It is not easy for a mom to accept the fact that her child is exceptional and will have challenges doing simple activities. It was very tough on me to accept the fact that my 2 month old daughter was suffering from some kind of atrophy to her brain which had taking away her ability to see. The effect the brain atrophy would have on her life was not known then but it was clear that she had no vision. My cute little baby who looked so healthy with beautiful eyes had no vision and suffered from some unknown terrible malady which could take away more of her much needed abilities was unacceptable to me. The VEP proved she had no vision.
Somewhere they are making a mistake, the machine must be faulty, they are not efficient enough for this tests.. my heart ran various tapes, where as it was me in the first place who had observed that my daughter was not making eye contact when I breast fed her. I was quite stressed and always tensed. My daughter stopped laughing and smiling … she even started feeding less and less. Panic struck me with the thought that may be the demon lurking in her has gained more power. May be I will lose her. What will I do if she just starts slipping from my hands? I felt so helpless and sad most of the time. Then I saw that my son was not smiling much anymore and he was not eating well too. Common sense took over and told me that the demon did not have any power over him, so why he is behaving like my daughter. Truth dawned on me that it was my tension and panic of the last 40 days that has been rubbing off on my children. I could not believe that my baby who was 3 months old could actually respond to my stress and tension. I thought of changing myself.. I had to give it a try. I built up enough courage and said to myself ‘Yes, my child is not an average person, she is exception. She may have difficulty facing the world and I being weak and sympathetic will only put more hurdles in her path. I am not going to let that happen. We are going to fight the odds against us together. I am going to take it all one day at a time and give unconditional love to my children I will make sure that I will never make my son suffer because he is normal or if he is not. He will get all the attention and love he deserves.
It may look simple here when I type it but back then, it took a lot of courage on my part to say it even to myself that my child will live with special needs. Soon enough this small acceptance of fact made a lot of difference to all of us. All the false hope I carried of getting up one fine morning and finding out that the doctors had made a mistake, or they calling me to say a medicine has be invented to cure her every problem were flushed out. It was painful to flush it out but once done the stink it carried was gone. I took a deep breath and started to look for positive points in her along with accepting the negative ones. I could enjoy her company without being tensed and soon my baby started being her self. Smiling, playing, feeding and loving me. My son too came out of the shell he was withdrawing himself into on seeing Maa always occupied with his new sibling. He started helping me to feed her, dress her etc and the routine continues till today. With tears in eyes I thank God for blessing me with such a wonderful son who has always put the interest of his sister ahead of him. He understands her enough to be able to guide me in taking good care of her when I have faltered in maintaining the balance of love and discipline. Miracles did happen one by one.. slowly and I did not even realize they were miracles. She gained eye sight at the age of 11 months. I was sure she could see though the doctors refused to believe me in the beginning. She started to sit, crawl and the age of 5 could walk with support. I never asked for miracles anymore but never quit trying. The toughest part came when soon after rejoicing her vision I had to deal with breast cancer. Fear, tension and panic attacked once again and the impact was soon visible on my children. So I pulled myself together once again, and took everything in my stride calmly. I am not going die was my resolution and here I am … keeping my word.
My daughter is growing up into a lovely woman; she has gained few skills which we never expected from her……. slowly. At times she amazes me with her memory by finding lost things. She knows exactly where the keys are lol. She can communicate with us very well though she has not gained command over all the words. Above all she feels love and affection for everyone and everything around her. Putting the phone down hard means I hurt it… for her everything from a pillow to slippers has pain cells. Anyone who has loved her has got it back multiplied in three folds. Going to be fifteen soon she is still a baby.. who is not capable of sins. Back then her condition looked like a curse to me.. but today I have a vision to see the real curse people face. Hatred, jealousy, lust etc is making demons of us. When I read the daily news, though it is almost same everyday it never ceases to shock me. Chaos rules the world at the moment and hatred for trifle reasons like colour of skin, the way people are, the way people worship etc anything goes to create hatred. Greed is also so prevalent where parents themselves have burnt a girl alive for material gains, lust, rapes- the papers are full of horror tales. Isn’t that a curse on us? Who are the people under that curse? The ones who are considered normal and intelligent by our society.
I no more feel the need for a change though I agree it hurts to see her struggle doing everyday chores. She yearns for activities which we all take for granted. But at the same time she is free of the curse and stands as a symbol of purity… She is a precious special child who deserves all the love I can give her and more…………..