Beyond Survival: A Mother’s Mission to Rebuild Lives Shattered by Disability and Desertion

On March 25, 2010, at a hospital in Thiruvananthapuram, Kerala, a woman named Sheeja gave birth to her daughter, Sandra. The joy of the moment was quickly eclipsed by a diagnosis of microcephaly, a rare neurodevelopmental condition characterized by insufficient brain growth. While many infants do not survive the condition, Sandra did, ushering her mother into a sixteen-year cycle of intensive care, ventilators, and up to twenty seizures in a single day.

The strain of constant medical emergencies and Mounting bills eventually fractured Sheeja’s personal life. Her husband left, leaving her to navigate the complexities of permanent caregiving alone. Despite her academic background and teacher training, formal employment became impossible. She survived through tailoring and the support of her parents, Babu and Usha, while noticing a disturbing trend in the government hospital wards she frequented: she was not the only mother facing this isolation.

The Systematic Erasure of Caregiver Identity

In India, women perform nearly three times as much unpaid care work as men, a disparity that often forces mothers of children with disabilities out of the workforce. Sheeja observed that the birth of a disabled child frequently lead to the father's disappearance, leaving the mother to shoulder the burden in total solitude. It was in these hospital corridors that she met Vidya, a former mathematics teacher whose career ended after her son, Aadi, was diagnosed with cerebral palsy.

For these women, the loss of professional identity is absolute. Vidya noted that her social standing shifted from being an educator to being defined solely by her son's condition. The economic cost is compounded by this loss of independence, creating a cycle of poverty and mental health crises. Sheeja witnessed the extremes of this pressure firsthand: a couple she knew attempted a murder-suicide, and another mother she met in a corridor ended her life after handing her disabled child to Sheeja to hold.

Snehasandram: A Livelihood Collective for Mothers

In August 2021, Sheeja founded the Snehasandram Charitable Trust to turn collective grief into structural support. The organization holds a strict membership policy: it is open only to mothers raising children with disabilities. This exclusivity ensures a foundation of shared experience and unfiltered mutual understanding.

The trust moves beyond traditional charity by focusing on economic agency. Key initiatives include:

• Providing sewing machines and professional tailoring training.
• Facilitating agricultural projects such as poultry and goat rearing.
• Operating shared workspaces where mothers can earn an income while supporting one another.
• Funding essential medical supplies and wheelchairs through community fundraising, including newspaper collection drives.

For members like Shailey, a 35-year-old mother of a daughter with Down syndrome, the trust transitioned her from a life of waiting to one of active production. By generating their own income through stitching and small-scale trade, these women are reclaiming the identities they nearly lost to the relentless demands of clinical care.

Source: The Better India