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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. 

Tuesday, February 03, 2015

Grief and clothing

Wearing my dead son's clothing
Riley's clothes neatly folded
Snug tee shirts with baseball logos or stripes that fall just below my bellybutton aren’t really my style. But my son’s shirts somehow fit around my torso and fleshy, upper body girl parts. For three days, I wore them hoping to channel my now dead 6th grader, pleased, yet bewildered that this stack of unused clothing used to cover his body. Everything he wore was baggy. It was only when he stripped down without a thread of modesty at bedtime was I reminded of his thinness and how his bones were held together with so little.

Late Sunday afternoon, I tried to complete an outfit. Sliding the shorts up my legs, they got stuck somewhere slightly above the knee. I was bemused that they didn’t fit. I thought they could somehow manage my grown-up body because we always had pulled the elastic so tight around his slim eleven-year-old frame. Surely there was enough cotton and elastic for me. Once I hiked them up as much as they could go, I stood in front of his closet for a bit wondering if I’d lodged them into my flesh just enough keep them in place. I mentally scanned my closet to imagine what I could wear that was long enough to make it work. But then I realized that I’d have to replace his tee shirt with something else, and wearing his tee shirt was comforting.

After removing the shorts from the mother's body, I folded them neatly and returned them to the son’s closet. From there, I went to his twin-sized bed, opened the comforter, and let it swallow me. Once inside, while wearing his tee shirt, the items on his side table caught my eye. I fastened his watch around my wrist, hung his Rainbow Loom necklace from my neck, and put his glasses on my face. From that perspective, while clutching the Freddies (his beloved penguins) in my arms, I flipped through the pages of the map book he made with his best friend, hoping to find him as I experienced the world from his vantage point