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Thursday, November 05, 2015

Grief and scowling

mother grief child died
Tile at Riley's elementary school
My husband was not home for dinner Tuesday night. He was at a school meeting. I sat at the table with three loud children. Enthusiastic children. They were excited about the cheesy garlic bread I made. They wanted to grate mountains of cheese onto their spaghetti. They did not like the look of their apple and beet salad with walnuts. But they laughed. They hummed. Told jokes. Asked for seconds of bread and pasta and cups of water. Said please and thank you. They were just being themselves.

I scowled at them.

I couldn’t wait for mealtime to be done so that I could excuse myself and retreat to my quiet bedroom. I spend a lot of time in my quiet bedroom these days. But just before people were done eating, my nine year old caught my eye in a lull in the hullabaloo and said: “Mom, I want to apologize. I know we’ve been acting a little crazy. And it seems like it’s really upsetting you.”


Despite their version of craziness, they see what’s going on. How sweet of him to notice. At the same time, how sad that he’s noticing. How sad that mom was scowling in the first place. Scowling so much that my son felt the need to apologize. I said thank you for noticing. I told him it wasn’t about them having fun; it was just about me feeling sad about Riley.

He was right, though. I was really upset. The things I used to enjoy about my kids are upsetting now. I get mad at them. I scowl. I don’t like fun. Or laughter or any kind. Mealtime used to be a joyful event. A few months before Riley went into the hospital last year while my husband was out of town, we spent an entire meal only singing to each other. As in, anything that needed to be said was sung, not spoken. “Would you please pass the cheese?” was a melodic request followed by: “Yes. I will pass the cheese, pass the cheese, PASS the cheese.” Think Bohemian Rhapsody. It was the best. 

Laughter is now grounds for disgust. I just don’t know how to let things roll off of me anymore. Or really be in the moment. I’m lost in despair because of what happened to Riley; I’m lost in anguish because I have to live this life without him. Most of the time, I feel like I’m in sensory overload. It’s like the whir of a stove fan overpowering most of what’s going on around me. It makes it hard to hear things. It makes is hard for me to concentrate. Before Riley died, I struggled when there was a lot of sensory input around. When the kids were talking and there was music playing and the oven fan was running, my brain was stuffed with too much to process. Now I feel that way all of the time, even in a quiet room. That is my baseline. I’m always running at capacity. Add three enthusiastic voices singing and laughing and talking over each other and my brain feels like it’s going to burst. Hence, the scowling.

If my brain were a balloon, and grief was water, my brain would look strained by the amount of liquid forced into the allotted space. Grief has exceeded its capacity. Each person or sound is like turning on the tap even though the latex has no room for another drop. Even kids’ laughter. Or maybe I should say especially kids’ laughter. My brain cannot take the input. Despite the talks we’ve had about them feeling sad on the inside even though they look happy on the outside, it’s hard to accept. All that laughter feels like a betrayal of the truth. All that laughter is stretching my brain beyond capacity to tolerate my reality.

There are times that I can manage, that I enjoy being with the kids. I like reading together before bedtime. It doesn't happen very often, but I like it when it does. It's a sit-and-be-quiet time. We are together in a way where I don't feel overloaded. We read Riley's favorite books or talk about whether Riley would like this or that in the stories. I can almost imagine that he's there listening, too. Although, I'm sure he was also there laughing at the table, making jokes, singing along, sprinkling hot pepper flakes on his dinner, then lifting his shirt over his head, spinning it around like a lasso, trying to get everyone to laugh.

I really don't know why I manage one, but not the other. I could speculate, but I think I'll just be grateful that there are times when the scowling gives way to togetherness.

Saturday, October 24, 2015

Grief and Riley's Handprint Memorial

I am truly humbled by all of the people who came over to participate in our memorial. It was healing for me to see that so many people are still thinking about Riley and to be surrounded by so much love on this especially painful anniversary. We made a time-lapse video to capture the transformation of our garage door. Watch it, and let your heart soar.

Sunday, October 18, 2015

Grief and the First Anniversary

The first anniversary of Riley's death is October 20, and we invite you to join us in honoring and remembering him with the following activities...

* October 20: Handprint Memorial
We have turned our garage door into a memorial, and we want your help. Come add your handprint. We will supply the paint and the soapy water for clean up! Bring your whole family. 4-6 pm at Riley's house. Email me for the address.

* October 20: Evening Lantern Lighting
Pick up a lantern and battery-powered candle from 4-6 pm at Riley's house (email me for the address). Decorate your lantern, then place it and battery-powered candle in your front yard at dusk. If you can, share a photo with Riley’s mom by either tagging her (Suzanne Galante) on Facebook, by posting it on Twitter (#CentralTeamRiley) or by emailing her.

* November 1: The Riley Run
Join us for a 5K walk/run around San Carlos in memory of Riley. Everyone is welcome. Proceeds from the $25 registration fee will be split between Camp Taylor and The Children’s Heart Foundation. The deadline to get a t-shirt has passed, but you can still register by sending an email to: rileyrun1101 at gmail dot com

* Ongoing: Riley geocache token
When you pick up your lantern, you'll also get a wooden Riley token for your next geocaching adventure. Or take photos of it at cool places like AT&T Park or Burton Park and share them via Twitter (#CentralTeamRiley). Another option is to just keep it somewhere special and think of Riley often.

With gratitude, Riley’s family

Monday, September 21, 2015

Grief and quiet, powerful moments

mother grief
Cover art for the second issue of Six Hens.
Like glossy carpet, photographs lie all over my son’s bedroom floor. They’re spread out, poured from tipped-over boxes. They’re stacked in piles. They stand in a line at the back of his desk. It’s the same boy over and over again. There he is posed in his Astros uniform. There he is holding hands with a friend outside the Exploratorium. There he is, face pressed against his brother’s as they concentrate on something just outside the frame. There he is perched proudly in front of the 1000-piece puzzle he completed the summer before starting second grade. There we are, tongues out, eyes wide attempting our silliest expressions on his 10th birthday.

There are 11 ½ years of regular moments. There are 11 ½ years of milestones. On the morning of his 6th heart operation last October, when he sat next to his brother and two step siblings in the waiting room, how could I have known the last picture of them would be captured? As doctors escorted him through the double doors, his voice fell into my ears for the last time. “I love you, too,” it said.

“I don’t know what to do without you,” I say to his wardrobe, to the assorted stuffed animals, his map of the United States dotted with pushpins. “I don’t know who I am anymore. I don’t know how to be me, without you.” Waiting for a reply, I hear a skateboard roll past our house, a child shouting to a friend, laughter. I’m reminded of a day when our neighbor’s dad gave Riley a tandem ride down our hill on his skateboard. Riley beamed. That was probably one of the few moments where he felt really alive, invincible. Normal. You see, his single ventricle heart prevented him from having energy to master physical feats like skateboarding. Or the wherewithal to endure the falls that go with them.

As I stared toward the laughter, lost in memory, my husband found me sitting on Riley’s sleeping bag with a stuffed penguin in my arms. “He’s everywhere and he is nowhere,” I say. “I don’t understand. I can’t understand.” I bury my face in his cotton-filled sleeping companion, searching for my son’s scent.

“I’m not sure it will ever make sense,” he said softly, looking into this closet of neatly folded t-shirts. We scanned the room, me wanting to inhale what he had exhaled. There were puzzles and LEGO and books and posters on the walls. “These are all of his things; he’s touched all of these things.” It was only a couple of weeks earlier that I spent the weekend in his bed wearing his t-shirts, his watch, his Rainbow Loom necklace. “And look, he forgot to put his socks away,” he added, trying unsuccessfully to tether a smile to my grief.

After my husband wandered back into the house, I found myself curious about the woman in all of those photos. She’s smiling, laughing, joyful. I studied her long blonde hair. It cascades down the sides of her neck onto her chest. Through the years of photos, she’s the same. Even when a hat covers her hairline or glasses outline her eyes, her long strands follow her through the years. The baby grows into the toddler, who becomes the Little Leaguer and viola player; the long locks are consistent. Like a mother’s love, I think. Through long hospitalizations, holidays, separation and divorce, it’s there. Through new love and step-family and pets, it’s there. As his heart slowed last October and squeezed for the last time, it was there.

Four months later, it was still there. I pulled my fingers through it. It was coarse and dry from years of highlights and lowlights. I dragged a clump of neglected strands across my cheek. Frayed ends scratched dry skin. Pulling at brittle strands, pieces broke. I kissed the penguin and tucked him into the sleeping bag before heading into bathroom light.

“Who are you?” I demanded of the reflection. I stared at the her; she stared back, vertical crease between her eyes, eyebrows pinched, unrelenting furrowed brows clenched. I ran my fingers over the pinched skin trying to smooth it out, relax the angry, heartbroken muscles. There were several inches of dark growth near the scalp. “You were so happy, weren’t you? Smiling and laughing. You ignorant, stupid woman.”

Through the basket under the sink I rummaged until my hand grasped my husband’s beard trimmer. Inserting the plug into the outlet, I stared into her unblinking hazel eyes. “You don’t know anything about me.” My thumb pushed power into the clippers and vibrations ran through my arm. “Fuck you.” Blades skimmed across the ends of my hair sending clippings into the air like dust. I couldn’t go any further. For a long time, I stared her down, beaming hatred toward her, the clippers buzzing, threatening to destroy that long-haired stranger.

After a few minutes, I silenced the clippers, too chicken to shave it off. Instead, I retrieved the scissors from the kitchen knife block. Clasping a fistful of hair, I chopped through one side, then the other. Then, pulling clumps away from my scalp, I chopped those too. Again and again, I cut and sawed and chopped until any visual sign of that happy woman was gone.

Like a mound of severed limbs, a heap of hair lay on the countertop. I stared into her eyes again. Without hair to hide behind, the dark rings from exhaustion and grief stood prominently above her cheekbones. While I didn’t recognize the short-haired stranger either, she was scraggly, ugly, and looked how I felt on the inside.

Certainly my son’s death was a defining moment, the tectonic plates crashing, destroying the landscape of my life. But what has surprised me is how many defining moments have rippled in its wake. As I’m learning from talking to other grief-stricken mothers at a weekend retreat, the deaths themselves knocked our lives off course, but their aftermaths continue to mold and shape us just the same. Those smaller defining moments are equally powerful, even though they are quieter, less public, internal shifts.

Every time I see the short-haired woman, it’s a visual reminder that I am different, physically altered as well as mentally and emotionally altered by my son’s death. And I still cringe whenever someone comments on how cute my new haircut is.

The second issue of Six Hens is now live. Go read and feel something.

Suzanne Galante, Editor in Chief

Wednesday, September 09, 2015

Grief and Back to School

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

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

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

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

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

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

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

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