Mike and I attended the Toronto International Film Festival last month to honor Aditi and Niren Chaudhary, the real-life couple the movie The Sky is Pink is based on. We knew what they had been through and how they were working to honor their daughter’s legacy, and we wanted to support them.
The Chaudharys’ first daughter was born in India with a genetic disorder so rare that medical professionals didn’t know how to diagnose it. This little girl died at seven months. Later, it was determined that she’d had Severe Compromised Immunity Disorder, or SCID.

Probably figuring the parenthood odds could not possibly be so stacked against them, years later Aditi and Niren gave birth to a second child, Aisha. When Aisha showed symptoms of SCID and was given just a one-year window to live, her parents wasted no time buying her time. At six months of age, she underwent a bone marrow transplant. And then at age thirteen, pulmonary fibrosis brought on by the chemo Aisha needed for that transplant sounded yet another dire health alarm.

Resilient Happiness, Incredible Strength

In the last years of her life, Aisha Chaudhary spoke on happiness. She gave a TEDxPune Talk and in her short book, My Little Epiphanies, she wrote:

“When I feel the monotony of my day turn into sheer pain, the only thing I can really do is stop and appreciate whatever I may be doing… We should just stop for a second, because one day we may not be able to start again.”

I sometimes wondered after Brian’s death if he had been aware, on a completely subconscious level, that his time was more limited than expected. He never wasted one minute of one day. He bought an airplane and became a pilot to save time and be everywhere for everyone. Our wedding song—and his Celebration of Life song—was “We Live on Borrowed Time.”

Aisha was a young woman who valued each day, each breath, and each loving relationship she was gifted. Her mother, Aditi, speaking at an INK Talk years after her passing, said that she and her husband knew with the pulmonary fibrosis diagnosis that they would “not have the years” most parents expect to have with their children.

It was during this difficult period that Aditi and Niren decided to give Aisha all the happiness they could in the time that remained. Aditi says, “It was our fortune [as parents] that she ran with it.”

Aisha didn’t just run with happiness: she sprinted. In her TedxPune talk, she presented a photo in which she appears practically tied to a hospital bed by dozens of wires. This photo captured her smiling before spending the night for a sleep study. She found humor, she said, in the nurse in attendance, because he fell asleep at her bedside and snored, which of course, prevented her from sleeping!

This young woman who was losing her ability to turn herself over in bed without pain chose to seek sources of happiness.

Aisha’s buoyant attitude didn’t always come easily. “Of course,” she told audiences, “there are days where I feel extremely down, where I feel like… giving up. But the realization that things could always be much much worse always pushes me to get back up on my feet and put a smile on my face.”
Aisha named family as her most precious source of happiness.


Building Legacies Makes a Difference

Listening to her parents speak of their gratitude for the film in helping to spread their daughter’s message, I reflected on what we do to keep those we have lost alive in spirit, through action.

In the midst of grief and loss, people choose to make the world a better place. Some mourners start a global foundation to eradicate a disease, others allow a movie to be made of their most intimate tragedies and triumphs, and others of us hold fun runs or sit around a fire pit and burn stuff.

In every way we honor our dead, we do what Aisha urged us to do: We “create many happy memories so that we can try to wipe out the sad ones.”

Yes, we can try. We can tip the sad/happy balance willfully, ceremonially, and eventually.

In all acts of legacy, we keep vital memories alive and we grow new present-day memories that carry on and outlive us.