IT'S UNFAIR!!!

Yes, sometime the world just being unfair to you.

And you won't be able to change them, but at least you can change your own way of looking at it. 


Life must goes on.. :(

New Year

Self-Reflection on last day of 2012

Semalam (31st Dec 2012) mama hantar Z ke school at 11, then mama pergi town. niat asal nak shopping untuk diri sendiri, but end up shop untuk Z juga yang lebih.. have my brunch around 1 then sambung shopping balik. Pukul 3 mama dah tercongok depan skolah Z :)

Looking back in 2012.. hmmm.. what can I say? I dont think much interesting thing happen..ye ke? maybe sebab mood hujung tahun x bagus kot.. ntahlah.. hopefully 2013 will bring more happiness n health to our small family. And my very own new year resolution: Need to look after myself too!

Btw, some highlights for 2012;

January - first time apart from Z, mama went to Brussels for 2 days trip. 

February - London trip. 4 days 3 nights. Z's loves National Gallery!!

March - St. Patrick's day + mama's birthday. Started noticing Z's Strangers Anxiety behavior

May - 4 days 3 nights Netherlands trip  

June - 2 weeks holiday in Malaysia - worst trip because of Z's anxiety. 

July - Start Gymboree class. Longest Ramadhan

August - Birthday Z, Aidilfitri, Giraffe orientation week
September - Z officially in creche (nursery/daycare)
October - moved to a new place close to Giraffe, Autism?
November - 2 weeks holiday in Malaysia, xenotransplant, maid-less.
December - Mama started on 3 days per week job.

I think 2013 will be a quieter year for us. Will struggle a bit financially due to my unpaid leaves and we also saving up for Z's next treatment. I think I have prepared that mentally, just need to carefully manage our budget. Nevertheless, I am sure spending time with my son is still my highest priority. Looking forward to 2013. Bring it on!!

Just another day..

Extremely busy lately, with work n personal matter.. Sigh. Penat. Physical n mental. But i think i still can handle those..

Cuma harini sedikit berbeza. Fitnah tohmahan manusia. Mama sangat keciwa. Manusia yg sepatutnya lebih memahami situasi kami berbanding orang lain. Tak pernah sekalipun mama meminta pertolongan mereka. Baik dari segi wang ringgit ataupun buah fikiran. Cukuplah sekadar memahami kesulitan kami sekeluarga. Tapi sebaliknya diumpat dicerca. Tak sedarkah siapa asal usul mereka? Baru beroleh kesenangan yang sekelumit, dah angkuh mendongak dada? Mungkin hari ini nasib kami tak sebaik anda, tapi esok2 bagaimana pula?

Kalau diikutkan amarah mama, mahu saja menyerang balas. Tapi mama tahu, tak ada gunanya. Hati yg penuh kebencian dan hasad dengki. Biarpun kebenaran di depan mata, memang tetap yg khilaf juga dilihat mereka. Tak guna membuang masa. Mama hanya perlu pekakkan telinga dan butakan mata - sama seperti mereka. Sabarlah mama, sabarlah papa. Semoga Allah membantu kita dalam usaha membesarkan anugerah yang terpaling istimewa.

Pengorbanan

Semoga AidilAdha tahun ini lebih baik dari tahun-tahun sebelumnya..

Mama kerja macam biasa jer harini. Cuti dah habis.. Lagipun takde semangat nak beraya sebab papa kerja, kawan2 rapat yang lain pun kerja.. Z pun bukan mengerti apa2 lagi pasal perayaan, lagi menangis adalah kalau bawak ke Malaysia Hall nanti..

Sempena hari yang mulia ini.. Kebetulan di office harini agak tenang.. Mama nampak dari kejauhan big bos mama pun macam in a good mood saja, so mama pun hantarlah email kepada beliau,

'Hi D, can we meet up? I have something important to discuss with you..'

Segera dibalasnya, 'Sure Laili, I am free now'

Maka dalam debaran, bergegaslah mama ke tingkat 6 sana..

After changing stories, shedding some tears and hugs, mama melangkah keluar dari biliknya dengan senyuman, lebih tenang...

MasyaAllah, mama tak sangka begitu mudah.. Thank you Allah..
I have 3 days to really think about my plan. For my very special son.
I think I already have a clear plan, just want to make sure that this is really what we want.

Semoga pengorbanan mama dan papa diberkati Allah. Semoga perjalanan kita dipermudahkanNya. Dan semoga Z akan mendapat yang terbaik dari kami. InsyaAllah.

Salam AidilAdha :)

Serabut..

Too much to think and to do but too little time to act.. 

image: googled

Short-term: mama needs more holiday! I mean annual holiday. Bukan utk pergi bergumbira, tapi utk merealisasikan impian mama untuk memenuhi keperluan Z. We really need to get a private OT and SLT.. also swimming classes.. Masalahnya mama dah x de cuti.. Macam mana nak bawak Z pergi appointment2 nih? Sigh, agak2 bos mama marah tak kalau mama ambik unpaid leave..?

Semi-Long-Term: Hmm.. Should I just become a SAHM? No maid from November onwards.. 

Options: 

1) Dapatkan au pair (european maid) 

Senang carik, tapi mcm susah jer.. Makan minum, agama n culture..menjadi persoalan.. 

2) Hantar Z ke full time creche (nursery) 

How about his physio, home teaching and other appointment.. makan lagi.. (they provide food) halal ke? dairy free ke? kawan2 dia lagi.. not to mention the 'cekik darah' fees (900++ EURO) per month. And the most important part is, will he be ok?

3) SAHM

Tapi kalau mama benti keje, susah jugak financially.. Mama rasa mama boleh sacrifice my 'needs' kot.. We could move to a cheaper place and spend less.. But we also need funds for private therapies, school (kena jugak bergaul sekali sekala kot), supplements and also cells treatment. Nak harapkan papa sorang memang tak mampu.

And.. Yes, I wish I could choose option 3. I want to be at home all the time.. It is really heartbreaking to see him crying every morning when I left. I've been thinking of him all the time at work. But I think all other moms are the same.. Sape tak mau dok rumah and jaga anak jer kan.. 

Unfortunately some of us have to work.. sigh.. Semoga Ramadhan ini memberi sedikit kelapangan pada kita.. Amin..

p/s: 2 years ago I would never thought that I will put into a consideration of becoming a SAHM.. But yeah, things change.. and nothing in this world is much more important than my son..

Papa

Alhamdulillah papa dh dapat keje Drogheda..:) Setelah lebih 15 bulan tinggal berasingan, next week papa akan berada di rumah almost everyday :)). Walaupun terpaksa berulang alik dekat sejam perjalanan, still wayyyy better :)))

Z pun mesti happy. Lately dia bertambah attach dgn papa, pantang nampak papa sarung jaket jer, mesti dia dh start melalak sbb tahu papa dh nk pergi :(. Kalau mama n papa balik serentak pun, dia mesti g terpa papa dulu.. (Huhu sampai hati Z menduakan mama...) Takpe lah, mama paham Z rindukan papa.. Nak jumpa seminggu sekali pun susah.. Kadang2 2-3 minggu sekali baru jumpa.. InsyaAllah lepas nih tiap2 hari Z boleh jumpa papa k :)


Detik pertama kali Z bertemu papa @ 4 months old (since 5 days old!)

Mama loves both of you so much!

Bidadari syurga

Al Fatihah untuk baby Akmal. Walaupun baru saja mengenali akmal sekeluarga, mama betul2 tersentuh dengan kehilangan akmal. Semoga mommy akmal dan keluarga tabah dengan ujian ini.. Innalillahiwainnailaihirojiuun..

Hutang

Pisang emas dibawa belayar
masak sebiji di atas peti
hutang emas boleh dibayar
hutang budi dibawa mati

1 of the verse dlm lagu rasa sayang yg mama selalu nyanyikan utk Z.. :)

dulu arwah ayah mama (al-fatihah..) pernah berpesan... elakkan diri diri berhutang ataupun memberi hutang terutama kepada saudara mara ataupun rakan2.. bukanlah kedekut.. infact ayah mama memang sangat suka menolong orang, tapi katanya biarlah berpada-pada.. sebabnya hutang tu boleh menyebabkan hubungan terputus. kalau kita berhutang, mestilah kite akan rasa segan utk berjumpa dgn org yg memberi pinjam tu kan.. terutama kalau hutang yg belum berbayar.. kalau kita pulak yg memberi pinjaman, kadang2 kita pulak yg rasa segan nk jumpa org yg berhutang tu.. yer lah.. kalau jumpa nanti, first diorang akan malu2 or cuba mengelak dari jumpa kita pun.. second, kita pulak yang rasa segan nk dengar alasan2 yg diorang bagi tu.. serba salah jadiknya..

dikalangan rakan2 rapat tu, setakat berhutang seratus dua yg memang confirm akan dibayar mama memang tak kisah lah.. yer lah, kadang2 tu certain time sesak sikit jadinya.. so, kita hulurkan lah bantuan.. kadang2 tu mcm kes mama pulak, selalu jer terlupa nk cucuk duit bila keluar.. but dont worry mama mesti bayar the next day.. so far belum pernah lagi lah mama berhutang ribu2 dgn org (bank tu lain la citer kan.. hihihih) even hutang credit card pun x pernah.. bagi mama, berbelanja biarlah sepadan dengan income sendiri.. alhamdulillah jugak lah sebab kawan2 yg mama bagi pinjam pun mmg jenis yg boleh dipercayai..

anyway, apa yg mama nk ceritakan kali ni pasal ada seorang 'kawan' mama nih.. yg dh hampir 10 tahun tak bertemu.. memang semenjak lepas belajar dulu tak pernah lah bertanya khabar.. tapi dulu memang rapat lah.. tetiba jer weekend baru2 ni dia contact.. setakat bertanya khabar sikit2, pastu tetiba jer terus mintak nk pinjam duit.. banyak jugaklah amount tu pada firasat mama.. serba salah mama jadinya.. bukan mama tak bersimpati pada ceritanya, cuma mama ada sedikit keraguan disitu.. kenapa tetiba jer muncul? kenapa banyak sangat? kalau kawan2 rapat mama, mmg mama tak de masalah nk tolong.. tapi ini khabar pun x penah ambik tahu.. tetiba aje muncul..

mama terpaksa jugak lah menolak permintaannya.. lagipun mama bukanlah ada banyak duit. mama pun tengah berjimat cermat sebab nak menabung utk treatment Z nanti.. (nantilah mama ceritakan in details). bila mama ceritakan pasal Z (bukan lah nk minta simpati, tapi agar dia memahami aje), barulah dia nk bertanya brp org anak mama n siapa suami mama.. hmm..nampak sangat we dont know each other anymore.. entahlah.. mama memang nak sangat2 tolong kawan, tapi dalam kes ni mama rasa we are not close to each other like we used to be.. although, mmg mama rasa bersalah sangat n agak kejam disini.. mungkin dia memang sangat terdesak.. bayangkan kalau lah mama ditempatnya pulak suatu hari nanti.. mestilah mama sedih kan.. sigh.. Ya Allah, ampuni daku dan lindungilah kami daripada bebanan hutang..

mama happy sangat masa mula2 dia contact tu.. yer lah dah hampir 10 tahun (9 thn) terpisah. terimbau kenangan2 lama.. walaupun kami cuma kenal dlm tempoh setahun lebih jer, tapi mama memang tahu dia seorang kawan yang baik.. Now dah rasa AWKWARD..
Kepada kawan mama tu, saya betul2 minta maaf saya tak dapat membantu kali ini.. saya doakan agar masalah awak dipermudahkanNya..

Kisah Sulaiman

Semalam mama call atuk Kedah. sembang punya sembang, mama teringatkan Si Leman anak mak cik Tah. Rupanya Leman dah balik ke kampungnya di Selatan Thailand bulan lepas.. Katanya atuk, ayah dan ibu Leman dan berpisah. Nampak gayanya tak dapat lah Z jumpa Leman lagi lepas ni..

Dulu masa Z baru lahir, Leman selalu datang rumah. Leman tua 2 bulan dari Z, tapi orangnya sangat bersemangat dan cergas. umur baru 2 bulan, atuknya dah kasik makan nasik. Supaya cepat besar, nanti boleh tolong pergi angkut getah di kebun katanya..

Mak dan ayah Leman adalah warga Thailand dan bekerja sebagai penoreh getah di kebun Tok Cik (pakcik mama). Tok Cik sediakan rumah untuk diorang berdekatan dengan rumah atuk. So, pada masa yang sama, boleh lah diorang tengok2 kan atuk juga..
Petang2 mak cik Tah selalu bawak Leman datang rumah temankan mama yang kebosanan masa dalam pantang. Bila mama dah habis berpantang, kita selalu berjalan2 menghirup udara segar di kampung. Kadang2 mama akan bawak Leman dan mak cik Tah ke bandar. Tiap kali mama belikan mainan atau baju2 utk Z, mama mesti akan belikan something utk Leman jugak..


::Rumah Leman di kampung::

Mama teringat satu petang tu, beberapa hari sebelum kita balik ke dublin, mama bawak Z ke rumah Leman. Kebetulan masa tu ada kapal terbang lalu.. Ayah Leman tunjuk ke arah kapal terbang tu dan cakap pada Leman 'Leman, lepas ni bila Leman tengok jer kapal terbang, Leman mesti ingat adik Zakri tau.. adik Zakri dapat naik kapal terbang, Leman dapat tengok kapal terbang pun cukup lah..'

Mama cakap pada ayah Leman, 'janganlah cakap macam tu.. mana tahu, nanti Leman belajar pandai2, boleh jugak naik kapal terbang..' Ayah Leman sambung, ' alaa.. ayah Leman kerjanya motong getah, mana lah kami ada duit nak hantar Leman belajar tinggi2..'

Walaupun mereka hidup serba kekurangan, mama tahu ibu dan ayah Leman sangat sayangkan Leman. Diorang selalu cakap diorang tak mahu hidup Leman susah. Mama harap Leman masih berpeluang untuk bersekolah sepenuhnya. Sekurang2nya kalau dia masih di Malaysia, peluang untuk belajar secara percuma/murah tu masih ada. Mama tak pasti lah macam mana sistem pendidikan di Thailand sana..

Ayah Leman pun belajar agak tinggi sebenarnya. Sebelum berkahwin dan berhijrah ke Malaysia, ayah Leman bekerja sebagai pegawai technical di sebuah stesen penyiaran. Tapi ketika peristiwa berdarah di antara penduduk Selatan Thai - ramai org Islam telah dibunuh, seluruh keluarganya terpaksa menjadi pelarian. Pakcik Leman juga telah dibunuh dengan kejam. Kesian sangat bila mama dengar atuk Leman bercerita sambil bergenang2 air matanya..

Sebab itu mama rasa sangat sedih bila dapat tahu mak cik Tah dah bawa Leman balik ke Siam. Mama doakan semoga mereka selamat di sana. Semoga jodoh mak cik Tah dan ayah Leman masih panjang dan semoga suatu hari nanti kita dapat bertemu dgn Leman semula..
InsyaAllah..

Some Things Are Better Left Unsaid

To tell or not to tell..

Z has a mild case of DS, his conditions are not that apparent. His own neonatal team didn’t even realized it for the first week. Normal doctors (read: not pediatrician) hasn’t had clue that he has DS if we did not mentioned it. And even most of my friends are doctors/surgeons, none of them ever mentioned or have any query about it. I was kind of hoping that people will know it straight away by looking at his face. But I don’t think it happening any time soon.. maybe in future, his features & symptoms will getting stronger where people can easily make their own assumptions, but for now it is up to us whether we are to make the announcement or not.

For the past few months, this issue has been bugging my head constantly. There are part of me that just wanted to scream out loud telling everybody about my baby conditions. No, not for seeking sympathy, but I just feel that people should know and should accept him the way I accepting him. Also, I feel like I’ve been living in a lie pretending that everything is alright, when it is definitely not. I am worried that people will think I still not accepting the fact that my son is different from others by hiding it. To be honest, I really wish I could talk about it freely.. I want to express my worried to others. I want to deal with it more openly..

But… I am not sure about others acceptance. Will they treat my son differently? Will they react differently towards me after they knew the fact? I always believe that my friends are all educated enough to react positively on his conditions. But at the same time, I also worried that they will feel sorry for me.. they might feel uncomfortable talking about the issue and even worst they might avoid talking to me just because they don’t want to hurt my feelings.

And today, it is proven what I am worrying about is in fact true. As we were having our normal morning break, we were talking about pregnancy and motherly instinct on their unborn child. 1 of my colleague ‘A’ make a shock and honest statement. She said, when she was pregnant, she was so worried that her baby will have a ‘problem’ because at that time our colleague ‘B’ (who happen to be away today) constantly talk about her special need child (which I will story later). This happen 7-8 yrs ago. And she still think that the story she heard from B really affecting her feeling at that time. Then my other colleague ‘C’ who is currently pregnant also express her concern about the stories she heard from her friends about DS baby which also make her felt uncomfortable. An how she wish she don’t have to hear all those sad story. And there I am.. sitting in the middle of their conversations listening carefully to what they said while part of me want to jump out and say ‘ hey my baby has down syndrome too!’ but instead, I just stood there.. nodding my head.. thinking of how this conversation has given an answer to my very own situation.. while of course trying to hold myself from crying..

I am not making any judgment here. I am fully aware, they are not against any of those special need childs. Its more about their concern and sympathy towards those children and their parents as they said. Especially when Alan (B’s Son) who is currently in the hospital due to failure kidney. To be honest I don’t really know Alan’s exact conditions as I was worried I’m going to hurt B’s feeling if I asked about him (<--noted already="" and="" bed.="" before="" br="" but="" degree="" having="" her="" his="" informed="" life="" me="" most="" of="" on="" retardation.="" she="" some="" son="" spending="" that="" the="">
See, from my very own experience, long before I have Z, I also have the same feeling. No, not feeling of disgusting or anything against disabled / learning difficulties people.. but more towards sympathy and uneasiness. I just don’t know how to react. I think because the lack of knowledge that make me react that way. I might not felt the same way towards people with DS. The only reason is, 1 of my niece (15 years old) also has DS. Yes, Z is not the first one. In fact, he is the third in our family. My youngest aunty ‘maksu’ (40 years old) also has DS. (NO this is not genetic transfer or keturunan. We have confirmed that from Chromosome study we did before.. it just happen randomly.. and our family just happen to be the chosen 1 :)). So, back to the story, because I already have experience with people with DS, I normally wont have the same uneasiness feeling towards them, unlike when I have to deal with any other type of disabilities. Just when I have my own son that I realized how important is this knowledge. I guess, only when you experience it yourself then you will understand it more right?

So, as a conclusion, NO, I don’t think they are ready to hear the truth yet. And not just my office mates, but the same goes to my real life friends. I am sorry my dear friends.. it never be my intention to hide such a news from you guys, I just don’t think it is necessary YET to tell. Unless of course if any of you asked, then I will definitely not going to hide it. Hope you guys will understand the situation we are facing at the moment. I know every person will react differently, and I know there are some of my friends that deserve to know.. but it just not the right time yet.. sooner or later you will eventually know. And if by chance, any of you ever bumped to this blog, please please please be remember that we really value our friendship, therefore we don’t want you guys to feel the unnecessary burden or uncomfortness. We treasure our journey with Z and we entirely happy with his present, and for that reason, we really appreciate if you guys will accept him just the way he is.

p/s: at least I have this blog where I can freely share my feelings and concern…