From the recording Dukkha's Nemesis
March 16, 1988, Ali was born, one day before my (30th) birthday. Great gift! Even when my doctor stopped into my hospital room to tell me the cherubic babe had an abdominal blockage, and she might have Cystic Fibrosis. Turned out she did. Researching CF turned up stuff like "an inherited genetic disease affecting 70,000 people", expect multiple lung infections, illness, and frequent hospitalizations, and a really scary fact: "median age of survival is 18 years". It's now increased to nearly 40, and Ali has had few hospitalizations and few serious lung issues in her 27 years as of this writing. The facts remain though: CF causes slow lung function decline (slow, if you're lucky, like Ali) or rapid lung decline (rapid, if you're unlucky, like friends' sons and daughters who lost battles to CF before graduating middle or high school). CF also continues to bring about lots of health insurance nonsense (better with ObamaCare but still tons of insurance company shenanigans pushing needed CF drugs out of affordable reach for some folks with Cystic Fibrosis), tons of days of feeling awful and like you can't breathe, way too many hospitalizations with serious respiratory declines, way too often the need for double lung transplants to regain health, and, still, early demise at a mean age of 40. SIXTY FIVE ROSES is Dukkha's song about the suffering that comes with CF but also the gift of life with or without CF, about being hospitalized with CF, about being the kid with CF or the Mom wanting her home from the hospital, and about the fact that CF may take a lot of energy to battle but doesn't define the individual who carries this one frustratingly tiny bit of unusual DNA. The song title, SIXTY FIVE ROSES, is borrowed from "65 Roses" as adopted by the Cystic Fibrosis Foundation - it was a little kid with CF's way of trying to repeat the name of his genetic condition. It's a pretty name for a crappy disease! If you'd like to learn more about CF, start with this video Ali did in recent years (she says a baddie at the end, so don't let your little babes watch it, k?).
Info about Cystic Fibrosis ("65 Roses") andour efforts to CURE it!:http://fightcf.cff.org/goto/AliKatzSixty-five RosesIn my little girl's roomIn the middle of them all, see herA beautiful bloomA childWith a smileThat could light upYour darkest nightA beautiful childWith sixty-five rosesI want her home tonightAlways helping everybody'Cause that little girl knowsWhat it's like to be up and downThat's the way her young life goesAlways giving everybodyA beautiful smileSo it's hard to remember'Cause she's kind beyond her yearsShe's just a child, with...Sixty-five RosesIn that little girl's roomIn the middle, see her thereA beautiful bloomA child with a smileThat could light upYour darkest lonely nightA beautiful childWith sixty-five rosesLord, bring her home tonightTonightShe's been away from homeFor too many daysLord knows, this time,She says, "they're taking good care of me,Everybody's been so kind, Mama, so kind; And tell everybody thank youFor thinking 'bout meAll your cards and your flowersHave filled my room with loveAnd let my spirit fly freeSo freeYes, she's looking out the windowAt a pallet of bright autumn leavesShe says, "Lord, it's a beautiful world,And it's wonderful to breathe;Let me breathe, Lord, please;And thank you - I want to thank you, Lord,
For the clouds in the skyAnd the sunshine I see, And the people I loveAnd the heaven scent of rosesEverywhere all 'round meAll around me (from those)..Sixty-five RosesEverywhere in that roomIn the middle of them all, see her thereA beautiful bloomA child with a smile That could light up Your darkest lonely nightShe's a beautiful child, yes,With sixty-five rosesI know she's coming home tonight'Cause she's a beautiful childWith sixty-five rosesThank God in heaven aboveFor this wondrousThis wondrousLife(c) 2008 Patty Morris