Grief and judgments

Riley memorial at Pulgas Ridge

A few days before heading to Hawaii with three girlfriends to grieve and reminisce about when our children were babies, I went to the nail salon to have a manicure and a pedicure. I’m still not sure why I went to the nail salon in my town given that I’m currently afraid of the general, not-grieving population, but that is where I went—probably out of habit. Cautiously inching along the shop’s long hallway, I surveyed the other patrons looking for familiar faces from under the brim of my cap. There were none and I felt slight relief that I could be anonymous as I indulged in something so trivial as trimmed cuticles and brown nail polish.

Not long into my pedicure, a woman was seated to my right. Her young daughter was seated to my left. They chatted about their day and the brother at school and I decided to use that moment as an opportunity to say out loud that my son had died. I could practice saying it to this stranger. I could ask her about her kids and we’d talk about our children, so normal.

“How old is your son?” I asked during a lull in their conversation, wondering if he knew Riley or about him. “And does he go to Brittan Acres?” She said he was about the same age as C, but goes to a different school. Like the moment before a falling glass meets the ground, I knew our conversation was about to burst into tiny shards of shattered thoughts. I set it up and waited for the impact, the mess of my reality. “Do you have other children?” she asked. “I used to have a 6th grader,” I muttered. That was all I managed. Once I said it out loud, I didn’t know how to say anything else. Honestly, I wasn’t even sure she heard me because I said it in what felt like a whisper, forcing those broken words from my lips. And the words felt so jumbled as they fell, that I wasn’t sure—even if they were audible—that they weren’t nonsensical.

I wanted to try speaking my truth in a way that made it sound normal, given that it is anything but normal. She was my guinea pig. She was silent after I spoke, we both were. Our conversation was broken, jagged, a messy beast to slowly back away from. The fact that was I was even getting my nails done felt so wildly inappropriate. How could I possibly be getting my nails done given that my son had died? How could I possibly do something so frivolous given that something so profound had happened? I felt ashamed.

A few minutes into the silence, the nail technician moved me to a different seat so that my toes could dry under the tiny foot fans. Once they were completely dry, I thanked her for taking care of my feet. Then I slumped out of the shop avoiding eye contact with the mom who I envisioned was on the verge of shouting at me: “Your son just died and you’re getting your nails done?!”

That awkward encounter played in my head over and over. A couple of weeks later I got an email from that stranger. She said in her message that she had recounted our interaction to a friend and that her friend replied: “You met Riley’s mom,” and pointed her to this blog. She told me she wished she’d given me a hug that day. Her message included a virtual hug. “No big words,” she wrote, “just know a total stranger has your heart and mind in her prayers.” Her note was filled with compassion. And she didn’t judge me. Quite the contrary. She wrote: “AND I thought how WONDERFUL it is that you are letting other people take care of YOU. Whatever it is I would imagine each part of YOU needs nourishment—your heart, your mind, your feet, your soul!!!”

I want to believe that the chance encounter that led to that email from a stranger was the universe’s way of saying it’s okay to take care of myself. It’s okay to leave the house. It’s okay to have my nails done, go for a hike, drink a latte in a coffee shop. Maybe no one is judging me even though it feels that way. I suspect my biggest obstacle, the biggest critic, the most judgmental person approving and disapproving of how I spend my time as I try to learn how to move among humans who haven’t lost children—sadly, is me.

Grief and paint

Today's project: Improved garage door

There is no coincidence that Congenital Heart Defect Awareness Day coincides with Valentine’s Day. It's the day of the year when heart defects make national news and stories about children battling against nature with the help of medical technology come into the spotlight. But in my family—and probably in many families who have a child with a CHD—there really isn’t much to differentiate CDH Awareness Day from the other 364 days a year because there is no such thing as forgetting about it, even for a single day. It’s always there, beating in the background of our lives. With every medicine dose. With every visible (and invisible) scar. With every extra doctor appointment, hospitalization, and blood test.  

Four years ago, I tried to reclaim Valentine’s Day as the one day of the year that I would forget about congenital heart defects and just be in love the way that Hallmark intended. In love with my children, in love with my boyfriend (now husband). I thought I deserved that one day off, even if Riley didn’t get to take a day off from his medicine or have a day where running—or even walking—was easy.

Now that my son has died, I won't even pretend to imagine a day without CHD awareness. He is synonymous with it, and he is everywhere. Even when I'm not looking for him. As I checked in at the lab this morning for some routine tests, I saw his health insurance card and realized that there will never be another day when I present it to a receptionist at any doctor's office. As my blood was being drawn, I thought of all the blood tests he’d endured during his lifetime. When I was at the library, I found out that his card had expired. I paid the overdue fines accumulated when he was in the hospital and felt another loss realizing he won't be checking out any more books. I renewed his library card anyway. As I considered the Valentine's Day card I need to decorate for his brother's school party, I was reminded of CHD Awareness Day, the official day that everyone is supposed to care. The day when people like me want to think that all those news stories and ribbons actually make a difference. 

And as I painted the garage door with the words: "Riley lives in our hearts," I realized that painting things green doesn't actually do anything, aside from making me feel like his spirit is slightly less invisible. But that's probably only to people who are looking for it in the first place...and, of course, to our across-the-street neighbors. 

Grief and clothing

Riley's clothes neatly folded

Snug tee shirts with baseball logos or stripes that fall just below my bellybutton aren’t really my style. But my son’s shirts somehow fit around my torso and fleshy, upper body girl parts. For three days, I wore them hoping to channel my now dead 6th grader, pleased, yet bewildered that this stack of unused clothing used to cover his body. Everything he wore was baggy. It was only when he stripped down without a thread of modesty at bedtime was I reminded of his thinness and how his bones were held together with so little.

Late Sunday afternoon, I tried to complete an outfit. Sliding the shorts up my legs, they got stuck somewhere slightly above the knee. I was bemused that they didn’t fit. I thought they could somehow manage my grown-up body because we always had pulled the elastic so tight around his slim eleven-year-old frame. Surely there was enough cotton and elastic for me. Once I hiked them up as much as they could go, I stood in front of his closet for a bit wondering if I’d lodged them into my flesh just enough keep them in place. I mentally scanned my closet to imagine what I could wear that was long enough to make it work. But then I realized that I’d have to replace his tee shirt with something else, and wearing his tee shirt was comforting.

After removing the shorts from the mother's body, I folded them neatly and returned them to the son’s closet. From there, I went to his twin-sized bed, opened the comforter, and let it swallow me. Once inside, while wearing his tee shirt, the items on his side table caught my eye. I fastened his watch around my wrist, hung his Rainbow Loom necklace from my neck, and put his glasses on my face. From that perspective, while clutching the Freddies (his beloved penguins) in my arms, I flipped through the pages of the map book he made with his best friend, hoping to find him as I experienced the world from his vantage point. 

Every eight weeks

I donate in honor of Riley

I was reading a book at the juice and cookie table today about why people donate blood, and one of the stories really resonated with me. A woman wrote that while the doctors made decisions about her care, it was blood that saved her. Doctors could not have saved her without blood. Same goes for Riley all the years he was alive. 

It’s that time again, people. Every eight weeks. If you are eligible, please donate. Do it because giving feels good; do it because you can; do it to honor someone; do it because someone you love may need it one day. And it doesn’t cost you anything aside from an hour chunked out of your calendar. Just one hour every eight weeks. Make an appointment. My next one is already booked for March 27. Let me know if you want to go together.

Grief and time

When babies are brand new, we talk about how old they are in days, then weeks, then months. Eventually, we move on to years and halves. I have an 8 ½-year-old son. I had an 11 ½-year-old son. That organizing of time seems to be happening in death as well. Right after Riley died, it was, how did he die four days ago? Then, how did he die two weeks ago? And when I started writing this, on the 20th of the month, I wondered how it could be that he had been dead for three months.

How do I keep living when he is not? The months keep piling up without him.

Top of Mauna Kea, elevation 13,796 in honor of my son

A weeklong retreat to the Big Island earlier this month gave my aimlessness shelter. While being aimless at home feels like laziness, being aimless in Hawaii with close friends felt natural. So many people are on vacation and being aimless is often the point of being on vacation. An entire day was spent in a cabana crying and laughing, the ebbs and tears flowing and retreating like the water pushing forward along the sand and then receding into its own vastness. Emotions rode that surf as it gently tapped shore and simultaneously pounded the rocks 300 feet offshore. They were both of those things at the same time, not unlike when I can laugh and then instantly feel pummeled by the waves of grief pushing me under every time I notice his absence, which is constantly.

One day we ventured to the highest peak in Hawaii, Mauna Kea. There were snow-covered rock faces and thin air. The elevation changed our breathing and made our motions slightly slower. Being there was profoundly beautiful, yet ordinary for most humans with healthy anatomies. I felt lightheaded and heavy-hearted. I had avoided elevation most of Riley’s life. How could I go to elevation when he could not? Yet there we were on the top of that mountain for Riley. At the Celebration of Riley's life, a friend distributed wooden token that he had had made. One side says, Climb a mountain in Riley's memory. The other side has a picture of Riley's likeness. We honored Riley on that mountaintop and reflected on all that has happened from that new perspective. Two of my kids had painted stones to leave there. The idea was that we could discover them during a future visit. The perfect hiding spot was under a large volcanic boulder with a bit carved out on one side. I pushed the stones in and covered them with rocks.

The process of burying those stones was surprisingly painful. Leaving them behind felt like abandoning Riley alone in the cold, thin air. It was like I left pieces of him unprotected to endure the elements without me looking out for him, without me taking care of him. No, the stones aren't actually my son, but the symbolism was not lost on me.

Returning to my Northern Californian town was unsettling. Being aimless here feels much less acceptable. There are routines and schedules and lunches to make, days to endure, weeks to pass. And soon enough the 20th of the month will reappear. Every single month, round and round we go, the accumulation of life without him. Eventually October will come around and stab me with each of its passing days. One year, then two, and then somehow my 8 ½-year-old son will surpass my 11-and-a-half-year-old son in age and the younger brother will become the older brother.

Grief and light

As I sat on the sofa in my friend’s mountain house, a ball of light burst onto the painting of trees opposite me. The condensed glow was the tired afternoon sun splashing its last rays before drowning, and I was entranced because in it, I saw you, sweet boy. That splash of light was you in the room with me in the mountains, a place we didn’t go together when you were alive because elevation was not a place you were allowed to visit. The altitude could not provide you with enough oxygen. But there you were for a few minutes. And just like your short life, the glow inched to the edge and disappeared. Then the trees on the painting, just like my life, were dark. You were gone.

As the light glided across the picture, my husband sat and watched it with me for several minutes. He

Moonlight and death

saw a bright spot on the wall, the simplicity of the setting sun. I found the profundity of your soul or your energy or whatever you want to call that thing I need to believe still swirls among the atoms in my universe now that your physicality from it is gone. Nothing has face value anymore. It was you. I know it was. It has to be because seeing you in the inanimate things around me is the only option from now on.

Green was your favorite color. Your favorite shorts were green; your school binder was green; the comforter you chose for your bed was green. You wanted to paint the walls of your bedroom green. So what do I do? I see you in the greens of nature. I see you in the shade of green that we painted our front door. And just as I saw you in the vertical beam of light on the wall after your heart stopped in October 2014, I see you in every lighted spot the sun manages to push through window shades and door jams. But the fleeting beams of sunlight and the green paint and sprigs of grass and spindly pine needles are pointless because they bring you no closer.

Yet finding you all around is what people want me to do. “We do these things to remember him and to nurture this new relationship we have with him,” someone told me. I don’t want a new relationship with my eleven-and-a-half-year-old son. Yet, what choice do I have other than to adapt? The relationship we had is never coming back.

Even with the green and the glowing reminders, I don’t need visual cues to think of you. I breathe you; I exhale you; you are always sitting on my lap and holding my hand, in my mind. You are humming as you etch the math answers onto the paper, in my mind. You are peeling garlic next to me, popping raw cloves into your mouth, in my mind. You are organizing your bottles of Tabasco so that all of the bottles are neatly facing forward, in my mind. You are petting the dog, shouting: “Pepper’s tail just hit me in the penis” just so you could say “penis” loudly in the living room, your smile counteracting your attempt at indignation, in my mind. All of it, only in my mind.

Let’s be honest, shall we? Moving through grief is all about me accepting the world as it is, with exactly the people who tread upon it—no one more, no one less—is it not? One day I will go to buy groceries without feeling panicked when my husband is not in my line of vision. One day I will go to the café and order a latte with a friend. One day—I am told—that your memory will make me smile instead of burn with the need for your forgiveness. Only then will I stop pleading: “ Please forgive me, Riley,” my nightly mantra as I will you into my dreams.

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.