Angel in Petaling Jaya

Semalam adalah hari konsert di Spastik selangor.persediaan telah dibuat berminggu awalnya. Memdangkan saya hanya hantar dan drop oya ke sekolah, banyak proses persediaan yang saya terlepas termasuklah rehearsal day. Segala komunikasi saya hanya ikuti melalui whatsapp.

Alhamdulillah, saya siap2 dah block kalendar saya dan menghadiri hari konsert pada 27 ogos.

It was a success i would say. We had Michael Jackson, gendang show, merdeka show, few singers, all performed by cerebral.palsy kids and individuals. I.must say, i am never this.impressed.

Sewaktu menyiapkan oya dan rakan2 untuk show Lotus n bee, satu soalan terpacul dari mulut saya.

Boleh ke oya buat neh?

Tugas oya adalah pergi dari satu watak ke satu watak, sentuhkan magic wand ke kepala mereka.

Cikgu menjawab, yes. Oya boleh ingat semua steps dan bila que untuk keluar tanpa perlu mengajar banyak kali . Waktu rehearsal pun sama.

Bangga dan segan, datang pd wktu yg sama.

Dalam masa yang sama, seorg ibu kepada anak Cp telah datang pada saya. Katanya;

Oya bagus. Dia jaga kawan2 dia, betulkan  tangan dan kaki kat wheelchair, lap mulut, etc etc. Sama mcm kat kelas cikgu mim kot.

Moral nya, Jangan underestimate anak CP kita.
I did, and i wish i could take it back.

Ps sharing dibenarkan.

24th Aug 2015

Oya had a bad night.
She was grumpy and jumpy.
Threw her cup across the living room.
Stomped on her fave bread.
I wonder why.
Mummy had to cheer her up.
Soon after, she is back to her joyful, sometimes annoying, self.
Phewwwww......

Oh, what's all the ruckus was all about?

She was having her fave warm Milo when she decided to dump her butterscotch bread into her drinks.

Of course, there was no milo left as the bad bread has "drank" her milo till there was not even a drop for her to drink.hence, the tantrum.

Hmmmm....that was surely bigger than the currency issue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

But what i did next, made me feel guilty all night long.

Aggravated by the rush of anger towards someone else, i practically dragged her to the bathroom to clean her up. yes, yes, guilty as charged. and it left a mark on her neck as during the "struggle", she scratched her neck against the coffee table. Luckily, i had the edges of the table "bandaged" weeks before. if not, she might have a bleeding wound instead of scratches.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

i am not gonna keep on defending myself on whether i am a good mother or not.

be in my shoes for a day and let me know about it :)

Oya dah graduate!!!

For 2014 laaa...

Please ignore the kehadiran ye.heheheh.

She is in pre primary and 2015 pun will maintain at pre primary.

But looking at her report card, i can't believe she has gone this far.
We have more work to do oya especially when it comes to your writing.

Allah dah makbulkan doa kami untuk oya boleh bergerak.sendiri.

Sekarang kita concentrate supaya Boleh menulis pun jadi la.

Amin.

Oya. Just oya.

Suddenly i have the urge to share these videos of oya. This was recorded last month in pantai batu buruk.

I used to keep her progress to myself. Fearing others may think that i talk big one. But lately, i get the feeling that some people needs motivation.

Well, those who have seen or know oya before the age of 4 years old, will know that she was not able to stand at all.

Diagnosed with Cerebral Palsy at 2 years old after a traumatic birth experience which caused oya to be admitted in NICU for 2 weeks, we were told to not hold our hope high. Seriously, she was hanging to dear life those days in NICU. she was on constant medication and she was on the 2nd drug when we were told that she might not make it. Hokay? 50-50 org kata.

We authorised the doctor to administer the 3rd drug and alhamdulillah, the seizures were gone and she could breathe on her own.

To say that oya was not severely affected, is to belittle the efforts done by us, her therapist, family members and my ever loyal babysitter. We had rough days, financially,emotionally.and physically. Back then, there was no MYCP nor any support group till 2010/2011. i had nowhere to refer to except for occasional information in the internet.

But yeah, we did held our hope high and i remembered bringing her to local tukang urut whatnots.

And yeah, we do have our worries and obstacles. It was not easy.

She may not be bedridden and need wheelchair all the time, but do not ever say that her case is not so serious, so-so. We worked hard,prayed hard,sacrificed  and voila..at the age of 4, she started to stand.

Now, at the age of 7 we can see what she is able to do. Aloooo...don't la.compare with normal kids.

My intention is.not to show off, nor belittle others. I just want to show that with hard work and prayers, fate can turn around. Trust me. Been there.

Video: to upload later.

Japan movement.

Phewww....external ISO audit d habis. Alhamdulillah. Dah lepas pun aku dah cukup.lega. kena pulak tawon ini recertification pulak. Memang heavyla soklan2 yang dapat.

Minggu neh memg extra beban sikit la.
Dengan audiy. Appraisal. Delivery issues.mitigating internal.issues.
Tapi kita patut bersyukur. Aku patut bersyukur.
Masih lagi mampu untuk membantu ekonomi.keluarga.
Masih lagi mampu menyumbang.
Masih mampu untuk rasa diperlukan.
Masih mampu untuk.merasa sakit. Suka.penat.
Sebab kita masih diberi peluang untuk.bernafas.untuk.hidup.

Minggu neh oya banyak duduk dengan daddy. Rasa mcm first lady la plak kan. Seminggu tak nak.ke.sekolah. nak.duk.rumah katanya. Takpela.nak.oiii..daddy tak.keje skang.bleyla manja2 lebih sikit. Pow daddy paksa beli roti canai.kan. lama2.ko transform jadi preity zinta la neh oya oiii...amik contoh yg cun2 je aku neh.

Talking out daddy n manja....tadaaaa....ai dapat belated birthday present u.ols.
Kenapa ai.pilih jam.neh?
Sebab ai rasa muda. Sekian.

Ps tajuk? Ntahle tapi aku copy dari.jam aku.hehehhehe

Tempat Molek, tanoh suboooorrrr

Minggu cuti krismas neh ahkak habiskan kat Terengganu.
Best tak kampung laki ahkak?
korang sibuk2 nak jalan pantai timur, ahkak balik kampung je kau...
"tempat molek, tanah suborrr..nanananana teganu kiteeeeeeeeeeeeeee"

Kuala Terengganu Waterfront

Kenali CP. Sayangi Kami.

hari ini Oya tak mau ke sekolah lagi seperti biasa di SCASFT, PJ.
bila ditanya kenapa, dia hanya menggeleng.

tapi dalam masa yang sama setiap pagi Oya merenung ke arah SKKL yang hanya bersebelahan dgn rumah.

Bila melihat kanak2 lain berbaris setiap pagi dengan kawan2, berbaju sekolah, aku tahu dia amat teringin. Hampir setiap pagi juga Oya akan berkata " nak ikut".

Teringin untuk berjalan ke sekolah. atau mungkin jugak sambil dipimpin oleh abangnya.

Hati ibu mana yang tidak terguris melihat situasi ini hampir setiap pagi sebelum ke tempat kerja.

Bayangkan permulaan hari kami dengan nada sedih, tapi kami masih harus menjadi produktif?

Berilah peluang anak2 CP ke sekolah.
Kenali CP. Sayangi Kami.

ps Tuhan tolong lembutkan hati dia.

our disabled child not worth it?

On 23rd february 2013, the annual Children's Party is being held again at Thean Hau temple, robinson height at Seputeh area. This year, the main sponsors are Persatuan Hainan WP & Selangor and China Press.

What usually happen is those associations which takes care of orphans or from children's home or diabled children will be celebrated. There are food, entertainment like clowns, singing, magic show and donation giving ceremony. Yang best, ang pow giving time. a lot leyyy...this year, Oya got RM207. thanks u uncles and aunties.:-)

Oya and Nabil. Besties

Seronok naik bas

Nyanyi karaoke..

ang pow siap ada nombor leyyy

the food and etc etc

Siap jalan2 kat Bukit Gasing lagi kejap...sebab balik tuh jam amat...adeh..

tapi disebalik kegembiraan, surat hari neh membuat aku hanya tersenyum tawar.
Kami masih bersyukur. cuma kadang2 bila terasa hak kita dipermainkan, rasa macam nak jadik srikandi la plak. haiyaaaaaaarkkk.

This letter is from SCASFT (Oya's school) to JKM. One of the agendas is to state that the welfare grant is taken out from the maintenance grant. Mind you, SCASFT is NGO. We only pay RM50 per annum and the rest depends on the donations drive.

Transport subsidy.
If if i send Oya to school EVERYDAY, i will only get RM120.00. Our own insurance some more whereas normal school children on school bus are covered by insurance automatically.
Don;t get me wrong. I am happy for the insurance-bus thingy but is our disabled child not worth it?
Special schools are not available everywhere like the national schools. Even if they have special education classes, they are limited and with conditions like must be able to walk or operate their own wheelchair.


and 19 years old tak dapat allowance? we are talking about OKU okay...kalau yang bo;leh bekerja they will tapi yang tak boleh?

What happens to Children like Oya? Don't she and her friends whom are not able to walk (yet) and needs assistance deserve education? so sampai bila2 dorang mcm tuh la? tak layak masuk main stream?

In centres like SCASFT, i do not need to be there (i can;t afford to quit work also). They have class assistants who will take care of the children (tukar pampers, bagi makan, etc). That's why yang lebih 18 tahun pun masih bersekolah kat sini sebab ada latihan vokasional dsb.

But these centres need fund to operate.


So, without the government grant, how?
Belum lagi aku cakap pasal monthly allowance. Belanja for OKU kid is double from normal kid.
So imagine what you are earning now and the spending on your child. Now, at least kali dua lorrr..



boleh kau tanggung?
alhamdulillah. so far rezeki Oya dan Adam mencukupi. aku amat bersyukur.
Cuma aku kesian kat kawan2 yang mana rezeki belum mencukupi.

Tapi kami bukan peminta sedekah. Kami akan cuba memenuhi keperluan anak syurga kami walau kadang2 berkorban.

Anyway, selamat berbelanja dengan duit BRIM anda.

Story of Dalili Sofiya

It's been ....6 years.

She is now 6 years old. Time flies so fast.

I am happy, blessed and having wonderful times having her in our life.

But i can't deny the fact the yes, i am worried for her.

What happened, really? we had to answer similar questions everytime new people see her and know that she still cannot talk and walk like a 6-years-old.

Here it is:

My pregnancy went smoothly until the birthing process. Adam, the elder brother, was born healthy via c-sect after nearly 24 hours of labour pain. 

Sofiya, on the other hand, had me in intense labour pain for 4 hours after my water was broken by the nurse at 12midnight. The pain before the breaking thing was bearable.at 3am we tried for normal delivery and after few tries i asked for C-Sect. I felt out of energy.

My request was denied with "sabar, beranak memang sakit". 

Vacuum was introduced and failed. at 6am, i was on the on the way to surgery room and i could hear the surgeon said "it's too late".

Hence, on Feb 25th 2007, Sofiya was born via c-sect and was in NICU 2 weeks after that.

I was told that her chance was only 50/50 and if the 3rd drug didn't work on her, nothing will.

Alhamdulillah. It worked and her epilepsy or sawan ceased until today.

Except, she was out of oxygen during birthing process and 2 years later, she was pronounced as Cerebral Palsy. She had Global Developmental Delay where even at 1 year old, she couldn't even sit on her own yet.

There you go. I think i got it all covered. 

The: Updates

Bila belek C Drive..jumpa la pix lelama budak2 neh..geram tengok eh!

Adam 

                           

March 2001 - few weeks old.               

 

                             2001 - Few months Old                               

                                   

  2001 - Few months Old - with cousins dearies

 2003/2004 - 2 or 3 yo - Langkawi

Now - a mind of his own.

Recently: with his GBS..in class during report card day.

Sofiya

hmm..1 year old maybe?

 

1 yo..2008

2009 raya..2yo..

recently--trying to get up on her own. she's 4.

 

Updates:

Today, we went to Oya's first Speech therapy session with Teacher Aini.

It was fun, good, informative and so worth it.

She is charging RM100.00 per session/hour initially and the subsequent session wll call for RM80.00/session/hour.

For the first 2-3 months, we will be concentrating on Oya's jaw strength and saliva controlls.

Both mummy and Oya has some homework to do.

But i guess, nobody has taught me those "homework" before.

Hence, i'm grateful for her time considering i've been looking for a therapist that is good and affordable.

She's attached to WQPark.So i guess, she's good.

Thank goodness. alhamdulillah.

That was in the afternoon.

In the morning, i fetched dear father and went to this so-called sinseh.

Not so sinseh la. why? read on.

They offered a kind of drinks which came in 3 separate huge glasses.

A clear, a teh-o like and a milo+fruit like.

My father and his friends swears by its effectiveness.

Apparently, after 5 straight days, he could straightaway get up from sitting position w/o hurting his knees.

so, i went with him after he told me that few peeps actually lost a considerable huge amount of weight after 2months.Wah! even say i getting fat one....sey lorr daddy..

At first, i was sceptical. who wasn't? nothing is 2 good 2 b true?

then , i noticed something in  the pictures plastered all over the wall.Herbalife!

Hhahahahha..of course la working daddy. It's a well-known brand and pricey also..

if i could spare few hundreds, say, rm400 a month, i would ..but Oya's theraphy is more important.

On getting rid of my fatty bff? we'll see.

The One that bit me hard.

I admit. I have never come to term with reality.
Especially when it comes to Sofiya.
I've never acknowledged that she is an OKU kid.
I've never acknowledged that she is a kid with special requirements.
I've never acknowledged that she will never be normal.

Yesterday, May 13th 2011, her physiotherapist declared that she needs certain equipments
to help her walk and move around.
Reality bites. and it bit me hard today.

I am dreading the day someone would declare that she can't talk.at least, like the rest of 4 year olds.

I wonder, how her 1st day of school would be?
where? and...when?

That, i leave it to God , fate and Oya's rezeki.
I just hope that she will be taken care of even if i am no longer around.

The Drama Queen

No. Not me. A fellow SCASFT-ians mother dubbed Sofiya as Drama Queen.

Betul betul betul (sila baca dengan nada Upin & Ipin)

Why? At SCASFT, every Wednesday is a Physio day. Hence, the Cikgu and his assistants will usually carry on with the body warm-up first in the form which the kids will enjoy. 

Then, based on their observation and conclusion, each kid will proceed with their intended Physio activity. For Sofiya, it will be walking using the walker or rollater as highlighted in previous entry.

What will usually happen?

 Hence, the Drama Queen right?

So, i've tried other means to get her walking.

That my friend, inlcludes buying below Leap Frog Pretend & Learn Shopping Trolley.

So, if her mood permits, i will take her for a stroll.

 Patient. That's the keyword whenever Oya is involved.

In case you're wondering, she's 4 and can't walk & talk properly tet.

Why? she's special. She's a CP kid.

But i'm damn proud of her.

But yesterday, during the walking session, she fell down and got a small cut on her head.

Damn. Of course i feel guilty.

Hence, last night, i bake a personal favorite of mine.

Puding Roti @ Bread Pudding.With Whip Cream.

 

 It's filled with eggs, milk, whip cream. If you want the extra kick, use Butterscotch bread.

By breakfast, 1/2 the pudding has gone. Hope it survives at leats until tonight :-)

The Feel-like-Crying afternoon

Maybe i'm just tired.for today.
Maybe it's because of some of the sad statuses and newsfeed on my FB.
Maybe it's just one of those days with the homesickness.

yes. i still feel homesick. At 34 and 2 kids in tow? come on, some people would say.
Ask your Sabahan or even Sarawakian friends. Our speech will almost be the same. We miss home. Nothing beats home. There's no place like home. well,except for those whose family has fully migrated to the peninsular. and those who hates their hometown ;-)

In my case, i am missing a lot of happenings around my family. Weddings, births, engagements, convocation celebration, birthdays and even death. Well, i have been since i was 13 when i went to PM as a YS student in one of the boarding school here.It's a decision (...r u sure nana? heheh) i sometimes ponder, what has gotten into me 22 years ago? well, i was just a kid!! and flying to PM was just a finale to my fantasy, at that point of time. Imagine the KK airport was filled with sad atmosphere and the cry of a group of 13years old about to be apart form their family for almost one year. It was for most of us.

And how we spent the school holidays? Perkampungan!!! That was how we , the YS students, got together, got close and ease each others' homesick. Noooo..we were not allowed to go back except for the 1-month holiday at the end of the year! Our bond was special. We don't really share our lives together the way we shared it with our schoolfriends. But somehow, there's a bond between us that is still alive until today. Whether or not it's still being cherished,it depends on each individual. Each perkampungan has its own memories. Each time the venue would be different and the event would of course be unique.

Well, ff i hadn't accepted the offer though, i wouldn't have known the wonderful people i have known so far in my life. That my friend, is me, accepting my takdir.

crap. i've gotten so melancholic over these things this few days.
This will be a good time to watch some tear-jerking movies.

moving on!!!

Today afternoon was spent at UMMC. OT & Physio appointment for Sofiya.
As usual, the therapist will gauge her progress and/or improvement She has shown some improvement when it comes to walking attempts but it relies heavily on her own self motivation and mood! Mummy can only laugh la...

We will try to hold only one of her hand so that she will try to balance herself and she has tried something new today!

Usually, she would try praticising walking with Rollator. This usually priced at RM250.0-RM400.00. She has not got one because she seems to hate it and she can't balance herself yet.
Rollator is actually a walker which needs to be pushed while walking. It may come with or without seat and baskets.

This wheeled walking frame is designed for children who require support when walking. ... This walker is suitable for children with good upper body strength but limited stamina.

source: http://www.healthnme.com/images/adult%20child%20folding%20rollator.bmp

While Reverse Posture walker is something that sofiya actually likes because she has more balance and she can handle it. The price tag? from RM850.00 w/o seat, etc. I may need to get this for her.


.

source: http://www.assistireland.ie/eng/Products_Directory/Walking_Standing_Devices/Walking_Frames_-_Wheeled/Wheeled_Standard_Frames/Children/Meyland-Smith_Henry_Walking_Frame.html

walking frame that offers support from behind the user to encourage correct trunk position and an upright posture. The frame has anti-slip wheels to prevent backwards movement, but has an override feature that allows forward and backward walking when required. The frame has swivelling front wheels that can be locked to prevent the frame from moving when not desired.

We'll see how it goes. Let her choose which one is comfortable for her but i have a gut feel that the reverse walker suits her better.

Well, since JKM is not providing one, looks like i have to build one for her or buy her one.

The Afternoon Birthday

Saturday. March 5th. 14:00.
Eh..i haven't bake the cake for the birthday suka-suki! It's at 5.30. Dang!!




..and the oven was instantly heated up to 175deg.
The plan was to bake Death by Chocolate Cake. Adam requested for a chocolate cake and amongst all the easier choc cake recipe available, i had to choose this. Maybe it will be more..accordingly (takkan nak cakap perfect plak) if i wasn't in a hurry. Mind you it's 2.30pm already and the recipe needs 40-45mins of baking, another 30mins for freezing the cake before the ganache is to be poured over the cake. huh...



but somehow, something's off..maybe the whipped cream layer is too thin..and the choc ganache was to thick or the cake is a bit to dry to handle the cream & the choc ganache. Maybe i need to try the recipe again..or maybe just buy at secret recipe..hahah.

kalau dah kelam kabut, banyak mende tak menjadi kau. snowy cupcakes yang aku wat tak berapa nk snowy nyeh! hahah..manis lebih sikit tapi habis jugak!

When the kids starts arriving, aku baru nak set up mende2 ok. punya la kelam kabut.
Sib baek petang. memang tuk minum petang.
kalau tengah hari atau malam? mau orang hengat aku masak nasi,rendang, kari, lemak segala.ampunnnn....



Moral of the story:
1. Cita2 tuh penting. tp tgk la masa nya plak.
2. 3 jam tak cukup oke unless setakat nak bake pound cake or egg tart.
3.yang penting, budak2 neh happy dapat makan free. nk beli cake mcm neh kat bakery? RM60 ada? kalau takde senyap.makan je.
4. simpan cake tuk diri sendiri. aku hanya sempat rasa secoet dua. ampeh tul.

Happy Birthday My Angel!!

Sofiya is 2 today and I can’t help but feel happy yet sad at the same time.

She can’t even crawl yet let alone walk. Her grip strong, yes, showing strong hand and fingers but it also shows that she is just like a 10 months old baby when she’s already 2!!!

She understands bye-bye and wave when she has to eventhough Wall-E can perform a smoother waving movement.

Her steps are getting firm and both legs were no longer wobbly like before but toddlers her age should be running around like nobody’s business and she could only do it when she’s in the walker.

I am happy that she started calling out to me even though the only sounds that she makes are “aaaaaaa”, “dididididididi” and mostly “ wuuuuwuuuuwuuu”.

Yes I am happy but I know I am angry.

Yet, I love her so much like other mothers love their children and if, she is fated to have her development delayed or even stays like this forever, I still love her deeply.

Feelings of mothers who has OKU status children are a bit different from mothers with normal kids. I know because my firstborn is alhamdulillah normal. It feels like i want to shelter her forever and as to my son, i want him to explore the world.

Even though Sofiya Global Development Delay level is very2 minor, don’t ever2 say “takde apa2 la. Lambat jek tuh” We do know the reality of children with Cerebral Palsy. If they improve, good and it may come waaaaaay later. But to those unfortunate, the time may not come at all. So, the best things you can say will be “ sabar, nih semua dugaan tuhan”, “ada hikmah di sebaliknya” , “keep seeing the doctors. Don’t miss the appointments”,etc. The best one yet I get is “you’re lucky. God loves either one of you (me and hubby) or both of you and test you this way”. I can’t help but also think that, maybe this is my redemption of whatever bad things I did in the past? Well then, no pun intended, I am lucky coz I am forgiven kot!! :D

….and please in my daughters’ case, stop giving free unwanted advise on pursuing the case with hospital WITHOUT showing how, why, who, when and what. I have no clue where to start and I don’t need people to confuse me further. Not that I want to sue the hospital people but like I said, I have my doubt. Doubts are never good. Must clear it.

Anyway, Happy 2^nd Birthday Dalili Sofiya. You are loved and we will face whatever may come together including mommy being zombie while waiting for you to sleep at 3 am.