My Little Fighter

Over the centuries, The Banyan tree has taken on significance as a symbol of fertility, life and resurrection. It is a fitting symbol for ‘DesiStoriesAshaUSA’ which presents the stories of South Asians who have wandered far and wide from their ancestral homes, traversing new frontiers and setting down roots and networks in the US. Our goal is to connect and establish closer ties within the diasporas of the South Asian community and facilitate a dialogue with our readers, one story at a time. We will showcase stories of achievement and success and also resiliency and hope during the COVID pandemic.

Our story today features the heartwarming saga of Rijuta Pathre, and her 43 year quest, to give her daughter and other children born with severe mental and physical disabilities, a life that all children enjoy.

“I see a young bud blooming into a new personality. She is not the unreachable soul with a twisted body. She is in contact with the world and with emotions, fear and love”.

Rijuta and Sadanand Pathre’s second daughter Meenakshi, affectionately known as Minu was born in 1979. From the early age of 2 months, it became evident that Minu had significant disabilities that left her unable to speak, and engage in activities like crawl, see and move. At the age of five months, after undergoing a battery of tests, a doctor at the University of Minnesota, told them that Minu would not see her first birthday: “The parents should put her in an institution and forget she was born. She is not going to amount to anything”. These words seared her consciousness like a branding iron!

Three years ago, Rijuta and her family celebrated Minu’s 40th birthday!

“Everybody’s life has importance, no matter what their ability is. Minu is dependent on other people’s care, but she has such stubbornness and will power that she gets things done in the way she wants. So she has power over her life. She cries, she has facial expressions that convey her desires, and then she has that big smile that makes everything worthwhile”.

FAMILY LIFE

Rijuta came to the US in 1970, soon after her marriage to Sadanand. The culture and lifestyle were new and strange, but she assimilated, catering to her passion for Indian home cooking with improvised ingredients, viewing Bollywood movies at the Bell Museum and meeting other young Indian couples. She became one of the founding members of the Marathi Association of Minnesota, and the Bharat School which later evolved to SILC (School of Indian Languages and Culture). Rijuta also became involved in the community, organizing cultural programs from dramas to children’s dances, and flexed her writing skills by penning skits. She recalls these times as some of her “most fun days”, struggling for money, but deriving great pleasure from a shared ice cream cone with her husband (a Ph.D student in chemistry at the University of Minnesota) bought from a left over laundry quarter.

Their eldest daughter Anviksha was born in 1974. She is a successful Psychologist with two practices in Chicago. Happily married, she has blessed Rijuta and Sadanand with two teenage grandchildren, aged 14 and 11.

The strong bond between five year old Anviksha and Minu was fostered from the time Minu was born. Anviksha was made to feel an integral part of Minu’s care team. She even insisted that Minu be her First Grade ’Show and Tell’ project, her story focusing on: Our love for her; How cute she is; How we care for her”.

Meenakshi (Minu) was born in 1979 and labeled ’severely’ impaired, without a specific diagnosis. Prognosis was dim without much hope for the future. Ignoring professional advice to institutionalize her, they brought her home to love and nurture.

For 11 years, Rijuta took care of Minu alone while Sadanand supported the family as a chemist at 3M. Minu was enrolled in an infant stimulation program, then she went to a Developmental Achievement Center (DAC), and finally to the public school’s multi-handicapped unit. The teachers were wonderful and the family received a lot of support, but it did not move Minu upward.

Just about then their prayers were answered. They were able to enroll in ’A chance to Grow’, a Sandler Brown Program. The first six months were hard and demanding, yet gratifying. With an army of volunteers that included family, friends and 21 parishioners from the Blessed Virgin Mary Church in Maplewood, Minu was attended to 6-7 hours a day. The positive changes included weight gain, fewer illnesses and even a crawling pattern on the floor.
Unfortunately, after 4 years and a home move, they had to discontinue the program as they lost most of their volunteers, but key positive changes stayed that included: normal light reflexes and tracking people and objects; “she is aware of her surroundings; understands language; and can even throw temper tantrums”.

PARTNERS IN POLICYMAKING

Around that time, Rijuta joined a two year leadership training program for parents of children with disability: Partners in Policymaking. ”When I graduated I was so empowered. It changed me inside out. I became a fierce advocate not only for my daughter but for all people with disability”.

A summer workshop provided new skills such as writing and reviewing grants. Rijuta was also selected to serve on their Rule Advisory Committee, and became part of a study group to implement legislative changes. It gave her direction, a new path to march on and appreciate life as a precious and divine asset.

“It enlightened me to get actively involved in different organizations, to voice my concerns, work on changing laws, become part of a task force at the state level on information dissemination at doctor’s offices, reaching health and social workers and affected parents. Rijuta also sat on many Governor’s advisory councils and was a board member of the ‘Special Education Advisory Council (SEAC)”.

MINU ENJOYING LIFE

“I never would have imagined my daughter taking horseback rides or going to Disney World. Minu goes camping, for a walk in the woods with us, and to Anviksha’s dance recitals. We take her to the mall and out for lunches and dinners, where she sees her friends and kids from school, and all the kids who have known her don’t think anything different about her”.

After traveling to memorable places like England, India, Yellowstone, Grand Canyon and California as a family, they discovered camping. Minu joined them on all their camping trips.

Rijuta wrote a prize winning article for the St Paul Sunday Pioneer Press, of their trip to Itasca National Park, genesis of the mighty Mississippi river. Preparing for every emergency, their gear could have taken them to the North Pole!

”We felt such a closeness that nothing else seemed to exist. Open space with a blanket of sky full of stars. Our family seemed to be closer than before. We laughed, watched birds and made sandcastles. Now we go camping whether it rains or shines. We love every minute of it”.

AS LIFE MOVES ON

Rijuta and Sadanand are now in their mid-seventies and live with many health challenges. The Covid pandemic has affected their care of Minu. Federal and State programs have been cut back and/or discontinued. Their need for caregivers is acute, as they struggle alone to care for their 43 year old daughter. Any referrals for qualified caregivers are appreciated and can be sent to ‘randspathre@gmail.com’.

With all the challenges they have faced and continue to, Rijuta and Sadanand have never lost their positive attitude and have a tremendous zest for life. The love of friends and family and good food keep them smiling. Rijuta’s friends call her ’Dear Abby’ since she has a solution to every psychological dilemma. They entertain and are entertained frequently: birthdays, baby showers, weddings, Indian festivals such as ‘Diwali’ and ‘Kojagiri Purnima’ celebrated with a boat ride on Lake Minnetonka, and Christmas parties.

“I represent a neglected minority population. I am a voice for those who don’t have a voice in this political environment. My life has been enriched by my daughter and family. I was able to spread my wings to see the world at different angles, which I would otherwise never have seen. My mind still thinks I am only 25”.

DISCUSSION : Our goal is to start a dialogue through the stories we present here. Please send us your thoughts and comments, either by posting a comment at the bottom of this blog, and/or sending an email to ’ashausastories@gmail.com’. We will collate all the feedback we receive and share back with you. (And let us know if you wish to remain anonymous).

A. What insights and life lessons have you gleaned from Rijuta’s story?

If you wish to submit your story for consideration, please send an outline with contact information to ’ashausastories@gmail.com’.

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AshaUSA’s mission is to provide culturally specific programs to the South Asian community to foster health and harmony in their lives. Please visit our website ‘ashausa.org’ for more information on our programs, volunteer opportunities and resources.