Grief and uncertainty

Riley in San Francisco

When Riley was alive, I always thought living with uncertainty would just become part of my wardrobe, like an old pair of jeans that I didn’t like but couldn’t seem to donate to the Goodwill. But it wasn’t like that at all. Riley’s medical problems were like razor blades under my skin. Anytime anything grazed against me, I got cut from the inside. I was always bleeding and the potential for pain was everywhere and constant.

When someone talked about their baby learning to roll over or crawl, in my mind, it was about how my son couldn’t do those things because mobility took too much energy for a baby with half a heart. When someone talked about their child going to preschool, I’d imagine germs fused onto toys layered with the saliva from a thousand toddler mouths. Then I’d stay home and away from others preschool-attending toddlers fearful for my son’s compromised immune system. When parents talked excitedly about the freedom that kindergarten would bring, Riley was recovering from his fourth and fifth surgeries; I was worried that he would never make it to that childhood rite of passage.

When it was time for flu shots, sobs from my boy were a reminder of the countless injections and blood draws that he endured as a routine part of his life. When friends talked of travel, a perimeter would be drawn on the map in my mind around the places we could travel without oxygen; all the others would be labeled forbidden and shaded gray.

Every baby and toddler I saw, I imagined, was perfect in every way and would be given the precious gift of growing up. Of annoying their brothers and sisters, frustrating their parents, and getting in trouble for staying out past curfew. I was jealous of the carefree ways in which their parents pushed them in strollers or held their hands as they walked up and down the grocery store aisles. Every middle schooler I saw roll past on a bike or skateboard may as well have been rolling to a mystical land where children’s bodies grew and were strong and had energy to transport themselves from place to place. Every single thing was crushing and exhausting.

And I know now that Grief is Uncertainty’s meaner, more tortuous cousin. While they seem to travel along a parallel paths, Grief’s razor sharp edges cut deeper, more often, and leaving purple splotches under my skin.

Only instead of being afraid of everything and fearful of what might or might not happen, grief cuts from the places we have been, the books we have read, and in beautifully mundane moments caught on camera, immortalizing the expressions of the face of baby who grows into the toddler who becomes the kindergarten and Little League-playing middle schooler--imagines that line the walls of my house. Each a reminder that he was alive, that he existed, even though I cannot go to a place where his face can rest in my hands and my cheek can sweep across his blond locks. 

And every single moment for the rest of my life, I will be aware of his absence. And I will wonder about the quieting ripple from his life -- all of the people who will never know him, never see his smile, never listen to his jokes, never marvel at his old soul who loved architecture and drawing comics and reading palindromes or The Far Side aloud to anyone who would listen.

Grief and rewinding

Riley's Matchbox cars

I’ve been to the hospital where Riley died exactly three times since then -- which is exactly three times too many. The first time was to visit another heart mom that I met a few days after Riley’s failed final surgery. Her son had also undergone heart surgery in October 2014. He needed to return for subsequent operation a few months later. I ignored the bile in my throat as the double doors slid open because I wanted to be a supportive friend. While I was there, I gave that little boy one of Riley’s treasured Matchbox cars. I remember how much Riley loved them when he was a toddler in the hospital. I had hoped it would offer that other little boy a slight distraction from the IVs and non-stop poking and prodding that goes with being in a cardiac ICU. The second time was to bring my kids to visit the Child Life specialist who had been a gentle coach to them while Riley was dying. They had asked to see her many times, so I finally found the mental ability to look up her contact information, and, well, contact her. While she lulled the kids with her soft and compassionate voice (and cool stash of art supplies), I wilted in the corner of the cafeteria and pretended that I was in some office cafeteria instead of that hospital cafeteria -- it didn’t work. 

This picture was part of the mental vortex

The third time was for my stepdaughter’s emergency appendectomy. And returning to that place with its lighted hallways and antiseptic smells for one of my children created a mental vortex of time and place and memory. The confusion was so beyond my capabilities. I wrote about its connection to my grief in the latest issue of Six Hens. If you've ever had the desire to rewind time, this piece is for you. 

Grief and sleep

During the day, I don't want to be awake.
At night, I don't want to go to sleep.
I'm exhausted all of the time.

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 my birthday

un-happy b-day

This time last year, I felt the words coming days before they arrived. I knew they would be well meaning, but insensitive words. I knew they would be flung my way with the click of a mouse or the tap of the send button from a poised pointer finger. The very idea of them coming made my brow furrow, my teeth clench, and my arms fold tightly over my chest. That was all before any of them arrived. 

The internet gives us such easy access to so many "friends." We get email messages and reminders to reach out to and offer sweet nothings. And so we do, because it's so easy. It's reflex... 

And then, as expected, they started appearing. One after the next, those words were posted again and again. As if them being posted repeatedly would make them true. There was the song sent via the FB messaging app. The personal notes. Those two miserable words again and again slapped up without really thinking what it might mean or how it might make me feel. Even though I've tried really hard along this journey to hear what people mean and not necessarily what they say. On this particular day, I could not get past all the happiness I was expected to be feeling. All the celebrating that I was supposed to be doing. All of it just made me feel so angry.

To try and stop it, I posted the following message: 

I can assure you that there is nothing "Happy" about today or any other day. I can assume that all of the well-meaning "friends" wishing such things upon me know nothing about me. Yes, today is the anniversary of the day I was born; it's also the first such anniversary since my 11-year-old son died. I know that most of you still feel the warmth of the sun on your skin, but I'm moving through the world dragging a mountain of sorrow so large that everywhere I go, its shadow pushes the weight of a minivan down on me. No, my house, business, or school wasn't scorched in a California wildfire. Yes, I have other children. Yes, I have health insurance to offset the cost of my weekly therapy appointments. Yes, I have food to eat, clothes to wear, a car to drive, a husband to hug, children to love, a dog to feed, chickens to tend. But I am not happy. I am in grief. I am heartbroken. I am suffering. I move through the days with a gigantic "WHY" and "NO!" screaming through every thought. There is nothing "happy" about any of that. For those of you who'd like for me to move on or get over it or enjoy starting sentences with the words, "At least...," we are not friends. On many days during the past year, I’ve slept all the hours that the sun warmed my house, shaken uncontrollably as stars twinkled through the night, filled prescriptions for sleeping pills, anti-anxiety pills, antidepressants. I’ve wanted to cut long lines into my thighs with sharp objects, lie naked in mud as the sky shook rain from storm clouds, crash my car. I screamed so hard that I burst hundreds of capillaries around my eyes; I chopped down the “Gratitude Tree” in my front yard in the middle of the night. Grief has slurped me into its hungry mouth and will be puncturing me with its fangs for the foreseeable future.

One year later, I feel slightly less angry, but not any less sad. This year, I will avoid reading social media for a few days so that I won't see those words splattered like well-meaning mud on my wall. Like a stalk of wheat in a field of sunflowers, I feel out of place in the world. 

Grief and procrastination

Love in a cup

It’s been almost two months of procrastinating, of avoiding, of making excuses. Come on, raise your hands if you can relate to the idea of wanting to hide behind, well, anything, instead of doing that thing that needs doing. I can already see some tips of fingers pointing toward the ceiling of those shy hands not wanting to admit that they, too, have put something off. Come on, who’s with me?

What’s your excuse and what have you avoided doing, you ask? Well, I've failed to promote on this very personal soapbox of mine the June issue of Six Hens in which I write about an unfortunate night on my journey through adolescence. I've blamed my procrastination on the fear of hearing judgy voices that might suggest that I deserved to have a near stranger rape the 15-year-old version of myself more than 25 years ago.

But honestly, it has nothing to do with that.

Promoting something here that has nothing to do with grief means I have to admit to myself that I actually had the brain capacity to write about something besides losing my 11-year-old son. Sure, many people reading this know I launched a snazzy lit mag last year in grief’s wake. And managing all of that takes a lot of un-grief-related brain cells. But after writing there and here exclusively about how much having your kid die fucks you up in the most twisted and permanent way, promoting my magazine that includes a story about my ancient history feels all wrong. It feels like I've accidentally cracked open some door to the new normal, a horrible place I’ve read so much about in grief magazines that spew feel-good, grief propaganda...like #7 in this article. 

I associate the idea of new normal with I'm doing better. New normal is a place that I will reject with every inhale I draw for as long as my lungs grant me the power to do so. As if you could wake up one day and realize you're actually not all that heartbroken anymore that your totally awesome kid died. As if there is such a magical place with unicorns and rainbows. If there was such a place, the streets would be lined with Ambien and Zoloft and Ativan. I don’t want anything normal because life without my son will never be normal. Even if you put an enticing adjective like new as a disclaimer in front of it. 

But *why* does it matter that I managed to write about something else? And *why* does it matter if I promote it here on this soapbox?

Perfecting the art of not doing stuff 

I suppose it matters because this soapbox has been Riley's digital shrine. My outpouring of soul and love and loss and heartbreak to him, for him, and about him. And promoting that other thing would be the first time in two years that I have put something here that didn't include him. I don't want another millimeter of time or space or thought or love between us. And anything that doesn't include him feels like stepping on to a path of letting him go. Of hopping on that new normal bus and rolling away. No matter how many times I tell myself that it's not. It's not. It's not. It's not... 

With all that said, without further delay, only two months behind schedule, check out the 5th Issue of Six Hens. It’s rad. Just like Riley's love of Tabasco. And garlic. And maps. And how he would hum when doing his homework. And how when he picked up a cello for the first time, he said, "It's like I've been playing it my whole life." And how, the day after we got baby chicks, he was the first one dressed and ready for school so that he could hold them for a bit before it was time to leave. "I love them," he cooed. So there. 

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 Landscapes

Mindy Stricke's Grief Landscapes

I am honored to share Riley via Mindy Stricke's ‪‎Grief Landscapes‬ project. Each week, she posts a new story and image from her evolving art project about grief and bereavement. Riley's story within her project is entitled Green Tabasco Sauce.

It all started with a questionnaire about Riley and about how I was grieving immediately after his death. There were questions about him and about physical things that make me think of him. I wrote about his beloved stuffed penguins--Freddie and Freddie Jr.--as well as his love of baseball and of the color green and garlic and Tabasco. From there, she photographed an object in extreme close-up. In this case, it was green Tabasco. The finished product, according to her project's web site is meant to evoke "the memory of the person who died, transforming it into an abstract landscape inspired by the participant’s grief story."

A few weeks before Riley was featured on her website, Mindy emailed the image she created to me. She told me that she had played with lot of different angles to photograph the Tabasco bottle and also tried working with the liquid itself. “The process ended up being a mixture of trying to find the most interesting image while channeling the tone of what you wrote. I was going for some of the gray scale you described, and I liked the serendipity of the pinprick of light in the middle of the image, which is Riley to me,” she wrote to me.

I made the mistake of downloading the image on my phone while I was standing outside the bank causing me to burst into tears. I so love the idea of Riley being that center force of light on some kind of buoyant green sphere. In addition to capturing the landscape that I described in the questionnaire, the image also reminds me of a breast which is also fitting. 

When Riley was a baby, all I wanted to do was keep him alive with my body, as if my body alone could save him from the physical defects he was born with. And when he wasn't allowed breast milk for 12 weeks when he was 15 months old because it was too rich for his damaged lymphatic system (injured during his second heart surgery), I was determined to continue using the breast pump so that I could nurse him again when the doctors said his lymph system had healed. Breastfeeding was the thing I latched onto, the thing that I wanted control over. It seemed we had control over very little and I wanted to decide with Riley when to wean him--not the hospital or the doctors or the situation.

Thank you, Mindy Stricke, for allowing me (and Riley) to be a part of your beautiful project honoring grief. 

All of the people and stories in the series have resonated with me in some way. A sentence or a image or a feeling... They are beautiful and powerful and offer a glimpse into real grief. The more we are open to learning about grief and understanding grief, the more we can relate to each other as humans because loss and grief is as much a part of life as birth and love.

Now go see it and read it. It's worth the next five minutes of your day.

Grief and being closed

Open, closed. Open, closed. Open, closed. Like a heart expanding and filling, then contracting and emptying, it’s the way I am moving through the world. For brief periods of time, I open to be in the company of others. And other times--most of the time--I shrink into myself, my tiny, isolated world of words and stacks of photos from when my son was alive. I am open; I am closed. I am open; I am closed.

Right now I am closed.

A rainbow lands on Riley's art

As I lie in bed and sense the afternoon sun, a finger of light lands on my index finger like tiny hummingbird feather. I try to feel it. I want it to be warm and weighted like my boy’s hand. I search myself to remember what my son’s hand feels like. I held it thousands of times without much consideration. Why didn’t I pay more attention? I can picture his little boy hand with dimpled knuckles. I can picture his middle-schooler hand with gnawed cuticles, the places where the skin had torn and bled. I can see his rounded fingertips, his nails so short from the constant nibbling. I remember the reddish blue nail beds. I so often look for that color on other children’s hands, but it’s not a color readily available on the playground or in C’s classroom. I cannot see it anywhere. That feather of light taps my skin. Hello Riley, I say to him.

In February, I was open.

I mustered the wherewithal to be open, to reach out and do the simple things that most people do without an internal battle--I got a haircut, I went for a walk, I had coffee with a friend. But then, like a scared turtle, I pulled my head back inside my protective shell to hide again. Maybe it was because April was so very heavy. There were too many things at once to make sense of.

Riley’s 13th birthday appeared on the calendar. My brain cannot seem to reconcile that he is now two different ages at the same time.

My stepson turned 12. How can the boy who is exactly one year and two weeks younger than Riley be older than Riley?

Another mathematical milestone demanded that we recognize that 18 months have been endured without him. 

My stepdaughter was in the ER and then having surgery at the same hospital where Riley exhaled for the last time. I even sat for a period of time in the same pre-op room where I last heard my Riley's voice. I love you too, mom, it said.

And so I am closed.

Riley in Bubblegum Alley

That list of reasons is me trying to apply logic to this illogical reality. I figure if I can point to things, it will explain the latest crying, the way I am avoiding friends. Another school year is winding down without him... Add that to the list. When I examine the cumulation of all of those things, it makes sense. Only it will never really make sense. I vividly recall school beginning, the mandatory first-day-of-school photos, minus one. The calendar is turning without him; the children are growing taller, the notches on the door frame inching up while he will forever be his height on his half birthday just nine days before that surgery that was supposed to fix everything. 

The leaves fall, they grow back and shade the patio, they fall and grow back again. They don’t know how to live another way. I don’t know how to live this way. And so I curl into myself, I crumple, and fall to the ground.

One day I imagine I will open again. I will be in the company of my safe people. In the meantime, I will talk to the light tapping my finger. I will concentrate on giving that light a feeling so that it will be like his hand holding mine, feeling his boy skin on my skin. And then it vanishes. The patch of light leaves me all alone with my broken heart, contracting and emptying.

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.