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Tuesday, November 22, 2016

Grief and uncertainty

Riley in San Francisco
When Riley was alive, I always thought living with uncertainty would just become part of my wardrobe, like an old pair of jeans that I didn’t like but couldn’t seem to donate to the Goodwill. But it wasn’t like that at all. Riley’s medical problems were like razor blades under my skin. Anytime anything grazed against me, I got cut from the inside. I was always bleeding and the potential for pain was everywhere and constant.

When someone talked about their baby learning to roll over or crawl, in my mind, it was about how my son couldn’t do those things because mobility took too much energy for a baby with half a heart. When someone talked about their child going to preschool, I’d imagine germs fused onto toys layered with the saliva from a thousand toddler mouths. Then I’d stay home and away from others preschool-attending toddlers fearful for my son’s compromised immune system. When parents talked excitedly about the freedom that kindergarten would bring, Riley was recovering from his fourth and fifth surgeries; I was worried that he would never make it to that childhood rite of passage.

When it was time for flu shots, sobs from my boy were a reminder of the countless injections and blood draws that he endured as a routine part of his life. When friends talked of travel, a perimeter would be drawn on the map in my mind around the places we could travel without oxygen; all the others would be labeled forbidden and shaded gray.

Every baby and toddler I saw, I imagined, was perfect in every way and would be given the precious gift of growing up. Of annoying their brothers and sisters, frustrating their parents, and getting in trouble for staying out past curfew. I was jealous of the carefree ways in which their parents pushed them in strollers or held their hands as they walked up and down the grocery store aisles. Every middle schooler I saw roll past on a bike or skateboard may as well have been rolling to a mystical land where children’s bodies grew and were strong and had energy to transport themselves from place to place. Every single thing was crushing and exhausting.

And I know now that Grief is Uncertainty’s meaner, more tortuous cousin. While they seem to travel along a parallel paths, Grief’s razor sharp edges cut deeper, more often, and leaving purple splotches under my skin.

Only instead of being afraid of everything and fearful of what might or might not happen, grief cuts from the places we have been, the books we have read, and in beautifully mundane moments caught on camera, immortalizing the expressions of the face of baby who grows into the toddler who becomes the kindergarten and Little League-playing middle schooler--imagines that line the walls of my house. Each a reminder that he was alive, that he existed, even though I cannot go to a place where his face can rest in my hands and my cheek can sweep across his blond locks. 

And every single moment for the rest of my life, I will be aware of his absence. And I will wonder about the quieting ripple from his life -- all of the people who will never know him, never see his smile, never listen to his jokes, never marvel at his old soul who loved architecture and drawing comics and reading palindromes or The Far Side aloud to anyone who would listen.

Wednesday, November 16, 2016

Grief and rewinding

Riley's Matchbox cars
I’ve been to the hospital where Riley died exactly three times since then -- which is exactly three times too many. The first time was to visit another heart mom that I met a few days after Riley’s failed final surgery. Her son had also undergone heart surgery in October 2014. He needed to return for subsequent operation a few months later. I ignored the bile in my throat as the double doors slid open because I wanted to be a supportive friend. While I was there, I gave that little boy one of Riley’s treasured Matchbox cars. I remember how much Riley loved them when he was a toddler in the hospital. I had hoped it would offer that other little boy a slight distraction from the IVs and non-stop poking and prodding that goes with being in a cardiac ICU. The second time was to bring my kids to visit the Child Life specialist who had been a gentle coach to them while Riley was dying. They had asked to see her many times, so I finally found the mental ability to look up her contact information, and, well, contact her. While she lulled the kids with her soft and compassionate voice (and cool stash of art supplies), I wilted in the corner of the cafeteria and pretended that I was in some office cafeteria instead of that hospital cafeteria -- it didn’t work. 

This picture was part of the mental vortex
The third time was for my stepdaughter’s emergency appendectomy. And returning to that place with its lighted hallways and antiseptic smells for one of my children created a mental vortex of time and place and memory. The confusion was so beyond my capabilities. I wrote about its connection to my grief in the latest issue of Six Hens. If you've ever had the desire to rewind time, this piece is for you.