Silence is deafening. Freedom is imprisonment. These are the first words that today’s guest, Suma, wrote in her journal after her 18-year-old daughter, Shrinidhi died. Although Shrinidhi was never able to walk, talk or even use her hands, the family’s home was always bustling with noise and happiness. After Shrinidhi unexpectedly died in her sleep, the silence was indeed, deafening.

Since Shrinidhi’s diagnosis of Rett syndrome at the age of 2, Suma’s life revolved around helping her daughter live her best life. Suma was quite literally her daughter’s hands, feet, and voice. When Shrinidhi decided that she wanted to become a published author, it was Suma who sat at her side as her daughter used her eyes on her communication device to write each exact word that she wanted. It might take hours for her to write a single sentence, but the two of them would sit together until it was perfect. Shrinidhi was even able to complete and actually publish her book as well as complete her high school diploma. Her accomplishments became an inspiration for girls with Rett Syndrome around the world. (To buy Shrinidhi’s book, Extraordinary Wild Adventures on Amazon, click on link. 

Since Shrinidhi died several months ago, Suma has struggled to find purpose. There are not more stories to help write, no homework to make sure she completes, no therapies and no doctor’s appointments. In a way, Suma, is more ‘free’ than she has been for 18 years, but as Suma says, that freedom feels like ‘imprisonment’. Suma feels lost. Her world was already isolated before her daughter’s death, with her address book primarily consisting of doctors, nurses and therapists, but now, without Shrinidhi to care for, they are simply gone. The once small life now feels microscopic. That is her current struggle, to find purpose for her life after losing Shrinidhi. Right now, part of that purpose feels like reaching out to other moms whose medically fragile children have died so that perhaps they can find a bit of purpose together.