Thank you for sharing your story. You are a brave mama!
This is a discussion on The power of love within the Parenting Special Needs Child forum, part of the MummySG Special Group category; Hi, Mummies! I'm a newbie here. Glad to have find this forum which has somehow unite most parents of special ...
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.
Thank you for sharing your story. You are a brave mama!
Yes thanks for sharing......
Keep on gg, it's not only the love that will keep you gg, but also a hope for a miracle..........
Thank you for sharing your story with us and I can fully understand what you have gone through when bad things happened one after another within a short period of time.
My dad whom I was very closed to died of sudden heart attack about 3 weeks after I gave birth to my son. A month after his death, my son was diagnosed with this brain injury condition. My womb ruptured during delivery for no reason and my son suffered a lack of oxygen to his brain. I almost lost my life during delivery.
As a result of my son's condition (celebral palsy) where we forsee we would need my in-laws help in looking after him while I can continue to work, we moved out of our house and moved in with my in-laws. I rented out my flat to help supplement the high medical expenses we need to spend on my son. Both me and my hubby cried when we went back to our flat to pass the house keys to the tenants because we love our house very much and have many fond memories of the house and days before all these things happened.
We dont know our output (medical care, therapies, etc) will guarantee good returns nor how to turn this scary/unknown journey to a smooth one.
My child may never say "Look Mummy. Listen, Mummy. Are you watching, Mummy? Mum, carry me!", Mummy, milk milk .... I may feel frustrated and blaming my fate and asking 'why me', why am I given a special child .... we may not be able to accept a special family member in the initial months but as a parent, the Power of Love makes us put our feets forward!
To stay resilient and to keep striving for betterment, everyone needs encouragement and hope. Just a note.... This forum is for special needs parents to rant, share, relieve some stress, bring in little sunshine in this 'stormy' world, etc. I'm a special needs parent, not a Counsellor nor Dr, thus, what I posted in this forum are my thoughts or experiences so it may not all be helpful .... could be discouraging.... This forum is like a family of emotional support to provide assistance (ermm.. we need more 'professional' members to post) and encouragement. From this backbone of support, hopefully optimism, confidence grow and continue yr journey down the road to a joyous successful life.
Angelman Syndrome Rare Genetic - deletion of Chromosome 15
JiaYou!! Its never easy taking care of special needs child. For many they dont understand as they never went thru what you did.
Thanks utpai for sharing your story. you're indeed a brave fighter mama like many of the special needs parents here. A BIG SALUT TO you ALL!!!
thanks for sharing your story. Like you we've added a little brother to my special girl too. Hope the love between them grows.
Thanks for all your sweet encouragements. Didn't expected to get much responses since it's my first time sharing. Angelmum, glad you've started such a wonderful post. THANK YOU so much!
To KJ mummy, thanks for sharing your story too. There are always certain things in life which we have been forced to accept no matter how unwilling we are. It's really awful to grief for so much losses at the same time. On the other hand, at least, we are lucky to get kind support from our in-laws. Hopefully, your boy would be able to show more and more improvements as days go by.
Let's all work hard together for a better tomorrow, hope and miracle.
utpai... thanx for sharing your story. like you, i also like to share my "hardship" days and hope it will inspire someone to treasure their loved ones, their lives, or just be thankful. tis way, our child has not suffered for nothing. they are angels sent to spread love.
KJ mummy.. i understand how you feel about your house. we also sold our house to be nearer to the hospital, my parents (who help out), and also cos we were in 5-room, and if we ever need financial support, they wun help us. we were also very sad when we handed the keys over, but were very glad the new owners loved our house very much. we visited the flat sometimes, and peered in frm the multi-storey carpark. but we are very happy in our new place now, so i guess everyone has to learn to move on, and appreciate the current things in life, and to count our blessings.
forget the things that didn't go your way... celebrate the things went right, even simple things like finishing a milk feed, a good nite's sleep. my ger just won a bronze medal in a simple bowling game (she just push a ball) in her special school's sports day. yeah! :P
we really need alot of encouragement & positive thots over here