Riley. Photo by Carter.

Alone Time

Commuting is the hardest. I hadn’t expected that. In the car, alone with my thoughts. He’s always there, of course, but looking me in the eye when I have nothing to deter my gaze. I was worried about returning to the office, seeing everyone, talking about him. But I wasn’t prepared to see his photo on my desk. I’d forgotten about that. It was last year’s school picture. I’ve looked at hundreds of photos since he died, but this is one I hadn’t seen. I suppose somebody from the school will eventually call to say they have this year’s photos.


His eleven and a half years were peppered with horrifying moments. Six surgeries, long hospital stays. I remember dark hours in 2006, I was practically dragged home to rest after a marathon stay. I looked at him, cannulas in his neck, connected to the ECMO machine. I thought I’d never see him again. That he’d be gone before I could return. But he lived. And he thrived. If someone had told that man he’d have eight more years with that boy, eight happy, normal years, he would have kissed them and wept for joy. But this man, in 2014, is pissed. He wants to punch that person in the fucking face.


There is guilt. We did this to him. I drove him to the hospital, he walked in the door. Normal, healthy, hopeful. His two stuffed penguins in tow. Can I return to that moment, grab him, turn around and run back to the car? Drive away. Just drive anywhere. Part of my brain knows he wasn’t truly healthy. That the arteriovenous malformations developing in his lungs were slowly killing him. That he’d already survived seven years with 80% oxygen saturation, blue blood swirling with red. That Something Needed To Be Done. But how slowly? One more year? Two more years? Seven? What kind of life, though. You say to me, “You can’t dwell, you can’t change the past, you did everything you could to give him every chance at a normal life, anyone would have done the same.” But I’m not anyone, I’m me.


As terrifying as the earlier surgeries were, nothing prepared us for this. Walking in full of hope and optimism, then watching your child die. Bleeding. So much blood. They gave him forty units one day. Forty. Liters and liters of blood. The blood bank had to put out an urgent call for donors. He used all their blood. And his legs, dying. “Dry gangrene.” And now his fingers? How do you measure quality of life? There’s no checklist: for each leg, subtract 10 points, for each finger subtract 2. Finger tips? 1 point per. ECMO. But ECMO for an eleven year old fills a room, cannulas everywhere. The dialysis machine. They daisy-chain dialysis to the ECMO circuit. Liver dying. In the end, though, his heart made the decision for us. It was always about the heart anyway.

There’s a dial on the ECMO. You can turn it up – the machine does all the work – or down. Does anybody accidentally bump the dial? We stood and watched the monitor while they slowly attempted to wean him off. 3 liters. 2 liters. 1–1/2 liters. 1 liter. When they hit 1 liter, we knew. His blood pressure dipped straight away. His heart just wasn’t going to work. It had had enough. We were with him the entire time. Mom, Dad, Grampy, Stepmom, Stepdad. The attending promised me he’d use every dose of morphine in the hospital if that’s what it took to keep him asleep and comfortable. We stroked his hair. Talked to him. Told him we loved him. Hundreds of times.


When he was gone, the nurses and the doctors all started to cry. They hugged us. Hugged each other. I thought there’d be more paperwork. But they said to go home. Organ donation? His corneas. Those beautiful blue eyes. Someone else actually needed something from his broken body. The blue eyes came from me.


He never saw the Giants win the NLCS. He never saw the World Series. Or Panda’s catch. He would have imitated that catch, falling on his ass, just as he imitated the Scutaro Rain Dance. He won’t see the third Hobbit. He won’t get to watch the new Star Wars movies. He won’t get to read the stack of comic books my friend lovingly selected for him. His art teacher won’t get to visit him in the hospital for lessons as he recovers. There won’t be a 2015 Little League photo on our mantle. Or a 2016. How do we go back to our favorite restaurants? What do we say when they ask Carter, “where’s your big brother?”


My dreams for him were always cautiously near-term. Since he was born, I tried but failed to imagine him in college. Or getting married. Or having children. “If he lives to be a preteen, it will be a feat,” said his cardiologist months after he was born. That was the first time we learned the severity of his single ventricle. The prognosis had been “guarded” they told us. His heart defect was discovered at birth, and since those months had been one big triage, they needed us to keep our wits. Only after he was recovering from that first surgery did they drop the bomb. Cruelly, my dream horizon had shifted. A few months ago when we learned he was a candidate for a two-ventricle repair, we began to imagine a normal life for him. Normal oxygen saturation. Longer life expectancy. This thing we never thought he’d get. I allowed myself to imagine him outliving me. For the first time since he was born. And now…


He almost died on my Dad’s birthday. His Grampy’s birthday. Which was also his Great-Grandad’s birthday. The first son, the first grandchild, all four of us. He didn’t die that day, he lived five more. I don’t know why that concerned me so much. It was a shitty birthday anyway. Collectively Riley and I spent four birthdays in the hospital, and his Grampy one. What will we do on Riley’s birthday?


Our friends were there. You learn how much it matters to have someone just be there. Sitting with you. I’ve hugged more people in the past month than I’ve hugged in a lifetime. It doesn’t take away the hurt, if anything the hurt multiplies as it enters each person, exponential penetrating pain. I don’t think I’m going to stop hugging. (I almost said “when this is over,” but this is never over.)


His friends and classmates started an Instagram account. How come he never asked for an Instagam account? There’s a hashtag, #TeamRiley. Geocaching tokens. They had green wristbands made. Green was his favorite color. He wrote a poem about green. I’ll see him in their eyes. Watch them grow taller. Start dating. Driving! Going to college. He’ll always be eleven and a half.


The funeral home offers an 80% discount if the deceased is under the age of twelve, she told us as she turned to her calculator. Aren’t we blessed!


We didn’t want a “service.” I tried to imagine taking Riley to someone’s funeral. How frightening it would be. How much he’d tug at my arm asking when we can leave. Riley was a kid, and it should be for the kids. So we had a Celebration of Riley’s Life. It was beautiful. Hundreds of people came out. All of our neighbors walked there together. I wanted everyone to feel like he belonged to them as much as he belonged to me. I was always willing to share him. There was so much to go around.


Help us remember Riley by donating blood and supporting Camp Taylor, a free summer camp for children with heart disease.

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