Monday, August 25, 2008

I hope I'm strong enough..again...

Today was a normal day for me..the usual routine..wake up, ridhwan wakes up together....calls out "mama"...mintak "NYANYI!!!"...fine, switch on the cd player....gave him milk...gave him a bath....played with him...gave him his lunch...gave him milk again..force him to sleep!! ..cause his cousins were here..and as usual...since he asks about them everyday, every hour, every minute, I decided to let him see them before their weekly piano lessons next door to my mom's house...but again, one of the twins will be screaming away excitedly and ridhwan would cry....you see, he's not use to loud noise or sounds...wait, correction...he laughs when he hears the thunder!! ...let me rephrase...he's not use to hear people screaming or talking to loudly...I guess he feels that they might be angry with him but in actual fact, some people just talks loudly and you know kids, they talk and play loudly!!..hehee...so after pacifying him after a few minutes, I decide...that's it..time to sleep my dear...and he did...slept soundly after I placed him in his bed....the best sight this mother enjoy everyday IS to see her child sleeping soundly in his bed...such bliss....awww....

Then, the twins came back...I played with them for awhile and thought, better check up on my son now..wondering if he's still asleep....and there I saw it.....yes, the dreaded jerks and flop of the head!! NOOOOOOOOOOOOO!!! ...ya Allah..when I saw the signs of mild..very mild fits/epilepsy...but still its a fits..I just couldn't help myself crying and quickly rush to the cupboard to grab hold on the rectal tube fits medication or commonly known in the hospital as Diazepam...ever since he was placed in the ICU in SJMC at 4 days old nearly 3 years ago, I have been carrying this diazepam in my handbag without fail...always fearing if ever he has fits when we are on the move or just out on a stroll, the diazepam is just an inch away from my hand to be placed directly into his rectum..sigh...



But...I made sure if was real fits...denial is so easy isn't it...when you really don't want something..you just wish it away or hope it'll go away..and so it took me a few minutes to really see or accept...it was a fit!...or a few fits...so then I quickly carried him and into my arms, calling out his name several times, hoping he'd be aware of his suroundings again..and he did...but yawned exhaustedly too....and went back to sleep....my darling...sian Ridhwan...

I just cried even more while carrying him in my arms...you see, its been nearly 2 years now that he was fits free...ever since he had pneumonia in 2006 and the doctor decided to make him use the PEG-tube, he was fits free..also it was also because he probably got the right fits medication that worked for him..and so for nearly 2 years...my life was sort of stable again...but most of all, stress free from worrying about the constant every 2 weeks or once a month visit to his neurologists in SJMC..but then it came again...it came back!

In May he had it again..the flops came..then...again, i was in denial..refuse to accept that he was having fits but being a mom, you get worried very easily when something just doesn't seem right about your child..and true enough, when we met up with his paed cum neurologists...and after some blood test and the awful EEG that made Ridhwan cried like mad..was probably even fitting during it! ...the paed@neurologist clarified Ridhwan as having fits again....nooooo.....

And so came the once dreaded episode of testing which dosage was suitable for ridhwan...the current Topamax (fits medication) was increased..and to make me feel even worse again...she added another fits medication called Clobazam...I know its for his sake too..but I guess it got to me real bad as the plan was to slowly tail down the medications in July and take it off once and for all...but then you know, just like his name...Ridhwan...redha...yes, kita kena redha dengan semua ketentuan Allah....I finally see, why I had chosen his name to be Ridhwan...it made me realise in everything I do or happens I must redha pada Allah...and I am...but being a normal human being and only want the best for her child....one can't help being worried and thinking..this is something I really don't want to go through again....but I must redha...

I've been through worse situations right....so I hope I'm strong enough...or actually I am stronger...right now, I just doa to Allah a lot that Ridhwan will eventually be fits free and have no fits attack at all....insya-Allah...amin...perkenankanlah doa ku ini Ya Allah..hambamu serahkan segala-galanya pada Mu....

2 comments:

SCRAP-n-CROP said...

hi there...i feel for you as my son also had a bout of pneumonia, then after that was fit free for a while...and it came back now...stronger than ever. His is infantile spasms and we put him on vigrabatin and epilim. Also i am curious about your peg tube. We have a BARD for my son. i honestly know how u feel....stay stong! val

sity29 said...

hi reenaz.. hope u stay strong for dear ridhwan :)

take care!!