Hi, Mummies!
I'm a newbie here. Glad to have find this forum which has somehow unite most parents of special children to share their grief, guilt, frustrations and joy while searching for a sliver lining of hopes.
Being an introvert, I feel more reserved to speak freely of my gal's condition to friends and relatives. Having a special child has really taken a toll towards our life. Unfortunate life events seem to arise one after another. While preggie with my first child, my dad suffered a severe stroke which left him bedridden. Throughout my entire 2nd and 3rd trimester, although my irregular EDD date kept pushing backward and my fetal was very small of gastational age, my gynae kept assuring everything was fine. Nothing to worry about. Then by 37th weeks due to low birth weight, I went under the knife. When my gal was born, she weighted only 1.7kg and was in PICU for 3 weeks.
Bad news didn't end here. On the 3rd day, the paed came to inform us that our gal has a whole in heart. By 6 months, when my gal was still floppy and lagged behind most of the milestones. The paed referred us to Kandang Kerbau Hospital for FISH test and result was a rare chromosome disorder. My world total crashed. I lost the battle, I hated the result, I raised the many big "Why". Doc said it was novo case as both me and my husband's result were normal. She didn't offer much advise on what to do and expect for my gal's condition.
It was a painful and hearbreaking journey. Juggling between my bedridden dad and her, I couldn't stop working due to much needed $$$. She developed epilepsy and had trouble sleeping through the night. For few years, we were deprived of proper sleep as she would fussed from 3am til dawn. I'm really at the verge of mental burnout and breakdown.... Later, she went on for a heart closure surgery.
We tried whatever therapies which deemed suitable. From cranio sacral to alternative therapy to chinese traditional chinese medicine's massage and acupuncture. If not because of financial constraints, I would love to try more.
Along the way, my dad passed on and we added a little brother for her. He is a sweet boy and loves his little big sister very much. Although she still couldn't walk and talk, at least she is a playful and happy gal. Every smile and giggle from her brought laughter to the whole family. I have somehow outgrown from denial to acceptance.
Most of us stumble and fall at some point. It is the power of love which eventually make us stonger than we ever thought.
Cheers!
I'm a newbie here. Glad to have find this forum which has somehow unite most parents of special children to share their grief, guilt, frustrations and joy while searching for a sliver lining of hopes.
Being an introvert, I feel more reserved to speak freely of my gal's condition to friends and relatives. Having a special child has really taken a toll towards our life. Unfortunate life events seem to arise one after another. While preggie with my first child, my dad suffered a severe stroke which left him bedridden. Throughout my entire 2nd and 3rd trimester, although my irregular EDD date kept pushing backward and my fetal was very small of gastational age, my gynae kept assuring everything was fine. Nothing to worry about. Then by 37th weeks due to low birth weight, I went under the knife. When my gal was born, she weighted only 1.7kg and was in PICU for 3 weeks.
Bad news didn't end here. On the 3rd day, the paed came to inform us that our gal has a whole in heart. By 6 months, when my gal was still floppy and lagged behind most of the milestones. The paed referred us to Kandang Kerbau Hospital for FISH test and result was a rare chromosome disorder. My world total crashed. I lost the battle, I hated the result, I raised the many big "Why". Doc said it was novo case as both me and my husband's result were normal. She didn't offer much advise on what to do and expect for my gal's condition.
It was a painful and hearbreaking journey. Juggling between my bedridden dad and her, I couldn't stop working due to much needed $$$. She developed epilepsy and had trouble sleeping through the night. For few years, we were deprived of proper sleep as she would fussed from 3am til dawn. I'm really at the verge of mental burnout and breakdown.... Later, she went on for a heart closure surgery.
We tried whatever therapies which deemed suitable. From cranio sacral to alternative therapy to chinese traditional chinese medicine's massage and acupuncture. If not because of financial constraints, I would love to try more.
Along the way, my dad passed on and we added a little brother for her. He is a sweet boy and loves his little big sister very much. Although she still couldn't walk and talk, at least she is a playful and happy gal. Every smile and giggle from her brought laughter to the whole family. I have somehow outgrown from denial to acceptance.
Most of us stumble and fall at some point. It is the power of love which eventually make us stonger than we ever thought.
Cheers!
