Grief and sibling trauma

As we walked home from the frozen yogurt store last week, my son pointed out some Halloween decor at the end of our street that he liked. There were some scruffy black cats and pumpkins and a scarecrow. My neighbors were offering a gentle version of the holiday that's become anything but gentle. When I asked what he liked about them, he basically said that they weren't upsetting like some of the other stuff. When I asked him what he meant, he had a hard time articulating what he was feeling, but it was obvious to me. So I helped him make sense of his feelings as best as I could without putting words in his mouth.

He is also traumatized by the holiday gore lining our streets.

He's seen postoperative pictures of Riley. And he lived with his brother's scars -- the six-inch scar down his torso and the holes from the stitches and the puncture wounds from drainage tubes. All of those scars were familiar to him because that's all he ever knew of his brother who endured six open-heart surgeries during his lifetime. He is familiar with Steristrips holding skin together over wounds. He is familiar with bandages from blood tests. He spent time with his brother in the hospital when he was a baby. He lived with his brother and the aftermath of those long hospitalizations for all eight years that he was lucky enough to have an older brother. So seeing the undead around town with bloody incisions and gaping wounds and bandages is upsetting. He knows what those are in real life. He doesn't want to be reminded of them on the streets of our town. It reminds him of the trauma in his own family. It reminds him of his dead brother. I'm sure he imagines what his brother looked before he died. And afterwards. Those images probably look like the worst of what Halloween offers.

The bloody clown emerging from the gutter is not on display this October. And I have avoided the house near school, the one that incorporated their son's imaginary death in their decor last year. As a result, I don’t know what decorations, if any, they’ve put out this year. But I’m very much on edge as I move through town this time of year. And apparently, I'm not the only one. Still Standing just published a slightly altered version of my piece from last year. Read it here.

Grief and hair

There he was sitting in a chair in the row in front of me at tonight’s middle school holiday band concert. We didn’t speak, and I didn’t tousle his blond locks, but I was so tempted. This tempting boy and his messy hair. The hair that looks just like Riley’s hair. His 11-year-old floppy mess, something he called his “straight afro.” Tufts rose in different directions, defying gravity and any comb. 

Between songs, I dug my phone from my purse, poised it to take a picture of my 7th grader who was performing. But in reality, I wanted to take a picture of this rounded head with the perfect, messy hair. This lookalike even wore a black sweatshirt with a red hood, just like Riley had. It would have been creepy, I decided, to take a photo and so I denied myself the pleasure of taking this head of hair home with me as a souvenir of tonight’s visit from Riley. I tried not to stare or alarm his father who sat at his side. 

I desperately wanted to tell Riley’s best friend who sat two chairs to my left. I desperately wanted to tell Riley’s stepbrother and stepsister who sat two seats to my right. I desperately wanted to tell Riley’s dad and stepmom who sat behind me. I wanted everyone to share in this moment, to agree that indeed looked just like the back of Riley’s head. Fortunately I found a crumpled tissue hidden at the bottom of my purse to blot away the emotions that came with feeling so close and then instantly reminded that he, my sweet son, is so far away.

Grief and Halloween

As the van rolls down the winding street, it passes a torso climbing from the gutter. The torso is topped with a head, its face painted white with exaggerated clown lips and topped with a shock of red hair. It's holding a red balloon in an outstretched arm. In the adjacent driveway, a skeleton straddles a motorcycle.

As I head to the library, the grocery store, the Post Office, a row of skeletons lines our neighbor’s front yard across the street from the elementary school. As I drive around town, there are bloody severed limbs on porches. There are partially decomposed bodies dangling from trees. There are bloody mummies. There are blood-splattered tools.

It’s gruesome. Horrible. Triggering. I’ve seen enough bloody bandages, exposed bone, pools of blood, and thick black stitches holding together skin. I’ve seen blood-splattered floors. Blood on the machines designed to hold the bloody fluid pouring from tubes leaving my son’s body. I see these things when I close my eyes. When I’m trying to fall asleep at night. When I have another nightmare. And now they are everywhere during the day. When my eyes are open.

When did blood and death and gore become mainstream entertainment gleefully displayed in front yards? I don’t know how to avoid it because it’s everywhere. I hate this time of year. I hate this holiday. For a society that tends to avoid talking about death and dying and grief, we sure love to slap it around for fun at the end of October.

Should I put my son’s ashes on display in the front yard? Should I scatter his collection of lost childhood teeth on our sidewalk? Or maybe put them in a small bowl next to our mailbox? Should I hang his t-shirts on a clothesline across the front porch? I suspect that would be in poor taste. Because actual death is offensive.

In the meantime, if you pass the middle school in my town, you’ll see a yard with a large decorative -- if that’s what you call it -- tombstone at the end of their driveway. In large letters across the front, it says “RIP Max.” Max is their son’s name. Is it fun to imagine that your child has died? Even when you know a family whose son has actually died? When you've been to their house and talked about grief? Should I put a tombstone in my front yard with Riley’s name on it? Would it still be funny?

I miss when Halloween was about pumpkins and kids dressed as firefighters or dinosaurs or cows and bunnies or Mario and Luigi. And the gore was restricted to rentals from the local video store.

Seriously people, WTF?

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 blank spaces

The "H" Word

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

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

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

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

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

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

Husband: “Do we need milk?”

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

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

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

Husband: “Absolutely.”

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

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

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

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

Grief and paint

Today's project: Improved garage door

There is no coincidence that Congenital Heart Defect Awareness Day coincides with Valentine’s Day. It's the day of the year when heart defects make national news and stories about children battling against nature with the help of medical technology come into the spotlight. But in my family—and probably in many families who have a child with a CHD—there really isn’t much to differentiate CDH Awareness Day from the other 364 days a year because there is no such thing as forgetting about it, even for a single day. It’s always there, beating in the background of our lives. With every medicine dose. With every visible (and invisible) scar. With every extra doctor appointment, hospitalization, and blood test.  

Four years ago, I tried to reclaim Valentine’s Day as the one day of the year that I would forget about congenital heart defects and just be in love the way that Hallmark intended. In love with my children, in love with my boyfriend (now husband). I thought I deserved that one day off, even if Riley didn’t get to take a day off from his medicine or have a day where running—or even walking—was easy.

Now that my son has died, I won't even pretend to imagine a day without CHD awareness. He is synonymous with it, and he is everywhere. Even when I'm not looking for him. As I checked in at the lab this morning for some routine tests, I saw his health insurance card and realized that there will never be another day when I present it to a receptionist at any doctor's office. As my blood was being drawn, I thought of all the blood tests he’d endured during his lifetime. When I was at the library, I found out that his card had expired. I paid the overdue fines accumulated when he was in the hospital and felt another loss realizing he won't be checking out any more books. I renewed his library card anyway. As I considered the Valentine's Day card I need to decorate for his brother's school party, I was reminded of CHD Awareness Day, the official day that everyone is supposed to care. The day when people like me want to think that all those news stories and ribbons actually make a difference. 

And as I painted the garage door with the words: "Riley lives in our hearts," I realized that painting things green doesn't actually do anything, aside from making me feel like his spirit is slightly less invisible. But that's probably only to people who are looking for it in the first place...and, of course, to our across-the-street neighbors. 

Grief and the first Christmas

Outside there are lights glowing. They are hung around windows and along fences. They are inside too. Twinkling greens and reds and whites probably hug a tree in your living room. At the same time, there is darkness.

You can’t see it from your comfy couch, from the seat next to the fireplace near the twinkling lights. This darkness is inside my house. It festers inside of me. The flow of circulation, the beat that pushes blood, the exhale that forces the inhale—it is all gone and replaced with darkness so deep that I’m still falling, yet to hit the jagged floor. I give up. I give up already. You have won, Darkness, and I surrender. Anything you want, I give. Take it all. Just give me my son back. He died in October, and I have suffered enough. How do I make my 11-year-old son's death undo itself? How do I make his failed heart operation a success?

And then there were three...

You’ve stolen from a mother’s arms. Stolen love from a younger brother’s heart. Stolen friendship from a boy who catches the ball, who always pulls his friend’s backpack. Stolen a companion from the siblings whose tribe is broken and uneven without their brother, the boy with the faulty heart.

I avoided Halloween as I prepared for my son’s memorial; I avoided Thanksgiving by ignoring it, any nearby merriment drowned out by the reliable ocean smacking the beach near our campervan again and again and again. But not Christmas. It came into my house. The tree’s branches punctured my lungs and made them weep. Darkness drips from those wounds.

This is Christmas, friends. So this is Christmas.