Lila Nichole Baker, my stepdaughter, was a rambunctious 12-year-old when she came into my life. She was brilliant, wicked at cards and had a cutting sense of humor. Lila always lived fiercely; she was many things to many people: daughter, sister, aunt, partner, friend, chiropractor, adventurer, cyr wheel artist and owner of a circus school in San Francisco. Her death at age 38 is felt by many.
We were reminded of Lila’s mantra as a young girl, “You’re not the boss of me!” as we supported her resolve to fight the cancer on her own terms. Lila held fiercely to the idea that she was too young to die. She moved back to Missoula to be closer to family where we were better able to love and support her as her illness progressed. As a Partners Hope Foundation board member this experience has made my PHF work more poignant, emphasizing the mistaken notion that dying was for the old and those who were ready.
Due to her fragile state, medical needs and limited options in Missoula, Lila died in a hospital. She was allowed few visitors due to COVID. She was surrounded by the incessant beeping and blinking of machines, not her favorite tunes, nor the color purple. There were no windows to open, no morning smells to breathe. We as a family were unable to create the type of environment that would have softened her last days. We did not have seamless access to the resources, supports and education a brick-and-mortar hospice facility could provide.
For me, Lila’s death has added an urgency and redoubles my commitment to build a safe harbor, a hospice center for Western Montana. The complex issues and challenges (financial, legal, and emotional) surrounding death are overwhelming. Navigating those issues without an integrated support system needlessly intensifies the pain and sorrow that accompany the death of a loved one.
Lila’s sister, Katy Baker-Casile, shares more of Lila and her father’s experiences with hospice care.
Written by Partners Hope Foundation board member Mary Morrison (Lila’s “Smooie”), with contributions from Lila’s father Nick Baker, her sister Katy Baker and her nephew Max Matana.