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!