Looking at the chubby happy face of Ruth and her effervescent voice when she says “ heellllllllllllloooooooooooooooo didi ” with a beaming tone , one feels “ all is so well” with her. Well, everyone has their ups and downs you might feel… But not always so.. When you manage a special child 24/7 and fight with world like tigress to give the same respect to the child as she gives.
Well.. some days child is neither child nor adult, I wonder how Ruth manage those things single handedly, I am selfishly happy that she is there for Bryn to do that ( like any other disabled person who wants a care provider all the time ) sometimes I am equally guilty that.. but Who is asking for ruth’s rest , her passion and her time and her alone vacations? Not that people around her care less for her… they love her crazily.. .. But some people are so irreplaceable and since eons of years, care of the child is mother’s responsibility, if its special child double, triple and hundred times responsibility.
Meeting ruth and glancing through her struggles balancing a well formed and sensitive audult special kid.. Make me understand and feel guilty about the way my mom worked for me , my aunt poured all her time into me, now Anand.
Sometimes you feel so guilty.. What bryn must be feeling now? I always felt if someone is throwing tantrums.. There must be some difference, or some disturbance that’s peeping in their mind..
Brain..Oh!! what a tressure and pressure too..! I remember my mother breaking down at every surgical recovery rooms I went , my father acting smart but feeling fear inside whether I will survive another surgery or not, my pinni’s patience every time , when I have to go through raging fevers and lung congestions due to scoliosis and afterwards.
How ruth must have felt when Bryn fell from fleet of stairs and still survived with a head injury and his crooked beautiful smile..!
What my family and now anand going through sometimes even helping us pee and cleaning our mess…!
Life is not easy? Don’t the god know that what bryn going through and what my right side is going through ?
Talking a friend who has an autistic son , she was quipping about a accepted fact that, her son will never have a mature conversation like normal children with their parents. Does god didn’t know this? Sometimes I wonder at the immense strength of mothers like ruth..!
Unless until they accept fully the special child as part of their core being, it is not possible to feel them like an arm or leg or apple of their eyes.
However much I praise , I cant praise the care providers in our life.. my mother, grand mother, pinni and anand..!
In case of bryn, Ruth, Daisy, James garu and gang of ruth friends and young boys
Having said that, I don’t like god.. I hate him for the fact that, whats going to happen when all these care providers are gone ? the shit part of life is disabled people live longer.. Arun shourie wrote a beautiful book on disability and acceptance by name “ does he know mother’s heart??”
Enough of mothers.. I am waiting for this space to be filled up by one or two fathers at least. Fathers who avoid gazes when they look at disabled children, fathers who never introduced their disabled children to public, fathers who divorce wife when children are found to be mentally/physically disabled. Fathers who just abandon being father..!
If god is a father.. I ask him one question and one request,
My question is… Don’t you know the mother’s heart and survivors guilt?? what are you doing for it ?
My request is … please please oh! Supreme power… help the care givers with more energy and rest, at least give them temporary reliever in their jobs..!
I want to feel gratitude for all the people who helped me… but no matter how much I feel gratitude, the steps are not going turn into a ramp and the unknown brain doesn’t calm
Bryn doze off in tranquillizers and I try to doze off in unanswered questions and new pains & sensations
Have happy sleep Bryn .. Have strength Ruth .. if I can transfer my whole brain strength .. Take it till he calms down.. LOVE YOU RUTH !!
Didi & Anna
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