Grief and your 21st birthday

Walking hand-in-hand with your little sister to school, the school you went to, was surreal on your birthday. I could hear the sounds before we even rounded the corner at the bottom of our hill. Laughter came at us before we could see any smiles. We could hear car doors slamming before we saw any cars. The bell rang at the neighboring school. 

As we got closer, so much came into view. There were hundreds of students with messy hair and dusty backpacks. There were water bottles and lunch boxes. There were light-up sneakers and jackets tied around waists. Some children were helping to raise the Californian flag on the flagpole. Some children were opening car doors in the drop-off line. Some were huddled with friends, giggling. Some were walking alone towards their classrooms. I looked for you. I always look for you. 

Just before heading up the ramp toward her classroom, I just stopped and took it all in. A school full of students, hundreds of students from hundreds of families. 

Then it occurred to me. I felt my head shaking back and forth in disbelief. None of them, not a single one of those kids was alive when you were alive. None of them were even growing in their mama’s bellies. Not a single one. So much life since you died. An impossible amount of life has happened in the last 10 years. 

After your sister tucked her backpack into her cubby and found her name card, I kissed her head and breathed the scent of her hair. Then, with green nail polish in honor of you and your favorite color, I began to run. And run and run and run.

Love leaked from my eyes and it was even harder to breathe than normal because crying and running are not very compatible. And while I was running, I was sad and mad and jealous and angry and sad some more. Even when thinking of your smile. Even when thinking of your laugh. Even when thinking of your jokes.

Do you know what baseball and waffles have in common? The batter.

Even when thinking of your love for school and books and reading and math. Even when thinking of you with your best friend (who is now in college, who is now old enough to buy alcohol). Even when thinking of you sitting on my lap. Even when thinking of you making garlic toast for breakfast. I love you.

Grief and the slow erasing

Just like I’d done dozens of times, I’d clicked “Add to cart.” No big deal. Only this time it felt profound. And after fretting about it for ages and wondering what slippery slope I was stepping onto, I clicked the button. What purchase could cause such internal turmoil? A twin-sized duvet cover patterned with whimsical pink and blue and gray unicorns with rainbow-colored manes. It’s for the little one’s fifth birthday.

Delighted in the downpour

She will love it. She loves unicorns and rainbows and flowers and fairies and mermaids and princesses and dresses and tiaras and beaded necklaces and pretty much anything that is pink or red or purple or sparkly or glittery, even though I’ve provided her with trains and Matchbox cars and trucks and shovels and so many things that are green.

Green was Riley’s favorite color. And I have lots of green things. I was even given green blankets when she was born because she was born in grief’s wake for my boy who loved the rain and green and Matchbox cars and trains and Tabasco and garlic and olives. And, although she loves olives and garlic, and garlic-stuffed olives, and she liked Matchbox cars and trains for a while, she’s her own person with her own interests. That, and through preschool and transitional kindergarten, she’s been exposed to kids with Frozen backpacks and twirly dresses and sparkly blankets that look like mermaid tails. And so when she’s in the bath, she asks me to comb her mermaid hair and she pretends that the washcloth is her tail.

The hard part isn’t that she likes different things from Riley, although I really, really did enjoy putting elaborate train tracks together for the months that she was into that. We’d roll our wooden trains over the bridges and through the tunnels just like I did when Riley was small. The hard part is that I wanted to breathe life into Riley’s things for longer. I wanted her to pick up where he’d left off and in using his idle things, give me another chance to be with Riley in my thoughts as I remember the hours we did those things together when he was alive. In fairness, at 11, there weren’t many train tracks or cities drawn on cardboard for Matchbox cars to roll along.

For the 18 months he lived in this house, he had a green duvet with different colored green dots all over it. He picked it out at IKEA when he got his very own bed. For a long time, my boys shared a queen bed and a single queen blanket. But when we moved into this house, I took them to the store and that’s what he chose. His brother chose something gray with bright orange and red swirls. And Riley’s green duvet has been on his bed in his room since he died. It’s been mostly idle.

Before the youngest came along, I would lie on his bed and smooth my face into his green pillowcase and hug his Freddies. And after she was born when she was nursing several times a night, I would sometimes sleep near her in his bed with the green sheets. It’s been her bedroom her entire life, more than three times longer than it was Riley’s room, even though I still call it Riley’s room. And once she switched to a big bed, it was Riley’s bed she began sleeping in and Riley’s duvet she’s been sleeping under.

It's her room; it’s Riley’s room. Riley’s treasures and belongings are still there, but there are so many other things there too. Sometimes it’s hard to remember which is which and what belongs to whom. And, of course, she says things like, “Mom, Riley says I can play with his marbles” which makes his things her things too.

She didn’t ask for a different duvet. She never said she didn’t like the green one. I just want her to be seen as a separate person and to acknowledge her preferences. So, because her fifth birthday is today and she loves all those pink things, I decided to get her that new duvet cover – the one that matches her interests. I suppose I’ll fold up the green duvet and the green pillow case and the green sheet and put them in the closet near Riley’s medicine that is in a ziplock bag, with Riley’s clothes that are still hung, and next to his socks and pajamas – things I’d hoped she’d wear when she was big enough. Though she probably won’t. She’ll have shirts and pajamas covered in rainbows and fairies and mermaids. 

This shrinking or contraction after someone dies happens all the time. Out with the old, in with the new. Making space for whatever is next. She didn’t ask to fill Riley’s shoes, not that she could. You cannot replace a person with a different person. It’s just another shift, another goodbye. Another folding of time.

Riley's green things will be mine to visit when I need to time travel and be with my boy and his beloved things. I cannot help but wonder what will be put away next and what shift will happen that will make his life less visible. It all feels like a slow erasing. 

Riley Run 2020 is canceled

Given the current pandemic, this should come as no surprise. It's a disappointment, none the less. We'll be back next year. It will be the last Riley Run. Here is the message from our amazing run coordinators:

Hello Riley Run supporters!

Unfortunately, but not surprisingly, we were notified by the City today that the Riley Run has been cancelled due to concerns around the coronavirus. While we are disappointed that we won't be able to officially gather to honor Riley on the 19th, we don't want anyone's health to be jeopardized.

 
Along the same lines, we won't be printing shirts this year. If you have donated and would like a refund, please let us know and we will get your money back to you quickly. If not, your donations will be sent to Camp Taylor and Children's Heart Foundation in Riley's name as they are every year.

If the timing works out and it is more safe to gather, we would love to reconvene maybe without the run, but we will play that by ear at this point.

Thank you for continuing to support Riley and his family. We have a wonderful community and we feel lucky to be part of it.

Megan and Cassandra

In the meantime, think of Riley on April 2. It would have been his 17th birthday. Thank you to all who signed up for the first time, thank you to all who have been supporting us year after year. We are grateful for your love.

Suzanne, Riley's mom

Grief and sales pitches

Riley Run 2020! To get this year’s shirt, register by March 19. To register, send email to rileyrun1101@gmail.com OR leave a comment saying you want to sign up. #only2runsleft #wewanttoseeyou #bringafriend #centralmiddleschool #sequoiahighschool #carlmonthighschool

Grief and parents of San Carlos

Parents, this is for you... Many of you know Riley’s story because you follow my blog (even though I haven’t written in a few months). Since his death, you’ve learned about him and his love of Tabasco. You’ve also learned about a mother’s suffering through my words and stories. You might recognize me at Trader Joe’s. You might have seen me walk around school with a hat pulled low over my eyes. I can tell you that while most of the time, I move through the world with trepidation, the day of the year when I feel the most alive is the day when I’m surrounded by people who are thinking about Riley with me. That feeling happens at the Riley Run. That’s when I look out at all of the faces (maybe with tears in my eyes), and feel my boy’s essence in all of the faces looking back at me. There are only two Riley Runs left — only two. Come. Bring your kids. You don’t have to run. And maybe we’ve never met or maybe we haven’t seen each other since his memorial. Or maybe you only learned about his death after the fact. And maybe I wont recognize you (or your kids because they’ve grown up so much since 2014), but come anyway. To be honest, marketing the Run is my least favorite thing because it makes his death feel like a sales pitch. But I need you to come. It’s only $25, and it benefits some worthy charities. But those couple of hours fill my broken mama heart for a little bit. Can I count on you? It’s April 19, at 4pm. To learn more or register, send an email to: rileyrun1101@gmail.com.

Grief and peers wanted

You knew him... You were in the same classes; you played baseball on the same team (or on opposing teams); you played music together; you ate lunch together; you walked the same streets; you played at the same parks. Come remember him with us at the Riley Run (no running required). April 19, 2020. For info or to register: rileyrun1101@gmail.com

Grief and Riley Run 2020

The Riley Run is coming (No running required!) Save the date... April 19, 2020 #rileychallenge #wewanttoseeyou 

Grief and stones

Originally intended for the garden, I couldn’t actually put them in the garden because I feared rain and sun would make them fade over time. Already fearing Riley’s memory would fade with time, I needed these to stay vibrant. So, since Riley’s memorial five and a half years ago, these stones have lived in a wicker basket in the corner of my living room. Today, I decided to use them to cover the cement patch in front of my fireplace... holding each one, reading it as if for the first time, and placing them where they can be admired. I don’t think I’ll want to repair the cement patch any longer. I wish I’d thought of this sooner. Can you see yours? #rileyforever

Grief and endings

Travel Rileys

In my family, the end of the school year last month signified more than just the end of another year. It was the last year that Riley’s classmates were in middle school together, the school that Riley went to. At the ceremony, many eighth graders carried pictures of Riley across the stage with them (see the assortment of Travel Rileys on the left). Riley was given an honorary certificate, and all three of the student speeches mentioned him. It was interesting to hear about his death from their points of view. It’s only recently that I’ve started to consider how his death affected other people besides myself and my family. Hearing his name in their speeches was a relief; it also left me breathless. Mentally preparing for the day was the topic of my latest piece in Six Hens.

Me, trying to smile at the dance.

Later that night, my husband and I chaperoned the 8th grade dance. I felt like an interloper because parents of 8th graders are not welcome at the 8th grade dance. An exception was made for me, and I was grateful to get to see all of those kids one last time before they head off in different directions to high school this fall. A photographer friend made some almost-life-sized pictures of Riley on foam board to have with all of the props--big hats, and crazy sunglasses, and feather boas--at the photo booth. One of Riley's friends helped coordinate a photo of me with Riley's five closest friends. I imagine in the nearly three years since he spent time with them, those kids have moved through different circles of friends. But they were willing to take a moment out of their night to let me get a photo of myself with these boys--these boys who had been at my house for playdates and sleepovers so often when Riley was alive. These boys who I cherish and who make my heart flutter whenever I see them. I so want to publish that photo here--I even smiled--but they aren't my kids and it's not my place to put their photo online. Instead, see the picture of me with my husband (and fellow chaperone) above. I have a strained smile in that photo, too.

Riley, in his signature hoodie.

There was even a slender, not-too-tall boy at the dance who was wearing a red hoodie with the hood pulled up over his head, the way Riley frequently wore his red MIT hoodie. I tried not to stare. And every time I saw him out of the corner of my eye, I did a double take. I mean, who wears a red hoodie to a middle school dance? But I'm so grateful he did. Between my photo with my five surrogate sons and the boy in the red hoodie, it was almost like my boy was there.

Or it was nothing like him being there, and it was just me clinging to anything that reminds me of him.

Grief and reality

#CentralTeamRiley in Lassen National Park

This is one of those nights when I cannot remember what is real. When I crouch on the ground outside the garage and search for my son’s familiar face among the knots on the slats of wood on the fence. When I cannot remember why my husband continues to love me, even when I’m not a nice wife or friend or housemate. When one of his bear hugs cannot temper down the confusion and grief that hangs from my limbs like bricks.

This is one of those nights when I deserve to be all alone, abandoned. When I imagine my husband finally realizes that I’m not worth the effort. When I imagine he sees how hopeless I am, when he finally decides that I’m not trying hard enough to be a part of our family. When I escape to the shower to avoid watching a movie with them because sitting next to them, while they have a good time is too painful. Even though that’s exactly what Riley would be doing if he were here.

This is one of those nights when I question how I can possibly live the rest of my life without him. When the idea of being around people in any social situation that is not centered around grief is betraying his death and the horrors that he endured in the last days of his life. When I question my loved ones when they want to be with their friends in social situations that have nothing to do with grief. When they find a way to live without Riley.

This is one of those nights when I cannot remember who my safe people are. When I imagine what trades I could make to bring him back. When I cannot remember why anyone continues to love me, or want my company, even when I shut them out, don’t call them back, and am absent from their weddings, their birthday parties, their fundraising events, their going away parties.

This is one of those nights when I’m so confused because I’m so lonely, yet I don’t know how to let people be close to me. Because I’m waiting for them to leave me, just like I knew they would when they got sick of all this grieving. When they know that I know that they’ve wanted to lure me away from grief so that I leave Riley behind and get on with the business of being the old Suzanne, the goofy girl who laughed. The fun one. The one who was complimented for being so good at helping people feel included and comfortable in social situations. The one whose job it was to boost the emotional status of everyone in the room.

This is one of those nights when my body hurts from grief. It physically aches from the loss of my 11-year-old son. It’s weighted and sharp, and my lungs cannot get enough air. The pumping of my heart is strained, as if it cannot possibly continue on it’s own. As if it needs someone’s hands squeezing it so that it can take a break from all that responsibility of keeping me alive, even though I would reject any offers of help because I don’t want relief. I think of ways to hurt myself.

This is one of those nights when I hope it gets worse. Because I don’t want to get better. I don’t want to get better at living without my son. I want to suffer for the rest of my life because anything less than suffering means that I’m adapting to his death.

This is one of those nights when I know that while I understand things on an intellectual level, I’m not interested in understanding them on an emotional level. When I understand that my son’s death is permanent, but still hope that I can solve the riddle about out what when wrong so that I can undo his death. When I know that his face and his essence is not actually hidden in a wood knot on the fence, but I continue to stare at it anyway while asking him to forgive me again and again.

Grief and Being Better

This is fascinating... I read today that my latest piece in Six Hens implied I was doing "better." You know, 18 months has passed since my son died, so I must be getting over that whole grief-thing. Having gone back and reread it, I understand why some people interpreted it that way. But in reality, I was so low--which really is just my new baseline--and then, during the month that my father in law visited, the manhole beneath me opened and I fell through it and landed even lower down in a pile of rubble. Yes, I managed pick some of the rubble from my wounds. I even found the gumption to try and climb out of that hole. Each time I met up with a friend or went for a walk, it was me inching up that jagged wall.

Powerful me, circa 2001

Imaginative readers probably pictured me hoisting myself up, ascending rock-climbing style to the top of a rock face or approaching the finish line of some race with my arms raised above my head in victory, concluding that I was strong and badass and overcoming the whole grief-thing. You know, mind over matter. I can understand why it came across that way because, sure, I did things I hadn't done since my 11-year-old son died, like text friends, go for a couple of walks, and get my hair cut. At the end of the month, though, I wasn't at the top of some rock face or near a finish line with muscles bulging from my 5'6" frame. No, let's say more realistically I was covered in abrasions and blisters and probably back to my dismal baseline. And that was only because I figuratively hollered from the bottom of the hole and my friends came to my aid and figuratively dropped some ropes down to me.

To be fair, I could have landed at the bottom of that hole and lay in the gravel, whimpering quietly. I could have ignored the bits of rope that were dropped down to me. But scratch the ripped version of me climbing triumphantly to a mountain top, shall we? Try this image instead: A whimpering me lay at the bottom of a hole and cautiously called out--not wanting to disturb anyone. Then the ropes that came down somehow magically wrapped themselves around me and my friends with their powerful friend muscles did the work. Yes, I asked for help, but I must give credit where credit is due--they pulled me up.

I read an article yesterday about raising children with invisible challenges or disabilities like ADHD or autism. It said that it's helpful for parents to compare invisible challenges with physical disabilities to help people understand. Here's her example:

I am raising two older boys with physical challenges...I have never - ever - had to justify a single accommodation that they required. Can you imagine a school official saying...."well, you know if your son just tried a little harder, he could get out of that wheelchair and run up the stairs and then we wouldn't need to build a ramp." Are you cringing yet?

Yes! That idea does make me cringe. We'd never think a child in a wheelchair just wasn't trying hard enough to use her legs. That analogy got me thinking about the invisibility of grief which makes it difficult to describe and difficult to understand. Over the last 18 months since Riley died, I have tried to come up with a useful physical analogy to describe my parent grief. My latest is that losing him is like losing my arms. Think about it. Think about what your life--or even just getting through a day--would be like if your arms were amputated. No fingers, no elbows, nothing. And while it is difficult to imagine things we haven't experienced, like that article, I suspect that imagining our bodies minus limbs is somehow easier than imagining our lives minus our living children.

Sibling grief art

Given that I’ve had arms all of my 42 years, life without them would never get easier. I would still be able to walk and move around, but every single thing would always be hard. I’m sure I’d figure out how to eat and brush my teeth, use the computer and the toilet (but not at the same time), but I would never be okay with losing my arms no matter how many years went by and how many beautiful people I met at occupational therapy and support groups who also had lost their arms. I would always, always miss having arms.

Grief is invisible, and it’s hard to understand or empathize with if you aren't enduring it. So this analogy is my (latest) effort to help the non-grieving world (and the not-yet-grieving world because life is a series of losses, is it not?), what losing Riley is like. I will never be okay with losing him and every single thing will always be hard. Always. Because, like amputation, death is permanent. I would always, always miss having arms. I will always, always miss my son. Even if I'm trying to get out and do things that I did before Riley died, I will never be "better." I will only be different.

Grief and A Leap of Faith

Gorgeous art from Issue 3 of Six Hens

* Note to reader: This is the "Letter from the Editor" from my literary magazine Six Hens. Issue 3 launched today. Feeling enormously proud. Read, feel something, share... *

A nurse tapped on the door before turning the handle. “I thought you’d want these,” she said as she approached me. She offered two Polaroid pictures of my newborn. Curiosity or instinct elevated my hand to receive them. “He’s beautiful. Do you have a name?” I shook my head then parted my lips to thank her. My words were reflex rather than gratitude.

She switched to nurse mode, asking when I’d last urinated or if I’d passed any clots larger than my fist and whether I wanted to breastfeed. When I said yes to that last question, she said she’d arrange for a lactation nurse to explain the basics. I didn’t protest, although I couldn’t understand how I could learn to breastfeed without a baby. Then her cool fingertips pressed my doughy abdomen. After her exam, I felt her access me in a different way. “You need to name him,” she said softly but firmly. That wasn’t any of her business. It wasn’t part of her job. But she must have heard about his x-ray, the one that showed his heart on the opposite side of his chest. She must have seen paperwork declaring “probable heart defect.” She must have known it was serious. She must have known that naming a newborn—even one with scrambled up insides—was more important than the possibility of him dying nameless.

Chalky morning light muted pinks and blues on the walls of the small room in the recovery ward of that Northern California hospital. It was before rush hour on April 3, 2003. Blankets and pillows swallowed me, but I was cold for the first time in months. My eight-pound-two-ounce furnace was in the nursery somewhere else on the floor. My fingers gripped the edges of the Polaroid pictures, which were face down on my lap. I flipped them. They were almost identical, showing a round-headed baby, eyes closed, head turned left with a breathing tube disappearing into his mouth. One image showed his torso where the umbilical cord stump had been removed. His skin was orange-red from iodine, which could’ve been mistaken for blood. I had read that a newborn’s stump normally fell off several days after birth, revealing a bellybutton. Our son, who we had yet to name, needed his cut away to use as a place to insert an IV.

I thought back to the moments after he slipped from my warm body into the cool, room-temperature air. As a hushed urgency of doctors escalated to my right, I noticed the baby was silent. “Ken? Is he breathing?” I asked my husband. He was, Ken said with his arms crossed tightly over his chest, “but something is wrong.”

A few minutes later, a nurse asked if I wanted to hold him briefly before they took him to the nursery for more tests. “I don’t think so,” I said unconvinced. After twenty hours of labor, my body was relieved to be free of him.

“You have to hold him,” Ken said. I reluctantly agreed. With my baby wrapped like a burrito in a blue, green, and white hospital blanket, the nurse set him on my chest so that I could see the creature that had been rolling around in my tummy for months. He wasn’t the most beautiful thing I had ever seen. His skin looked ashen, his face was contorted, and he was stretching his neck; it looked liked he was in pain. It felt like everyone waited for me to ooh and aah over him. But I didn’t. I just looked at him, at his twisted expression. The nurse said they had to take him. I didn’t want him any longer anyway. I felt faulty because I was not instantly in love.

When my husband returned to the recovery room, he explained that a neonatal transport team was on their way to ferry our baby to UCSF more than fifty miles south. I gave him the pictures. “You can go see him,” Ken said as he studied the photos, “if you’re ready.” When I didn’t respond, he lowered himself into the plasticky armchair to my left and took my hand. He looked thin, and dark patches underlined his pale blue eyes. It had been nearly nine hours since an initial newborn assessment forked us into separateness; I refused to accept that things were going horribly wrong. Surely he was just exhausted from being born; I was exhausted from giving birth. A few minutes later the nurse returned and parked a wheelchair next to the bed. I hesitated. Did I want to see my baby? A good mother would want to. Surely I was a good mother. Like a sack of rice, I slouched as Ken rolled me along. In a hallway carved of fluorescent light, it felt like we moved forward and backward simultaneously.

When we arrived in the nursery, I don’t remember seeing any other babies or cribs. Instead, the small space was crowded by neonatal transport experts. They prepared a special plastic box—a high-tech mobile incubator that would be placed in their ambulance. Plexiglass and a wall of EMTs separated me from my son. Through uniformed bodies, I could see bits of baby. An hand here, a knee there; so tiny, barely human under the web of intervention. He was enclosed, packaged, foreign. I wish I’d kissed his moist skin, inhaled his mossy smell when I had had the chance. The team assured us that he was stable and would be in the best of hands on his fifty-six-mile ride to UCSF, one of the top pediatric cardiac centers in the country. And then they were gone.

Kneeling in front of me as if he were about to propose, Ken’s warm hands reached for mine and pulled them to his damp face. Holding my gaze for a moment before putting his head in my lap, there was nothing to say. My fingers pushed through his trim brown hair and convulsions began. Unfamiliar sounds built in my diaphragm and erupted from my mouth, penetrating an otherwise quiet corridor. Nurses walked around us. No one asked us to move. We were left to mourn that moment. His birth. The unknown.

Eventually Ken pushed himself from the speckled linoleum and assessed my droopy posture. He brushed matted hair from my eyes. In whispers, we decided he should drive to UCSF, the hospital on a hill in our old neighborhood near Golden Gate Park, instead of waiting three more hours until I was allowed to be discharged. With that, he wheeled me back to our tiny room and helped me into bed.

“We have to name him before I leave,” he said with arms folded. I looked at his body, his denim pants and T-shirt, his waning hairline. Only in a twisted world would I debate pros and cons of naming my baby.

I hugged myself, squeezing my arms, rubbing open palms along my sides and over my vacant, shrunken stomach. “Okay,” I said after a long silence, still unsure. “Where’s the paperwork?”

He grabbed the form from the end table and clicked the end of a pen. The lines were long and blank. Without knowing his diagnosis or prognosis, I thought of the nurse, her prodding, and assumed a named child would be harder to forget than an unnamed child. He picked up the Polaroid photos and put them next to me. I studied the baby’s face and hoped it would tell me what it should be called. The blankets vibrated as my muscles shook. The stack of thin layers over my limbs didn’t seem to make a difference. After sinking down further, my eyes closed.

“We both like Riley,” he said, doing his best to keep me engaged.

My eyelids rose and focused on him. He nibbled at his cuticles as he waited for my response.

“I still like Mackenzie for a middle name,” I whispered eventually. “It means son of Ken. Then everyone knows you’re his dad. No one ever wonders who the mom is.” With that, he pushed pen to paper and our son’s name appeared. I sunk lower, clutching a pillow. He kissed my forehead, gathered his things and left.

It was incomprehensible. Riley was gone. I imagined miles of highway separating us, when nine hours earlier we had been connected. His flesh inside mine, held safe with breath and heartbeat. Nothing felt safe anymore. Ken drove home for a shower and fresh clothing before braving that unfamiliar San Francisco hospital, where he would start learning about our imperfect son, a baby I grew so horribly wrong.

It was just me in that little room. I had labored. I had delivered. But I was alone.

I didn’t know it at the time, but naming Riley despite terrifying uncertainty was a leap of faith. It was me desperately wanting him to be okay, hoping it was all a misunderstanding, a mix-up. It was also the first of many moments that define this mother’s love during my son’s truncated, eleven-year lifetime. He would have turned twelve on April 2.

Check out more powerful writing in the third issue of Six Hens!

Suzanne Galante, Editor in Chief

Grief and Back to School

As much as I have enjoyed the days when school resumes and my children put on new sneakers and carry clean backpacks with freshly sharpened pencils and empty notebooks to school, it was no ordinary Back to School for our family this year. On that morning, two weeks ago, when they trotted off to their first day, I sent fewer children to school. It wasn’t a joyous day; it was yet another milestone etched with sorrow.

Ushering the day in without any kind of acknowledgement seemed wrong. So instead of taking smiling photos of my living children and posting them on Facebook, I composed a letter to my friends, the mothers of my children’s friends, the mothers of my stepchildren’s friends, to the principals at my children’s schools. I just needed to be heard. And perhaps understood, if there is such a thing. I got the idea from another grieving mom who sent one less to school this year. It follows:

Flying kites near Riley's memorial before school

Dear Friends,

Every day is hard in its own unique way. Death means that Riley didn’t start 7th Grade today. It means that C, H, and B took their “first day of school” picture without Riley; it means they went to school with a photo of Riley in their backpacks. It means that I said goodbye to C at Brittan Acres and walked up the hill aching to send Riley off with a kiss at the middle school.

Imagine him walking to the new middle school gates with H and B. Imagine him walking the halls of the new school. Imagine him bounding up the stairs to the second floor with energy to spare. Imagine him excited to learn. Imagine him excited to be with the orchestra, ready to learn new songs on his viola--even though "Dragon Hunter" would always be his favorite. Imagine him humming as he does his math homework tonight.

Would he have been wearing a green shirt or a baseball shirt today? Would he be in class with your child? What teachers would he have? What would be his favorite subject this year? Would he still be writing poetry? Would he still be playing “butts up” at recess?

We flew kites near Riley’s memorial at Pulgas Ridge yesterday. We hung a flag in our garden this morning and all shared one of our favorite Riley memories. Say his name, talk about him with your kids, remember a day when we spent time together. Think of C, H and B, too. They are also navigating this loss; it’s twisting and churning inside of them. We are already trying to imagine how we’ll honor Riley on October 20.

With my hat pulled low and covering my eyes, I left school with tears dripping down my face. I suspect that the other parents who saw me imagined I was a mom who had a hard time saying goodbye to her child, which isn’t entirely untrue.

With love,
Suzanne

It feels like part of my job is to continue to help people have compassionate awareness for Riley who is gone from our physical world, and also for his siblings who need to continue navigating the world with a canyon of grief alongside them. Along with that is my need to share this journey with anyone who will listen. It’s almost like being heard is how I’m ensuring that people keep remembering that just because a new year has started, the grief over losing my son, like the universe itself, keeps expanding.

Grief and laughter

Riley was awesome at being goofy, as seen here.

The other day, I sat on the sofa in my yard with a half-eaten salad on my lap. The sun was shining and the broad leaves on the giant Sycamore were protecting me from the 80-degree heat. My husband sat by my side with his own half-eaten salad. We talked about C’s 9th birthday party that was held at our house a few days earlier. A few leftover Mylar balloons still swayed in the background; the bucket with uneaten fruit from our bobbing-for-apples game waited to be emptied; vases with drooping sunflowers and lilies reminded me of how I spruced up the garden for that day. If everything looked pretty, then I would get through it, I remembered thinking. I could show up in a way I couldn't with my husband's birthday. I had to.

We had swept and scrubbed and placed flowers. An extra strong Moscow Mule softened the anxiety I felt around talking to parents as they dropped off their kids. Orchestrating a water balloon toss and a game of “bobbing for apples” for twelve kids kept my grieving mind occupied during the party. And I did get through it, even if the crying jags pushed me off balance every so often. Riley wasn’t there. Being the younger brother, C has never had a birthday without him. Now he’ll never have another birthday with him. None of us will. In all the fanfare, I forgot to have the kids decorate a flag in honor of Riley.

As my husband and I ate our salads in the shade in our backyard, in addition to talking about C’s birthday, we also talked about wanting to paint the house, how the deck needs to be refinished, and in which order those things should happen. It was all very ordinary chatting about this and that. And then my husband said something amusing. It was a line I’ve heard before and one I will hear countless times during our years together. I cannot even remember what it was that he said. But laughter ripped through me. Heaving, can’t-breathe-laughter. My body’s response was far grander than necessary. It shook me, jolted me, and then slapped me across the face--it was that throbbing part of grief. The heat of regret bubbled up. There was anger. And annoyance, too, for allowing some other emotion to penetrate the wall I’ve built.

I used my napkin to absorb the regret that leaked from my eyes. After that, my husband held me for a while. I know people want me to laugh and feel better, but I don’t want to laugh or feel better. Not yet anyway. Maybe I will someday--at least that’s what people keep telling me. For now, my soot-colored world is where I’m meant to be. And the throbbing, like the pulsing of the umbilical cord that once connected us, is my constant companion as I navigate this world without him.

Grief and throbbing

Riley flags in our yard

Imagine petting your dog through rubber gloves. Imagine kissing through a sheet of plastic wrap. Imagine showering wrapped in a rain poncho. Imagine trying to smell freshly baked cookies with nose clip. Imagine listening to your lover while wearing earplugs. Most of the day, I’m wrapped in this numbness. My world is a spectrum of gray; colors covered in soot. Numbness fills the space between each throb when grief grabs me and strangles me for a bit. It throws me down and for that period, I feel everything. All the numbness disappears while I’m overpowered by a current, a rawness, the force of every ounce of grief bound together as a bus that rushes me at 110 miles an hour. It flattens me, leaving me breathless and weak and feeling even more broken. When it passes, numbness returns for another moment or few hours or days, depending.

This is grief nine months in. It’s like throbbing--the punch and the space in between. My 11 1/2-year-old son has been dead longer than it took to grow his beautiful, imperfect body.

* Want to make a Riley flag for our garden? Use any bit of plain fabric, any color you like about the size of a piece of paper. Decorate it with anything you like on one side only--Sharpies, glue, sequins, other crafty thing you can think of--bearing in mind that it will live outside. So if you glue stuff on or use markers, try to use ones that are designed to withstand a washing machine (or Mother Nature). Please leave about an inch at the top undecorated, as I'll need to sew the top so that we can thread it onto our line. When your flag is ready, shoot me a message and I'll give you my address. You can mail it to me or leave it on my porch if you happen to live nearby.

Grief and blank spaces

The "H" Word

Saggy balloons hang from the wall outside my bedroom door. They are attached to a handmade sign declaring that thing you’re supposed to say to people on the anniversary of their birth that includes the “H” word. It was my husband’s birthday last Thursday and with great enthusiasm the children scurried around the house before they went to school that morning. They put gifts in bags and stuffed colorful tissue paper on top. They blew up balloons, made that sign, and taped those things carefully to the wall as they wondered what kind of cake we might eat later that day. I didn’t tell them that there wouldn’t be any cake.

But I was wrong. Last Thursday was also the final night of our family grief group, and at the end of the evening, there was a box of cookies, a plate of deviled eggs, and a cake. They were thrilled. Different activities beforehand made us end up with two cars there. The kids all piled into my husband’s Jeep and I drove home solo with Talyor Swift’s addictive love songs keeping me company. I was spared the children’s singing, the laughing, the merriment.

It was after their regular bedtime when we got home. Yet, the presents hadn’t been opened. As we sat on the ground near the sign, the kids presented each gift and Husband received it with fanfare. “We sang Happy Birthday all the way home!” they said. From there, they burst into several variations of the song, substituting silly words for the regular ones, making them fall all over each other with delight. Colorful bags and a rainbow of tissue paper covered the beige carpet. “How is this a happy day?” I wanted to shout at them, to temper their enthusiasm and jubilance. “Riley isn’t here. No days are happy days.”

But they are children and they don’t know about grown-up feelings. They lost their brother, they don’t want to lose Christmas and birthdays, too. I kept inching myself away from their sounds. I wanted it to stop. This line of being with the living and staying with Grief is a balance I haven’t figured out. I could feel Grief’s open arms waiting for me a few feet behind in the comforts of bed. It loves me, comforts me, feels safe. The feelings are mutual.

Husband shuffled the kids off to bed and I plowed my face into pillows and refused to speak. I transformed from Present Buying Wife into Bitch Wife, angry that Husband had a birthday in the first place. Angry that his family sent birthday cards. Angry that he called them and laughed and joked about who-knows-what. I could still picture him jumping around the kitchen like one of the kids repeating, “It’s my birthday. It’s my birthday.” In between each line, I hear: Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. That’s what I always hear in the blank spaces.

I tried to explain the other day what the world is like to me. It goes something like this:

Husband: “Do we need milk?”

Wife: Riley died. Riley died. Riley died. “I’ll look.” Riley died. Riley died. Riley died. “Yes, soy milk and regular milk.” Riley died. Riley died. Riley died.

Husband: “Ok, I can stop at Trader Joe's after I get the kids from the Youth Center.”

Wife: Riley died. Riley died. Riley died. “Ok, will you also pick up some fruit for lunches? And cream cheese, too?” Riley died. Riley died. Riley died. Riley died. Riley died. Riley died.

Husband: “Absolutely.”

Wife: Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died. Riley died…

With my head pressed into the pillow and the blanket over my head, I refused to acknowledge the birthday boy for the rest of the night. I couldn’t look at the 44-year-old version of my husband. I don’t know him. My 43-year-year old husband cleans Riley’s glasses and gets Riley to roll his eyes. He carries Riley to the treehouse when it’s too hard for Riley to schlep up the hill for the kids' overnight in the yard. He reads the latest Rick Riordan to him as he lies in the hospital bed. He tussles his blond hair before burying his face into the unkempt locks to deliver a kiss. This 44-year-old husband won’t do those things.

The lights go off and Husband climbs into bed beside me, scoops me into his arms anyway. I don’t resist, but I don’t sink into him either. Once I feel him drift into sleep, I get out of bed and wrap my housecoat around my sad body. With flashlights, I fumble behind the house looking for the dull ax. From there, I begin whacking what used to be the “Gratitude Tree” in my front yard. “I hate you Gratitude Tree.” Whack. “Why did you have to die?” Whack. “I’m so sorry.” Whack. “Don’t be mad because I’m chopping down this tree.” Whack. “Please forgive me.” Whack. “Fall you fucking tree.” Whack. For nearly an hour I hack at it.

When it’s finally severed, I sat in my sweat-soaked robe on the brick wall and watched the full moon rise over the neighbors’ houses. From there, I crawled back into bed; I was finally able to sink into my husband, let him hold me, comfort me. I looked forward to admiring my handiwork in the days to come. But the next day, the gardeners removed the tree’s trunk and downed branches as well as the stump. Where it used to stand is just a clean, blank spot in the lawn covered with stones. Three days later, my right forearm and elbow swollen to almost double the size of my left arm, I wonder if it was worth it.

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.