COMPLETING TWENTY FIVE YEARS OF MARRIAGE

On May 8th we completed twenty five years of togetherness(marriage). Everybody was forcing us to celebrate. There is no meaning to celebrations when your child is in bed ridden. Even my elder brother in law completed fifty years of marriage. We did a small function in their house. There was a small get together. Even people poured us with gifts. It is not the gifts that matter. It is the well wishes and hidden love which really matters.People were forcing me to attend rathosava. I didn't want to go.Because Sushmitha liked going  to Samaradhane(meals) in the temple. How can I go without her.Her awake schedule is also changed now. She remains awake at night. Sometimes I sit till two or two thirty. Sometimes I cannot. We Just change her and then I go back to sleep. By morning if she is awake we will be changing her many times.

PRESERVING HUMAN VALUES

I have seen always people are great in their professions . But concerning preserving human values or when it comes to sharing other peoples problems they are indifferent.But there are people inspite of being good in their professions they have good human values too. I wanted to start a home nursing training. When we approached Dr Kini of Prathibha hospital he was very supportive. He told us not only You can give training here I give the entire hospital for your service.Further he told he will support us by providing patients for nurses.  Even Dr Ramachandra Joishy was very supportive. He is the president of doctors association here. He told he will give his support and also he will talk to other doctors and let us know.Sushmitha's doctor Dr pushpa Kini was very happy. She has always been my emotional pillar and she knows it has been my long waited dream. She gave me tips on the points nurses are to be trained. I am really touched by the support of everybody. This got tears in my eyes. 

TIME PASSES AND YOU BEGIN TO SEE PEOPLE FOR WHO THEY ARE AND NOT FOR WHO THEY PRETEND TO BE

Relationships these days are suferficial.Nobody seems to really care for Sushmitha.It has been three years now and I can see people for who they are and not for who they pretend to be.Every relationship seems fake.I am really disappointed. But there are some angels who have understood me and stood by me.I am going to shop now. and there when there is time I daily go through internet about caring and problems connected with bed ridden patients. I really want to do eveything for her. I am giving her warm water to drink whenever she is made to sit so that her throat is not dry. She is more awake now. One my nurse went home along with her sister and we had a very difficult time. I used to take bath in the evening. Even my driver resigned job. I had the additional work of bringing groceries and vegetables.So during night duty I used to be very sleepy.

ATTACHED TO SUSHMITHA'S BELONGINGS

I am very much attached to Sushmitha's belongings. I have preserved her dresses,her books, her hair clips her cycle, her dools. I don't like if anybody(anychildren) come home and play with her doll.There is a alteration going on in godown near our house and a worker brought his daughter along with him. My husband wanted to donate the cycle to that girl. But I told him I want to keep her belongings the way they are. Actually I have preserved Anil's notes also. People don't understand my feelings. Sometimes they ask silly questions like whether she can take food or she can turn over. When I say she cannot it is so difficult and that is which they don't  understand. Sushmitha is awake at night now. She gets up at night 12  o'clock and sleeps  in the afternoon 12 o'clock.Sometimes I stay awake for her sake till 2 AM and sometimes I cannot. I am having heel pain from 2, 3 months. I am taking physiotherapy, hot water dip, and calcium tablets on doctor's prescription.Life seems empty. There is so much unhappiness at home. People quarrel for silly reasons. I try to forgive everybody and try to see everybody is happy. Then I say to sushmtiha I do this only for you my child, only for you.

SUSHMITHA'S DAILY ROUTINE

First thing what we do in the morning is at 6 AM in the morning first after her first dose of medicines serenace and pantacid I take water mixed with clohex mouthwash and saline water and brush or rub her teeth with cloth dipped in the solution. After that I give nearly 5 to 10 minutes of cheek and jaw and tongue exercises to see that there is no mouth and jaw tightness. Then after making her sit in the chair I give her coffee. After that we start her feed sofit(soya milk drink). Then we give manual standing because her legs sometimes will be little swollen because of not moving at night and evening.and I believe it will increase blood circulation. Because I can see the colour in the legs rising.then it is 7.30 AM and it is the time for medicines. After that we give her nebulisation. After that at 8 AM it is time for rice feed.Before giving the feed we give her neck exercises. and along with feed going down trough rice tube we start passive movements.Which includes hand and leg movements and plantar stretching. When we give hand movements we keep legs folded  so that her lordosis comes down(back not touching the floor).If she is awake I start swallowing session. I give her sugarcane to bite (jaw and mouth strengthning) and lollipop( for tongue movements).Then usually she is taken for bath. Again I brush her teeth this time with brush. I open her mouth and keep my finger inside so that it is open and my nurse cleanses with brushing the teeth just as we do. I believe oral care is very much necessary for bed ridden patients. Then it is daily head bath. I use a liitle more hot (toelerable) water for back pain due to constant lifting and shifting. Then again we give her bath in the evening( only body). After that we show her visual toys(if she is awake)We show mirror for eye movements.We also five her commands(which now she is not doing now). Only she gives eye contact. After that we call her from up(from upstairs), from window, from backdoor. Visually she gives good response but it depends on her alertness level also.Sometimes I give her activities to follow like sweeping the floor or me combing hair. or taking cobwebs.Then we start our daily rolling form side to side, cross  srteching, cheeck and neck exercises again leg flexion,Abductor strching,hand weight bearing, straight strchings which evolves hamsrting streching and prone on elbow for neck control. Then chest physiotherapy is done to loosen all secretions(slowly and gently). Again by now it is 12 in the afternoon and again we give her tilting table standing.We constantly try to move her by making her sit as often as we can also giving her rest in between.The as 12 AM feed goes down in the rice tube nurses take afternoon lunch and after lunch they go to take bath.After coming back and after afternoon session of medicines an nubulisation in the afternoon it is time for 2PM papaya juice feed.Now her wakefullness is more. She startles at small noises just as small children do.Sometimes her choriform movements are more and movements are more sometimes.Sometimes if we have time we give traction and trunk rotation.This month full she had cough and loose motion. She was ok for sometime then again she started having cough and again there was loose motion.Doctor Pushpa Kini told me to get the water checked once and the water was found to be defective. Again this needed us calling the official who cleans water almost everyday. Then after cleaning well now we have started using the water.

COUGH LOOSE MOTION AND DIFFICULTY IN SWALLOWING

I don't know what is wrong with Sushmitha. She had severe cough an loose motion again from few days. She has difficulty in swallowing also. I don't know whether it is because of choriofrom movements or increase in movements. I saw Sushmitha's classmate Madvitha going to school. God what fault of Sushmitha she has to suffer? If I meet you some day You have to answer this. I reported Sushmitha's condition to Dr Pushpa Kini. She prescribed antibiotics and added nubulisation of improvent and duolin. I get some kind of relief whenever I share my problems with her and she understands. There was opening of our new shop in Mangalore. Our sunmica showroom. We got government grant for Chethana. Now we need not worry about donations and funds anymore. Even the Muncipality people were concerned about our children specially president of Muncipality Prathima Mohan and chief officer Gopal. They gave us nearly 300 chairs, fridge, utensils, 100 plates, 100 glasses, almaira's with individual compartments, long dining tables. Even each child in muncipality area got financial help of 5000. They paid one month diesel bill also. This was really a big help to us. But now we had a new problem. We had to give account of every penny we spent which was difficult because we had not collected bills so far Like sometimes we buy vegetables on market days and there they don't give bills. That too a fixed amount we have to allot to food medicines, clothes, teachers salary, vehicle(deisel and maintanance). But evey money we go we have spent on children and teachers. But getting bills on earlier dates is a bit difficult. Our cause is good and our concern genuine.

SLEEPING CONTINUOUSLY FROM FIFTEEN DAYS

Sushmitha has loose motion from fifteen days. And she is sleeping continuously. I went to our old house and got some old snaps of Sushmitha.I feel very sad.  I wish I can rewind the past.But sometimes things are not in our hands.Nobody can do anything.My sister Anitha says the only thing now I can do is love her unconditionally. Tell  her baby I will love you the same in whatever condition you remain.She says Sushmitha has come in her dreams and begging her to let her go because life here is very difficult for her. At some point may be one day you have to be prepared to let her go she says. She says she might be holding on to life because I am holding on to her.She asks Geethakka imagine yourself in that situation. Think of hte sufferring she is going through and she says I should not be selfish to want her in this situation. I tell her I don't know what is right or wrong but she has fought for her life to be with me so I will stand by her.I tell her after this situation I cannot love other children. Geethakka you are angry at the whole world. and the people will surely understand you she says. The other day I heard about a baby abandoned by his or her mother. I sometimes think how a mother can be so cruel or what circumstances might have led her to do that. Because mother is a  mother after all.