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Tuesday, May 15, 2018

Grief and pointlessness

Riley's jerseys
Gray clouds were smeared across the San Carlos sky like a thick layer of jam on that Saturday morning a few weeks back. It was early, but not too early as I set up my stadium chair at the top of the bleachers. With my cup of decaf, I cornered myself, away from other parents as much as possible because I was solo that morning. C’s dad was out of town; C’s stepmom was out of town; my husband was working. It was just me and I hate mornings when it’s just me at the Little League game. I just don’t know how to fit in. So I put myself in the corner and pretend I’m invisible. Then I scan the opposing team for blond boys with blue eyes and glasses that I can pretend my dead 11-year-old son is there. So that I can cheer for him silently. So that I can pretend that Riley is still playing baseball.

As the innings progressed, the clouds thickened and then colluded to make everyone and everything wet. It started as a few drops, but quickly progressed into a downpour. After a few minutes of rain, the umpires called a rain delay. Most people -- including the kids from both teams -- moved under the awning of the snack shack. I pulled my hood over my head, but stayed put. If I didn’t move, then no one would see me. I felt like a deer, frozen in place in my winter coat with the hood pulled over my head in an attempt to stay dry and invisible. One minute. Five minutes.

The other parents eventually joined the kids under the awning. Why hasn’t the game been called, I wondered. But I couldn’t ask anyone. I don’t know how to talk to the other parents. Do they know I have a son named Riley? I don’t know how to talk about the score or the at-bat or the home run. It’s easier to stay invisible. Ten minutes later and the rain continued.

For the sake of my son’s health, I mustered the courage to approach the team under the awning. I pulled him aside. “Do you want to go home?” I asked. “The game isn’t over yet,” he said. “But you are soaked and it’s cold. I’m worried you’re going to get sick. And it’s just baseball,” I said. “It’s okay. I want to stay.” I said okay and went back to my wet chair in the bleachers. A few minutes later, the drops became less frequent and the umpires said the game could resume as patches of blue punched through the jam layer.

The children went back to their sides of the field, their dugouts. The parents reclaimed their spots on the bleachers.I could hear their voices nearby. They talked about the rain delay. They talked about the score. They scolded their children for not catching the ball when they thought they should have caught the ball. They scolded the teen umpires for calling their child out when they believed that their child was safe. They cheered when a bat made big enough contact with a ball that allowed their child to run to second base without the need for scolding.

It’s all so pointless, I kept thinking. All the cheering and scolding and celebrating and complaining. But then again, what’s the point of anything? It’s all just a way to pass the time, to get through the weekend. An excuse to take pictures to hang on the wall. Something to do as a family. I don’t think it felt pointless when Riley played for all of those seven years. It was a place that he felt normal. A place where a uniform made him look like all of the other kids who had two ventricles and a spleen and their heart on the correct side of their chest pumping blood to its neighboring lungs and then to the far reaches of the body with ease. A place where I let myself believe that he was just like the other kids. And that him growing up was just a given instead of a fear sewn into my DNA that expanded and contracted with every breath.

Tuesday, April 24, 2018

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 it 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.

Monday, April 02, 2018

Grief and making trades

Riley, I'm so sorry. Please forgive me... I would give you my breath, if it meant that you could laugh. I would give you my hands, if it meant that you could play catch with your brother. I would give you my legs, if it meant that you could run to first base. I would give you my heart, if it meant that you could sleep in your bed with your penguins, Freddy and Freddy, Jr. I would give it all to you, if it meant that you could be here, growing up. I would give it all to you, if it meant that you could be here growing up, even knowing that I wouldn't be here to watch it. Even knowing that in that version of reality, we still wouldn't be together. And you would be motherless. It would be worth it, though, because you wouldn't be alone. You'd be surrounded by people who love you. And you would have a working body. And you would get to celebrate your 15th birthday today. 

Sunday, April 01, 2018

Grief and labor

Labor has begun. Only it isn't in my abdomen, the tightening of muscles as contractions mount. No, this time, it's in my heart, my pulse accelerated. My feet twitch and there is a heightened anxiety coming on. Rapid pulse, almost hyperventilating. This labor isn't about giving birth to a baby. This is emotional labor, the intensity of reliving grief anniversaries. Tomorrow is Riley's 15th birthday. And while his birthday is unrelated to his death, it is a distinct marker that he is not getting older. His shadow life is growing up, a teenager with a deepening voice and peach fuzz and hairy legs, while his actual life ended three-and-a-half years ago.

Fifteen years ago tonight, I was 10 days past my due date with my first baby. Contractions would begin around 3 am on April 2, and would continue until 11:20 pm, when my 8 pound, two ounce boy entered the world in a frenzy of activity. Doctors surrounded us, even though I was oblivious to their concerns, about his heartbeat that had decelerated during contractions. About his failed APGAR tests. Tonight, in this heightened emotional state, I have created a flurry of tasks to accomplish. I'm too twitchy to be still.

Riley came into the world, and in a matter of hours, everything stopped being real. The certainty of walls and ceilings and the physics of gravity and the science and technology that gave me a monitored hospital birth were gone. I went from being an exhausted postpartum woman to an exhausted postpartum woman who was told that in order for her infant son to survive, he would need three open-heart surgeries. And he would need the first one in a matter of days.

We agreed to those life-saving surgeries. And then we agreed to some more. And my son still died. And I continue to get donation requests from the hospitals that treated him. They show pictures of children who have survived, who have lived beyond expectation. Those children are smiling and their parents are smiling. And yet, my son has died and they think that I want to give them more money. I write "Return to sender" on the envelope. I also write, "Please remove me from your mailing list because my son, despite his six heart surgeries, has died."

Tomorrow will come, and I will wake and put on my Riley grief bands. I will wear my Riley necklaces. I will wear green, his favorite color. I will hike in the hills near my house and visit his tree stump decorated with his name. I will donate blood to help some other person in need of blood. I will sob and the technician will ask if it hurts and I will say that my arm feels fine. I will make his favorite dinner. And I will hate that he is dead. Just like all of the days. And I will wait for this nightmare to end, the one that makes my son dead while I am alive. I just want to wake up into a world where my son is in 9th grade. Where he is at the table eating Honey Bunches of Oats or garlic toast for breakfast. Where he will get 15, and 21, and 30, and 75, and all of the ordinary years in between.

Thursday, March 08, 2018

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


Thursday, February 08, 2018

Grief and introductions

There is a woman. You might know her. She is tall with dark hair and she was on the trail Tuesday with her two dogs and two friends and their dogs. I know her friends, but I had never met this woman before we introduced ourselves to each other that morning. This woman who I'd never met before has a son. He's in 9th grade now, but he went to Central Middle. Just like Riley. And I can't stop thinking about her. Or about her son.

I keep wondering if her son was in Riley's 6th grade math class before he died. Maybe they sat next to each other. Or maybe he was in his English class. Maybe he sat in front of Riley. Or maybe behind him. Or maybe he was in orchestra with Riley. I wonder if he also played viola for the few weeks of the school year that Riley played viola. Or, perhaps he played cello when they were both in 5th grade and Riley played cello. Did they talk to each other at recess? Did they ever have lunch together? This boy who went to the same school as Riley and who was also a 6th grader when Riley died. They must have known each other. Or at the very least, they must have been acquaintances. The school isn't that big, after all.

From there, I wonder if this boy has a handprint on my garage door from the first anniversary of Riley's death when we made our first handprint memorial and dozens of classmates came to our house and stood in line to participate. Does he have a handprint on Riley's bedroom door from when we made our second handprint memorial? The one with the Tabasco Riley bottle? Did this boy talk about Riley with his mom when he found out that one of his classmates had died? His mom, this woman I'd never met, who happens to have a son who is the same grade that Riley would be in, if he had survived his last heart surgery. The surgery that was supposed to give him a normal lifespan. The surgery that was supposed to let him run and fly on airplanes without oxygen. Our sons must have known each other. Maybe this mother and son came to Riley's memorial after he died. Maybe they ran the Riley Run together and maybe that boy has worn a Riley Run t-shirt to school.

Does this woman know about my son at all? It's possible that her son didn't know Riley and never mentioned him in their home. That idea paralyses me. It's one of the reasons I'm intimidated by this unknown woman and her son, who I have been thinking about since Tuesday morning. She either knows about my son. Or she doesn't know about my son. If she does know about him, she didn't mention him when we introduced ourselves to each other on the trail as the dogs trotted around our feet, their tails wagging.

Then again, I didn't mention Riley to her either, even though we talked long enough to know that she and I have sons who went to the same school at the same time. I wasn't brave enough to ask if her son knew Riley. She wasn't brave enough to say that her son knew Riley. Or didn't know Riley. But if she doesn't know about my son, then Riley's life and death were invisible to this family who also lives in my town, whose son was in the same school and in the same grade as my son who is now dead. Impossible, yet possible. And frightening.

It's only in retrospect, though, that I realize that she may not have known that I was Riley's mom. I feel like I walk through the world with a sign above my head. But how could she know that I am Riley's mom, unless I say that I am Riley's mom? Sometimes it's so hard to say out loud. Not because I don't want to say his name. On the contrary. I want to say his name, but I want to say it, knowing with certainty that his name and his life and his death will be treated with the tenderness it deserves.

If I bump into this tall woman with dark hair on the trail again, perhaps I'll ask her so that I don't have to wonder anymore. But taking a chance is scary because I put my wounded heart in a stranger's hands. Will they treat it with the tenderness it deserves? So much tenderness is needed, all of the time, because my heart is so sore from all of the beating it's done without him these last three years.


Tuesday, February 06, 2018

Grief and Becoming Tapatio: Day 3

Who could have guessed that today was going to be tricky draping fabric day. What I imagined was a pretty straight forward bit of red paint under Tapatio Riley's torso turned out to be rather complex. Something about how the lowlights and highlights blend from one to another and back again so quickly as the fabric folds over on itself. It's not perfect, but once I put the white lettering on top of it, I don't think the imperfections will be as noticeable. The neck tie is similarly complex with folds, shadows, and highlights. Will definitely need to tweak it on the next painting day. I also started on the yellow jacket. I ran out of yellow house paint and resorted to kids' paint. Needless to say, it's just not the same. It is far too watery, and despite going over it several times, my sketch lines are still visible. But at least I can get an idea of how it's coming together. #feelingpleased #HotSauceRiley #RileyForever

Monday, February 05, 2018

Grief and my beating heart

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

Tuesday, January 30, 2018

Grief and Becoming Tapatio: Day 2

Tapatio: Day 2: Riley in unfinished sombrero
As the second anniversary of Riley's death approached in October 2016, I felt the need to take his love of hot sauce and somehow make him part of it. On his bedroom door, I transformed his name into his favorite Green Tabasco. From there, we carted his bedroom door to school and his classmates put their handprints on his door. We then put his bedroom door back in place. So now his Tabasco name and all of those classmates' handprints hang in the upstairs hallway.

On the third anniversary, I transformed Riley's name into a Cholula hot sauce bottle. I replaced the woman on the bottle with Riley's likeness. It was the first time I painted him. It was terrifying because it felt that so much was at stake. It felt like final product would be a direct representation of how much I love him. When it was done, I loved it, although the general consensus was that I had painted a 20-something-year-old version of him. 

And I've started again. This time it's transforming him into a Tapatio hot sauce bottle. This is how he looks on Day 2 -- his 11-year-old likeness in an unfinished sombrero. I wish I'd been documenting the progress of these painting projects from the start. Earlier today, for example, Riley's mouth in this painting was lower. I wasn't sure if I should move it. After talking to his brother and grandmother, I moved it up about a centimeter. And when I stepped back, I couldn't believe how much it looks like him. It was a good decision. I stared into his eyes all afternoon. #HotSauceRiley

Sunday, January 28, 2018

Grief and flipping a switch

My kids; Riley is the green one, obviously.
It’s not like I can flip the switch and stop wanting a baby. I thought it could be that easy; just decide to stop. But it hasn’t been like that at all. Sure, I’ve stopped going to doctor appointments that examine my ovaries and the follicles ripening within. There are no more estrogen pills or progesterone suppositories. I don’t take the CoQ-10; I don’t take the Inositol; I don’t take the Omega-3s; I don’t take the prenatal vitamins. I don’t take the others whose names I’ve forgotten. There are no longer three weekly pill organizers on my dresser packed with my morning, afternoon, and evening pills.

I keep thinking, now I can focus on me. Take the pilates class or learn to play piano. Go on some adventure that I wouldn’t be able to do with a protruding pregnant belly or a new baby. Watch me sleep in on Sunday morning--no one kicking my bladder. Watch me have a glass of wine or three--no reason to stay sober. Listen to me crunch on another cookie--it’s not like eliminating sugar helped my uterus hold any babies.

Sure I like fantasizing about exotic travel and wondering what my husband and I will be doing after our youngest goes off to college in seven years. And I like not being bloated and swollen from the hormones. But it’s not that easy to just stop the yearning. It’s been a complicated dance with grief and desire in the wake of my son dying. This dance must have been nature’s way of ensuring that our species continued thousands of years ago, when most babies likely died. This primal urge to procreate in the face of a child’s death.

Didn’t know we’d been trying to have a baby? Don’t feel left out. It was a carefully kept secret because I couldn’t bear the idea of anyone asking me if it was pregnant yet. I broke my silence about it in the latest issue of Six Hens.

There are still sharps containers in my closet, though, packed with used syringes waiting to be dropped off at the local fire station. There are also the unused syringes, the different sized needles for liquids of different viscosities, depending on whether they were meant for the fat in my belly or the muscle in my ass.

Now that we’re done trying, the desire still lingers quietly. But it’s more like a spiderweb on the on the bookshelf rather than a wasp in my nose. None of it really matters because with a baby or without a baby, Riley is still dead. Every so often, I’ll see him out of the corner of my eye. Like last night, when his brother put on my rectangular glasses. There he was for a second in my camera’s viewfinder. Still just out of reach.