Since Dylan's been diagnosed, I have been struck by certain songs I hear on movies, TV and such. They stop me in my tracks, usually bringing tears to my face, because of lyrics that hit home about the road we're on with Dylan. There's some odd comfort in the fact that I am never seeking these out--that I'm just caught unaware in what was otherwise a moment of escape and enjoyment from a TV show or film. Odd, I know. But perhaps it just keeps me from being too numb.
Last night I was watching a few minutes of the film "Crazy Heart" while I was giving Dylan his Pulmicort nebulizer treatment. The movie is pretty good, and I've always loved the music. Neither the story line of the movie or the song itself has anything to do with our situation. But these four lines in the chorus of the film's main song, "The Weary Kind," made my face burn with tears.
This ain't no place for the weary kind
This ain't no place to lose your mind
This ain't no place to fall behind
Pick up your crazy heart and give it one more try
I feel like that when I've had two doctors' appointments and two PT/OT appointments in one week, had to discuss his eating, movement, breathing, and the disease progression with too many people in a short amount of time. I feel like this when I am juggling an hour-long conference call, Colin school pickup and feedings all in a two-hour period and I realize I haven't just hugged him or made him smile in that time. I feel like this when I look at pictures from just a few short months ago, where he's holding up his own head in the high chair or moving his arms better. I feel this way when I try unsuccessfully to get him to click a switch toy with his tiny fingers.
It's an anthem for not breaking down.
Songs like this one do as good or better a job of describing how I'm coping sometimes--a fact that the songwriters would probably feel very special about, and should--whether or not they'd ever imagined my interpretation. This and a couple of other songs I'll write about here are now part of the tapestry of our story.
You can hear this song here performed by one of its writers, Ryan Bingham, if you're so inclined.
