That day,

6:15 PM June 23rd, 2009 was the day everything changed for worse!

I got a call from Mom saying Sush had a seizure, I rushed back home and reached by 6:30 to realize she got another one that lasted more than 30 minutes. I gave her the Valium and tried to reach the local Doctors.

I reached the local Hospital and rushed her there, Ambulance did not have oxygen. There she was given Oxygen but they said I might need to go to Manipal as she may require a bigger Hospital.

Anil and My husband reached my side quickly and we were on our way to the Manipal. I cannot remember anything but remember thinking she looked so pale blue..

Dr P was not in that night , she was out of town. Her next in charge got Sush to ICU and they started IV line and oxygen and medications. I don't remember thinking anything , it was a blur.
Besides we had so many hospitalizations in the past that I thought this one would also last couple of days..we would be out.

Then came the shocking news, she was in Coma. My sister called and I cried my heart out.what was happening, why was Sushmitha in Coma..I did everything I could , gave her all the meds on time.why

They told she aspirated into her lungs. She has developed Pneumonia. She was not opening her eyes and was in Status epilpetus. Her Seizures would not stop.

Morning got Dr P and looking at her my heart was relieved. She will do something she always does!! She has saved us before and she will now i thought.

I was still in a daze. Dr P said I need to watch this carefully as excessive medications for her lungs might damage her kidneys. I need to watch this.

She called to sushmitha to move her hands and she lifted her hand the second day. She was still in Coma they said. I knew She was battling her life ,I silently kept talking to her in my mind as we were not allowed inside all the time. Anil took charge of his sisters care. He was by her side 24/7 watching like a big bear , he sent me off on errands Knowing I needed something to do.

The 3 d day she started blinking her eyes. But it was not a happy ending. She also started thrashing around and started moaning like she was in great pain. we could not restrain her and she ended with bloody legs and we had to put her in a bandage.

Then they noticed blood on her catheter. Some one whispered there was internal bleeding.
Could it be her kidneys, I had no idea. I was numb with Shock of it all. She had tubes everywhere, she had IV lines and Catheter. She was given nebulization constantly. They also came started suctioning out saliva as she could not swallow. She was still on oxygen.

I started spending time with my sister on phone and sitting near by baby watching her. Eat and shower and then back to her side. Anil took care of me and her both , for a change he was like a parent. He was only 21 and acted so mature for his age.

Nothing changed in a week except both me and Anil developed back pain sitting by her side watching and changing her. ICU does not allow anyone to sit and we did not have proper seating. we were glad to be allowed inside as many would not allowed inside.

Sush was very Agitated and had constant jerks , twitching her legs and hands. when we held her hands and soother her she was a little calmer. Se also started moaning , meaningless mumble.

It was so hard to hear her moaning and twitching non Stop. Some days she would not sleep nights and even tore at her Iv lines.

That Day.

My Dad had cancer

May 2009, Dad was diagnosed with pancreatic cancer. We were shocked, he was hospitalized and chemotherapy started. Mom went into a shock, we had calls from everyone.

Life was in a roller coaster. Dad was in and out . I managed to run the home with Sush and running to the hospital. Doctor said he will not live much longer. it had metastasized.

We could not do much, we three sisters talked on conference calls. Decided to do what we can for him. Dad was Dad. We never were close to him as much. He was a quiet soul but he did his best or us.

I did not know worst was yet to come..

How it all started

I did not wanted to share my story with the world but my sister wants me to. She says it will help others someday, it might even make many people appreciate what they have today.

where do I begin, I must start from the very beginning before Sush ended up in coma.Her life that was filled with so much , how people loved her in karkala. She loved life , she was always laughing inspite of all the pain she had , medications she had to take, hsopitalizations. she went to school, she went to dance classes like other kids. She love eating bhel , she loved washing clothes with the maids, she sooooo loved animals.

She was born 1998 June 20th, a year after Deeksha was born. Deeksha is my niece that my sister had left in my care for a year, i loved her like my own. Looking after Deeksha I wanted a child of own..Anil was already grow up.

So sushmita , was born, she was so beautiful everyone said. She was 6 months when we noticed her knees twitched all the time and took her to the doctor. Thats the begining of my Journey.

She was diagnosed with having epilepsy. They call it fits in India.People thought it was contagious in India for some time. The endless trips to the hospital began , we started seeing different doctors and were always in some new hospital running a newer test.

My mother was always there with me helping me , as Sush would have seizures sometimes 20 times a day.. it went on like that until she was a year old. Then we hear about Dr P. She was the angel that God sent to me , well I did not think too much about it untill now. At the time she was for me the miracle Doc who helped my child stop having seizures. At least she would not have one that lasted a day.

Now and then she would have an attack in a month, or sometimes in a row in week. some times it would not come for about months. Sush continued growing like any other child with normal fits and excitement. She was slower than others. She had motor co ordination issues, she had learning disorders. but she loved what life enabled her to. She loved people instantly. She loved everyone including the maids that were hired to look after her.

She loved me and that still is the most beautiful thing that ever happened in my life. Her love filled my otherwise empty world. There was nothing in my life as my husband was too busy working and my son was caught up growing up.. sometimes I am guilty that I was never there for him as Sush needed so much hospitalizations.

He loved his sister too much, who would not?? she would call him Anil Anna( Anna is brother in konkani). She always wanted to people to love her. Moke madu she would ask us which meant I wanted a hug.

once my sister moved to US my parents moved with me as I needed help with Sush a lot.

Life was begining to Settle down, I joined Chethana School for kids with special needs. I though life had a new meaning for me now that there was something I could do to help other kids with Special needs. I helped the School collect funds, went to anyone that would donate money to the school. Even made my husband donate hefty amounts to school hoping some how helping others would help me too. Eventually I fell in love with those kids, between my Chethana and Sushmitha my life was going on as smooth as i thought life could be.

I was not content with life. I complained to God once a while, why did you take my sister so far away from me? she was my best friend, my mentor and my sister everything as I was to her.

We always hung out together, we were different than others. We never needed anyone else in life if we had each other for company. Then one day my sister moved to US. My life changed then but i had mom and I had you baby, I had you.

A SMALL RAY OF HOPE

I am very sure she shows tongue now. First she used to look at Dimple for sometime then after her much telling to show tongue she used to bring tongue out(not fully). Then she started showing just by giving command- jeeb dakayi. Even while she was eating sugarcane she used to watch Dimple then wait for her to say kacchu(bite) then again bite and stop again untill she says kacchu bega bega(bite fast) They are changing physiotherapists every month.So what one achieves if other person does not follow that improvement goes.Even they have more patients in thier clinic so thier time is also reduced.So when she is improving I am having these kind of problems.We are now paying Rs 15000/ for month. I think best option is hire some physiotherapist and hire him fulltime.