Monday, August 31, 2015

Silence and Fortune

The smoky yellow moon, the crickets, the cooler air, the end of August.  The gasp of relief at the quiet after finally pressing 'off' on the air conditioner.  My children sleeping in the rooms on either side of where I sit in the living room, my husband resting upstairs as he recovers from his concussion. With Isaac's machines there is always a hum, never silence.  Those sounds mean life, those machines help us ward off the inevitable, and one day- miracle aside- a machine will signal death.  I sleep at night to the sound of my son breathing.  Not to quiet, sweet snores, but his shallow inhalations, forced deeper to a set volume by his bi-pap. Sometimes I can't hear him cry over the sounds of his machines, but I know how fast his heart is beating with a glance at the pulse oximeter on the dresser.  I know by his heart rate if I am hearing things, if he is just whimpering in his dreams, or if he is uncomfortable and needs me to roll him over to sleep on his other side, his other ear, his other lung.  When his oxygen level is sitting lower than usual, I know if he needs more oxygen, if he needs me to suction his saliva from his throat, if he needs his head turned, his body turned, or if there is too much air leaking from the mask that he wears 24/7.  When I hear his feeding pump beep, I know if I need to add more formula to the bag or if there is a kink in the tube.  This is the night music, the sounds of our lives, this is what I know.  As I fall asleep, I thank God for the good fortune of having another day with our son, for the constant whir that means Isaac is alive.

When I was in college, studying in Costa Rica, I was assigned to complete my research in two small towns, El Silencio and La Fortuna.  Silence and Fortune.  One of my dad's co-workers had lent me a laptop so that I could type up my interviews (and yes kids, it was this century).  I was determined to turn my interviews and travel journal into a book or article, or short story, because Silence and Fortune was just an awesome title. I never wrote that book- I spent more time dancing the cumbia than taking notes, and I was so in love with El Silencio that I never went to La Fortuna.  All silence and love, no fortune.  I did not imagine that I would finally use my perfect title for a humble blog post (I don't think blogs even existed then). I did not know then that there was a disorder called Spinal Muscular Atrophy, that I was a carrier for SMA, that I would marry a man who was also a carrier, or that we would have a son who would inherit from us a fatal disorder.  I can still picture myself in my dark, airy bedroom in San Jose, seated at the small desk with a boxy laptop open in front of me, waiting for my ride to El Silencio.  I had no idea what to expect, I just knew I wanted to write about it. Twelve years have passed, and today I finally type those words for others to read.  Here, seated in my dark living room, windows open to the cool, night air, I won't try to imagine what life will be in another twelve years or twelve days.  Tonight, I welcome September.  I welcome what is to come.  The relative air-conditioner free silence. The relative I-have-my-family-for-tonight fortune.   And I want to write about it.


  1. Terrible wonderful as always. I'm glad you'll be able to write more easily here & look forward to sharing in your journey that tiny bit. Prayers continue for all of you.


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