Tuesday, May 21, 2013

The Secret's in the Ink

It creeps up on me like the boogey man or an octopus.

We have great days of playing at the park, dinner around the table where we talk of playground politics and discuss Ben and Jerry's greatest ice cream flavor. After homework and a game of animal rummy, we catch an hour of a Jack Black movie during respiratory treatment, guffaw at his cartoon facial expressions and settle in with a library book about octopuses, cuttlefish and squids, learning how cephalopods exist without skeletons; they are the shapeshifters of the sea, who cannot only change color but camouflage their bodies by the pattern of their surroundings.

The blue-ringed octopus transforms it's body to look exactly like the anemones beneath him, same color, same shape, even the same texture. How does he know how to do that, in an instant? How does he paint his pigment in those Van Gogh patterns, without a brush, without a cerebral cortex? How does he inherently know what will save him? 

Instead of fighting, he just fits in, meshes, like "hey dude, just hanging." In essence the octopus pretends the danger isn't actually there... And it works.

This has been a tough year. Addie's mickey/g-tube fell out and had to be replaced surgically, her stomach woes and blocked colon caused months of physical pain and missed school, activities and life. This cold that won't go away created a wet cough that sounds like heavy cement in her lungs. And now the antibiotics that fight the cement are causing diarrhea and night time tummy aches. Sometimes Cystic Fibrosis feels never-ending. Like we are fighting an invisible current, a secret enemy who is hiding in plain site, colored and textured like our daily surroundings, but always there. At the end of the day, even when it's lovely, the tentacles are showing.

This is a first, but tonight I was jealous of an octopus and his graceful ability to survive the depths of the sea without a weapon, except ink, writing his story in the ocean, saying "I WAS HERE."

Even if I was hidden when the dangers lurked above, I fought in my own way. I changed and worked to fit in to this environment that was always against me, that tried it's best to win. Because patients with CF struggle to breathe, as if air were the enemy, as if they were underwater and born without gills.  

Without the metaphors, I'm just sad tonight. I wish my kid could fall asleep without any pain or discomfort. I wish a cold was not something to be feared like a shark or a stingray. I wish I could kiss her goodnight and not think, "She's almost eight, how long do we have?"

I wish I could sink into the bottom of the sea and camouflage myself into pretending we are safe, that there is nothing wrong, that we are just the anemones beneath us. There are no enemies. And whatever haunts us from above will keep on swimming. Just keep on swimming and leave us alone. Safe and shapeless, but happy, under the waves and the sun that seems to always find a way to reach us, even in the darkest of places.