Every day....

Everyday when you on your pc or laptop, which websites do you visit first? ...hmmm...I was thinking of that question when asked by my friend in the forwarded emails recently...and so here it is...as usual, as soon as I on my laptop my yahoo messenger will automatically be logged in..then I'd open my Mozilla Firefox browser and immediately the page will show the main yahoo website...then off to the yahoo mail to check my mails, which has a few accounts too..heehee...then control T a few times to open more windows, usually one for friendster, one for my blog here :P and lastly, one to view family and friends fotopages...yup...that's about the routine everyday or whenever I on my laptop...hehee..so, happy browsing to me and happy browsing to everyone out there! Ciao!

Ridhwan and the standing frame

Last Tuesday, we had our weekly physiotherapy session with Sarjit at SJMC. As usual we'd reach there earlier so we can get good parking and also I had to eat breakfast first as it was so embarassing that my tummy was grumbling away in one of the previous physio session with Sarjit. Either she didn't hear it or just ignored. Heehee...Nevertheless, I myself can't help her much with physio if I was darn hungry before the session...hehe..and so MUST have breakfast before the session. Besides, with all the rushing and packing and feeding before going for our weekly physio, I usually end up not even drinking any water not even plain water whenever I reached the physio department. So, breakfast for mama before Ridhwan's physio..heheee

Anyway, as usually Ridhwan would be greeted by the ever friendly therapist at the physiotherapy department...did u know, that there are many types of therapy, i mean occupational, physio, speech, vision and so forth...and all this while I've only heard of physio only...well, back to the story, as usual I'd be pushing Ridhwan to the paeds therapy room which is sound proofed to ensure that the child does not get distracted during the session. Trust me, Ridhwan heard other children voices once when the door was left open for awhile, he just couldn't be bothered to listen to what Sarjit asked him to do...hehee..then again, he usually doesn't want to listen to what Sarjit asked pun...hahaha...oh well, wonderful child he is....

well, this time, or actually this was the 3rd time, Ridhwan was placed on the standing frame to help him strengthen his legs and also to stimulate his senses especially on the legs..you see, Ridhwan is still unable to stand properly and he is already 19 months old which is one year and 7 months...and so, unlike other children or toddlers his age, he should be able to stand right now and running around wildly learning that he has a pair of legs to move around...but he doesn't...and its okay cause he is of course very special ;o) However, I realise that he did enjoy the standing frame a lot and was not crying or in any pain which is very good as Sarjit mentioned that different children may react differently and may even hate the standing frame...but alhamdulillah, Ridhwan loves it and realise a whole new view for him to explore..sian anak mama, dia nak sangat duduk and diri and move around tapi tak terdaya lagi yea...takpa ridhwan, kita usaha sama2x nanti insya-Allah Ridhwan akan reach your milestones gak you...mama akan doa banyak2x to fulfill your dreams tu, insya-Allah....

And so the standing frame would be used in our weekly therapy where the amount of time given to Ridhwan to stand using the standing frame would be increased gradually...so initially, it has been 10 minutes and that is actually very good progress as I am told! Alhamdulillah...

However, then there is the issue of, maybe he should use it everyday! Aiyaak...yup, it means we would probably need to purchase it and place it at home so he may have the opportunity of doing the therapy everyday instead of once a week only at SJMC...then there is the issue of the price! Fiuh....but so far, we've asked our ever sweet dear rehab Dr. and alhamdulillah the frame is still affordable, Insya-Allah...but I am slowly seeing the trend that we may need to purchase other equipments as ridhwan gets older and depends on his progress...and that sorts of making me scared as currently I'm enjoying my leisure time at home taking care of ridhwan..

Though the real truth is...I love staying at home and the truth is, I would rather sacrifice my career and time for Ridhwan as the joy of staying at home and being a housewife is not that bad..well, not yet kot cause still staying with parents and they have a servant kan..hehee..but then again, I always felt that Ridhwan needs me more and yes, we do need the money...but insya-Allah I always doa and feel that rezeki tu akan datang jugak, and ada nanti and slowly we will ikhtiar somehow no matter what...and right now, what's important is that I am there for ridhwan and I am doing what I should be doing for my special needs son...and insya-Allah ada nanti rezeki tu nanti kan....so, pray that Ridhwan selalu murah rezeki and that he will stand soon when he starts using the standing frame everyday ya!

Tengah nak pakai kan velcro yang sungguh banyak


Sarjit placing the velcro at all appropriate places


Okay, Ridhwan is standing! Yippee!!


Yea! Yea! I can play with the tambourine! ..Apa lah yang Sarjit tak puas hati tu...hehee


This is how the standing frame and its accompanying table looks like side view...the orange crab is from IKEA and its one of Ridhwan's favourite toys ;o)

Kasih sayang ...

I remember listening to this song in the car with my hubby and I after Shichida class...I never really listened to the lyrics before, but I knew it was written by arwah Zairi in Raihan...but that day when I actually listened to the lyrics, I actually cried...the song is very simple and yet the lyrics is very meaningful...I don't know why I actually cried but I guess after all that has happened to me the songs really made sense to me... so I dedicate this song to all my friends out there with the message, love one another, forgive one another and most of all love the almighty endlessly...wallahualam..

Kasih Sayang
by Raihan

Kasih sayang itu titi
Kasih sayang penghubung hati
Kasih sayang itu tali
Kasih sayang pengikat diri

Dari kasih timbul simpati
Dengan sayang ada persaudaraan
Kerana kasih ingin berbakti
Saling sayang ma'af mema'afkan

Kasih sayang itu baja
Kasih sayang penyubur jiwa
Kasih sayang itu penawar
Penguat cinta penghapus duka

Kasih manusia sering bermusim
Sayang manusia tiada abadi
Kasih TUHAN tiada bertepi
Sayang TUHAN janji-NYA pasti

Tanpa kasih sayang TUHAN
Tiada simpati tiada persaudaraan
Tanpa kasih sayang TUHAN
Tiada bakti tiada kema'afan

Kasih sayang pada semua
Kasih sayang sesama kita
Kasih sayang oooo dunia
Moga selamat di Akhirat sana

Feeling lost at times...

You know, as a mother of a child who has microcephaly and is considered cerebral palsy, I always wonder about mothers out there whith similar situations like me or some even worse...and I always wonder when I feel so down and lost at times...are they feeling the same too? Or are they feeling even worse or are they taking it all calmly..truthfully lah kan, no matter how calm I may seem at times, I panic too and I freak out and god knows, how I worry like mad when it comes to Ridhwan's situation...sometimes, I can't help being lost and in a dazed with what to do with Ridhwan...especially these days as it is slowly sinking into my head that Ridhwan needs more than just the normal physio or OT he goes through every week but he also needs equipments...he actually need a standing frame...I know it will take some time and less I hope, for Ridhwan to finally be able to support himself by standing and eventually walking around..but for now...he needs a standing frame...and truthfully my friends, deep down, I am sort of crying as I wish he didn't have to have such equipment and would be able to run around like any other children his age...somtimes, I must admit, it really takes real strength to see my friends children who are normal and who can run, and play and grasp things and not telling myself I wish Ridhwan was like that....but then, I'm glad I don't say that or feel that way much or often as Shichida method helped me a lot by appreciating our or my child as who he is and how he is.... but sometimes, this mother to a wonderful boy can't help crying or feeling lost when it comes to seeing ridhwan in situations that I wish so much will just stop...and this is about the reflux that he keeps getting whenever he drinks...it just breaks my heart each time he looks as if everything inside his throat or stomach is pushing itself out his throat..it is as if some alien thing is forcing itself to come out from his throat...sob...sob....gosh, this must be one of those days when I feel so vulnerable with anything....but sometimes, when I feel lost like this (and oh ya..it is that time of the month pun..hehe), I would go and get my strength back by visiting a very special website about a very pretty young girl called Kaylee, link to Kaylee's Palace. She too has microcephaly but she now has progress and improved so much that I admire her mother's strength and commitment to her in achieving her milestones one by one...way to go Kaylee and keep it up Kaylee's mummy! A section in the website that I always like to read when I feel down is this :

Coping With Finding Out That Your Child Has Microcephaly

This is most likely going to be the hardest time of your life. You need to remember that it will get easier. It's pretty unimaginable when you are in the situation. Doctors are constantly informing you of the worst case scenario's for your child. Remember that the doctors don't know everything and certainly cannot predict your child's future. Kaylee has already proven the doctors wrong numerous times! Try to surround yourself with friends and family. Sometimes you will feel like you are the only one that understands what you are going through. I joined the Yahoo Microcephaly Group and there are a lot of parents on there that will understand exactly where you are coming from! They have helped me a lot and I have met a lot of wonderful people. Don't forget to take care of yourself. You have to be your child's advocate and if you don't take care of yourself then no one will be left to take care of your child! God has already written the book of life for your child...remember whatever happens is meant to be and you can't do anything to change it! The main thing to remember is that it will get easier!

Whenever I read this, it makes me feel alive again that there are mothers out there with simillar situations as I am in or even worse and each are doing their best to make ends meet as easy as possible. Also, it gives me a wake up call again that I can't afford to slack or laze around at all...you know, when you work, well when I was working last time, if I just get sick of my work I'd just on my mp3 or start chatting with friends to loose some steam as they call it...but with raising a child and a special needs child, you'd realise there's no such things as slacking or lazing around as time is so precious to you and every moment and second spend on playing, talking and exercising him is a step further for him to reach his milestones ..I guess in a way sometimes that is why I feel so lost at times about time for myself and also for friends...lost with the priority of time for ridhwan or for myself, but as Kaylee's mom says, I have to take care of myself as I'm the only thing Ridhwan has now, without me Ridhwan is not able to do anything, without me he may be lost...I am his world and there is no one more imprtant to him now but me and the same for me...and for that I can't be lost...or lost in translation..hehee..like the movie...or just like Lost the TV series...but then when I think about the word lost again, am i really lost? or am i in denial...denial to the fact that I must always remember reality isn't that great but no matter what happens I'll get over it...and that there's a wonderful rainbow waiting for me and Ridhwan out there..waiting to shine brightly with beautiful colours in our life...wallahaualam...all I know, I must never stop praying to Allah..and believe in myself and most of all Ridhwan....Ridhwan...mama sorry if mama is lost at times...but sometimes mama pressure with things that happens or is happening around me...mama is sometimes overwhelmed with duty as a wife, a mother, a daughter and also as a friend..sometimes when everyone expects to much of mama, mama gets lost...lost in my world of lostness...hehee...no such word actually...so sayang, be strong for yourself and insya-Allah mama try to be strong for myself too kay....lets not be lost anymore...let us be heroes...hehee..like the new TV series...

I love you Ridhwan....mmmmuaaaah!

Before I was a mum poem...this is so true ;o)

Before I was a Mum
by Balqish(taken from Friendster)

Before I was a Mum
I made and ate hot meals.
I had unstained clothing.
I had quiet conversations on the phone.

Before I was a Mum,
I slept as late as I wanted
And never worried about how late I got
into bed.
I brushed my hair and my teeth everyday.

Before I was a Mum
I cleaned my house each day.
I never tripped over toys or forgot
words of lullabies.

Before I was a Mum
I didnt worry whether or not my plants
were poisonous. I never thought of
immunizations

Before I was a Mum
I had never been puked on
Pooped on
Spit on
Chewed on
Peed on
Or pinched by tiny fingers

Before I was a Mum I had complete control of
My Thoughts
My Body
And my mind.
I slept all night.

Before I was a Mum
I never held down a screaming child so
that doctors could do tests
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a
simple grin.
I never sat up late hours at night
watching a baby sleep.

Before I was a Mum
I never held a sleeping baby just
because I didnt want to put it down.
I never felt my heart break into a
million pieces when I couldnt stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone
so much.
I never knew I would love being a Mum.

Before I was a Mum
I didnt know the feeling of having my
heart outside my body.

A new year..a new hope..

Alhamdulillah it is now 2007....A new year...new events to happen...new memories to be cherished and remembered and who knows new friends to meet too..wallahualam...to me, the year 2006 has been a very eventful year for me..it starts with the starting of a new 2nd semester for me at UiTM to complete my Masters in Computer Science..with a heavy heart I enrolled myself in the classes again when my heart was longing to just stay at home and be with ridhwan as he needs me more than my classes or lecturers..however, 2nd semester in UiTM have been fruitful and results were flying colours alhamdulillah..then it was the anticipated wedding of the year for me and between my close friends, Loges' wedding....At last, after years of knowing a man called Hak Jing, Loges has finally bid goodbye to her bachelorhood and embracing marriage life..the wedding was wonderful despite many obstacles for me to attend but all in all it was a wedding to be remembered as all of my good friends were there to enjoy it....then it was another anticipated wedding of the year which was Jes' wedding...a good friend from UIA which will always have a special place in my heart...hidup 606! ...the wedding was really looked forward, for it was the first wedding that Ridhwan attended to and the joy of meeting Kak Nani and Bet after such a long time was indescribable...love u gals..and still missing you gals a lot...it was also nice to see many of my UIA frens happily married and some with their children..wow...we are all so...grown up! hehee....then of course my darling son's one year birthday...after all the hurdle he had to go through when he was only 4 days old, he was alhamdulillah 1 years old on 2nd June 2006...looking back to the days when he was in the ICU for 10 days and then later warded for another 11 days...and the thought that I was actually in confinement at that time...I thank Allah so much for giving me strength and hope during that time..and most of all, I thank Allah for having such a wonderful husband and family members who were always there for me at times when I juts fell my world was about to crush in pieces....so ridhwan's birthday was a day of hope and happiness for us and also for ridhwan himself too I'm sure...

However, despite all good things, there were incidents that brought tears and pain...just right after ridhwan's birthday the worse had yet to come...ridhwan had pneumonia :( and to top it all, he had to undergo a gastrostomy surgery at his stomach...the thought of having a button or tube in his stomach until god knows when, scared me to bits at that time and yet I had to admit that Ridhwan was having feeding difficulty and his weight gain was static for a few months already..with a heavy heart I had to sign the papers to authorise the surgery..the very thought that I had to sign the papers still haunts me as I was the one giving the authorisation at that time..and when that happened I only had my mom with me and was longing that my hubby was there too...but, Allah had been with me all the time, and alhamdulillah gave me strength to endure those moments with patience and hope...the surgery was dreadful..emotionally that is...physically, only Ridhwan would know...till now, I don't know when the g-tube will be out of his body or specifically stomach...the surgeon said it could last him till years....as in till 10 years or less I pray..but for now, the reality is there, Ridhwan is relying nearly 100% on the tube for his feeding but no matter what, I will and must feed him through his mouth to ensure eventually he will eat on his own using his mouth..amin..amin.. then, of course, the hurdle to finish my last semester in UiTM during which Ridhwan had just undergone his surgery was a real test for me...there were so many times I was on the verge of just quiting my masters cause I felt so bad having to leave him at home and the thought of him reflux every time feeding brought tears to me every time I left him at home...wishing I was there to wipe of the phlagm or water that came out of his mouth...and then, there was also the pressure to complete the assignments and do well as previous semester...enduring datelines and the icky special topics we were all suddenly compulsory to complete it...but alhamdullilah, I overcomed it with pain, tears and smiles in the end :D ....

This year, will be an exciting year insya-Allah as I am now a fulltime housewife and mother to my wondeful hubby and son...and it should be even great as we will be moving to our new house soon, Insya-Allah..so the excitement of choosing furnitures and all will be great though one must not forget, we will have to be ala kadar as we are only relying on my hubby now...our bread winner...but as I always believed, semua ada hikmahnya kan...there's a reason things happens to you and its like a big lesson for you and its up to you wether you learn it or you'll learn the lesson over and over again and get another lesson after that..but with new or old lessons, it makes you a stronger person and appreciate life more..wallahualam...another event that scares me this year, would be deciding Ridhwan's tube...to continue it or change it to another brand...as it is, looks like it may still be in ridhwan's stomach for now but the brand may be changed...but the very thought of Ridhwan going into the operating theatre again makes me shiver the whole body and sometimes makes me cry a tear...but that is something I have to deal with when the time comes and may Allah be with me, in strength and in faith...

This year also anticipates lots of therapy for ridhwan..lots of visits to SJMC, from our OT and also visits to Ijok for traditional massages...but as they say, kita ikhtiar, insya-Allah ada jalan nya nanti kan....wallahualam....then the decision to do the translation course...a decision that have yet to be decided as the thought of leaving my mom and ridhwan for 11 days...h..m..payah gak tu..will see how...decisions..oh decisions...

But as years goes by...you do thank Allah that you are still alive now despite the hurdles you had and will go through kan...the thought that you still have fingers to type on your keyboard on this blog and eyes to see the blog ....thank you Allah for giving me these gifts...you start thinking that sometimes you may take for granted these senses that was given to you by god...thinking or taking for granted that it all came from the brain to move the fingers, to see the wordings and interpreting it using the brain...wallahualam....that is something that I learned the hard way after Ridhwan's seizures when he was 4 days old...but tu lah kan, semuanya ada hikmah kan... also, when I read my good friend's blog about the death of her friend that left a son and husband...I start thinking again about how we have taken granted about our life here on earth...that we will never know when is our time...so I started thinking again that it wasn't worth it to go on feeling scared or sad with difficulties I have to endure but instead embrace it with an open and willing heart...and in my friend's blog that made me even think more is how true that we should never forget the people who are still living today and forgive one another as we'd never know when is our time and when would we ever see our friend again..who would ever know the person whom you just spoke to today will never be able to speak to you again tomorrow, or a friend you haven't met in years and met only a month ago will leave you forever the next day...and maybe you didn't have the time to say I love you, I thank you for being my friend or even, I'm sorry...and so, as my friend wrote in her blog, I too would like to ask for forgiveness to all the people that I have known should I have hurt their feelings, behave badly or ignored them as I am only human and as human we are prone to mistakes...but no matter what, the friendship that I have with all of you will always be remembered and cherished no matter how many times we meet these days or even call...as time goes by, priorities differ and responsibilities may accumulate but the friendship will never be forgotten or taken for granted cause once a friendship has been establish you keep to it no matter what unless death do us part....so my dear friends, to all of you, no matter how busy I may seem as a mother to a special needs child or as wife to a husband, the love and care for all of you never diminished or forgotten..and so may god be with you always and may our friendship last forever, lets forget the past and look forward to the future togethere, Insya-Allah...and to my family, I love you all very much and I thank Allah so much for giving me you especially at times of sorrow and definitely not forgetting in happiness...

Year 2007, I look forward to a great year...and so...Happy New Year!!