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 showing up

I’d been up at night, fretting for weeks before the annual run in honor of my dead son. This year, it was held three years, six months, and one day after he died. I’d been trying to think of what to say to all of the kids that would be at this year’s run. Something uplifting about grief? I couldn’t think of anything uplifting. Something profound about showing up even when showing up to confront grief is hard? Something about how grief is forever because death is forever? Maybe a funny story about Riley? Maybe something about the importance of remembering?

I kept feeling like I was supposed to have some speech prepared. Sometime to say about grief to his peers who are now in high school, some lessons I’ve learned, some silver lining crap. I kept picturing my moving speech the foundation of some Ted Talk I would eventually produce on grief since I’m a grief expert these days. But no thought bubble appeared over my head helping me know what to say. All I kept thinking was that I have nothing because grief is awful and unrelenting and forever. I haven’t learned anything. I will never not be sad that my son died. I will never not be angry that he was stolen from me and his family and this life.

I honestly don’t know what I ended up saying when confronted with a group of dozens of his peers and their families who decided to spend the most beautiful day of the month thinking about Riley, running in the heat, and being offered hot chocolate at our house after the run (hot chocolate -- one of Riley's favorites -- seemed like a fabulous idea when I thought of it weeks earlier when it was much colder). As I stood in front of them, their expectant faces watching me, I could hardly find my voice. It wobbled and broke as I marveled at their size, them being there when they could have been just about anywhere.

I was humbled that they showed up. It made me feel slightly less alone that day. Another bereaved mom friend who was there said I had a glow about me. I think it was sweat combined with the way I feel when I’m in the middle of something to do with Riley. When it’s okay to say his name, okay to cry, okay to talk about him to people who don’t feel uncomfortable hearing his name or stories about him…at least in that moment. It’s the closest it feels to him being alive now.

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 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 friendly neighbors

My arms bore the weight of an extra large Google Shopping Express box filled with tin cans and glass jars emptied of their contents as I wandered to the side of the house to our recycling bin. It was Monday night after all, and garbage trucks begin their weekly roll down our street each Tuesday morning before neighborhood sparrows being their morning chatter.

Our home is downslope from the row of houses along the side of our property. Our neighbors’ backyards line our side yard. Above my head to the west is our new(ish) neighbor’s deck. The family who lives there moved in last fall. And almost as soon as I heard voices from the home that had been empty the two previous years, Bay Area rainstorms kept everyone in their dry homes, and prevented us from connecting with each other since then.

Last night was different, though. It was probably 75 degrees as I plodded along trying to avoid tripping over children’s shoes or our makeshift downspout extenders on my way to the bins. The evening’s warm air enticed bodies from their homes and into their dry outdoor spaces. In this case, it was onto the deck above my head to the west.

Riley heart helps me run

Going about my business, I could hear them talking to each other, talking to their children. But I didn’t look up. I just raised the bin lid and dumped the contents. Then I took the empty box back through the house and into the garage where it would wait to collect the next batch of emptied jars and tins and no-longer-wanted newspapers. Then I went back into the yard and along the house to drag the full bin to the street. Their voices punctuated my activity like a bass line, but I never looked toward them.

Once I’d gotten to the street, I heard my friendly husband, “Oh hello… nice to meet you…” and so on. He’d come out to help with the undesirable task of moving bins that smell of rotting food and dog poop. I busied myself at the curb, picking up squashed limes that had fallen from our tree waiting for the niceties to end. I was trapped. If I went back toward the house, I would be sucked into the conversation. As I fiddled with the limes and bits of plastic along the curb, I felt my limbs become stilted with tension. And then the line I knew was coming (and very much avoiding) slapped my ears.

“So how old are your boys?” she asked. She’d met two of them several weeks ago when their basketball went over the fence and they’d knocked on their door hoping to retrieve it from their backyard.

The ones that are living or the one that has died? I asked in my head, imagining how this conversation would have played out, had I chosen to be a part of it?

“One is 12 and the other is 10,” answered my husband who followed his reply up with the scripted question asking about their boys’ ages.

This friendly banter carried on for another minute or so before I realized I could avoid the side of the house and our neighbors by going through the unlocked front door.

I returned to the garage, found a new garbage bag for the kitchen bin and went back to my Monday evening tasks. As I scurried about, my husband appeared and leaned against the countertop. I looked toward him. “I’m just not ready to have that conversation yet,” I’d said.

“I know, that’s why you have me.” He eyed me with his compassion and reassurance, knowing that talking to our neighbors about our children is not innocent neighborly smalltalk.

“They probably think I’m a terribly rude person, not making eye contact or anything.” I glanced over at the picture of Riley on the counter next to him, beaming with pride before a first grade choir performance.

“It’s okay.”

I don’t know what’s okay. I do know that talking to people is filled with land mines. And for now, avoiding those land mines is the easier path, given that I have to be on this path in the first place.

Grief and baby names

The wind and rain that pelted us with stinging force earlier this week couldn’t stop us from going to our grief group for parents who’ve lost children. It’s pretty much the only place where I feel normal. Or normal enough. 

Brothers

One of the women there talked about her infant who died and wondered if she had another baby if she could give her new baby the same name. Her daughter had been named in honor of another family member and she wanted to give that name an opportunity to have longevity with a healthy baby, if she were ever lucky enough to have another baby. A healthy baby.

Long ago before I had children, I spent a small amount of time researching my family tree. I found old documents from family members and from genealogy web sites. I remember looking at the large families with many births and usually some infant- and childhood deaths. A hundred years ago, it wasn’t uncommon. And having never been a parent, it didn’t really phase me at all. Births and deaths generations before me. All of it was just names and dates written in looping cursive on old documents. I remember noticing that some families had more than one child with the same name. It was confusing until I looked more closely at birth dates and death dates. It became clear that the families who had more than one child with the same name had more than one child with the same name because the first child with that name had died. And so that name was reused. If baby Edith died, then the next baby girl was also named Edith. At the time, having never had children, I didn’t understand the practice. I probably joked that those large families must have run out of names that they liked. An ignorant joke from an ignorant childless woman.

A few years later when I was the mother of three-year-old Riley, I approached the idea of reusing names from a different perspective. It was after his third heart surgery failed and an external heart and lung bypass machine was keeping him alive. I was six months pregnant with his brother. And as I sat at the end of Riley’s hospital bed, I rocked myself, trying to reassure myself that everything would be okay because I had a healthy version of him in my stomach. I imagined he’d be the same in every way, down to the way he said rhinoceros. Russell Norris.

Six Hens cover art, Issue 7

I wrote about that day in the latest issue of Six Hens.

So I could relate to this woman in my grief group, her desire to reuse her dead daughter’s name again if she had the opportunity. Of course she wanted to. Of course, I understand. No, it’s not strange. How beautiful to get to say that child’s name again and again and have it associate with life and not solely with grief and loss and pain.

I don’t know, but I wonder that if you reuse a name, over time the memory gets confused about which child you’re referring to and they blend. And in that blending, I wonder if the dead child gets to live. I doubt the grief subsides in any way and I doubt the pain of loss subsides, but I wonder if perhaps it’s easier to pretend that the living child is both children.

Grief and the Second Anniversary

There are events on two upcoming days to honor and remember our son Riley Norton. Please join us!

October 20: Memorial Plaque Ceremony & Evening Lantern Lighting:

• Memorial Plaque Ceremony:  Join us at the Central Middle School quad area to see a time-lapse video of last year's handprint memorial, check out Riley-inspired art, hear the Central orchestra, share stories, decorate a lantern for the Evening Lantern Lighting (see below), and be there when a memorial plaque is placed near the Central Riley Tree. Did you know that there was a Riley Tree at Central?? Everyone is welcome! The event starts at 3:30 pm.

• Evening Lantern Lighting:  Light a lantern in your front yard in honor of the second anniversary of Riley’s death. Pick up paper lanterns and battery-powered candles at the Memorial Plaque Ceremony at Central Middle School (see above) *or* from 10/17-10/20 on Riley’s front porch. If you are unable to attend the Plaque Ceremony and cannot pick one up from Riley’s front porch, email Riley’s mom and she’ll drop one in the mail for you and your family to decorate at home.

October 30: The Riley Run:

• The Riley Run will be a 5K walk/run community event around San Carlos in memory of our friend and classmate. We will start and end at Brittan Acres Elementary (Tamarack entrance). Everyone is welcome. The event starts at 4 pm. Proceeds from the $25 registration fee will be split between Camp Taylor and The Children’s Heart Foundation. Register by sending an email with the number of participants and t-shirt sizes to: rileyrun1101@gmail.com. Can't join us, but still want this year's t-shirt? Send an email to that same address with your request.

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 CHD Awareness

Lost boy

I'm not really sure what changing my photo on Facebook does to bring awareness.  I'm not sure what posting that same picture on this blog does either other than show off one of my favorite pictures of Riley sitting on my lap, both of us so bursting with love. But February is Congenital Heart Defect Awareness Month, so here I am on the last day of February posting my favorite photo enhanced with red and blue to make you aware of something or other.

And in the spirit of all that awareness, here are some things to be aware of:

* I feel angry a lot of the time. Angry at my husband. Angry at my kids. Angry at the dog. Angry at other parents. Angry at you for having living children. Angry at you for laughing and being able to go to parties or weddings or school events without the underlying panic. Angry that I feel so lost and unsure and insecure. Angry that when I have to pick my son up from a friend's birthday party that I end up crying outside, too scared to face the other parents inside. All of that makes me feel pathetic.

* On some days, I feel like I'm losing my mind. Like coo-coo crazy. I imagine that I could easily tip over some edge and end up in a mental institution with white walls and little cups of pills. There's a lot of chatter in my head about who is good and who understands me and who I can let visit my grief planet and who is just trying to lure me off of this planet to some other planet because it would be easier for them if I didn't live so far away in my crazy coo-coo planet where I really struggle with who I can trust. When I'm lost on my coo-coo planet, it feels like everyone is against me, trying to make me forget Riley. Trying to make me be normal because it would be so much less awkward. Fortunately, not every day is a coo-coo day.

* I don't like leaving the house. When I do, it's often related to grief--couple's therapy, grief group for parents, family grief group, individual grief group. Then there's visiting Riley's memorial in the hills near our house where I walk the dog. I do leave the house for other reasons, like teaching art and Little League games, but that is usually when the anger starts bubbling as I hear the chatter of normal people around me.

* I'm sad all of the time, even if I don't look sad on the outside. I owe that nugget of clarity to C, who was only eight years old when he uttered it.  I give him a lot of credit for summing up grief much better than most adults. Anyway, I feel seriously sad. All. Of. The. Time. Bags of baby spinach at the store make me cry. So does garlic. Pasta. Basil. Olive oil. Corn Flakes. Kids in baseball uniforms. Kids with rolling backpacks. Kids in glasses. Blond boys. Little kids with fat cheeks. Crying babies. 

* I can't understand how I could ever possibly lead a happy life. I sometimes think that this life here on earth is actually Hell. There is just so much suffering. Everywhere. Yet, we don't talk about it most of the time. Put on a happy face, go to work, visit friends. Talk about the ball game and not that serious stuff that keeps us up at night or makes us fantasize about that little bottle of pills we have in the drawer that could help make it all more tolerable. Only I don't know how to do that anymore. I don't know how to fold it up, tuck it in, put it away. So I wear it like soup I spilled down my shirt or like broccoli in my teeth--only no attempt to hide it. I don't know how to nor would I want to.

* I spend a lot of energy trying to figure out how to solve a riddle about why Riley died. If I solve it, it means he won't be dead anymore. So I use a lot of mental energy going through every single detail of his hospitalization, trying to figure out where it started to go wrong. How I could have made a difference, noticed something, asked the right question, or asked the wrong questions in different ways to come to different conclusions about how he should have been treated, with what medicines, with what therapies, with what tests. I will spend the rest of my days frantically rolling over every single thing until I figure it out. I sure hope that one day I'll be clever enough to solve it. That would be pretty amazing.

* Just like you talk to your kids, I talk to Riley. I'm the only one who can hear his replies.

* Riley sends me letters. When he sends them, they just appear in my head. And then I write them down on the wall under his desk in his bedroom.

* I fantasize about crashing my car. I can feel that urge sometimes. I'm just driving along and wonder what would happen if I pulled the steering wheel hard to the right or left. Then I could go be with him, wherever he is. But then I remember I have another son who needs me here on this earth. So here I am, even though that other thing feels really appealing, especially on the days when I feel coo-coo.

* Sleeping is my favorite thing. Riley isn't dead when I'm sleeping.

I sometimes fantasize about how my life would have been different if Riley had been born with a healthy heart. Not only did a congenital heart defect prevent him from having the luxury of growing up, he suffered too many times along the way. Too many tests, too many procedures, too many hospitalizations, too many surgeries. Other times, when I'm bargaining with the universe, I simply wish that he had survived this last surgery. Now that he's been dead 16 months, I wonder what he would look like, how tall he'd be. As an almost 13-year-old boy, he'd no doubt be changing, even though I'm convinced he'd still be sitting on my lap at every chance (see above photo). And since his surgery was supposed to give him more energy, I can't help but wonder if he would be able to go hiking or even just walk the few blocks home from school. 

One in 100 kids is born with a heart defect. Most defects are so minor that they will never need any kind of intervention. For the small percentage of those who do need help, there are simple procedures that can be done in the cardiac catheterization lab. For an even smaller percentage, there are surgical fixes that undo whatever nature messed up in the first place. Then there's even the smaller percentage who may need multiple surgeries and will never be fixed. 

Riley was the love of my life. CHD sucks. And now that you're filled with all of that awareness, let's be honest, shall we? It doesn't change a single fucking thing. 

Grief and being needed

My bedroom is where I work; it’s where I sleep; it’s where I grieve; it’s where I hide. This morning, it is also where I eat my oatmeal.

Chestnut blossoms

When I look past my bowl out the window, there is a wall of green. A few days ago, I noticed a purple bush splashing itself against that bristly green wall. In another few months, the chestnut trees will extend their blossoms like hands offering bouquets of pink petals.

Not long after eating, an email arrived in my inbox. It was a request from another mom, asking if I could help out during an art lesson at my son’s school. My first reaction was No, I don’t want to help out with another art lesson. I am at school enough teaching my own son’s class art. Why would I want to help out another class?

Being a volunteer art teacher for my son’s 4th grade class was not something I wanted to do, not this year, anyway. I had only showed my face at school two or three times when C was in 3rd grade. They were: the day C resumed school after Riley died, for C’s parent/teacher conference, and for his glee concert. That was enough; it was all I could manage in grief's wake. And on the first day of school this year, it was another anxiety-driven morning of me hiding under my hat away from the faces of other parents scrutinizing me (or at least that’s what it felt like). During “Back to School” night, I stood next to the door, so that I could bolt if need be. I have found that having an escape route makes going to these school things slightly less intolerable.

Dali's "Swans Reflecting Elephants"

But I taught 4th grade art when Riley was in 4th grade. It seemed appropriate to teach it again for his brother this year. So that’s what I have volunteered to do. On the day of our first lesson, I felt my body shaking as I puttered around the art room that feels a lot like the inside of a double-wide trailer. As I waited for the other volunteer parents to arrive, I stacked paper and opened plastic buckets with sketch pencils. Cold fingers reached for the school’s copy of Salvador Dali’s “Swans Reflecting Elephants” while nerves moistened the fabric of my blouse.

When the others arrived, I said hello. They said hello back. One mom gave me a long hug; the others just went about their business, asking about set-up and materials needed for the lesson. With the beating of my heart audible in my ears, I watched the clock counting down the last minutes before the children arrived and I would be on. It felt impossible to just pretend everything was normal. I had to say something.

“Hey,” I just wanted to thank you guys for being here,” I said as they covered the tables with bits of plastic cloth. “And I just wanted to put it out there that I’m feeling terrified. Terrified of the kids, terrified of all of you. Since Riley died, I’ve really struggled being around people; all days are hard in their own unique way. I’m doing my best, and please don’t ever take it personal if I’m short or seem angry. I’m just struggling and lost in grief.”

“Thank you for being here, Suzanne. And don’t worry about us,” one mom said. She wandered off to put sketchbooks on desks.

Another mom came over. “Did you realize that this is the same room we taught 4th grade art in last time?” I hadn’t, but she was right. This art room used to be one of the classrooms. It was Riley’s classroom and her son’s classroom when they were in 4th grade together. It felt fitting. A long inhale followed by a long exhale stabilized the off-kilter feelings I had after that realization. How had I not made that connection? It made me feel like Riley was there with me, helping me through. Tears threatened to streak my face at the memory of all the lessons I had taught in his class three years earlier.

Just then the kids walked in and lowered themselves to the floor near Dali’s painting. After introducing myself, I started talking about the artist and our exciting lesson in which they would make their own magical chimeras with oil pastels and watercolor paint.

Friendly 3rd-grade waiter at Scat Cat Cafe

The memories of that first lesson washed over me as I re-read the request to help out with the other class’s art lesson. What I realized--at least in this very specific moment--is that I’m wanted. Even in grief, I have something to offer. So often, I feel like a burden, that my grief is burden, that seeing me is a reminder that children die. And no one wants to think about children dying. It's such a downer. And so it’s easier if I’m not around, if I don’t make eye contact, if I don’t remind you of my dead son or dead children in general. I feel this way with my friends, with my acquaintances, with my family, with my neighbors, with the parents at school. I have felt like eventually everyone will smarten up and realize that this whole grief-thing just isn't going away, that it's a real drag, and that having a relationship with me just isn't worth their time and energy. And then they will go away, just like I knew they would.

Many months ago I had a conversation with the mother of one of C’s friends. She told about the teacher at her son’s preschool who lost a child. The teacher feared that no one wanted her around either. That she was unwelcome, unwanted. The parents reassured her that they did want her around, with her grief, her tears, her unpredictable emotions. I realize that’s how I feel, too. And maybe that’s why I’ve been neglecting my friendships, not responding to texts or invitations to get together. Because even though people are reaching out, I imagine that they can’t really want to spend time with me.

But here is an email requesting my help, even if it's only in this tiny, we-are-short-on-volunteers way. Perhaps, maybe, just maybe, I have something to offer after all.

* I found out later that day that the email had been sent to the entire class list, even though it looked like it had been sent just to me. No harm, no foul, but I was surprised at how it made me step back and analyze my relationships with my community.

Grief and Puerto Vallarta

Showing Riley our view in Mexico

It was the day after Christmas in the Puerto Vallarta airport. My husband and I just spent a week in a sleepy beach town known for its gentle waves that entice surfing newbies onto waxed boards an hour north of there. As we sipped lattes while waiting for our boarding time, a familiar face passed as she headed for the restroom.

No, no, no, I panicked, feeling bemused about how there could be an acquaintance nearly 1,900 miles south and two time zones east of our Northern California home. We ran away from the holidays and the merriment of friends and acquaintances and their living children to a remote part of Mexico where I imagined hearing the words Feliz Navidad would feel less painful than hearing their English equivalent. But in that moment, in the busy terminal, there was the chance of no longer being anonymous. Anxiety replaced the serenity I found in the days spent perched above the sandy shoreline, and peppered with my enthusiastic, yet flawed Spanish.

Why would the sight of an acquaintance cause emotional distress? Because I have no idea what that person will say to me if we catch each other’s eye. While I can guess the topic--my dead 11-year-old son--I suppose it’s the approach, rather than the topic itself, that I most dread. Because I love talking about my son Riley.

Just like you enjoy bragging on your kids, I like bragging about him. I want to tell everyone about his quick plays at second base during his seven years of Little League, about the short stories and poetry he wrote, about his love of maps, of his siblings, his interest in penguins, hot sauce, and his desire to open a restaurant one day. We used to joke it would have been called, “Riley’s Salads and Fried Things” or “Riley’s Tofu and Salads.” His favorite dinner from the time he was just two years old was salad. I have photos of him, fork in hand, to prove it. Caprese sandwiches were his favorite. He loved that he had Italian heritage and enjoyed making his family bruschetta and croutons; he liked eating cloves of raw garlic. I can remember sending a little three-year-old boy into the backyard to pick handfuls of basil for batches of homemade pesto that would be spread on to thick slices of crusty bread.

But as a bereaved mother, I have found conversations with acquaintances to be painful, not because I am asked to speak about my son. But because the weight of the conversation is so often plunked down on my wounded heart with good, but flawed, intention. How are you? or even Sheryl Sandberg’s modified How are you today? sounds innocent enough. But in order to answer, I must access myself for this other person, in what ultimately is a passing moment in their daily routine. To me, it is so much more as I frantically scan myself in an attempt to sum up what it is like to live today without my son for a near-stranger. Ok, fine, or hanging in there are grossly inadequate and false. 

The moment’s complexity is exacerbated because interacting with humans with healthy, living children in general, is--quite frankly--a skill I have yet to master. You see, I'm still largely terrified of all of you. I'm also confused by all of you; your smiles, laughter, or your annoyance at traffic or the wrong latte at Starbucks. To be fair, I imagine your lives are far more complex than what I catch a glimpse of as I blast through my kid's school with my head down. We share the same roads and schools and grocery stores and oxygen supply, yet it feels as if we exist in parallel worlds. Most of the time I want to be invisible; yet, having you ignore me is a different kind of trauma. You're dammed if you do; you're dammed if you don't. I don't make the rules; I'm just stuck in this miserable grief game of trying to figure out how to exist among the living and having no clue about how to do it. 

To avoid that potential airport interaction, I turned around, slunk down in my chair, and watched the three kids opposite me--particularly the boy who looked about the same size at Riley who wore a “Most Valuable Player” t-shirt--eat pizza and chips. And I hid under my hat. I’m sure she didn’t recognize me with my short hair in the first place, anyway. 

Grief and looking

The wall between me and you...

The afternoon was a mishmash of things to do. Thirty seven items returned to the library. Two checks deposited at the bank. Two certified letters retrieved from the post office. Empty shopping bags piled at my feet waited to be weighted with carrots and milk and apples and edamame.

It was just after 3 pm, not long after the last bell launched children from the nearby middle school like a voice through a megaphone. My team usually walks home, but we decided to pick them up before heading to the grocery store so that they didn’t arrive at an empty, locked house. As we turned toward the school, there was a storm of students in every direction. They walked, rode skateboards or bikes, and carried instruments in bulky, oddly-shaped, black plastic cases.

Backpack straps pushed into shoulders and rolled along bumpy sidewalks. Crossing guards blew whistles, waved cars through an intersection, and launched “stop” signs into the air to pause traffic for impatient kids. Cars lined the block near the park -- a popular after-school meeting spot. Kids waited, parents talked, toddlers swung and climbed and slid. Unseasonably cool air reddened cheeks and forced arms into jackets that had hung in closets since the beginning of the year. 

From the passenger seat in my family’s dinged minivan, my eyes searched and my ears listened for the familiar faces and voices of the women I used chat with while I waited for my own crew. In that moment, I knew that somewhere in the last thirteen months, grief had shifted. While much is the same as it was a year ago -- I am not any less sad, for example -- things are also different. The fact that I even was looking beyond the brim of my cap was a change. I could not do that last year. I could not be near school, especially at pick-up. It was as if my fear of other parents and living, healthy children made me afraid of anything and everything. Seeing them doing their normal things was like a paralyzing storm inside of me. My limbs were like downed trees, immobile and broken. My mind was like a clogged gutter, mucky and stuck. 

As we looked for the kids, a longing rose within as I missed the time when I was among the friendly mothers who met their children at the park after school. There are so many things I miss...

After noticing that slight internal shift, that desire to see the community of people I used to move through and among, I considered the errands I had just participated in. They were nothing out of the ordinary. From store to store, my feet carried me. My arms reached for gallons of milk. My mind made the to-do list. But I was not terrified. After Riley died, the world seemed like it was made of make-believe. I felt sidewalks would crumble under my shoes; I feared walkways were obstructed with sheets of glass; walls wobbled; branches angled like arrows aimed at my heart. Moving like a wounded animal, I cowered. I hid behind shelves and scoped safe pathways between myself and the cereal aisle. With arms wrapped around my torso, protecting my weeping organs, I scurried with eyes down. Like a raccoon, I avoided people. Like a deer, I froze as if to be invisible. I imagined people judged me when they saw me, that they believed that it was my fault, that I had killed my son. I imagined they were thinking: Why did you put him in the hospital? Why did you grow him wrong? How could you be out shopping or getting your nails done? 

Hats still cover my forehead. A spasm still jolts my limbs when a familiar figure is spotted. It’s often (but not always) followed by a pirouette that launches me to a different part of the shop. But like glancing around for familiar parents at the park, I realized I look up a little more often in the first place.