When Rob was about two, the Pat Metheny Group came out with a work called “Secret Story”. It’s been a bit hard to find, and at one point, I had to ask Rob’s dad if he would let me borrow it – but I had to hear that song – as bittersweet as it is when I listen, it seemed to be, at the time, kind of hopeful. At age two, your kid who was diagnosed with Cystic Fibrosis, plus had challenges at birth with a birth defect, is looking out with his innocent little kid eyes unknowing of what he has ahead of him in his life – in fact, no one knew anything about the future – total uncertainty. For him, the fact that he survived his first two months was everything short of a miracle…
Above the Treetops is a song that had a background choir of little Vietnamese kids – beautiful, haunting, and surreal – as if they were the future for their culture and the hope after that horrid thing called the Vietnam War that literally exposed the senseless underbelly of greed, power-grabbing, and an uncaring power-structure that had taken hold in the USA. Gut-wrenching – senseless – loss.
OK, so that doesn’t really tell why this song seemed to place itself squarely in my psyche – except maybe the experience of having a child born with a destiny that was 95% certain – as his physician said to me one day, “This is a fatal disease.” Yeah. Just like that. I was really angry that he did that, but when I thought about it, it was that he was telling the truth – insensitive maybe, but it was the truth. And at the end of the day, it was a “gut-wrenching senseless loss” – as it is to anyone who loses a child to a creepy disease or accident – it is.
Still, today, when I am brave, I listen to that song and think back about that time when I first heard it as a mom with a little kid whose fate she knew was fairly certain to end a certain way – yet, as a social worker at the clinic said, “don’t dwell on it so much that it takes away the rest of his personality – let him just be a kid to the extent that he can”… and we did – “above the treetops”…
