Remembering Lila Star

Lila Star Smith

April 12, 1983 - March 31, 2009

It is 2020, and Lila Star has been gone for 11 years this week, and she would have been 37 on April 12th, her birthday. A lot has changed for those born with Cystic Fibrosis. It is now a manageable chronic illness - amazing! I always miss her as I prepare to light her annual anniversary candle, but this year I am especially grateful that she did not have to go through this crisis we on Earth are all living through now, the COVID-19 pandemic. As terrible as this is for everyone, for a family with a child with life-threatening illness, this type of thing is unthinkable. Lila would certinly have had to be quarantined at home, but then what if she had had to go to the hospital in Boston for treatment for her Cystic Fibrosis? And I think about the children with lung disease now, how their parents must be fighting to keep this virus away from them, and how those who succumb to it can't breathe, just like Lila. This year, then, is different. I will acknowledge her passing, but on her birthday, Easter this year, I will celebrate the gift of her life along with the life of the Christ, and her life as it continues in the Light where she lives now. Lila had healing ablilities, and I am sure she is helping out with them wherever she can - and watching over her parents, her brother and I as we walk through this awful time. God bless every single person on Earth right now and may this pass over you and those you love.

***

It's so hard to believe that my neice Lila Star has been gone for four years. Not a day goes by without being reminded of her strong spirit and grace in the face of lifelong, debilitating illness.

She touched many lives, and one of them was Dr. Nathaniel Needle, a friend of her parents for whose children Lila babysat when she was a teenager. He is an EdD in music who plays jazz piano at a small bar, Nick's Bar, in Worcester, MA on Friday nights. Lila's parents, my sister and brother-in-law, Nancy and Brad, stopped to hear him play one Friday night in March on a whim, enjoyed his music though they were the only ones there, and then went again the next Friday. Dr. Nat asked if they had plans for a memorial, and when they said no, he offered to do a musical tribute to Lila at Nick's. They thought her birthday would be a good day, April 12th she would have been 30 years old. So they planned it in a low-key sort of way, requesting certain songs, invitng a small group of intimate friends and family. Then Nat got back to them with the news that Nick's would be closed on Friday the 12th, even though Nick's had never been closed on a Friday night. But somehow Robert de Niro had chosen Nick's Bar in Worcester to film scenes for his next movie, starring Oscar-winning actress Jennifer Lawrence and many other well-known actors. We all laughed our heads off, probably including Lila - the stars had taken over Nick's Bar for her birthday! Mind you, no one has ever heard of Nick's, it's a neighborhood bar in a small, mostly working class city. Of course, if the movie takes off, everyone will have heard of it!

So the date was changed to the next Friday, and it mattered not at all. It was a wonderful, sweet tribute, beginning with some English and Scottish favorites which we sang along with, then "Unforgettable", "You Could be Swingin' on a Star", and others. A lovely rendition of "Over the Rainbow" brought most of us to tears. Dr. Nat is a jazz pianist, so they were all slowed down or upbeat, jazzy/bluesy versions of these familiar tunes. The last song, though, was Nat's special gift to Nancy and Brad, and to all of us there who loved Lila. They had requested "Twinkle, Twinkle, Little Star", but he rewrote the lyrics for Lila Star. It was just perfect - from the heart, and so, so touching. Here it is.

Twinkle Twinkle Lila

Twinkle, Twinkle, Lila Star