June 20, 2014

A story about my sweetheart

Dah lama nak tulis pasal ni, tapi tak tertulis. Maybe sebab terlalu panjang, or I don't know where to start with, or maybe I was in denial.

My eldest daughter has been diagnosed for having Global Developmental Delay (GDD) few days before she celebrated her 1st birthday. You can google about GDD for more info.




It all started earlier than that. Vivy tak membesar ikut perkembangan yang sepatutnya. at 6 months old dia still belum pandai pusing badan, belum pandai duduk sendiri, apatah lagi merangkak. She sat in the bumbo seat. Orang-orang tua asyik cakap biasa la budak-budak ni lain-lain, ada yang berjalan dulu baru bercakap, ada yang bercakap dulu baru berjalan. I took the words walaupun jauh di sudut hati ni rasa ada benda yang tak kena. Finally when she was about 8 months old, I decided to take her to see a neuro paed in Gleneagles, since I hate the long queue in the government hospital.

Vivy used to hate strangers, biasalah budak-budak. So when the so called neuro paed hold her hands, she started to cry. And kebetulan memang time tu nap time dia, so she was cranky during the whole session. Doc tu check mcm doc kat klinik biasa check budak kalau demam, and said "I can't see anything wrong with her, what I can say is she's not a happy baby".

Zapppppp sentap terus mommy nye. From what point yang you can judge if my baby is a happy baby or not? She cried when you hold her hands, and lepas tu terus cranky, so sebab tu dia bukan a happy baby? Terus dia suruh buat MRI scan je. My husband and I were so pissed off with the doc and terus balik.

I called my cousin, a specialist in HKL to ask for her opinion. She then helped me to set an appointment with paed in HKL. Sesungguhnya lepastu menyesal sgt sebab dah pernah jumpa banyak paed from private clinics and hospitals, tp paed yg terbaik I can say is from HKL. The paed (sorry i can't remember her name) siap tanya lagi kenapa baru sekarang nak bawak Vivy datang? I should come earlier, when she was around 6 months, when I started to ask myself why Vivy tak membesar ikut perkembangan yang sepatutnya. So memula paed refer kami to nutritionist to plan for her diet, sebab Vivy perlukan lebih zat-zat untuk menguatkan badan dia, so that dia boleh menampung badan sendiri untuk start duduk, berjalan dan seterusnya. Fyi, Vivy memang taknak makan, dia just minum susu je. Macam-macam kitorg try bagi makan but still she refused to eat. Paed jugak refer kami untuk start buat Occupational therapy (OT) and Physiotherapy (PT) and set kan appointment for Vivy. So sejak tu my husband and I did a lot of readings, start dari situ la termasuk blog-blog mak-mak yang ada special need kids, time tu rasa bersyukur sangat2 keadaan Vivy is actually tak seteruk yang kami fikirkan mula-mula.




When she was 1 year plus, she still can't walk. Kitorang usaha macam2, every month cuti bila ada appointment kat HKL, tapi dah nama pun gomen kan so sebulan dapat sekali je appointment. So kitorg try bawak pegi private pulak, kebetulan my SIL worked in the rehabilitation centre in Kelana Jaya, WQ Park. So kami try bawak buat OT and PT kat situ every week, memang menangis dia tiap2 kali pegi. Kalau sejam session tu memang sejam la dia menangis. Pernah drive berdua je dgn Vivy sampai Port Klang, sebab baca recommendation mommies yang pernah bawak berurut kat akak tu. 

Sampai la Lana lahir, Vivy still belum boleh jalan. But i can say that kehadiran Lana betul2 bagi kekuatan kat Vivy, kat kami jugak; the parents. Since Lana lahir, baru la Vivy berselera nak makan banyak, maybe sebab ada rival. Since Lana dah start bertatih, Vivy pun nampak berusaha nak berdiri, nak tatih sama. We finally sent her to the nursery with her sister, all this while her grandma took care of her while we were working. Susah mula-mula nak cari daycare for her sebab rata-rata bila orang dengar umur setahun lebih takleh berjalan lagi dorang taknak ambil. But dgn izin Allah, we finally found a perfect place for our girls, the owner sanggup accept Vivy sebab dia sangat berminat nak tolong kami dalam development Vivy. All praises to Allah, syukur sangat-sangat. Since Vivy masuk nursery, her social skills is also getting better. 




When she was 2 years and 5 months old, few hours before my 29th birthday, first time in my life I saw her bangun sendiri, berdiri and melangkah 2-3 steps. Menangisssssss la Mommy nye. I swear that was the best moment in my life, and the birthday present I'd ever had ! Since that day, she showed us improvements almost everyday, more steps each day. Subhanallah !

And yes, finally, she can walk now, Alhamdulillah. Thank you Allah, thank you to all the people around her, the nursery staffs, our family; her grandparents, uncles and aunties, and especially to her lil sister Lana. It will still be a long way to go. 






First target achieved , Alhamdulillah. Now we are still monitoring her since GDD has no cure. It's genetic. Tak pasti lagi if she got autism or not. But after I compare dgn ciri-ciri autism yang selalu diperkatakan, tak nampak pulak on her. Tp bak kata sorg paed dulu, we have a few more years to prepare her so that Vivy can enter normal school mcm kanak-kanak sebaya dia. So now kami kena fokus untuk speech therapy pulak. Insyaallah insyaallah insyaallah usaha, harapan dan doa tu tak pernah putus !


What made me started to write about this is this video. I watched this at my work desk at office and cried at the very first 5 seconds, non stop sampai habis ! This video reminds me of the times that we spent while seeking treatments for Vivy especially masa kat HKL. Tunggu turn lama gila, made me bersembang dgn few mommies yang bwk anak-anak syurga mereka. Selalu nampak anak-anak senasib dgn McKenzie (the girl in the video), tapi tak nampak langsung kekesalan or kesusahan kat muka parents mereka. Pernah sembang dgn sorg mak yg ada 4 org anak, 4-4 ada masalah penglihatan. Masa dia bercerita tu wajahnya tenang je, langsung tak mengeluh ke merintih ke padahal rumah bukannya kat KL, jauhhh tu ulang-alik bawak anak2 ke HKL to seek for the best treatments ! I believe that all parents are proud of their kids, no matter what. I thank Allah for giving me such a beautiful daughter like Vivy, made me bersyukur selalu. 



To everyone who's reading this, please, jangan merendah-rendahkan anak orang, jangan mengata-ngata kejadian Tuhan, if you have nothing nice to say, just shut up. Jangan ingat budak-budak tak paham apa yg korang cakap. At least jaga lah hati ibu nya. You won't know the feelings until you become a mother.