2018 Riley Run

* Register Now for 2018 Riley Run *

It's time to register for the fourth annual Riley Run. 

Runners, walkers, skippers, scooters, and hoppers are all welcome. It starts at Brittan Acres Elementary at 4 pm on April 21, 2018. Register soon in order to get your very own Riley Run t-shirt with this year's mystery Riley quote on the back. 

The $25 registration fee will be split between the Children's Heart Foundation and Camp Taylor, a free summer camp for kids with heart defects. 

To register, email: rileyrun1101@gmail.com

Grief and my beating heart

Sunset, before the world falls into black.

Pressing into my jugular, I wait. Wait for the irregular heart beats--they don’t happen much anymore. Stress, they said. But I listen for them with my fingers. I want wrong beats to exert themselves. I keep anticipating more palpitations. Side effects from the medicine, they said. It’s terrifying when they happen, especially if I’m driving and everything falls into a black tunnel for a moment. But there’s something about wrong beats or extra beats that make me feel connected to Riley. Grief broke my heart. So I listen with my fingers pressed into my neck, feeling each beat as it pushes back against my fingers. Waiting. Waiting. Waiting for my heart to be in sync with his. Just like it used to be.

Grief and scowling

Tile at Riley's elementary school

My husband was not home for dinner Tuesday night. He was at a school meeting. I sat at the table with three loud children. Enthusiastic children. They were excited about the cheesy garlic bread I made. They wanted to grate mountains of cheese onto their spaghetti. They did not like the look of their apple and beet salad with walnuts. But they laughed. They hummed. Told jokes. Asked for seconds of bread and pasta and cups of water. Said please and thank you. They were just being themselves.

I scowled at them.

I couldn’t wait for mealtime to be done so that I could excuse myself and retreat to my quiet bedroom. I spend a lot of time in my quiet bedroom these days. But just before people were done eating, my nine year old caught my eye in a lull in the hullabaloo and said: “Mom, I want to apologize. I know we’ve been acting a little crazy. And it seems like it’s really upsetting you.”

Wow.

Despite their version of craziness, they see what’s going on. How sweet of him to notice. At the same time, how sad that he’s noticing. How sad that mom was scowling in the first place. Scowling so much that my son felt the need to apologize. I said thank you for noticing. I told him it wasn’t about them having fun; it was just about me feeling sad about Riley.

He was right, though. I was really upset. The things I used to enjoy about my kids are upsetting now. I get mad at them. I scowl. I don’t like fun. Or laughter or any kind. Mealtime used to be a joyful event. A few months before Riley went into the hospital last year while my husband was out of town, we spent an entire meal only singing to each other. As in, anything that needed to be said was sung, not spoken. “Would you please pass the cheese?” was a melodic request followed by: “Yes. I will pass the cheese, pass the cheese, PASS the cheese.” Think Bohemian Rhapsody. It was the best. 

Laughter is now grounds for disgust. I just don’t know how to let things roll off of me anymore. Or really be in the moment. I’m lost in despair because of what happened to Riley; I’m lost in anguish because I have to live this life without him. Most of the time, I feel like I’m in sensory overload. It’s like the whir of a stove fan overpowering most of what’s going on around me. It makes it hard to hear things. It makes is hard for me to concentrate. Before Riley died, I struggled when there was a lot of sensory input around. When the kids were talking and there was music playing and the oven fan was running, my brain was stuffed with too much to process. Now I feel that way all of the time, even in a quiet room. That is my baseline. I’m always running at capacity. Add three enthusiastic voices singing and laughing and talking over each other and my brain feels like it’s going to burst. Hence, the scowling.

If my brain were a balloon, and grief was water, my brain would look strained by the amount of liquid forced into the allotted space. Grief has exceeded its capacity. Each person or sound is like turning on the tap even though the latex has no room for another drop. Even kids’ laughter. Or maybe I should say especially kids’ laughter. My brain cannot take the input. Despite the talks we’ve had about them feeling sad on the inside even though they look happy on the outside, it’s hard to accept. All that laughter feels like a betrayal of the truth. All that laughter is stretching my brain beyond capacity to tolerate my reality.

There are times that I can manage, that I enjoy being with the kids. I like reading together before bedtime. It doesn't happen very often, but I like it when it does. It's a sit-and-be-quiet time. We are together in a way where I don't feel overloaded. We read Riley's favorite books or talk about whether Riley would like this or that in the stories. I can almost imagine that he's there listening, too. Although, I'm sure he was also there laughing at the table, making jokes, singing along, sprinkling hot pepper flakes on his dinner, then lifting his shirt over his head, spinning it around like a lasso, trying to get everyone to laugh.

I really don't know why I manage one, but not the other. I could speculate, but I think I'll just be grateful that there are times when the scowling gives way to togetherness.

Grief and Riley's Handprint Memorial

I am truly humbled by all of the people who came over to participate in our memorial. It was healing for me to see that so many people are still thinking about Riley and to be surrounded by so much love on this especially painful anniversary. We made a time-lapse video to capture the transformation of our garage door. Watch it, and let your heart soar.

Grief and lies

When my kids were small, we would walk hand in hand to school. I’d be sandwiched between two blond boys with a pair of velcroed shoes on my left and laced ones to my right. Riley would try to roll the skin between my thumb and first finger. We’d sing catchy tunes from the radio and skip and talk about what playdates we’d have and when and what we’d have for dinner that night and whether grandma was going to be watching them because I had class.

Notes from classmates

I’d walk them through their elementary school’s corridors right up to their classrooms and watch as they unpacked their lunch boxes and hung their backpacks on their hooks on the walls decorated with butterflies and ladybugs. They’d send me off with tight hugs and professions of love. Sweet, sweet boys. “You’re meeting me at the flagpole after school, right?” The answer was always yes. Then they’d scurry into their rooms and find their assigned seats.

I was often at school. Over the years, I’ve been a volunteer art teacher and a volunteer gardening teacher. Every Wednesday for two years, I read in C’s classroom. I talked to 4th graders about the books they’d been reading, helped with classroom parties, made grand trays of caprese salad for the end-of-year picnics and attended music concerts and plays and dined in the Scat Cat Cafe hosted in Riley’s 2nd grade classroom.

Since October, I’ve been to the elementary school three times--once on the morning when C resumed 3rd grade after Riley died, once for his parent-teacher conference, and once for his glee concert last Friday. For the concert, I stood in the rear corner and sobbed. Between songs, I stepped through the open door to get fresh tissues and breathe the outside air deeply, trying to settle myself. I avoided other parents and bolted for home after the applause faded and C said goodbye to his buddies.

C takes himself to and from school on his scooter these days. But per his request, I’ve recently started meeting him halfway down our street. At 2:30, I wander toward school and he races toward home and we meet somewhere in the middle, usually just around the bend from the house with the metal dragon sculpture in the front garden. C is usually the only person I talk to on those journeys, just the way I like it.

But last week, my neighbor was tending some shrub or other as we passed. I flinched as he looked toward us. “How’s it going?” he asked. “Hanging in there,” I lied, after a slight pause. I stole that line from my other neighbor who recently lost her husband. It’s a non-answer, really, and it's probably the first time I've answered that question without using the words terrible, heartbroken, or not so good. Those responses seem to stump people, and I didn't have the energy to engage with him about my reality. The one where I want to do nothing but sleep because when I'm sleeping, I don't know that Riley is dead. And let's be honest, most people don't actually want to know how I'm doing.

How I long to go back in time and walk those boys to school again. The uncertainty of Riley's health was always the undercurrent in my daily life, but that uncertainty was far more palatable than this reality.

Grief and fighting

The soles of my hiking shoes crunched along the composite as I sauntered down the long, empty trail taking me from here to there. Inching along with the fog hovering over my shoulder like an enthusiastic editor, I willed someone to come out from behind the tangled poison oak and manzanita to mess with me.

Green worry stone

Nothing scares me. Not that I was anywhere scary. Pulgas Ridge is a county open space preserve sandwiched between sleepy San Carlos and Redwood City. Years ago, it was home to a tuberculosis sanitarium and skeletal remains in the shape of cement stairs are interspersed among the trails and fields of oak. I’ve been hiking there on my own since Riley was a newborn strapped to my torso in a baby carrier 12 years ago. The scariest encounters would include a fistful of teenaged boys wandering into the dusky acres to get stoned and an older man donning a hat and sunglasses that set of my dog’s attack instinct. And neither of those were actually scary. Still, I couldn’t help but hope for a fight. I pictured this faceless stranger and readied my response: “Yeah, you want to mess with me today? You might want to rethink that because I’ll claw you open.”

Today, you see, is the 6-month anniversary of my son Riley’s death. I rubbed a green glass stone between my fingers as my legs took me along the trail. I couldn’t feel them and was amazed that I managed to stay vertical. They are numb so much of the time. I have to think about my arms, too, and will them to grasp and shift and lift and brush. The only part of my body that I feel is my heart. It beats with mind-boggling regularity. The simplicity of it--unconscious, reliable, unfailing--yet something his heart could do no more. When I’m still, I feel the muscle thumping against my ribcage. Then I remember those hours as his heart slowed, slowed…… slowed…………. slowed…………………... until it squeezed for the last time. Afterward, I crawled onto the bed beside him and held his still body. Then I left him there, alone, and got into my car and went home without him.

The muscular golden dog trotted up beside us as we walked the hill to where I visit the stone memorial I made for Riley. It looked like the Rhodesian Ridgeback with the same name I met a few weeks after Riley died. How fitting, I thought to see that dog again on this sad anniversary. I hadn’t seen him since November when I couldn’t bear to speak that horrible truth to his owner.

“Haven’t seen you in a while, Riley,” I said to the dog as he followed my girl Pepper as she leaped after her tennis ball. Then coming down the hill was the dog’s owner and a friend. As they approached me, I said, “Is that Riley?” just wanting to make sure it was the dog I thought it was. The man said yes. “Do you spell it like this?” I asked as I pointed to the black grief band I wear with RILEY embroidered in kelly green. He said yes. “Is that your dog’s name, too?” his friend asked. “No, it was my son’s name. He died six months ago today,” I said.

Their faces twisted with compassion as the emotion dripped down my cheeks. “That’s got to be the most difficult kind of hard,” the friend said. “Are you getting some support from a counselor?” I am. “I have a lot of support; I’m really lucky that way. But I can’t say it makes it any easier,” I said. “I can’t imagine it does,” he replied. We talked about the dogs for a bit and I pet this furry Riley before continuing up the hill.

I am so profoundly sad and heartbroken and it is still so very impossible for me to believe that he has died. With two houses, it just seems like he must be at his dad’s house. And then there are all the days when C is with me and Riley is not there and that idea that he is just at his dad's house becomes even more impossible.

I miss the simple things...his crazy soft hair, the way he bites his cuticles, how he couldn't hear me ask him a question when he was reading, the way he said "mom." I miss the way he held his Freddies--his beloved penguins--one in each arm at bedtime.

Impossible for people who have not lost a child to understand what it feels like, imagine a gaping, constant loss. Every time you see one of your children--every time you eat together or go somewhere in the car, someone is missing. Every time you talk to one or your children or think of them. Every time you wash their laundry or pick up one of their books or shoes, or every time you imagine tomorrow or the weekend or summer vacation--delete them from each of those images. When you grocery shop, you don't need to buy their favorite cereal. When you go to a child's baseball game, or school event, or see one of their friends, it is a reminder that they are gone from this world. Every night when you kiss them at bedtime, they are not there. It's like losing Riley hundreds of times each day.

Imagine never having another photo of your child. There will be no more photos of Riley. There will be no more pictures drawn. The few precious times I’ve happened upon a scrap piece of paper that he doodled on, it instantly became a sacred item placed on the desk in his bedroom because there will be no more doodles.

No, there were no leery individuals on my hike at Pulgas Ridge. There were no fights for me to funnel my anger into. It was just me and my own internal battle, a wild spectrum with weapons crafted of rage and sadness, loss and disbelief, pain and numbness. It would have been his 12th birthday on April 2.

Grief and Opening Day

I’d forgotten about all the socializing and cheering that happens at Little League games. I am not up for socializing or cheering. I hid under the brim of my cap at the edge of the field or against the wall of the nearby school when C played this past week. He had two games since Opening Day, and Opening Day was last Saturday. All that playing put me in the middle of more social situations than I’ve been in since Riley died in October.

Life goes on

Over there, across the blacktop is a mom whose taken C after school several times since Riley died. She’s talking to a woman that I recognize, but am not sure I’ve ever officially met. She scoops her long hair with her arm and it cascades down her back. There is smiling and laughing and small talk; there is clapping and an ease at just being in the moment talking with a friend. I’m largely scared of the non-grieving population, as I’m sure they are largely scared of me. Sunglasses are adjusted, hair is twisted and tied at the back of her head. The sun bakes our mid-March bodies, forces layers to be peeled away and pale skin soaks the up the heat and threatens to become pink.

Their interaction seems effortless, easy, relaxed, normal. I wonder about the baseball season three years earlier when Riley played on this field. At the time, the kids seemed so big, grown-up, skilled for eight- and nine-year-old players. They whacked the ball into the outfield. They sprinted to first base. They dove to catch balls that seemed almost out of reach. I notice the kids on the field doing those things now. When did C become a big kid?

When Riley played on this field those three years ago, I made a connection with another player’s mom. She marveled at my son who’d endured five heart operations, yet was very much alive. Very much a part of the game. Very normal looking despite his mixed-up insides and uncertain future. That season she joined me in celebrating Riley’s accomplishments. To an outsider, my enthusiasm and praise may have seemed beyond what was called for, beyond what a child with normal abilities may have received for hitting, catching, running, and just swinging his bat. Every at-bat was praised—every walk, every foul ball, every strike out. For trying, for getting back in there again and again, even though it was hard for him, the boy with the faulty heart and not enough oxygen to nourish his cells.

Riley didn’t run fast—it was more of a shuffle—so if he shuffled to first base after getting walked, it was a big deal. If he snagged the ball from the air, it was a big deal. As he trotted to the grassy spot where the ball smacked the earth after missing his glove, I cheered. Him showing up again and again for every game and every season—he played for seven years—was a big deal. He was out there trying, even though each of those things involved an effort so far beyond normal effort. He loved the game.

I always feared the day he would decide not to play another season. When the games became more about winning and less about having fun. When he felt his struggle on the field was hurting his team and decided to use his energy reserves for something more stationary like art or reading. He never made that choice. And I’ll never know if he would have signed up for this season. I like to think he would have. In the meantime, I go to C’s games and wonder about the cheering and the life-goes-on normalcy around me. Like so many things in life, I will always feel sad about all of the things that did not happen, the life experiences un-experienced, the milestones met and marked by others, the seasons coming and going, the beginnings and the endings.

C had been invited to throw the first pitch on Opening Day for the league Riley would have played for. Some of Riley’s friends showed up and helped C warm up his pitching arm. C told me: “I feel sad all of the time, even though I don’t always look sad on the outside.” I was amazed at his eloquence; that's definitely how I feel too. That morning on the mound, he looked proud and happy and sad and nervous. That’s probably how I looked too, at least when I wasn't hiding under my hat.

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 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.

My son is dead

As I hiked in the hills near my house with the dog this morning, we came across two other dogs and their owners. One of the dogs was named Riley. I almost managed the courage to say, “I had a son named Riley and he died four weeks ago.” But the words failed to emerge from my mouth and I wondered if sharing that news with a complete stranger was worth it. I ultimately did not share. What would I get out of it?

Practice, I suppose.

Would you like to hear about my dead son?

The family who lives next door to us doesn’t know that my son has died. We don’t really know them. We wave when we see each other. We’ve invited them to various backyard parties, my kids wanted their grown-up son to babysit them, they had an old yellow lab who died recently. But we don’t know them. One of the worst things that can happen to a family has actually happened to the family who lives 15 feet west of them and they have no idea. None. It's not their fault. It's just reality. Our other neighbors that share our side fence don’t know either. Should I put notes in their mailboxes?

I’ve wondering if there some sort of grief flag I’m supposed to hang from a tree in the front yard. I’ve wondered if I’m supposed to put a sign in the front windows of the house. Or on my car. I’ve thought about creating some kind of grief band to wear around my arm. It would say something like, “My son just died.” Our society needs some kind of indicator to give the grieving a little way to acknowledge what has happened. A quiet way to acknowledge that walking through the Trader Joe’s or Walgreens is surreal when your child has died. So that others may tread lightly. So that perhaps we’ll see others with grief bands and know that we aren’t the only people to experience this silent and isolating misery. Maybe then we'll feel slightly less isolated, even if we don't feel any less miserable.

I imagine at some point in the future, the neighbors will ask at one of our kids’ lemonade stands: “Where’s your brother? The one with the glasses?” At that point, the kids will say: “Oh, Riley? He died…” A look of confusion will surely consume their faces followed by an awkward series of questions and the inevitable, “I can’t believe we didn’t know.”

It's strange that I cannot manage to speak this news to people--like the man walking his four-legged, rhodesian ridgeback Riley--given I want nothing more than the world to keep talking about him, thinking about him, and seeing his light radiate through everyone who knew and loved him. Shine it out. Yet, I am silent. I'm mainly hiding away, avoiding the conversations, the looks, the inevitable sobbing that comes with talking about my amazing son. Did you know that he could draw the 50 United States from memory? Including state capitals? How I wish I had taken a video of him at the chalkboard as he demonstrated this skill.

I know that me staying hidden away is different from not knowing how to tell the neighbors or avoiding eye contact at the store, but both are about acknowledging what has happened. Sharing the news of his death with the world has been something I haven’t figured out yet. I’m sure if I looked, I’d find some kind of etiquette pamphlet about this kind of thing. This unbelievable, horrible thing.

Holding you

I held you in my lap on Monday. I was in the passenger seat and I clenched you, the brown boxes of you, as we wound along the roads from there to here. How I’ve wanted to hold you this past month, all those days in the hospital and all the days since. Even after you died, when I was allowed to climb onto the mattress next to you, to stroke your hair and whisper those last times into your ear, I wanted to pull you in, squeeze you like I always have. Not holding you, not touching your skin feels impossible. Yet here we are.

An everyday hug

And now I’ve held this new version of you, these two weighted boxes with your name on them. I wasn’t sure what I was expecting when we arrived to claim your ashes. But you are not you at all. You are like a parcel waiting to be shipped. And when your dad takes his parcel version of you to his house, well, I cannot understand how can you be in two different places at the same time. Someone measured and made equal the ashes you left behind. It’s not like having some of your clothes here and some of them there.

All those days, and even now, I yearn to wrap my arms around your body as I have done all the days that I can remember being your mother. Even before you were born, I would fold my arms around your curled up body as it rolled inside of me. Why didn’t I hug you longer each time I kissed you goodnight? Why didn’t I hug you when you came in from school every day? How did I let you slip into your dad’s house without more fanfare? Did I really believe there would always be more? That the opportunities stretched beyond any given goodbye?

I know the answer to those questions. We simply lived our lives. We loved each other and lived together and you went to and from school, the park, a friend’s house. Our days were normal. Love floated through our worlds like the dancing vapor rising from a latte. It was faint, yet warm and visible. Each hug was never to be the last. Even that morning when I last heard your voice, when I said I love you and you said I love you too as doctors escorted you beyond the double doors—the last time I really saw you—it was a placeholder until the next time. Those words were casual confidence that there would be many next times.

Only now do I realize that more than my wants to hold you, to feel the way your elbows bend and the points of your shoulder blades, is my desire to feel you hugging me back, your small hands squeezing mine. To feel the weight of your limbs around my body or sitting on my lap just like all the other days. To press my nose into your hair and breathe you in, the warm wisps of love.

With every exhale, there is love

How can I possibly sum up all that you meant to me with the 26 letters of the alphabet? My mind races with how to assemble them accurately to say what I’m feeling.

A happy life

Pain is simple. It is easy, effortless. I open my eyes, I throw blankets back, I look at every object in my room, my house, and I find you. There are the pictures taped to the mirror on my dresser. There are the necklaces you made hanging around the base of the lamp on my side table. There are the hidden Christmas gifts that fall from the closet as I reach for the drying rack. There is the book you were going to read when you came home. These lovely, simple things are painful because they flood me with all that was, all that ceases to be.

Dark is easy, too. I think of how you walked out of school on a Tuesday, and as they tried to fix you, they destroyed your bit by bit. With their medications, they cut off the circulation in your legs, your hands, and I watched bits of your body die days before your heart stopped. I think of the packet of ashes waiting for me to pick up from the funeral home. How can you not exist anymore? How can your body—the one that I held and kissed and bathed and nursed and marveled at and read to—be removed from this earth, from my house, from this town, your school. The clothes you wore to the hospital sit on the step stool in the kitchen. You are here and you are gone.

There is also light. Every time I look out the window, I see you. You are in the shaking leaves on the London Plane in the garden. You are in the blades of grass forcing their way through our dry earth, browned by drought. You are stretched across the flat pads of the Manzanita bushes that dot the hillside where we walk our dog. You are in the fronds of the pineapple palm trees that line our streets. You are in the stems of the flowers standing in the vase on the patio. You are the bougainvillea branches stretching toward the sky. You, my boy, are everywhere. You shine through the front windows even though I’ve covered them with dark curtains. You flood my heart with light because you were light. Beautiful resplendent light.

There is also love. Within the pain, the dark, and the light, is love. Your name is love whispered into my pillow. Your photos are love flooding my eyes. As I lie on your bed in the dark, I inhale the scent of your blankets. It is love. Love is everywhere, you are everywhere. And nothing I can say or write can make you whole or bring you back or undo the wounds. But I have love. I have your memory.

You beat in my heart, you move through my veins. You flood my lungs and I breathe you back into the world with every exhale. 

To read about my son R, go here. 

Eleven and a half

Despite the very special team of doctors and nurses helping him, Riley died yesterday afternoon, Monday, October 20, 2014. I am heartbroken for my family and I am heartbroken for all of the people, especially the children, who know Riley. I wish I could scoop them up and protect this from this horrible truth.

Hopeful with siblings before surgery.

Riley went into surgery scared, but hopeful. He looked forward to running, flying on airplanes without oxygen, and going to the mountains--something he could not do because of his low oxygenation. I like believing that he died still feeling hopeful for those things, and I imagine him running and running and running. I feel grateful that he died while being soothed by his mother, father, and two bonus parents and not in an operating room. He is no longer in pain, no longer suffering, no longer struggling. For this I am also grateful. Afterward, I noticed a vertical beam of light pressed against the wall near the closed blinds at the end of his bed. He is free.

We know you all want to do something and we appreciate your love and support. In lieu of flowers or other gifts, please consider donating in Riley's honor to Camp Taylor, which is a free summer camp for children with heart defects and their families. Also, please donate blood, not just now, but again and again. Riley lived as long as he did because of the generous donations of countless, nameless, and selfless individuals. His corneas will be donated to help others.

At some point, there will be a celebration of Riley’s life, and we will post details here. In the meantime, I wanted to share a poem that Riley wrote last month for a class assignment:

Gracious Green
By: Riley Norton 9-16-14 

Do you know what my favorite color is? Green! 
He is: nature; earth’s greatest gift, 
the leaves that sometimes drift, 
an Exit sign glowing on the wall, 
and a brand new tennis ball 

My color sounds like the wet grass when you step in it 
He tastes like a salad with some vinaigrette 

My color feels like a warm, soft pillow 
Green is the smell of a tree called a willow 

Green looks like a sour apple ripping on a tree
he is someone's favorite color and that someone is me! 
IS YOUR COLOR GREEN TOO??? 

Thank you for loving him, and us, through the years.
Suzanne, Ken, and family

UPDATE: Donate to Camp Taylor in Riley's memory here: http://www.firstgiving.com/fundraiser/rileynorton/donate

Lullabies for R

In the last few days while R has been on life support, friends and family have left him voicemail messages that we have played for him. Others have thought of songs that have been meaningful to R over the years and have played those songs for him. Two different friends mentioned "Fireflies" by Owl City. It was the theme song to so many Wednesday adventures with friends. And long before that, it was a song that R sang so often that I recorded him singing it. This recording is from November 2009. R was six years old.

As a side note, I cannot even begin to tell you the nightmare of opening one's laptop to find out that the world has decided that your son had died. To receive condolences for a death that has not taken place. In the future, please visit R's blog for accurate information regarding his journey.