Have you ever tried walking in a daze, carrying your little one in the carrier, mind is thousands miles away, yet somehow you still can reach your destination? Yes that’s me today.
I dunno why but today seems so blurry to me. My mood is at a pit bottom, everything seems so dark, gloomy and grey, just like the sky.
Hazel’s current status is:
Spasm once a day 10mins (Inconsistent)
Rashes on face whenever having spasm
Feeding her has become stressful again. It used to be stressful but the problem was we had to use syringe, her appetite was still ok as she can hit 700ml a day. Now she hardly drinks at all, daily hit to a low 400ml. The thought of hospitalization, the needles, the feeding tube, the drip… all these freaks me out and I sat alone in the living room crying. It doesn’t help when she woke up with spasm and my heart breaks to see her suffer. Other than the consoling words telling her everything’s gonna be okay, hugging her and carrying her, what else can I do? I dread the thought of her going back to steriods. She has hardly recover from the side effects and will the doctor be putting her back on? I’m really breaking down. Most of the articles I read are all steriods steriods and steriods. It was so demoralizing.
I wish someone could have come to me and tell me, “Hey! This works for my kid and I’m sure it will works for yours too!”. Sadly, every child is different. Even though I’ve known some families with the same syndrome as Hazel, they all reacted differently before and after the medication. I seem to be lost in a maze, frantically trying to find the way out which can avoid steriods yet no more spasm for her. Is there? Is there any in this world?
Many friends told me how strong I was, what a great mommy I am. What they didn’t know is I am a loser. I let my emotions get the better of me. I start to lose hope. I’m starting to lose my mind actually.