with his new development! Why not?? It's huge!! Betul tak?? 

Seeing him smiling and giggle is considered now as a norm. He can already smile and giggle since a year ago. But for the past few days, he started to show how sad he is when we raised our voices. Take note please, we did not shout at him or shout towards one another. It was just during that particular time, my husband was calling for me from the toilet (and I was at the living room) with a loud voice while holding him. Ya Allah. He made that very funny sad face, and a second after he started crying, loud one! Haha! And it has happened 3 times. 

From that incident, we never raised our voices anymore. Because looking at him with that sad face really touched my heart. I just don't want him to feel sad, not anymore. At the same time, I am so happy to witness the progress. 

Muhammad Irfan, a story of a beautiful boy of us..

Assalammualaikum w.b.t.

Alhamdulillah, praise to Allah S.W.T. the Almighty, for giving me the time and chance to write about something so dear to me. It took me a while to gather the courage to finally put this in words. It is the story about my precious son, Muhammad Irfan. I have kept this story to myself and family previously, but now is the right time to tell.

Telling this story feels like revisiting an old wound, painful and something that I would like to avoid. But I know this is the reality and being brave means being able to tell it without hesitancy. Truthfully, I don’t know where to start. In fact, while I’m writing this, I was afraid. Afraid to be labeled as someone who is looking for sympathy. Was it the right thing to do? In all honesty, all I want was to share my experience, especially to those parents who are in the same boat as us.

This is a story about Muhammad Irfan.

October 13^th2012, was a date I could never forget. It was the day he was born. It is true, what they say about labor; the long hours of agonizing pain, the anxiety, it felt like you’re fighting a battle, only today, I’m bringing another life into this world. God is great, the all knowing.

The moment when he was put on my chest, I was overwhelmed with this undefined feeling. His eyes were searching for mine, and when they met, I knew I had fallen in love with him. Alhamdulillah.

A short while after that magical moment, he was taken by the doctor for assessment. My battle, however, wasn’t over yet. I was bleeding profusely after the delivery and they had to take extra measures to stabilize me. The pain was unbearable. Despite being in the labor room for more than 10 hours, in my mind, I only think about my beautiful boy. Suddenly there’s this unsettling feeling inside of me. My maternal instinct was trying to tell me something.

After my condition had stabilized and transferred to the ward, I requested to hold my beautiful baby. I want to shower him with kisses and hug him with all my might but things were delayed. My mind started racing with doubts, thinking all the possible things that might happened to him. Worries overcoming me.

Awhile after, he was brought to me by the doctor. I was trying to keep calm and push out all the negativity filling my head. The doctor looked at me with her sad eyes, and placed my beautiful boy next to me. The subsequent words coming out from her mouth broke me. “Darleen, I hope you could be calm and strong with what I‘m going to tell you. We did few tests on your child and we found that his head circumference is smaller than the normal baby. We expect there is an abnormality in his brain.”

I looked deep into her eyes, trying to hold my tears, trying to digest the information, trying hard not to scream. But at that moment, being strong is not possible.

“I’m really sorry for saying this, but we expect the child to live between 2 weeks to 2 months because of the abnormality.” I felt my world collapsed. Tears gushed out like a bursting dam, all I could do was kissed and hugged my baby, told him that I love him dearly.

The doctor hugged me and excused herself after that. My husband and my parents were astounded, speechless. My husband, Fandy, hugged me and whispered words of encouragement, asking me to be strong and reassured that he’ll be there with me at every step of the way. Mama hugged me next. I know deep down she wished to turn back the time, when I’m just a small fetus, in her womb, hoping that I don’t have to go through all this. I couldn’t stop crying. My dad came near us, and said something that became my strength until this day. “Brace yourself, even when it’s hard, because God has made it this way. Your beautiful baby will wait for you in the heaven. That’s His promised.”

Subhanallah! (The Glorified is Allah)

On the 7^th day of his life, my beautiful boy, Irfan, was scheduled for an MRI. My heart screamed, looking at that small fragile body going into the big noisy machine. I couldn’t stop myself from crying. Every step seemed so painful. I could only pray to Allah, for Him to replace my baby’s brain with mine. And if it is His plan to take this beautiful life from me, I am ready. Repeatedly I prayed and prayed for the best.

Allahuakbar, God is the All mighty!

If there is a lowest point of my life, this would be it. I wasn’t completely healed from my Bell’s Palsy, diagnosed few months back. I was jobless at that time, worried sick about Irfan’s condition, and to make things worse, I lost my friends (some, not all), when I needed them the most.

We constantly have countless doubts in our minds. Question of what, why, how, kept playing, with no exact answers, made us more scared than we already were. We received a lot of opinions, perceptions from people around us. Scientifically, Irfan’s brain development was interrupted because of the Dengue Fever I had in my first trimester. That’s the crucial time for baby’s vital organs to develop, especially the brain. Even the smallest slightest error could affect his development.

Alhamdulliah, all praises are for Allah.

Now Irfan is nearing 1 year of age. “Kun faya kun”; Be! And it is! If Allah has made it that way, it will be that way. Irfan is still with us. He can’t sit or crawl or walk or respond like a normal baby in his age, but he is still with us. I am thankful and grateful for that.

We begin to relive our lives. I have a job now and my husband is finishing his studies. Irfan’s treatment, physiotherapy and stimulatherapy do costs us quite a lot, but we will try to give our best for him. As long as we are able and strong, we will work things out for him, for us. Supports from family and closed friends are endless. I admit that sometimes I feel like I’m the luckiest person alive for having this positive people around me during the good times and bad. I know who’s real and who’s not.

One thing for sure, we keep on believing and hold on to the fact that, this beautiful boy, will wait for us in the heaven, as Allah had promised. And our role as his parents is to love and cherish him for as long as he lives. Insyaallah. Our love for him is eternal. Today, his smiles and laughter helps washes off our fears, worries and tiredness.

This sweet beautiful boy of mine is diagnosed with
Congenital Brain Anomaly and Global Developmental Delay (GDD).

Muhammad Irfan, he’s the love of our lives.

Majlis Aqiqah & Cukur Jambul Irfan

#Throwback

Babies & Aqiqah. Seriously kan, ini antara Majlis yang tak mungkin diabaikan, terutamanya buat ibu bapa muda. Haha. Saya cakap macam ni, sebab saya pun sama!! Tambah-tambah lagi saya jenis suka deco-deco. Tak pandai pun, tapi suka. Asalkan puas hati, cun dah!!

As for that, the family and I had decided, the most favourable, suitable and ngam date is on 8th December 2012. Abg Farid and his family is in KL too for the whole weekend. So ngam la kan. 

Alaa.. Korang pun tau la kan, bila dah syiook sangat nak plan itu plan ini. Dari hari pertama bersalin lagi dah sibuk kepoh cari itu ini (mana la mak cik mak cik kampung ni tak binsing. Pantang macam tak pantang).

Item Focus 1:

Anyhow, as an early preparation, I merely focus on the Invitation Card. But mommies!!! This is not necessary. Tau! Biasanya, kalau family saya ada buat majlis ke apa ke, kitorang selalu print Invitation Card sendiri (alaa.. simple sangat. Atas kertas A4 je pun). Tapi, this time around, nak print sendiri, malas. Nak design sendiri, malas! Jadinya, tempah je la kat orang. Terima kasih kat Yuyu la. Sebab dia yang tolong carikan. Heh!

So, ini yang real punya Invitation Card. Atas tadi tu soft copy je.

Theme Color : Peach & Apple Green

 Invitation Card ni saya tempah dengan Farah Kamal (kawan Yuyu).
Design ni, Farah yang buat. Tapi adalah sikit-sikit saya bagi idea. Farah bagi 4 design pilihan. Jadi, saya pilih yang ni!  

Masa Farah bagi kad ni, packaging dia memang macam ni. Cute kan???

Kalau ada yang berminat nak tempah dengan Farah, komen kat post ni, nanti saya bagi phone number Farah (tapi kena minta izin Farah dulu la.. heee)

A Day Before The Ceremony

Item Focus 2:
Tak kira apa pun yang nak kena fokus. Hal yang satu ni tak boleh tak fikir. KAMBING!
Kalau kita ikut hukum dalam Islam. Aqiqah tu ialah menyembelihkan binatang yang berkaki empat ketika mencukur jambul anak yang baru dilahirkan, boleh dilakukan semasa hari ketujuh kelahiran atau selepasnya. Hukumnya ialah sunat mu'akkadah, yang digalakkan Rasullullah SAW.

Fandy dan saya dah niat dari mula lagi nak korbankan kambing. Kalau mengikut hukumnya, bagi anak lelaki mesti menyembelih 2 ekor kambing. Kalau ada mereka yang nak korbankan lembu pun boleh, bersamaan dengan 2 bahagian lembu sahaja. 

Nak dijadikan cerita, sehari sebelum majlis, 2 ekor kambing ni pun sampai rumah. Sedih bila dengar dia mengembek. Tapi.... Not bad handsome jugak kambing-kambing ni. Haha!

See!! Boleh tahan kacak kan? Cara dia pandang.. Macam marah pun ada.

Dia tengah nervous nak masuk syurga agaknya. (hee..!)

Ini seekor lagi. Janggut dia tu mahal. Tapi tak tau mana dorang buang bulu janggut tu. 

Ingatkan nak simpan haritu tapi tak dapat. (haha..!!)

Kambing-kambing ni, orang kampung yang volunteer sembelih. Petang lepas solat Jumaat dorang sembelihkan. Dapat la sikit malam tu kambing panggang, selebihnya buat masak kari masa majlis esok.

Item Focus 3:

Bagi kami perempuan-perempuan ni, termasuklah orang-orang kampung lainnya, kemas-kemas rumah, dan sediakan la sikit bahan-bahan untuk masak kambing tu. 

Makanan takkan cukup lah kalau kita setakat hidang kambing je. Kena la ada makan nasi sikit, kuih muih sikit. Kitorang buat juga buffet. Buffet ni, mama Fandy yang masak. Kita buat lauk kampung la. Baru selera!!

Antara lauk pauk:
Nasi putih
Ayam goreng berempah
Ulam ulaman & Sambal belacan
Asam pedas ikan

Sesiapa yang nak cari tukang masak untuk sebarang majlis, boleh order dengan Mama Fandy. (Serius sedap!!!). Kalau nak, tinggalkan komen kat sini ye, nanti saya bagi phone number Mama Zahariah!

Dalam masa sama, ada juga stall Char Kuey Teow. Bila orang order baru dia masak. Boleh tahan sedap!

Selain daripada tu, kuih-muih la. Ada yang tempah, ada yang dermakan. Kuih masa tu, memang banyak sangat. Pulut nasi pun ada. (Sebenarnya, saya pun tak tau siapa yang order, siapa yang bagi, siapa yang masak. Tau-tau dah ada! Haha!)

Item Focus 4:

Saya dengan Kak Ayu & Kak Najwa jenuh lah pulak balut cenderahati untuk orang surau dan orang marhaban. Kita buat special sikit la untuk mereka-mereka ni. Sebab buat marhaban semua kan. Untuk tetamu lain pun kena bagi juga. Sebagai tanda terima kasih.  

Untuk orang surau lelaki, kita bagi kain pelikat (wrapped..). 

Untuk perempuan yang marhaban, kain ela baju kurung (paper bag.)

(",) Bahulu ni kami bagi kepada semua tetamu yang hadir

(heh, tapi rasanya ada yang tak dapat sebab terlupa  nak bagi).

Bahulu ni beli siap je dekat Bahulu Classic, Hulu Langat. Erm, kos termasuk bekas dan diisi 2 bahulu kecik RM 1 sahaja! Murah kan? Berbaloi dan mudah. Tak payah nak balut gula-gula la apa la. 

Dan ini, Thank you card yang ditempah daripada Farah jugak!!

Sehari sebelum majlis tu kan, memang semua orang sibuk. Tapi saya sibuk kan diri juga jaga Irfan (alasan nak ngelat tolong.. Hahaa!!). Risau jugak la kalau masa hari majlis tu dia meragam, menangis tak ingat. 

Item Focus 5:

Hampir semua keperluan penting da selesai. Tapi, jangan lupa pulak nak kemas rumah. Kena lah alih meja tempat lain. Sebab nak sediakan ruang untuk marhaban dan cukur jambul nanti.

Paling sesuai, kita bentangkan karpet ke keseluruhan rumah. Selesa sikit. Takde lah duduk atas simen je. Kesian kat makcik makcik yang tak tahan simen sejuk nanti.

Tadaa! Jadilah ruang selapang ni khas untuk marhaban dan solat zuhur berjemaah.

Item Focus 6:

Bagi orang-orang macam saya, decoration untuk baby pun penting. Tiap-tiap malam lah asyik berangan nak deco macam mana, bunga apa, warna apa.. bla bla bla. 

Banyak juga saya tengok kat internet, pakej-pakej buaian dan dekorasi buaian berendoi. Harga semua boleh tahan mahal. Dah macam harga pelamin masa saya bertunang dulu pulak. Tu yang bila fikir balik, baik buat sendiri, beli barang semua sendiri. Harga lebih kurang sama, tapi barang-barang kita boleh simpan!!

Ingat tak bunga ni? Kalau datang masa majlis kahwin saya dulu, mesti dapat bunga stokin ni. 

Ini dekorasi katil Irfan. Semuanya DIY!

Katil tu saya beli dekat IKEA. Nice kan..... Katil ni mahal sikit la harga dia, sebab besi. Tambahan pulak, ada design sikit. Tapi jangan tak tau, katil ni boleh ubah suai. Dia boleh dipanjangkan, lepas tu jadi la single bed! Boleh lah Irfan pakai sampai besar..

My favourite part of all. Printed pictures of Irfan! Diabadikan di kepala katil.

Bebola rumput hijau dari KK Home Deco.

Jambangan bunga pasu pulak kami sewa dari Azue Bridal!

 And this!!! Koleksi peribadi saya. Haha! (See!! Berguna kan??)

The Day!

Majlis bermula seawal pagi jam 9. Rumah kitorang dah start riuh kecoh hiruk pikuk seawal 7 pagi lagi. Orang kampung tolong masak kambing, ada yang kemas-kemas untuk final touch. Kuih muih pun time tu jugak lah sampainya. Mana laa tak kelam kabut orang semua.

Pagi tu risau juga Irfan meragam. Kalau nak tau, Irfan memang Raja Tangis.

Tapi Alhamdulillah. Segalanya dipermudahkan. Dia tak meragam, tak melalak.

Cuma towards the end of the day dia start meragam sikit. Agaknya dah panas, penat semua ada.

Awal juga pagi tu siapkan Irfan. Sebab apa-apa pun, kena siapkan Irfan dulu. Irfan pakai baju Melayu. Kain sama dengan papa dia. Warna ikut tema (tak sempat nak ambil gambar). Okay laa baju tu. Ngam ngam.

Ada 2 set marhaban yang kitorang buat pada hari Majlis tu. 

Group Marhaban perempuan sebelah pagi, jam 9.30. Manakala group Marhaban lelaki selepas solat Zuhur. Erm motif 2 kali? Tak sure lah. Mungkin sebab memang style orang kampung Langat ni kot. Tak apa la. Asalkan semuanya berjalan seperti yang dirancangkan.

Solat Zuhur beramai-ramai.

Majlis selesai secara keseluruhan ngam-ngam nak Maghrib. Hoh!! Lega!! 

Malangnya, tak sempat la nak bergambar satu family. Gambar dengan family Fandy pun takde. Bukan apa, kitorang tak tempah pulak photographer. Segan. Ye la. Dah konon nak buat Majlis Kahwin pulak orang kata. Ambil gambar sendiri-sendiri je.

Dah selesai semuanya, esok paginya kan, sebelum Irfan mandi, Fandy botakkan dia. Heee!

Nah!! Botak dah!

Kesayangan kami!! 

Semoga Irfan menjadi anak yang soleh, dan semoga Syurga tempatmu sayang.

Mama dan Papa cintakan Irfan hingga akhir hayat. Selamanya!

Detik Irfan lihat dunia.. (",)

Kesakitan Contraction

This is my first time! Getting pregnant and delivering a baby. Saya memang tak tahu langsung sakit contraction tu macam mana. Ada orang kata sakit yang teramat sangat sampai nak terjun bangunan (oh. seram!). Tapi yang jadi kat saya lain! I don't feel that pain yang sampai nak bunuh diri.

It is 6 pm, 12 Oct. Saya baru je plan dengan my lovely husband nak tengok midnight movie, Aku Terima Nikahnya. That exact time juga, saya rasa sakit pinggang. Sakit selang 30 minit, sampailah waktu Isya'. Lepas tu saya sakit pinggang like selang 10 minit. Saya waktu tu baru lepas order nasi goreng belacan untuk dinner (Memang kuat makan masa pregnant!).

Dalam 30 minit macam tu, sakit tu datang setiap 5 minit. Well the pain takde lah sampai nak terjun bangunan, rasa sakit sembelit. Tapi Fandy cakap, saya genggam tangan dia sampai dia rasa lenguh. Haha! Lepas makan, saya mandi, bersihkan badan semua (like nothing is going to happen in the next 4 hours). Mama, papa and my husband pun siap siap mandi.

Lepas tu, Mama tanya 'Alin rasa sakit tu macam mana? Pernah rasa tak? Sakit yang sangat ke? Mama tak boleh tolong, Alin yang tau badan Alin macam mana'. Saya kemudian fikir balik, sakit kali ni lain macam sikit, terus la semua bergegas siap-siap angkut beg-beg bersalin dan baby sekali. (Dalam hati, dup dap dup dap. Nervous laaa kalau betul-betul bersalin malam ni!)

Bukaan 6 cm!!

Bertolak dari rumah dalam pukul 10 mlm. Sampai Ampang Puteri Specialist Hospital 30 minit kemudian. Register dekat Emergency Department, then nurse attendant tolak pakai wheelchair ke labour room.

Guest what?!! Sampai dekat labour room, nurse (bidan) seluk tangan dia (sakit tau???!!) Nurse tu cakap, da buka 6 cm. Terkejut I!! Bersalin malam ni!! That time I was like freaking out, the thought of the baby will come out from my V-Zone really scares me much. I immediately then texting my parents, my siblings, parents in law and close friends, asking for forgiveness and smooth delivery.

Nurse pasangkan contraction level detector machine. At that time, my contraction level is around 60.  Dalam pukul 11.30 mlm mcm tu, nurse pecahkan air ketuban. Masa tu, contraction level naik sampai 90. Sakit? Allah je tau. Syukur Alhamdulillah, Fandy was there all the way through. He is my strength! But you know what?? Doktor kata 90 tu baru separuh, masa betul-betul nak keluar dah, level contraction tu boleh sampai 150!! 

Doktor Zalina arrived around 12 am. Masa tu dia tanya, ada rasa nak berak tak? Saya spontan jawab ada.  Dia tanya da ready ke? Saya jawab la, tak tau bila masa yang sesuai untuk dikatakan ready. Everyone then laughed! (Is it funny??). Doktor suruh saya pakai oksigen untuk bernafas, so boleh tahan sakit contraction tu. With that saya boleh simpan tenaga untuk push nanti. 

Sakit macam mana pun saya masih boleh gelak-gelak lagi tau! Petua dia, masa kita rasa sakit yang amat sangat tu, sedut nafas dalam-dalam guna hidung, lepaskan pelan-pelan ikut mulut. Bila kita buat mcm tu, baby dalam perut tak rasa sempit dan sakit contraction tu kurang. Senang baby nak keluar. (thanks Mama for the superb advice. It works!!)

Akhirnya dalam pukul 12.15 tgh malam tu, doktor kata, bila rasa contraction tu, push kuat-kuat. Petua nak push: 

• jangan sekali-kali angkat bontot (ee.. seram tau, nanti boleh koyak bontot you)
• push bila rasa sakit sangat-sangat, jangan main push je, nnt guna tenaga banyak
• cuba elak untuk ambil epidural sbb epidural buat kita tak rasa sakit, nnt tak tau bila nak push 

Kepala baby dah nampak!!

Credit to Fandy. Dia kuat semangat. I mean, bukan semua lelaki boleh tahan tengok benda-benda macam ni. Tapi yang melemahkan sangat kan, dia boleh describe apa yang jadi kat bawah sana masa saya tengah sakit!! Mesti lah seram kan.. ;p

So, masa push yang pertama, doctor panggil Fandy, dia tunjuk rambut baby. Masa tu, Fandy da duduk sebelah doktor da (sibuk juga nak jadi bidan!). Tapi dalam masa yang sama dia bagi semangat jugak. Saya tak ingat berapa kali saya push masa kepala baby keluar. Bila kepala baby da keluar, doctor suruh push one last time untuk keluarkan bahu dia. 

Kalau tak silap saya, 3 kali push baru baby keluar. Ya Allah, masa tu tenaga memang dah habis. Ikutkan hati nak je ckp kat doktor, saya da give up, tak larat. Tapi dalam masa yang sama saya tak nak baby pula lemas (kasihnya Ibu!!)

Irfan buka mata!

Keluar je bahu baby, doktor terus tarik dia keluar. Saya rasa Allah je yang tahu betapa leganya saya bila baby dah keluar. Tapi saya memang dah separuh nyawa dah. Letih sangat!

Sayup-sayup je saya dengar doctor panggil Fandy untuk potong tali pusat baby (launching ceremony..). Nurse ambil baby, cuci hidung, telinga, mulut, mata semua then letak atas perut saya. Miracle! Miracle! Subhanallah!! 

Masa tu, baby buka mata! Dia pandang saya then dia pandang Fandy. Happy mother I am!! Dia pandang parents dia dulu! I am blessed!! Alhamdulillah. 

Tak lama lepas tu, doktor keluarkan uri. Besar juga uri. Saya terasa juga lah masa doctor tarik. Doctor kemudian jahit balik mana yang koyak. Jahitan lebih kurang 2 cm. And then I am done! I am a mother now! 

Irfan bin Mohamad Effandy

Lahir 13 Oktober 2012, jam 12.47 am @ Ampang Puteri Specialist Hospital

Berat : 3.0 kg, Tinggi : 51 cm