Don't cry because it's gone but smile because it happened.
Our little feisty princess is still wowing her doctors. :-) They come daily and ask her, "Are you having chest pains? Do you find it difficult to breath? Are you breathless?" The best part was when the consultant told her that "Dont worry, we have arranged to put a needle into your chest - pointing to her right chest". My poor princess freaked out with a look of fear and asked me in a quivering voice "Mom, why did doctor say she wants to put a needle here?"
Someone in the medical school needs to make sure ALL DOCTORS are required to pass a compulsory module in COMMUNICATION SKILLS. Don't misunderstand me, I'm not really pissed. I didn't even glare at the rather insensitive or should I say "dumb" consultant. Haha. It's just appalling.
In case you are wondering - The answers to all the questions asked were "NO"! No breathlessnes, no chest pains, no whatever the medical books have taught the doctors. My baby is not your textbook example unfortunately. She sets her own rules. One would gve thought that by now, the doctors should have understood that amazing quality in her. Maybe they were just trying to have a certain sense of "preparedness" which I appreciate BUT I would actually respect them more if they would just stop implanting those absurd ideas into my baby's head.
Afterall, that's what clinical assessment is all about, isn't it? You access the patient's condition and not try to predict a certain outcome. Yes we are taught Condition A will most likely result in Outcome B. But until it happens, we shouldn't assume that it has happened. Oh well, what am I expecting. 2.5years in this medical world should have taught me to lower my expectations to NIL when it comes to working with most doctors. Once in a blue moon, you get a wonderful healer like Dr Aung, Dr Chui, Dr Lee or Dr Serene Lim. But other times, it's best to teach yourself everyone is a newbie learning. Only then can I have a little more patience and a bit more tolerance for mistakes...
Char is doing OK. She's having a little more pain and we are trying to adjust her pain meds again BUT she looks awesome otherwise. I truly need to put up a picture for you folks to see. We have been playing UNO, painting, watching DVDs and eating! I know my previous post is depressing and I've gotten quite a few comments that got me thinking. You probably is picturing a very sick and ill child with no laughters and just plain misery. I'm happy to tell you that it's quite the opposite her because she's our feisty little princess! In fact, Charmaine is shouting "Byeee and LOVE YOU" to all her favorite doctors and nurses daily. I get a little teary whenever I hear that but it's simply because I'm so damn proud of my baby girl and her big big heart! She's so full of love!!! I know I see those doctors and nurses looking touched, stumped, surprised and happy all at the same time!
Hmm, I just like to say a few words to our many supporters. I'm at a period when it's extremely trying and there are many moments where I can no longer fake my strength ad courage and need a tasteful breakdown. And I'm so grateful to all of you for hearing me rant and simply being my silent listener when I needed that release. Thank you. I am aware that we are out of curative options for my innocent child but it doesn't mean that I've given up on hope and miracles. While I'm realistic about our situation, I still believe that my princess will fight non stop. After all, she is doing just that every second! Nothing has changed except that I've decided to stop poisoning my child with chemo. HOWEVER, my belief and faith in fighting had never wavered once, not even now. We are merely using a different combat method. My princess has truly made everything simple for her mom - me. It's so easy to know what's the correct decision because her determination and will is so powerful, so optimistic and so unstoppable. She has this invisible unassuming power to just make people fight for her in every way possible. Right now, we have some wonderful doctors from the pain team doing everything to make her comfortable and we are blessed.
Char doesnt complain much of boredom, or her inability to move. She doesn't even complain about the fact that she has to deal with pain daily. She simply just takes everything in her own stride. She has no fear for everything she's going through. Except during the occasional times when the fear is put into her mind by the very doctors who are supposed to provide hope. She believes that she is going to get well and that is why she will! Afterall, people have been telling me our brain is the most powerful thing we have, isn't it? Please don't tell me, or her otherwise. We don't need that. And no one is allowed to tell us she won't make it either. Who are you to say so, right? :-)
What will be, will be. :-) Whether it's my princess or anyone, please don't ever allow others to tell you that there is no hope. We all will die one day but until that day comes, everyday of our lives is FULL OF HOPE. Yes, I lose it at times, I cry and I feel despair, depression and desperation, pain and sorrow BUT hey, that just mean I'm NORMAL, isn't it? It's NORMAL and correct that I should breakdown when the situation calls for it. The important thing is to stand up again. Dry the tears, touch up the make-up if needed, to cover the puffy eyes and all, fake the strength or courage, whatever it takes, as long as it helps you to stand up and move on, it's a good trick!
I read a comment left by a reader who had read my previous post saying that her mom has to stop chemo because doctor says to stop. I'm very affected by her situation because I get a sense that her situation is probably more common then they should be. I can't help but feel that I have to contribute my 2 cents worth. I do realize that I'm not representative of most parents in the ocology ward here in KKH. I also acknowledge the fact that everyone is entitled to handle their situation the way they choose to. After all, I get seriously offended when people tell me that it's better for Char to be in a "better place, pain free and running"... I sincerely appreciate the concern and the words of comfort BUT what may be comforting to you might not be to others. As unique or as different or as skewed Cyn mommy is, you gotta admit that people like me give the system a good run, isn't it? For a system that is so used to send their patients home (far too early in my opinion) to die, you can imagine what kind of damage I've been doing here. I haven't actually mentioned before in our blog but yes, I've been creating HELL here in KKH and had quite a few meltdowns because I am horribly shocked to find that such things actually exist right here in my country. Can someone please enlighten me if I've lost too much touch - are we still a developed country or have we regressed?
Like I said, I know I am atypical in almost every sense. I don't understand why too. I am born and bred right here in Singapore. Read the same textbooks, drink the same water, eat the same food, breathe the same oxygen and yet, my brain and my heart somehow didn't develop the same way as my fellow peers. The only explanation I came up with is probably because I am one of the youngest mom here in KKH. Maybe its really a generation gap issue?!? Well, whether I am atypical or the minority, I would very much prefer that people don't directly or indirectly tell others that THEIR LOVED ONE has no hope and will die. Yes, medical professionals have an obligation to present the facts and the odds BUT dont take away the hope!!! No one has the right too. Maybe it's just me but I'm pretty sure even though I am in the minority group, I won't be the only one. I am ONE who REFUSES to believe those words. Clearly, I'm a rational being, I know my odds and I cope and prepare. Death is a given anyway; so what's the difference between you saying or not. Give me hope. Give us HOPE even when it feels fake. It really isn't important if it's real or fake because LIFE is ALL ABOUT HOPE and HOPE is what keeps everyone going. No one has the right to take that away from us. And really, if you have nothing better to say, silence is the next best thing to offer. :-)
A friend once mentioned to me that everyone is different and some people just don't think the same way as I do. That even in pain, there's still life worth fighting for. I respect that but I often wished that our culture could have been one that's more into offering hope by default rather then taking it away first and wishing that they are wrong.
Life is worth every bit of a fight, even in pain, even when suffering and even when the future looks bleak. All it takes is one nanosecond for a miracle to happen. Hold on for as long as possible because you never know what the next second might bring. Make a decision because you want to and not because the doctor said so. I made the decision to stop chemo and it was not influenced by any doctor. If I had chosen to continue, our doctor might have explained that it's not in the best interest but she will respect my decision. Seriously, I wish I can shout out loud enough to everyone that "Get a GREAT doctor who doesn't believe in giving up prematurely!!!" I've been in here more than 2 years and I know it's REAL that there are too many doctors who give up too soon!!!
You may see it as prolonging pain, I'm counting it by the additional smiles we accumulate each day!!!