Grief and the first Christmas

Outside there are lights glowing. They are hung around windows and along fences. They are inside too. Twinkling greens and reds and whites probably hug a tree in your living room. At the same time, there is darkness.

You can’t see it from your comfy couch, from the seat next to the fireplace near the twinkling lights. This darkness is inside my house. It festers inside of me. The flow of circulation, the beat that pushes blood, the exhale that forces the inhale—it is all gone and replaced with darkness so deep that I’m still falling, yet to hit the jagged floor. I give up. I give up already. You have won, Darkness, and I surrender. Anything you want, I give. Take it all. Just give me my son back. He died in October, and I have suffered enough. How do I make my 11-year-old son's death undo itself? How do I make his failed heart operation a success?

And then there were three...

You’ve stolen from a mother’s arms. Stolen love from a younger brother’s heart. Stolen friendship from a boy who catches the ball, who always pulls his friend’s backpack. Stolen a companion from the siblings whose tribe is broken and uneven without their brother, the boy with the faulty heart.

I avoided Halloween as I prepared for my son’s memorial; I avoided Thanksgiving by ignoring it, any nearby merriment drowned out by the reliable ocean smacking the beach near our campervan again and again and again. But not Christmas. It came into my house. The tree’s branches punctured my lungs and made them weep. Darkness drips from those wounds.

This is Christmas, friends. So this is Christmas.

Grief and ranting

Glossy magazines glorify tragedy. Everything is summed up in 800 words and the tragedy becomes a feel-good piece. It’s spun so that a positive message is felt by the person experiencing the loss as well as person reading about the loss. It's fake. A handful of well-meaning people, who have probably read those glossy articles or seen glossy TV, have told me to snap out of it, get out of bed, out of the house, to be grateful for what I had/have, and face the world. That Riley’s goodness supersedes his death. Society wants me "to get over it," to have "closure," to be grateful that I have other kids. Not every story has a moral. And no matter how we spin it, Riley was better alive than he is dead.*

C only knew life as Riley's younger brother. He knew who he was because Riley reflected who he was back at him. For years, his sentences ended with: “Right Riley?” And I only know parenthood as Riley's mom, as the guardian of the boy with the crap heart. And now that he's died, I'm lost and I feel like a cliché. I'm broken, fragile, and shattered. I have lost any sense of self-esteem, I cower away from people and situations, am forgetful, stutter at times, am easily startled, and am entirely exhausted and drained. I start sentences with the phrase, “My therapist says…” For the rest of my life, I will try to figure out how to live without him, and I'm being gentle on myself and helping around the house and with the kids when I feel up to it. I suppose doing anything beyond the comfort of bed is progress from where I was a handful of weeks ago.

It sounds bitchy and horrible, but my other children are not Riley, and I don't feel grateful for much of anything right now (that doesn't mean I don't have things to be grateful for...my list is very long, but it's hard to have perspective on that even though I know there is much to be grateful for). I always told Riley, "Don't ever let your heart be an excuse for not trying your best." And he has recently told me, "Don't ever let my death be an excuse to lie around in bed all day." I hear him. I hear all of you. I'll eventually get there.

Also, Riley is with me in spirit. He is part of my essence, just as I was part of his. He is everywhere. And yet he is nowhere. And having him in spirit is not the same as having his skin to caress, his hand pressed into mine, his hair to bury my face into. They are different. Your attempts to convince me otherwise are your attempts to make sense of something that doesn’t make sense and will never make sense, no matter how many times you throw God’s will into the mix. And if my brand of mourning happens from the comfort of my bed with my laptop warming my knees, I'm okay with that.

My son last Christmas, not hiding his scars

So yes, I have four children and I don’t have four children. I can hug three of them. I can tuck three of them into bed. I can hear three children’s voices. One of them I can hug only in my mind, I can listen to only in my thoughts, and his empty bed will never we warmed by his beautiful and imperfect body. I assure you, gentle reader, that they are not interchangeable.

For 11 1/2 years, I rehearsed Riley's death. I imagined it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. But here I am instead. I will lie in bed and write and cry. I will take C to the dentist and the kids to school. I will be mad and scream into the carpet until I burst hundreds of capillaries around my eyes. I will also laugh and feel lightened when Riley sends letters into my head as he did the other day. It's so fucked up and unbelievable and unbelievably true. Yes, my husband and my other people need me. My therapist says that life is a marathon and not a sprint. And I get to fumble around in grief on my own timeline, even if it makes you uncomfortable, even if you think I'm doing it wrong.

My spectrum of feelings on any given day—or hour, or minute, for that matter—is broad, nonsensical and nonlinear. I will take the time to grieve in my own way, feeling all of my feelings that crush and motivate, that paralyze and swell, that punish and rage, that open the lines to communicate and clamp them down again, and I will not apologize for any of it. Rant complete...

*To be clear, Riley alive and suffering is not better than him being dead and free from medical horrors. When I say, "Riley was better alive," I’m talking about Riley living, away from the hospital, going to school, spending time with friends and family.

Grief and other people

Before Riley went into the hospital in October, he had to have his teeth checked by a dentist. This extra dental appointment happened before each of his surgeries. When he was in the soft chair, reclined for optimal viewing and the dentist asked how he was doing, Riley gave with a matter-of-fact reply: “I’m having heart surgery this week.” The dentist and the technician exchanged glances before cobbling together a response. “Heart surgery? Oh, wow.” (To be fair, what do you say to an 11 year old who just told you that he’s going to have heart surgery in a couple of days?). That was followed by, “Well, let’s take a look…”

Since Riley and his brother have always been together--at every dentist appointment and pretty much everywhere else since C was born--the dentist asked about C. “Oh, he’s at school and probably due for a cleaning as well,” I said, “but we’ll take care of that on the other side of the hospital. Hopefully November or December.”

I used to have four children

Anyone who knows Riley knows that he died after complications from heart surgery. That is one of the reasons that I’ve avoided going anywhere. I’m afraid of seeing people who know Riley, who know me, who know my family. I’m afraid of seeing my sorrow reflected back at me. I’m afraid of seeing pity or relief that it was my kid and not theirs. When they ask, “How are you doing?” Do I say fine? Do I say terrible? I’m pretty sure no one actually wants to know I’ve lost of bunch of weight. No one wants to know that I’m still taking the anti-anxiety medicine and the sleeping medicine. No one wants to know that as soon as I fall onto the couch or heave myself into bed, my leg shakes uncontrollably. No one wants to hear how dividing Riley’s death has been. Before Riley died, I had four children. Now I have one dead child and one living child and my husband has two living children. No one wants to hear that spending time with the other children does not make me grateful that I have the other children. It simply illuminates that there are three instead of four. I suspect they do want to hear if I’m thinking about having another baby.

In the handful of times that I’ve gone to the store with my husband and the clerks have asked How are you?, I know they don’t really want to know. What I’ve wanted to say is this: “Not very well actually, my son just died.” I say hello instead. Hello seems less rude, although I'm not sure why saying that my son has died seems rude. When they say Have a nice day or Happy Holidays, I just lower my eyes. Social niceties are too loaded. For the children’s band concert at school, I wore a cap low on my face and avoided eye contact with hundreds of families. I peaked glances at the students, hoping to see Riley’s friends. I’ve missed them. I sobbed while they played and made the decision that I want to go the high school graduation ceremony for Riley’s class six years from now.

But C’s dentist appointment was different. The dentist falls into a small, special list of people who know Riley, but who do not know that he has died. This small list of people who will ask about him and I will have to tell them. I will have to speak this horrible truth. I even talked about it with C on the way to the appointment. “They will probably ask about Riley,” I said. “What would you like to happen when they ask?” I wanted C to have a say without leading him to want one thing or another. “What do you mean?” he asked. “Well, do you want to answer or would you like me to answer when they ask about Riley?” He thought for a minute and decided: “I want you to answer.”

The receptionist said hello when we entered the office. We sat down and I pulled C onto my lap. I felt less exposed with his weight pressing into my legs. I grabbed a magazine featuring several different kinds of pie and asked him to name each kind pictured. As he guessed at apple and pumpkin and chocolate, she leaned over the desk and casually planted the question I’ve dreaded. My eyes swung over to her face and my lips opened. “Riley died,” I said, holding her gaze for a moment. “Oh,” she said. I looked back at the magazine cover and squeezed C. A minute later, she leaned over the desk again. “How was your Thanksgiving?” And just like that Riley’s death had come and gone for her. For me, it was real in a new way.

Grief and forgetting

Bedroom on wheels

On Thanksgiving I was in a tiny camper van with my husband and our dog. The interior was blue and white with a little kitchen and a mini shower stall. There was nothing to distinguish that specific Thursday from any other day that week. 

Since my son died six weeks ago, I’ve spent most of my time horizontal in the safety of my blankets cushioned by piles of wet tissues. In order to get me out bed and out of the house, my husband rented what he called our “mobile bedroom.” The safety of bed could travel with us. There would be sunsets out our tiny bedroom windows near the beach, hikes in the hills or in the redwood forests—only if we felt up to it—and many rented movies watched while reclining on pillows. I even think we skipped Thanksgiving dinner because we’d eaten a late lunch. It didn’t matter. The point was that I was out of the house, out of our bedroom, with the safely of a bed and my familiar duvet.

We picked up our bedroom on wheels in Monterey. We camped that first night in a campground in the hills, then headed south to the trees of Big Sur, before spending the next three days in Morro Bay. On some nights the beach was just steps away from our parking spot. We strolled along the sand, watched the sky fade from blue to being streaked with orange and pink. We warmed up leftovers from the parade of dinners that our community delivered to our door in the previous weeks. We drank Moscow Mules and alternated eating chocolate-covered things and piles of radishes. Come to think of it, I'm the only one who ate radishes. “They’re like spicy apples without seeds,” I’d declared. My husband stuck with chocolaty things.

Each day, a black wooden picture frame displayed a different wedding photo, us smiling, any underlying cares invisible. It was my husband’s romantic gesture. I carefully examined each photo and marveled at the joy on my face.

I don’t know that woman anymore.

Unimaginable joy before death

Still, despite feeling so consumed by grief and disconnected from that person, there were hours when I didn’t cry. My swollen eyelids shrank to normal size. The pile of tissues subsided. And I joked about this and that—mainly the comically small shower, how our mini camper was basically a sailboat on wheels (my husband loves sailing), and how the only place the dog’s bed would fit was in front of the slim door to the bathroom, forcing her to maneuver her 70-pound frame out of the way countless times each evening as we went into and out of the bathroom.

On our last evening, when we finished our last movie from iTunes and I quit the application for the first time that week, I was confronted with the desktop picture on my Mac—a picture of my two boys. Riley was five; C was two. They wore matching sweaters and each held Christmas tree ornaments. I hadn’t seen a picture of my boys all week. My house is filled with photos; and since Riley died we have piles of photos out, new framed pictures hanging. He is everywhere at home and was nowhere in that camper. Until that moment.

Forgetting him and my intense sorrow for those days felt like betrayal. How did I allow myself to laugh? How did I allow myself to stop crying? Stop howling? Stop doubling over with grief to the point where I felt like throwing up? Stop screaming to the point where I burst hundreds of capillaries on the skin around my eyes, wondering how the neighbors had not called the police? I like all of those miserable things. Truly and honestly. They feel good, real, satisfying, safe. I swim in those feelings and dig my toes in the way one might with warm sand. That intensity and pain connects me to my dead son. As debilitating as it is, I hope it never ends. It is palpable and almost visible like our love.

The remaining hours in that camper were tainted by my betrayal. And I needed to go home again, to my real bed in my real bedroom, to roll around in my sorrow, to feel connected to him again. I'm terrified of forgetting anything, any moment. I can't imagine ever living normally because I imagine that feels like leaving him behind.