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Sunday, June 19, 2016

Grief and Landscapes

Mindy Stricke's Grief Landscapes
I am honored to share Riley via Mindy Stricke's ‪‎Grief Landscapes‬ project. Each week, she posts a new story and image from her evolving art project about grief and bereavement. Riley's story within her project is entitled Green Tabasco Sauce.

It all started with a questionnaire about Riley and about how I was grieving immediately after his death. There were questions about him and about physical things that make me think of him. I wrote about his beloved stuffed penguins--Freddie and Freddie Jr.--as well as his love of baseball and of the color green and garlic and Tabasco. From there, she photographed an object in extreme close-up. In this case, it was green Tabasco. The finished product, according to her project's web site is meant to evoke "the memory of the person who died, transforming it into an abstract landscape inspired by the participant’s grief story."

A few weeks before Riley was featured on her website, Mindy emailed the image she created to me. She told me that she had played with lot of different angles to photograph the Tabasco bottle and also tried working with the liquid itself. “The process ended up being a mixture of trying to find the most interesting image while channeling the tone of what you wrote. I was going for some of the gray scale you described, and I liked the serendipity of the pinprick of light in the middle of the image, which is Riley to me,” she wrote to me.

I made the mistake of downloading the image on my phone while I was standing outside the bank causing me to burst into tears. I so love the idea of Riley being that center force of light on some kind of buoyant green sphere. In addition to capturing the landscape that I described in the questionnaire, the image also reminds me of a breast which is also fitting. 

When Riley was a baby, all I wanted to do was keep him alive with my body, as if my body alone could save him from the physical defects he was born with. And when he wasn't allowed breast milk for 12 weeks when he was 15 months old because it was too rich for his damaged lymphatic system (injured during his second heart surgery), I was determined to continue using the breast pump so that I could nurse him again when the doctors said his lymph system had healed. Breastfeeding was the thing I latched onto, the thing that I wanted control over. It seemed we had control over very little and I wanted to decide with Riley when to wean him--not the hospital or the doctors or the situation.

Thank you, Mindy Stricke, for allowing me (and Riley) to be a part of your beautiful project honoring grief. 

All of the people and stories in the series have resonated with me in some way. A sentence or a image or a feeling... They are beautiful and powerful and offer a glimpse into real grief. The more we are open to learning about grief and understanding grief, the more we can relate to each other as humans because loss and grief is as much a part of life as birth and love.

Now go see it and read it. It's worth the next five minutes of your day.

Monday, May 23, 2016

Grief and being closed

Open, closed. Open, closed. Open, closed. Like a heart expanding and filling, then contracting and emptying, it’s the way I am moving through the world. For brief periods of time, I open to be in the company of others. And other times--most of the time--I shrink into myself, my tiny, isolated world of words and stacks of photos from when my son was alive. I am open; I am closed. I am open; I am closed.

Right now I am closed.

mother grief
A rainbow lands on Riley's art
As I lie in bed and sense the afternoon sun, a finger of light lands on my index finger like tiny hummingbird feather. I try to feel it. I want it to be warm and weighted like my boy’s hand. I search myself to remember what my son’s hand feels like. I held it thousands of times without much consideration. Why didn’t I pay more attention? I can picture his little boy hand with dimpled knuckles. I can picture his middle-schooler hand with gnawed cuticles, the places where the skin had torn and bled. I can see his rounded fingertips, his nails so short from the constant nibbling. I remember the reddish blue nail beds. I so often look for that color on other children’s hands, but it’s not a color readily available on the playground or in C’s classroom. I cannot see it anywhere. That feather of light taps my skin. Hello Riley, I say to him.

In February, I was open.

I mustered the wherewithal to be open, to reach out and do the simple things that most people do without an internal battle--I got a haircut, I went for a walk, I had coffee with a friend. But then, like a scared turtle, I pulled my head back inside my protective shell to hide again. Maybe it was because April was so very heavy. There were too many things at once to make sense of.

Riley’s 13th birthday appeared on the calendar. My brain cannot seem to reconcile that he is now two different ages at the same time.

My stepson turned 12. How can the boy who is exactly one year and two weeks younger than Riley be older than Riley?

Another mathematical milestone demanded that we recognize that 18 months have been endured without him. 

My stepdaughter was in the ER and then having surgery at the same hospital where Riley exhaled for the last time. I 
even sat for a period of time in the same pre-op room where I last heard my Riley's voice. I love you too, mom, it said.

And so I am closed.

my child died
Riley in Bubblegum Alley
That list of reasons is me trying to apply logic to this illogical reality. I figure if I can point to things, it will explain the latest crying, the way I am avoiding friends. Another school year is winding down without him... Add that to the list. When I examine the cumulation of all of those things, it makes sense. Only it will never really make sense. I vividly recall school beginning, the mandatory first-day-of-school photos, minus one. The calendar is turning without him; the children are growing taller, the notches on the door frame inching up while he will forever be his height on his half birthday just nine days before that surgery that was supposed to fix everything. 

The leaves fall, they grow back and shade the patio, they fall and grow back again. They don’t know how to live another way. I don’t know how to live this way. And so I curl into myself, I crumple, and fall to the ground.

One day I imagine I will open again. I will be in the company of my safe people. In the meantime, I will talk to the light tapping my finger. I will concentrate on giving that light a feeling so that it will be like his hand holding mine, feeling his boy skin on my skin. And then it vanishes. The patch of light leaves me all alone with my broken heart, contracting and emptying.

Friday, April 22, 2016

Grief and Being Better

This is fascinating... I read today that my latest piece in Six Hens implied I was doing "better." You know, 18 months has passed since my son died, so I must be getting over that whole grief-thing. Having gone back and reread it, I understand why some people interpreted it that way. But in reality, I was so low--which really is just my new baseline--and then, during the month that my father in law visited, the manhole beneath me opened and I fell through it and landed even lower down in a pile of rubble. Yes, I managed pick some of the rubble from my wounds. I even found the gumption to try and climb out of that hole. Each time I met up with a friend or went for a walk, it was me inching up that jagged wall.

San Francisco Bay to Breakers
Powerful me, circa 2001
Imaginative readers probably pictured me hoisting myself up, ascending rock-climbing style to the top of a rock face or approaching the finish line of some race with my arms raised above my head in victory, concluding that I was strong and badass and overcoming the whole grief-thing. You know, mind over matter. I can understand why it came across that way because, sure, I did things I hadn't done since my 11-year-old son died, like text friends, go for a couple of walks, and get my hair cut. At the end of the month, though, I wasn't at the top of some rock face or near a finish line with muscles bulging from my 5'6" frame. No, let's say more realistically I was covered in abrasions and blisters and probably back to my dismal baseline. And that was only because I figuratively hollered from the bottom of the hole and my friends came to my aid and figuratively dropped some ropes down to me.

To be fair, I could have landed at the bottom of that hole and lay in the gravel, whimpering quietly. I could have ignored the bits of rope that were dropped down to me. But scratch the ripped version of me climbing triumphantly to a mountain top, shall we? Try this image instead: A whimpering me lay at the bottom of a hole and cautiously called out--not wanting to disturb anyone. Then the ropes that came down somehow magically wrapped themselves around me and my friends with their powerful friend muscles did the work. Yes, I asked for help, but I must give credit where credit is due--they pulled me up.

I read an article yesterday about raising children with invisible challenges or disabilities like ADHD or autism. It said that it's helpful for parents to compare invisible challenges with physical disabilities to help people understand. Here's her example:

I am raising two older boys with physical challenges...I have never - ever - had to justify a single accommodation that they required. Can you imagine a school official saying...."well, you know if your son just tried a little harder, he could get out of that wheelchair and run up the stairs and then we wouldn't need to build a ramp." Are you cringing yet?
Yes! That idea does make me cringe. We'd never think a child in a wheelchair just wasn't trying hard enough to use her legs. That analogy got me thinking about the invisibility of grief which makes it difficult to describe and difficult to understand. Over the last 18 months since Riley died, I have tried to come up with a useful physical analogy to describe my parent grief. My latest is that losing him is like losing my arms. Think about it. Think about what your life--or even just getting through a day--would be like if your arms were amputated. No fingers, no elbows, nothing. And while it is difficult to imagine things we haven't experienced, like that article, I suspect that imagining our bodies minus limbs is somehow easier than imagining our lives minus our living children.

bereaved mom child loss grief
Sibling grief art
Given that I’ve had arms all of my 42 years, life without them would never get easier. I would still be able to walk and move around, but every single thing would always be hard. I’m sure I’d figure out how to eat and brush my teeth, use the computer and the toilet (but not at the same time), but I would never be okay with losing my arms no matter how many years went by and how many beautiful people I met at occupational therapy and support groups who also had lost their arms. I would always, always miss having arms.

Grief is invisible, and it’s hard to understand or empathize with if you aren't enduring it. So this analogy is my (latest) effort to help the non-grieving world (and the not-yet-grieving world because life is a series of losses, is it not?), what losing Riley is like. I will never be okay with losing him and every single thing will always be hard. Always. Because, like amputation, death is permanent. I would always, always miss having arms. I will always, always miss my son. Even if I'm trying to get out and do things that I did before Riley died, I will never be "better." I will only be different.

Sunday, February 28, 2016

Grief and CHD Awareness

bereaved mom
Lost boy
I'm not really sure what changing my photo on Facebook does to bring awareness I'm not sure what posting that same picture on this blog does either other than show off one of my favorite pictures of Riley sitting on my lap, both of us so bursting with loveBut February is Congenital Heart Defect Awareness Month, so here I am on the last day of February posting my favorite photo enhanced with red and blue to make you aware of something or other.

And in the spirit of all that awareness, here are some things to be aware of:

* I feel angry a lot of the time. Angry at my husband. Angry at my kids. Angry at the dog. Angry at other parents. Angry at you for having living children. Angry at you for laughing and being able to go to parties or weddings or school events without the underlying panic. Angry that I feel so lost and unsure and insecure. Angry that when I have to pick my son up from a friend's birthday party that I end up crying outside, too scared to face the other parents inside. All of that makes me feel pathetic.

* On some days, I feel like I'm losing my mind. Like coo-coo crazy. I imagine that I could easily tip over some edge and end up in a mental institution with white walls and little cups of pills. There's a lot of chatter in my head about who is good and who understands me and who I can let visit my grief planet and who is just trying to lure me off of this planet to some other planet because it would be easier for them if I didn't live so far away in my crazy coo-coo planet where I really struggle with who I can trust. When I'm lost on my coo-coo planet, it feels like everyone is against me, trying to make me forget Riley. Trying to make me be normal because it would be so much less awkward. Fortunately, not every day is a coo-coo day.

* I don't like leaving the house. When I do, it's often related to grief--couple's therapy, grief group for parents, family grief group, individual grief group. Then there's visiting Riley's memorial in the hills near our house where I walk the dog. I do leave the house for other reasons, like teaching art and Little League games, but that is usually when the anger starts bubbling as I hear the chatter of normal people around me.

* I'm sad all of the time, even if I don't look sad on the outside. I owe that nugget of clarity to C, who was only eight years old when he uttered it.  I give him a lot of credit for summing up grief much better than most adults. Anyway, I feel seriously sad. All. Of. The. Time. Bags of baby spinach at the store make me cry. So does garlic. Pasta. Basil. Olive oil. Corn Flakes. Kids in baseball uniforms. Kids with rolling backpacks. Kids in glasses. Blond boys. Little kids with fat cheeks. Crying babies

* I can't understand how I could ever possibly lead a happy life. I sometimes think that this life here on earth is actually Hell. There is just so much suffering. Everywhere. Yet, we don't talk about it most of the time. Put on a happy face, go to work, visit friends. Talk about the ball game and not that serious stuff that keeps us up at night or makes us fantasize about that little bottle of pills we have in the drawer that could help make it all more tolerable. Only I don't know how to do that anymore. I don't know how to fold it up, tuck it in, put it away. So I wear it like soup I spilled down my shirt or like broccoli in my teeth--only no attempt to hide it. I don't know how to nor would I want to.

* I spend a lot of energy trying to figure out how to solve a riddle about why Riley died. If I solve it, it means he won't be dead anymore. So I use a lot of mental energy going through every single detail of his hospitalization, trying to figure out where it started to go wrong. How I could have made a difference, noticed something, asked the right question, or asked the wrong questions in different ways to come to different conclusions about how he should have been treated, with what medicines, with what therapies, with what tests. I will spend the rest of my days frantically rolling over every single thing until I figure it out. I sure hope that one day I'll be clever enough to solve it. That would be pretty amazing.

* Just like you talk to your kids, I talk to Riley. I'm the only one who can hear his replies.

* Riley sends me letters. When he sends them, they just appear in my head. And then I write them down on the wall under his desk in his bedroom.

* I fantasize about crashing my car. I can feel that urge sometimes. I'm just driving along and wonder what would happen if I pulled the steering wheel hard to the right or left. Then I could go be with him, wherever he is. But then I remember I have another son who needs me here on this earth. So here I am, even though that other thing feels really appealing, especially on the days when I feel coo-coo.

* Sleeping is my favorite thing. Riley isn't dead when I'm sleeping.

I sometimes fantasize about how my life would have been different if Riley had been born with a healthy heart. Not only did a congenital heart defect prevent him from having the luxury of growing up, he suffered too many times along the way. Too many tests, too many procedures, too many hospitalizations, too many surgeries. Other times, when I'm bargaining with the universe, I simply wish that he had survived this last surgery. Now that he's been dead 16 months, I wonder what he would look like, how tall he'd be. As an almost 13-year-old boy, he'd no doubt be changing, even though I'm convinced he'd still be sitting on my lap at every chance (see above photo). And since his surgery was supposed to give him more energy, I can't help but wonder if he would be able to go hiking or even just walk the few blocks home from school. 

One in 100 kids is born with a heart defect. Most defects are so minor that they will never need any kind of intervention. For the small percentage of those who do need help, there are simple procedures that can be done in the cardiac catheterization lab. For an even smaller percentage, there are surgical fixes that undo whatever nature messed up in the first place. Then there's even the smaller percentage who may need multiple surgeries and will never be fixed. 

Riley was the love of my life. CHD sucks. And now that you're filled with all of that awareness, let's be honest, shall we? It doesn't change a single fucking thing. 

Thursday, February 11, 2016

Grief and being needed

My bedroom is where I work; it’s where I sleep; it’s where I grieve; it’s where I hide. This morning, it is also where I eat my oatmeal.

Chestnut blossoms
When I look past my bowl out the window, there is a wall of green. A few days ago, I noticed a purple bush splashing itself against that bristly green wall. In another few months, the chestnut trees will extend their blossoms like hands offering bouquets of pink petals.

Not long after eating, an email arrived in my inbox. It was a request from another mom, asking if I could help out during an art lesson at my son’s school. My first reaction was No, I don’t want to help out with another art lesson. I am at school enough teaching my own son’s class art. Why would I want to help out another class?

Being a volunteer art teacher for my son’s 4th grade class was not something I wanted to do, not this year, anyway. I had only showed my face at school two or three times when C was in 3rd grade. They were: the day C resumed school after Riley died, for C’s parent/teacher conference, and for his glee concert. That was enough; it was all I could manage in grief's wake. And on the first day of school this year, it was another anxiety-driven morning of me hiding under my hat away from the faces of other parents scrutinizing me (or at least that’s what it felt like). During “Back to School” night, I stood next to the door, so that I could bolt if need be. I have found that having an escape route makes going to these school things slightly less intolerable.

Dali's "Swans Reflecting Elephants"
But I taught 4th grade art when Riley was in 4th grade. It seemed appropriate to teach it again for his brother this year. So that’s what I have volunteered to do. On the day of our first lesson, I felt my body shaking as I puttered around the art room that feels a lot like the inside of a double-wide trailer. As I waited for the other volunteer parents to arrive, I stacked paper and opened plastic buckets with sketch pencils. Cold fingers reached for the school’s copy of Salvador Dali’s “Swans Reflecting Elephants” while nerves moistened the fabric of my blouse.

When the others arrived, I said hello. They said hello back. One mom gave me a long hug; the others just went about their business, asking about set-up and materials needed for the lesson. With the beating of my heart audible in my ears, I watched the clock counting down the last minutes before the children arrived and I would be on. It felt impossible to just pretend everything was normal. I had to say something.

“Hey,” I just wanted to thank you guys for being here,” I said as they covered the tables with bits of plastic cloth. “And I just wanted to put it out there that I’m feeling terrified. Terrified of the kids, terrified of all of you. Since Riley died, I’ve really struggled being around people; all days are hard in their own unique way. I’m doing my best, and please don’t ever take it personal if I’m short or seem angry. I’m just struggling and lost in grief.”

“Thank you for being here, Suzanne. And don’t worry about us,” one mom said. She wandered off to put sketchbooks on desks.

Another mom came over. “Did you realize that this is the same room we taught 4th grade art in last time?” I hadn’t, but she was right. This art room used to be one of the classrooms. It was Riley’s classroom and her son’s classroom when they were in 4th grade together. It felt fitting. A long inhale followed by a long exhale stabilized the off-kilter feelings I had after that realization. How had I not made that connection? It made me feel like Riley was there with me, helping me through. Tears threatened to streak my face at the memory of all the lessons I had taught in his class three years earlier.

Just then the kids walked in and lowered themselves to the floor near Dali’s painting. After introducing myself, I started talking about the artist and our exciting lesson in which they would make their own magical chimeras with oil pastels and watercolor paint.

Friendly 3rd-grade waiter at Scat Cat Cafe
The memories of that first lesson washed over me as I re-read the request to help out with the other class’s art lesson. What I realized--at least in this very specific moment--is that I’m wanted. Even in grief, I have something to offer. So often, I feel like a burden, that my grief is burden, that seeing me is a reminder that children die. And no one wants to think about children dying. It's such a downer. And so it’s easier if I’m not around, if I don’t make eye contact, if I don’t remind you of my dead son or dead children in general. I feel this way with my friends, with my acquaintances, with my family, with my neighbors, with the parents at school. I have felt like eventually everyone will smarten up and realize that this whole grief-thing just isn't going away, that it's a real drag, and that having a relationship with me just isn't worth their time and energy. And then they will go away, just like I knew they would.

Many months ago I had a conversation with the mother of one of C’s friends. She told about the teacher at her son’s preschool who lost a child. The teacher feared that no one wanted her around either. That she was unwelcome, unwanted. The parents reassured her that they did want her around, with her grief, her tears, her unpredictable emotions. I realize that’s how I feel, too. And maybe that’s why I’ve been neglecting my friendships, not responding to texts or invitations to get together. Because even though people are reaching out, I imagine that they can’t really want to spend time with me.

But here is an email requesting my help, even if it's only in this tiny, we-are-short-on-volunteers way. Perhaps, maybe, just maybe, I have something to offer after all.

* I found out later that day that the email had been sent to the entire class list, even though it looked like it had been sent just to me. No harm, no foul, but I was surprised at how it made me step back and analyze my relationships with my community.