This has been my dream to share with “Jeena” a little about my life and little adventures. No, this is not a Wimpy kid diary, but my life diary. Jeena is the “Place of Opportunity” for me to share, perform and get stronger with my peers.
Before I share my experiences with you, I would like to thank Jeena, all the Doctors, Nurses, Therapists, school staff and IEP team, respite care providers, and of course last but not least, my loving parents. All the people who worked with me gave me lots of love, care, hope, strength, and confidence.
I was born a beautiful child in Bangalore, but became a victim of medical negligence on my 3rd day of life. On the 2nd night, I started suffering with seizures, and was hospitalized for a week fighting for life and light. I was blessed with life, but not with light. I lost my vision and my Optic Nerves were damaged. I was diagnosed with cerebral palsy and global developmental delay. I cannot tell you how much I can see the world because I can’t even talk to you. But I can talk through my Mom. She is my treasure. You all can see me, and talk to me. This is my opportunity to tell you my story through my mom.
With multiple disabilities, I’ve had many challenges, to learn even the most basic activities of life, something many others taken for granted. I can tell you that people who have normal and healthy life will not know these struggles; only when things go wrong, one tends to understand the difficulties involved. I’m fortunate that Mom and Dad have been helping me all along.
It took me 4 years to walk, but now I love walking all the time. I bug my mom a lot, but she does not mind. She is “Mother Nature”, and takes care of me all the time. I have been given a lot of opportunities to learn, feel, and enjoy life. My parents help me slide on snow, swim in water, ride at theme parks, and walk in the caves.
On August 4th, 2007 Jeena had arranged a picnic at Francis Beach, Half Moon Bay. I was happy to see other Jeena parents and my friends at the beach. We built castles in the sand, played in the water, walked on the sea shore, and played ball. We all had lot of fun. You can watch my video on http://www.youtube.com/watch?v=kpoPrA3qaXE.
When I was 5 years old, my parents took me on a tour to the east coast for 10 days. Mom was expecting my little sister at that time. We were at Niagara Falls, which was freezing cold and snowing everywhere. Dad was throwing snow all over me and making me laugh a lot. That was a fun family trip, I thoroughly enjoyed with my parents. Although it was difficult for them to manage me, they loved me unconditionally.
Year 2010 was another good year for me. We had been to San Diego Zoo, LegoLand, and Magic Mountain with my young sister Nyla. She was just 8 months old, and I was 6 years then. I remember my first roller coaster ride with my Dad at “LEGO LAND” on that New Year Eve. Being visually challenged, I felt the ride was really fun with people screaming all around, and wind gushing past my ears. Dad kept explaining me while we were on the ride and we had loads of joy.
Let me also walk you through on my adventure in “California Caverns” on 2010 Memorial Day. Don’t ask me “what a blind person can see in the cave”, but challenge me how I walked more than 1 hour trail in the cave! It was a narrow path, slightly dark, and 45 degrees Fahrenheit inside the cave. My parents had faith that I would walk with them inside the cave. Mom was chanting “Om Namah Shivaay” to boost my strength and Dad was carrying Nyla in baby belt. My grandma was also with us walking in the cave. This was one of the best walking adventures I ever had.
Did I tell you about my volunteering at “Mystery Spot” in Santa Cruz? When the tour guide asked for two child volunteers, Mom asked me to step forward and stand in front of the other child of my height. We both were standing on level ground, and it was fun for everyone to see that I appeared ‘shorter’ initially, but ‘taller’ after we switched places. People were equally surprised that a disabled child volunteered to demo the ‘mystery’ in that spot. Inside the ‘mystery hut’ was the best experience I had so far. I felt someone was pulling me off to one side without touching me, when I stood straight. For those who know, there are many theories about this, including gravitation anomaly at this place.
When I was 6 years old, mom visited India with Nyla for my uncle’s marriage. I was with dad for 7 weeks in U.S.A. With a fulltime job in hand, he managed me with great love and care. From helping me go to school, to helping me with all my daily activities, I had a wonderful time with him. During this period, I had an uncontrollable seizure for 9 minutes at a stretch, and Dad rushed me to Emergency. He was with me for half a day at the Hospital since mom was in India. When he called her later, she was broken to hear my situation. I could understand my parents’ pain. I’m still alive just because of their love and care.
Thank you for your interest in learning my story that I wrote through my mom. Please continue to help kids like me. Life is surely a gift by God and blessed by Him. We, the special need kids, have our share of duty and adventure to do in this world. All we ask is your love, affection and a little hug. This will bring a change in us and in you.