AddThis script

Monday, December 21, 2015

Grief and A Leap of Faith

my child died CHD
Gorgeous art from Issue 3 of Six Hens
* Note to reader: This is the "Letter from the Editor" from my literary magazine Six Hens. Issue 3 launched today. Feeling enormously proud. Read, feel something, share... *

A nurse tapped on the door before turning the handle. “I thought you’d want these,” she said as she approached me. She offered two Polaroid pictures of my newborn. Curiosity or instinct elevated my hand to receive them. “He’s beautiful. Do you have a name?” I shook my head then parted my lips to thank her. My words were reflex rather than gratitude.

She switched to nurse mode, asking when I’d last urinated or if I’d passed any clots larger than my fist and whether I wanted to breastfeed. When I said yes to that last question, she said she’d arrange for a lactation nurse to explain the basics. I didn’t protest, although I couldn’t understand how I could learn to breastfeed without a baby. Then her cool fingertips pressed my doughy abdomen. After her exam, I felt her access me in a different way. “You need to name him,” she said softly but firmly. That wasn’t any of her business. It wasn’t part of her job. But she must have heard about his x-ray, the one that showed his heart on the opposite side of his chest. She must have seen paperwork declaring “probable heart defect.” She must have known it was serious. She must have known that naming a newborn—even one with scrambled up insides—was more important than the possibility of him dying nameless.

Chalky morning light muted pinks and blues on the walls of the small room in the recovery ward of that Northern California hospital. It was before rush hour on April 3, 2003. Blankets and pillows swallowed me, but I was cold for the first time in months. My eight-pound-two-ounce furnace was in the nursery somewhere else on the floor. My fingers gripped the edges of the Polaroid pictures, which were face down on my lap. I flipped them. They were almost identical, showing a round-headed baby, eyes closed, head turned left with a breathing tube disappearing into his mouth. One image showed his torso where the umbilical cord stump had been removed. His skin was orange-red from iodine, which could’ve been mistaken for blood. I had read that a newborn’s stump normally fell off several days after birth, revealing a bellybutton. Our son, who we had yet to name, needed his cut away to use as a place to insert an IV.

I thought back to the moments after he slipped from my warm body into the cool, room-temperature air. As a hushed urgency of doctors escalated to my right, I noticed the baby was silent. “Ken? Is he breathing?” I asked my husband. He was, Ken said with his arms crossed tightly over his chest, “but something is wrong.”

A few minutes later, a nurse asked if I wanted to hold him briefly before they took him to the nursery for more tests. “I don’t think so,” I said unconvinced. After twenty hours of labor, my body was relieved to be free of him.

“You have to hold him,” Ken said. I reluctantly agreed. With my baby wrapped like a burrito in a blue, green, and white hospital blanket, the nurse set him on my chest so that I could see the creature that had been rolling around in my tummy for months. He wasn’t the most beautiful thing I had ever seen. His skin looked ashen, his face was contorted, and he was stretching his neck; it looked liked he was in pain. It felt like everyone waited for me to ooh and aah over him. But I didn’t. I just looked at him, at his twisted expression. The nurse said they had to take him. I didn’t want him any longer anyway. I felt faulty because I was not instantly in love.

When my husband returned to the recovery room, he explained that a neonatal transport team was on their way to ferry our baby to UCSF more than fifty miles south. I gave him the pictures. “You can go see him,” Ken said as he studied the photos, “if you’re ready.” When I didn’t respond, he lowered himself into the plasticky armchair to my left and took my hand. He looked thin, and dark patches underlined his pale blue eyes. It had been nearly nine hours since an initial newborn assessment forked us into separateness; I refused to accept that things were going horribly wrong. Surely he was just exhausted from being born; I was exhausted from giving birth. A few minutes later the nurse returned and parked a wheelchair next to the bed. I hesitated. Did I want to see my baby? A good mother would want to. Surely I was a good mother. Like a sack of rice, I slouched as Ken rolled me along. In a hallway carved of fluorescent light, it felt like we moved forward and backward simultaneously.

When we arrived in the nursery, I don’t remember seeing any other babies or cribs. Instead, the small space was crowded by neonatal transport experts. They prepared a special plastic box—a high-tech mobile incubator that would be placed in their ambulance. Plexiglass and a wall of EMTs separated me from my son. Through uniformed bodies, I could see bits of baby. An hand here, a knee there; so tiny, barely human under the web of intervention. He was enclosed, packaged, foreign. I wish I’d kissed his moist skin, inhaled his mossy smell when I had had the chance. The team assured us that he was stable and would be in the best of hands on his fifty-six-mile ride to UCSF, one of the top pediatric cardiac centers in the country. And then they were gone.

Kneeling in front of me as if he were about to propose, Ken’s warm hands reached for mine and pulled them to his damp face. Holding my gaze for a moment before putting his head in my lap, there was nothing to say. My fingers pushed through his trim brown hair and convulsions began. Unfamiliar sounds built in my diaphragm and erupted from my mouth, penetrating an otherwise quiet corridor. Nurses walked around us. No one asked us to move. We were left to mourn that moment. His birth. The unknown.

Eventually Ken pushed himself from the speckled linoleum and assessed my droopy posture. He brushed matted hair from my eyes. In whispers, we decided he should drive to UCSF, the hospital on a hill in our old neighborhood near Golden Gate Park, instead of waiting three more hours until I was allowed to be discharged. With that, he wheeled me back to our tiny room and helped me into bed.

“We have to name him before I leave,” he said with arms folded. I looked at his body, his denim pants and T-shirt, his waning hairline. Only in a twisted world would I debate pros and cons of naming my baby.

I hugged myself, squeezing my arms, rubbing open palms along my sides and over my vacant, shrunken stomach. “Okay,” I said after a long silence, still unsure. “Where’s the paperwork?”

He grabbed the form from the end table and clicked the end of a pen. The lines were long and blank. Without knowing his diagnosis or prognosis, I thought of the nurse, her prodding, and assumed a named child would be harder to forget than an unnamed child. He picked up the Polaroid photos and put them next to me. I studied the baby’s face and hoped it would tell me what it should be called. The blankets vibrated as my muscles shook. The stack of thin layers over my limbs didn’t seem to make a difference. After sinking down further, my eyes closed.

“We both like Riley,” he said, doing his best to keep me engaged.

My eyelids rose and focused on him. He nibbled at his cuticles as he waited for my response.

“I still like Mackenzie for a middle name,” I whispered eventually. “It means son of Ken. Then everyone knows you’re his dad. No one ever wonders who the mom is.” With that, he pushed pen to paper and our son’s name appeared. I sunk lower, clutching a pillow. He kissed my forehead, gathered his things and left.

It was incomprehensible. Riley was gone. I imagined miles of highway separating us, when nine hours earlier we had been connected. His flesh inside mine, held safe with breath and heartbeat. Nothing felt safe anymore. Ken drove home for a shower and fresh clothing before braving that unfamiliar San Francisco hospital, where he would start learning about our imperfect son, a baby I grew so horribly wrong.

It was just me in that little room. I had labored. I had delivered. But I was alone.

I didn’t know it at the time, but naming Riley despite terrifying uncertainty was a leap of faith. It was me desperately wanting him to be okay, hoping it was all a misunderstanding, a mix-up. It was also the first of many moments that define this mother’s love during my son’s truncated, eleven-year lifetime. He would have turned twelve on April 2.

Check out more powerful writing in the third issue of Six Hens!

Suzanne Galante, Editor in Chief

Tuesday, December 01, 2015

Grief and looking

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

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

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

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

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

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

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

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.

Friday, August 14, 2015

Grief and laughter

my kid died
Riley was awesome at being goofy, as seen here.
The other day, I sat on the sofa in my yard with a half-eaten salad on my lap. The sun was shining and the broad leaves on the giant Sycamore were protecting me from the 80-degree heat. My husband sat by my side with his own half-eaten salad. We talked about C’s 9th birthday party that was held at our house a few days earlier. A few leftover Mylar balloons still swayed in the background; the bucket with uneaten fruit from our bobbing-for-apples game waited to be emptied; vases with drooping sunflowers and lilies reminded me of how I spruced up the garden for that day. If everything looked pretty, then I would get through it, I remembered thinking. I could show up in a way I couldn't with my husband's birthday. I had to.

We had swept and scrubbed and placed flowers. An extra strong Moscow Mule softened the anxiety I felt around talking to parents as they dropped off their kids. Orchestrating a water balloon toss and a game of “bobbing for apples” for twelve kids kept my grieving mind occupied during the party. And I did get through it, even if the crying jags pushed me off balance every so often. Riley wasn’t there. Being the younger brother, C has never had a birthday without him. Now he’ll never have another birthday with him. None of us will. In all the fanfare, I forgot to have the kids decorate a flag in honor of Riley.

As my husband and I ate our salads in the shade in our backyard, in addition to talking about C’s birthday, we also talked about wanting to paint the house, how the deck needs to be refinished, and in which order those things should happen. It was all very ordinary chatting about this and that. And then my husband said something amusing. It was a line I’ve heard before and one I will hear countless times during our years together. I cannot even remember what it was that he said. But laughter ripped through me. Heaving, can’t-breathe-laughter. My body’s response was far grander than necessary. It shook me, jolted me, and then slapped me across the face--it was that throbbing part of grief. The heat of regret bubbled up. There was anger. And annoyance, too, for allowing some other emotion to penetrate the wall I’ve built.

I used my napkin to absorb the regret that leaked from my eyes. After that, my husband held me for a while. I know people want me to laugh and feel better, but I don’t want to laugh or feel better. Not yet anyway. Maybe I will someday--at least that’s what people keep telling me. For now, my soot-colored world is where I’m meant to be. And the throbbing, like the pulsing of the umbilical cord that once connected us, is my constant companion as I navigate this world without him.

Monday, August 03, 2015

Grief and throbbing

My child died.
Riley flags in our yard
Imagine petting your dog through rubber gloves. Imagine kissing through a sheet of plastic wrap. Imagine showering wrapped in a rain poncho. Imagine trying to smell freshly baked cookies with nose clip. Imagine listening to your lover while wearing earplugs. Most of the day, I’m wrapped in this numbness. My world is a spectrum of gray; colors covered in soot. Numbness fills the space between each throb when grief grabs me and strangles me for a bit. It throws me down and for that period, I feel everything. All the numbness disappears while I’m overpowered by a current, a rawness, the force of every ounce of grief bound together as a bus that rushes me at 110 miles an hour. It flattens me, leaving me breathless and weak and feeling even more broken. When it passes, numbness returns for another moment or few hours or days, depending.

This is grief nine months in. It’s like throbbing--the punch and the space in between. My 11 1/2-year-old son has been dead longer than it took to grow his beautiful, imperfect body.

* Want to make a Riley flag for our garden? Use any bit of plain fabric, any color you like about the size of a piece of paper. Decorate it with anything you like on one side only--Sharpies, glue, sequins, other crafty thing you can think of--bearing in mind that it will live outside. So if you glue stuff on or use markers, try to use ones that are designed to withstand a washing machine (or Mother Nature). Please leave about an inch at the top undecorated, as I'll need to sew the top so that we can thread it onto our line. When your flag is ready, shoot me a message and I'll give you my address. You can mail it to me or leave it on my porch if you happen to live nearby.

Wednesday, July 29, 2015

Grief and Maddy Middleton

My son is dead.
Riley's hair that I carry with me
It’s Madyson Middleton’s mother, Laura Jordan, that I cannot stop thinking about. Her missing daughter, who was found dead Monday night in a Santa Cruz dumpster, makes her like me. Her child has died, our children are dead. And while her daughter’s horrific murder is not the same as my son’s failed heart surgery, their deaths link us. We are mothers of dead children.

Trying to remember what I was doing two days after Riley died, I keep wondering what she is doing right now. Sleeping, not sleeping. Vomiting, overeating. Crying, shaking, shouting, chopping down trees. Is she in bed? Who is checking in on her? Bringing her food? Tissues? Something to drink? What kind of medicine has she been prescribed. Is she taking it? If she is, does she feel guilty about it? Will she bring her daughter home in a cardboard box? I hope she gets to have a clipping of Maddy’s hair. Will she still carry it with her nine months later as I do with Riley’s?

Overwhelmed with the spotlight and media attention, I want to shield her, hold her. Her journey will not launch her into isolation as mine did. She has been launched into the media spotlight. There will be reporters and questions. There will be news vans and live updates outside her bedroom window.

I remember feeling like a rat inside a wooden maze. It felt as though everyone was looking down at me from the maze walls, scrutinizing my every move. No! Why did she turn left? Didn’t she know she was supposed to turn right? I felt as if they knew what I should be doing as I fumbled along in grief. Does she feel that way? Or it is just too soon to feel anything aside disbelief? I can’t help but wonder if the process of grief is some kind of riddle that each of us has to decipher.

I'm so sorry Laura. This is the worst kind of horrible. Maddy should be playing on her scooter. Riley should be playing catch with his brother. I'm grieving for both of them and for both of us. Life will never be the same.

Monday, June 22, 2015

Grief and Defining Moments

defining moments
Introducing Six Hens
During the last few months, grief has edged ever-so-slightly from the center to make space for creativity. It is with great honor that I introduce Six Hens, a literary magazine featuring true stories about life's defining moments. They are moments that color events in our lives, breathe life into projects, make us shift, shape, and remember. They define us; they redefine us. They are bitter, sweet, and flavor the spectrum in-between. They create the outlines that we step into. They provide the lily pads from which we leap. This magazine is me leaping...Welcome to Six Hens.

Suzanne Galante, Editor in Chief

Tuesday, June 09, 2015

Grief and blank spaces

grief and birthdays
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.

Monday, May 11, 2015

Grief and lies

When my kids were small, we would walk hand in hand to school. I’d be sandwiched between two blond boys with a pair of velcroed shoes on my left and laced ones to my right. Riley would try to roll the skin between my thumb and first finger. We’d sing catchy tunes from the radio and skip and talk about what playdates we’d have and when and what we’d have for dinner that night and whether grandma was going to be watching them because I had class.

grief bereaved mom
Notes from classmates
I’d walk them through their elementary school’s corridors right up to their classrooms and watch as they unpacked their lunch boxes and hung their backpacks on their hooks on the walls decorated with butterflies and ladybugs. They’d send me off with tight hugs and professions of love. Sweet, sweet boys. “You’re meeting me at the flagpole after school, right?” The answer was always yes. Then they’d scurry into their rooms and find their assigned seats.

I was often at school. Over the years, I’ve been a volunteer art teacher and a volunteer gardening teacher. Every Wednesday for two years, I read in C’s classroom. I talked to 4th graders about the books they’d been reading, helped with classroom parties, made grand trays of caprese salad for the end-of-year picnics and attended music concerts and plays and dined in the Scat Cat Cafe hosted in Riley’s 2nd grade classroom.

Since October, I’ve been to the elementary school three times--once on the morning when C resumed 3rd grade after Riley died, once for his parent-teacher conference, and once for his glee concert last Friday. For the concert, I stood in the rear corner and sobbed. Between songs, I stepped through the open door to get fresh tissues and breathe the outside air deeply, trying to settle myself. I avoided other parents and bolted for home after the applause faded and C said goodbye to his buddies.

C takes himself to and from school on his scooter these days. But per his request, I’ve recently started meeting him halfway down our street. At 2:30, I wander toward school and he races toward home and we meet somewhere in the middle, usually just around the bend from the house with the metal dragon sculpture in the front garden. C is usually the only person I talk to on those journeys, just the way I like it.

But last week, my neighbor was tending some shrub or other as we passed. I flinched as he looked toward us. “How’s it going?” he asked. “Hanging in there,” I lied, after a slight pause. I stole that line from my other neighbor who recently lost her husband. It’s a non-answer, really, and it's probably the first time I've answered that question without using the words terrible, heartbroken, or not so good. Those responses seem to stump people, and I didn't have the energy to engage with him about my reality. The one where I want to do nothing but sleep because when I'm sleeping, I don't know that Riley is dead. And let's be honest, most people don't actually want to know how I'm doing.

How I long to go back in time and walk those boys to school again. The uncertainty of Riley's health was always the undercurrent in my daily life, but that uncertainty was far more palatable than this reality.

Monday, April 20, 2015

Grief and fighting

The soles of my hiking shoes crunched along the composite as I sauntered down the long, empty trail taking me from here to there. Inching along with the fog hovering over my shoulder like an enthusiastic editor, I willed someone to come out from behind the tangled poison oak and manzanita to mess with me.

Green worry stone
Nothing scares me. Not that I was anywhere scary. Pulgas Ridge is a county open space preserve sandwiched between sleepy San Carlos and Redwood City. Years ago, it was home to a tuberculosis sanitarium and skeletal remains in the shape of cement stairs are interspersed among the trails and fields of oak. I’ve been hiking there on my own since Riley was a newborn strapped to my torso in a baby carrier 12 years ago. The scariest encounters would include a fistful of teenaged boys wandering into the dusky acres to get stoned and an older man donning a hat and sunglasses that set of my dog’s attack instinct. And neither of those were actually scary. Still, I couldn’t help but hope for a fight. I pictured this faceless stranger and readied my response: “Yeah, you want to mess with me today? You might want to rethink that because I’ll claw you open.”

Today, you see, is the 6-month anniversary of my son Riley’s death. I rubbed a green glass stone between my fingers as my legs took me along the trail. I couldn’t feel them and was amazed that I managed to stay vertical. They are numb so much of the time. I have to think about my arms, too, and will them to grasp and shift and lift and brush. The only part of my body that I feel is my heart. It beats with mind-boggling regularity. The simplicity of it--unconscious, reliable, unfailing--yet something his heart could do no more. When I’m still, I feel the muscle thumping against my ribcage. Then I remember those hours as his heart slowed, slowed…… slowed…………. slowed…………………... until it squeezed for the last time. Afterward, I crawled onto the bed beside him and held his still body. Then I left him there, alone, and got into my car and went home without him.

The muscular golden dog trotted up beside us as we walked the hill to where I visit the stone memorial I made for Riley. It looked like the Rhodesian Ridgeback with the same name I met a few weeks after Riley died. How fitting, I thought to see that dog again on this sad anniversary. I hadn’t seen him since November when I couldn’t bear to speak that horrible truth to his owner.

“Haven’t seen you in a while, Riley,” I said to the dog as he followed my girl Pepper as she leaped after her tennis ball. Then coming down the hill was the dog’s owner and a friend. As they approached me, I said, “Is that Riley?” just wanting to make sure it was the dog I thought it was. The man said yes. “Do you spell it like this?” I asked as I pointed to the black grief band I wear with RILEY embroidered in kelly green. He said yes. “Is that your dog’s name, too?” his friend asked. “No, it was my son’s name. He died six months ago today,” I said.

Their faces twisted with compassion as the emotion dripped down my cheeks. “That’s got to be the most difficult kind of hard,” the friend said. “Are you getting some support from a counselor?” I am. “I have a lot of support; I’m really lucky that way. But I can’t say it makes it any easier,” I said. “I can’t imagine it does,” he replied. We talked about the dogs for a bit and I pet this furry Riley before continuing up the hill.

I am so profoundly sad and heartbroken and it is still so very impossible for me to believe that he has died. With two houses, it just seems like he must be at his dad’s house. And then there are all the days when C is with me and Riley is not there and that idea that he is just at his dad's house becomes even more impossible.

I miss the simple things...his crazy soft hair, the way he bites his cuticles, how he couldn't hear me ask him a question when he was reading, the way he said "mom." I miss the way he held his Freddies--his beloved penguins--one in each arm at bedtime.

Impossible for people who have not lost a child to understand what it feels like, imagine a gaping, constant loss. Every time you see one of your children--every time you eat together or go somewhere in the car, someone is missing. Every time you talk to one or your children or think of them. Every time you wash their laundry or pick up one of their books or shoes, or every time you imagine tomorrow or the weekend or summer vacation--delete them from each of those images. When you grocery shop, you don't need to buy their favorite cereal. When you go to a child's baseball game, or school event, or see one of their friends, it is a reminder that they are gone from this world. Every night when you kiss them at bedtime, they are not there. It's like losing Riley hundreds of times each day.

Imagine never having another photo of your child. There will be no more photos of Riley. There will be no more pictures drawn. The few precious times I’ve happened upon a scrap piece of paper that he doodled on, it instantly became a sacred item placed on the desk in his bedroom because there will be no more doodles.

No, there were no leery individuals on my hike at Pulgas Ridge. There were no fights for me to funnel my anger into. It was just me and my own internal battle, a wild spectrum with weapons crafted of rage and sadness, loss and disbelief, pain and numbness. It would have been his 12th birthday on April 2.

Wednesday, March 25, 2015

Grief and another death

Like getting ready for a date, I drew black lines over my eyelids, dabbed mascara to darken my fair lashes, and pressed a few curls into my hair. I slipped my feet into black heels. Gray slacks encircled my legs and a black blouse hung around my torso. As I assessed this dressed-up version of myself in the full-length mirror near my closet, I didn’t recognize my reflection. “You can do this,” I said to the woman starting back at me. She didn’t reply, only looked at me with her sad eyes and sad face and solemn outfit.

Heart made by his daughter
The act of getting dressed and styled had nothing to do with a date. Our family was headed to the memorial for our neighbor—a husband and father with two young children. I didn’t really know him, but we saw him every day as he walked his daughter down the hill to school with his young son and family dog in tow. Holding hands, looking at leaves in the gutter, and admiring stones and bugs, they were a part of our morning routine as we looped back from dropping our big kids at middle school. That simple act of walking with his children will be the image I hold of him; it’s a lovely image. He had a gentle, loving presence and a gentle, patient voice.

“I wish I’d taken some Vitamin A,” I’d said to my husband as my heels clinked along the sidewalk, referring to the anti-anxiety medicine I’d been prescribed before Riley went into the hospital. “Do you have it with you?” he’d asked in reply as he extended his arm for me to clutch. I didn’t, and my body was rigid with the emotions of my son’s death and of walking into his memorial only a few months ago. Another untimely death. More grieving children and families.

Where Riley, father, and family cat live now
This Death seems to have paid no attention to years. This Death has given little consideration for the young people left behind who grow up without their brother or their father. This Death couldn’t care less for the bereaved mother (vilomah) or the bereaved wife (widow). This Death is a thief. This Death has stolen time. This Death has snatched the yet-to-be celebrated milestones because someone will be forever missing. This Death has dropped us into a forest thick with lost and sorrow. Death—you greedy, unfeeling charlatan.

These two unrelated deaths—an 11-year-old boy and a father just three doors down—seem related. I like imagining this father’s energy mingling with my son’s energy, looking after him. This sweet man who walked his children to school every single day.

As I sat in a row of chairs, my eyes were locked on the images of this man’s life. There were pictures of him as a toddler, the preschooler (like his son), the elementary schooler (like his daughter), his teenaged years, college years, the young couple in love, their engagement party, wedding, with his newborn’s sleeping body pressed to his skin. Friends and acquaintances sat by my side, held my hand, asked about how I’m doing and how I’m feeling about Riley’s approaching birthday. Their questions tried to bridge the gap between the two realities we now live in. “Today isn’t about me,” I replied. But with barely a pause, I talked about Riley anyway, cried, and cried some more for this now misshapen family.

It’s true that the day wasn’t about me. It was about us—all of us: her, her husband, her children, the rest of her family, me, Riley, my other children, the rest of Riley’s family, and the community of other people who also grieve these losses. And even though the day wasn’t about me specifically, it would have been impossible to turn the volume down on my own grief. So perhaps when I told my reflection that morning: “You can do this,” I meant that I’d get through the memorial by being as authentic to the experience as I could. I didn’t pretend to be anything other than what I was—a grieving mother who is also grieving for her neighbors.

Friday, March 13, 2015

Grief and Opening Day

I’d forgotten about all the socializing and cheering that happens at Little League games. I am not up for socializing or cheering. I hid under the brim of my cap at the edge of the field or against the wall of the nearby school when C played this past week. He had two games since Opening Day, and Opening Day was last Saturday. All that playing put me in the middle of more social situations than I’ve been in since Riley died in October.
Life goes on

Over there, across the blacktop is a mom whose taken C after school several times since Riley died. She’s talking to a woman that I recognize, but am not sure I’ve ever officially met. She scoops her long hair with her arm and it cascades down her back. There is smiling and laughing and small talk; there is clapping and an ease at just being in the moment talking with a friend. I’m largely scared of the non-grieving population, as I’m sure they are largely scared of me. Sunglasses are adjusted, hair is twisted and tied at the back of her head. The sun bakes our mid-March bodies, forces layers to be peeled away and pale skin soaks the up the heat and threatens to become pink.

Their interaction seems effortless, easy, relaxed, normal. I wonder about the baseball season three years earlier when Riley played on this field. At the time, the kids seemed so big, grown-up, skilled for eight- and nine-year-old players. They whacked the ball into the outfield. They sprinted to first base. They dove to catch balls that seemed almost out of reach. I notice the kids on the field doing those things now. When did C become a big kid?

When Riley played on this field those three years ago, I made a connection with another player’s mom. She marveled at my son who’d endured five heart operations, yet was very much alive. Very much a part of the game. Very normal looking despite his mixed-up insides and uncertain future. That season she joined me in celebrating Riley’s accomplishments. To an outsider, my enthusiasm and praise may have seemed beyond what was called for, beyond what a child with normal abilities may have received for hitting, catching, running, and just swinging his bat. Every at-bat was praised—every walk, every foul ball, every strike out. For trying, for getting back in there again and again, even though it was hard for him, the boy with the faulty heart and not enough oxygen to nourish his cells.

Riley didn’t run fast—it was more of a shuffle—so if he shuffled to first base after getting walked, it was a big deal. If he snagged the ball from the air, it was a big deal. As he trotted to the grassy spot where the ball smacked the earth after missing his glove, I cheered. Him showing up again and again for every game and every season—he played for seven years—was a big deal. He was out there trying, even though each of those things involved an effort so far beyond normal effort. He loved the game.

I always feared the day he would decide not to play another season. When the games became more about winning and less about having fun. When he felt his struggle on the field was hurting his team and decided to use his energy reserves for something more stationary like art or reading. He never made that choice. And I’ll never know if he would have signed up for this season. I like to think he would have. In the meantime, I go to C’s games and wonder about the cheering and the life-goes-on normalcy around me. Like so many things in life, I will always feel sad about all of the things that did not happen, the life experiences un-experienced, the milestones met and marked by others, the seasons coming and going, the beginnings and the endings.

C had been invited to throw the first pitch on Opening Day for the league Riley would have played for. Some of Riley’s friends showed up and helped C warm up his pitching arm. C told me: “I feel sad all of the time, even though I don’t always look sad on the outside.” I was amazed at his eloquence; that's definitely how I feel too. That morning on the mound, he looked proud and happy and sad and nervous. That’s probably how I looked too, at least when I wasn't hiding under my hat.

Tuesday, February 24, 2015

Grief and judgments

Grieving my son
Riley memorial at Pulgas Ridge
A few days before heading to Hawaii with three girlfriends to grieve and reminisce about when our children were babies, I went to the nail salon to have a manicure and a pedicure. I’m still not sure why I went to the nail salon in my town given that I’m currently afraid of the general, not-grieving population, but that is where I went—probably out of habit. Cautiously inching along the shop’s long hallway, I surveyed the other patrons looking for familiar faces from under the brim of my cap. There were none and I felt slight relief that I could be anonymous as I indulged in something so trivial as trimmed cuticles and brown nail polish.

Not long into my pedicure, a woman was seated to my right. Her young daughter was seated to my left. They chatted about their day and the brother at school and I decided to use that moment as an opportunity to say out loud that my son had died. I could practice saying it to this stranger. I could ask her about her kids and we’d talk about our children, so normal.

“How old is your son?” I asked during a lull in their conversation, wondering if he knew Riley or about him. “And does he go to Brittan Acres?” She said he was about the same age as C, but goes to a different school. Like the moment before a falling glass meets the ground, I knew our conversation was about to burst into tiny shards of shattered thoughts. I set it up and waited for the impact, the mess of my reality. “Do you have other children?” she asked. “I used to have a 6th grader,” I muttered. That was all I managed. Once I said it out loud, I didn’t know how to say anything else. Honestly, I wasn’t even sure she heard me because I said it in what felt like a whisper, forcing those broken words from my lips. And the words felt so jumbled as they fell, that I wasn’t sure—even if they were audible—that they weren’t nonsensical.

I wanted to try speaking my truth in a way that made it sound normal, given that it is anything but normal. She was my guinea pig. She was silent after I spoke, we both were. Our conversation was broken, jagged, a messy beast to slowly back away from. The fact that was I was even getting my nails done felt so wildly inappropriate. How could I possibly be getting my nails done given that my son had died? How could I possibly do something so frivolous given that something so profound had happened? I felt ashamed.

A few minutes into the silence, the nail technician moved me to a different seat so that my toes could dry under the tiny foot fans. Once they were completely dry, I thanked her for taking care of my feet. Then I slumped out of the shop avoiding eye contact with the mom who I envisioned was on the verge of shouting at me: “Your son just died and you’re getting your nails done?!”

That awkward encounter played in my head over and over. A couple of weeks later I got an email from that stranger. She said in her message that she had recounted our interaction to a friend and that her friend replied: “You met Riley’s mom,” and pointed her to this blog. She told me she wished she’d given me a hug that day. Her message included a virtual hug. “No big words,” she wrote, “just know a total stranger has your heart and mind in her prayers.” Her note was filled with compassion. And she didn’t judge me. Quite the contrary. She wrote: “AND I thought how WONDERFUL it is that you are letting other people take care of YOU. Whatever it is I would imagine each part of YOU needs nourishment—your heart, your mind, your feet, your soul!!!”

I want to believe that the chance encounter that led to that email from a stranger was the universe’s way of saying it’s okay to take care of myself. It’s okay to leave the house. It’s okay to have my nails done, go for a hike, drink a latte in a coffee shop. Maybe no one is judging me even though it feels that way. I suspect my biggest obstacle, the biggest critic, the most judgmental person approving and disapproving of how I spend my time as I try to learn how to move among humans who haven’t lost children—sadly, is me.

Wednesday, February 11, 2015

Grief and paint

My son died
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.