Published on: April 8, 2024

As each of them shared their experiences, we saw tears rolling down like pearls from their eyes. But we also saw, rising up from their hearts, a sense of togetherness.

Nincy Mariam Mondly (Psychologist, Pallium India) writes:

Working in palliative care means working closely with persons having life-limiting and/or life-threatening conditions. Through these interactions you realize that it is not persons, rather families who suffer from these conditions, where ‘suffering’ is not only due to the physical illness or disability but also because of several other reasons. This pain and suffering is more overwhelming, especially for parents when children are the bearers of such debilitating conditions. For these parents, every day becomes a battle, fighting a despair that others cannot even begin to comprehend. It is only natural that they often feel lonely and helpless.

On 24 March 2024, thirteen such families came to Pallium India (Trivandrum) to attend Rithu, the Parents’ Support Group (PSG) a new initiative under the pediatric palliative care programme in Pallium India. Steered by a team of doctors, nurses, social workers, psychologists and interns, the basic agenda of this PSG meeting was to facilitate stress-relieving sessions for the parents and provide the children a full dose of love and fun.

With these objectives, we welcomed the families and explained the importance of the PSG. Then, we took the parents to another room where they could freely express themselves. In our society, the expression of dark and depressing feelings is usually faced by a lot of “don’ts”, don’t you think? So letting the parents pour out their hearts was in itself therapeutic. As they did this, the room which initially seemed to be filled with strangers, started feeling like a family gathering where the members understood and cared for each other. (On the other hand, nowadays real family meetings end up like a gathering of strangers.)

Meanwhile, the children were engaged in various activities including drawing, playing drums and other percussion instruments, dancing and playing with balloons. The children were of widely different age groups and with varying needs. However, all children looked the same when they were happy and having fun.

The little boy with physical and cognitive impairment who wouldn’t smile at me earlier, gifted me his smile as I played with him. And another one who must have had stage fright on top of his recovering wounds from a severe burn, became willing to recite his poem standing next to me and holding my hands. Such instances are my biggest treasures because they remind me how the smallest acts of love and care can encourage and even empower people.

Listening without judging but with compassion can be one such powerful act. That’s what the parents in the support group did for each other. As each of them shared their experiences, we saw tears rolling down like pearls from their eyes. But we also saw, rising up from their hearts, a sense of togetherness.

As a psychologist, I very often find myself at a loss for words when talking to patients and caregivers in palliative care as there seems to be nothing reassuring or comforting I can honestly tell them. On such occasions I have questioned my own competency as a therapist. So it truly took me by surprise when one of the mothers came up to me during the PSG meeting and spoke of me as her lifesaver. Previously, in one of my counseling sessions with her I felt too emotional that the only thing I managed to do (that too not as a therapist but as a fellow human) was to say a word of prayer for her. Realizing that it mattered so much to her is such an important lesson for not just me, but you too.

What we mistake as small and insignificant actions can make a world of difference when done in love.

This is exactly why I believe that every small step we take towards bringing together support groups like Rithu would change our community for better.

It is also why I share these snippets of my experiences with you, hoping that it would stir your heart to do those never-so-small acts of love for those around you.