She merely stopped the steriods for a month, and now the infantile spasm attacked again. I’m beginning to wonder, the steriods are just to suppress the spasm, and not cure. So, is there a cure for it? When will my girl be free of steriods totally?
I dread for tomorrow to come. Bringing her to KKH for another EEG test, and seeing the neurologist. What outcome will it be? How will I react if she’s put on steriods again? Or worse, some other medicine that will cause loss of vision? Am I able to handle all of these?
Everytime seeing the spasm attacked her, I couldn’t really describe how I felt. My heart hurts, I get very depressed, I have no mood to eat. And everything negative just strikes me. Hurt and depressed isn’t enough to describe my feelings right now.
I started chanting daily. Though I find it not enough, whenever I have the time and chance, I will chant. I’m just fighting against time, chanting for a miracle, yet tomorrow is the day the doctor will tell me what should be done with Hazel’s spasm. I have to be strong and no tears in the clinic.
Though I am having difficulties in accepting Hazel’s developments are so much slower, the one thing I’m very worried about is her eyesight.
Hearing her laughter, I wish I have the power to keep it with her and she will laugh and be a happy child every minute, every second. I wanna have the power to bring away her pain, her uncomfort. I wanna have the ability to make her a healthy child just like any other kid.
I have lost count how many times my heart sank to pit bottom, how many stabs I have taken, how much tears I’ve swallowed, how many times I wanna give up and how many times I’ve picked myself up.
My friend is right. Jiayou is a taboo word for me. So many people asked me to jiayou. Am I not doing enough?
Times like this and I received such words to cheer me on, it just made me feel worse and made me think I’m such a lousy mom.