Grief and the ADAA

I just had a piece published on the Anxiety and Depression Association of America's website. They have a great library of personal stories that you can filter via disorder (anxiety, panic attacks, bipolar, grief, substance abuse, etc.), and I'm a huge believer in the power of connecting with others through stories. 

Over the years, I have been in individual therapy, and I've spent years in couples therapy. I spent a year in a support group for families who have children with congenital heart defects and three years in a support group for bereaved parents. (Just need to acknowledge how fortunate I am to have health insurance to cover chunks of the costs... access to this stuff should be a right, not a privilege.) And through all of it, I've learned a lot about self-care and supporting others who are struggling. 

It feels good to be reading. It feels good to be running. It feels good to be writing. It feels great to get published. Go forth and read!

Grief and endings

Travel Rileys

In my family, the end of the school year last month signified more than just the end of another year. It was the last year that Riley’s classmates were in middle school together, the school that Riley went to. At the ceremony, many eighth graders carried pictures of Riley across the stage with them (see the assortment of Travel Rileys on the left). Riley was given an honorary certificate, and all three of the student speeches mentioned him. It was interesting to hear about his death from their points of view. It’s only recently that I’ve started to consider how his death affected other people besides myself and my family. Hearing his name in their speeches was a relief; it also left me breathless. Mentally preparing for the day was the topic of my latest piece in Six Hens.

Me, trying to smile at the dance.

Later that night, my husband and I chaperoned the 8th grade dance. I felt like an interloper because parents of 8th graders are not welcome at the 8th grade dance. An exception was made for me, and I was grateful to get to see all of those kids one last time before they head off in different directions to high school this fall. A photographer friend made some almost-life-sized pictures of Riley on foam board to have with all of the props--big hats, and crazy sunglasses, and feather boas--at the photo booth. One of Riley's friends helped coordinate a photo of me with Riley's five closest friends. I imagine in the nearly three years since he spent time with them, those kids have moved through different circles of friends. But they were willing to take a moment out of their night to let me get a photo of myself with these boys--these boys who had been at my house for playdates and sleepovers so often when Riley was alive. These boys who I cherish and who make my heart flutter whenever I see them. I so want to publish that photo here--I even smiled--but they aren't my kids and it's not my place to put their photo online. Instead, see the picture of me with my husband (and fellow chaperone) above. I have a strained smile in that photo, too.

Riley, in his signature hoodie.

There was even a slender, not-too-tall boy at the dance who was wearing a red hoodie with the hood pulled up over his head, the way Riley frequently wore his red MIT hoodie. I tried not to stare. And every time I saw him out of the corner of my eye, I did a double take. I mean, who wears a red hoodie to a middle school dance? But I'm so grateful he did. Between my photo with my five surrogate sons and the boy in the red hoodie, it was almost like my boy was there.

Or it was nothing like him being there, and it was just me clinging to anything that reminds me of him.

Grief and social events

Looking for you in nature

All of the voices inside my head were arguing. They were shouting over each other, angry at all of the merriment around me. Much of it was about who is safe and who isn’t safe and what is allowed and what isn’t allowed now that you’re dead. There are so many rules and it’s so confusing that it's hard to keep track. And sometimes I forget the rules, which prompts the angry voices to shout and finger point and wear steel-toed boots just in case they need to kick someone. In all their rage, venom drips from the tongues, words too vile to include here. That anger was directed at everyone -- the people I live with, the acquaintances I saw at the park on Friday night. When the voices are shouting like that, I need to close my eyes, hoping to see your face, or stare into the distance towards nature.

I laid my head back on the blanket at the park and my vision grabbed a branch of leaves. The school jazz band concert at the park had finished and people were just milling about, chatting and visiting and laughing because it was a lovely night, and well, why not? Facing the sky, I saw a cluster of leaves that looked like a heart, if I wanted it to look like a heart, anyway. I always want everything to look like a heart because I know it means you are nearby, that you made it look like a heart so that I would know you are nearby. That leaf heart swayed with the breeze, thumping with the beat of my broken heart. I’m with you. I see you. I know you’re here, it said.

I had not been to a concert in the park since before you died. Although we did watch your younger brother sing a couple of songs with his glee group not long after you died at the same park, on the same stage. There was no blanket or picnic that time, though, and we huddled near the edge of the crowd ready to depart as soon as you were done. This was different. Very different.

You see, on Friday, I packed a picnic and made sangria. I spread our blanket at the park hours before the concert began. I left camping chairs, too. Then we went with our picnic and our sangria and the guacamole that I made. We brought the dog and it was so exciting with the people and the music and the sun warming our backs. And being a school event, there were lots of familiar faces. Other people had also set up their blankets hours ahead of time, and I had joked (yes, joked) with them that we’d be neighbors. And I waved at them and even went and said hello when I recognized the neighbor’s daughter from your brother’s second grade class.

Then it was all too much. Too much sangria, too much talking, too much of you not being there. How am I supposed to talk and eat guacamole and talk to the people on the adjacent blanket when you are not here, when you’re never going to be here? When they don’t know that you’re dead. I tried to recover by staring at the leaves, but everyone was laughing and eating ice cream when I just kept thinking about how you were dead and I was pretty sure that no one else was thinking about you being dead. I’m always thinking about how you’re dead and how you’ll never, ever, ever not be dead. That’s when the shouting in my head started. It’s so hard when I’m the only one remembering that you’re dead. It’s easier when other people remember and talk about you. Then it’s not all on me because that’s when it’s too much.

So I stared at the heart-shaped cluster of leaves and tried to make everyone think about you, but they kept laughing and someone who was talking with the family on the blanket next to us was talking about an interview that they went on. And someone at the end of our blanket was talking about what kind of camera they have. And they were licking their ice cream like it was the most normal evening in the world. This is great, we should do it again, my sweet, well-meaning husband said at one point.

The sangria made everything cloudy. Maybe I shouldn’t have had the sangria and maybe I should have eaten the caprese sandwich that I had made for myself because you like caprese sandwiches. I should have eaten more than chips and guacamole. And all of a sudden I was so angry at everyone. The neighbors who talked about their interview. My kids at the end of the blanket talking about cameras and ice cream. My good-natured husband who was having a good time and wondered out loud if we should maybe do this again another time when they have the regular concerts in the park. It was just too much. Probably the most socializing that I have done since you died. Too much. I so often feel like an observer in my own world, watching it unfold around me, unable to move into it, be a part of it. It’s like there are two different planes: I exist in one, the rest of the world exists in the other and we're separated by plexiglass.

Finally the shouting in my head was too much. I stood up abruptly and wavered a bit. I picked up all of the camping chairs and a picnic blanket that we weren’t sitting on and took them back to the car across the street. I put them in the trunk and sat in the driver’s seat for a bit, enjoying the warmth of the air toasted by the sun, trying to figure out what to do next. Husband came over with the cooler filled with all of the uneaten veggies and dip and watermelon and the caprese sandwich I should have eaten. I told him I was angry at everyone. Everyone, he asked? Yes, everyone, I said, and told him that I wanted to walk home.

So I did. When I got home, I watered the plants in the garden and then went into your room and laid under your desk and never told anyone I was there. And I stayed with you until everyone was in bed.

Grief and my birthday

un-happy b-day

This time last year, I felt the words coming days before they arrived. I knew they would be well meaning, but insensitive words. I knew they would be flung my way with the click of a mouse or the tap of the send button from a poised pointer finger. The very idea of them coming made my brow furrow, my teeth clench, and my arms fold tightly over my chest. That was all before any of them arrived. 

The internet gives us such easy access to so many "friends." We get email messages and reminders to reach out to and offer sweet nothings. And so we do, because it's so easy. It's reflex... 

And then, as expected, they started appearing. One after the next, those words were posted again and again. As if them being posted repeatedly would make them true. There was the song sent via the FB messaging app. The personal notes. Those two miserable words again and again slapped up without really thinking what it might mean or how it might make me feel. Even though I've tried really hard along this journey to hear what people mean and not necessarily what they say. On this particular day, I could not get past all the happiness I was expected to be feeling. All the celebrating that I was supposed to be doing. All of it just made me feel so angry.

To try and stop it, I posted the following message: 

I can assure you that there is nothing "Happy" about today or any other day. I can assume that all of the well-meaning "friends" wishing such things upon me know nothing about me. Yes, today is the anniversary of the day I was born; it's also the first such anniversary since my 11-year-old son died. I know that most of you still feel the warmth of the sun on your skin, but I'm moving through the world dragging a mountain of sorrow so large that everywhere I go, its shadow pushes the weight of a minivan down on me. No, my house, business, or school wasn't scorched in a California wildfire. Yes, I have other children. Yes, I have health insurance to offset the cost of my weekly therapy appointments. Yes, I have food to eat, clothes to wear, a car to drive, a husband to hug, children to love, a dog to feed, chickens to tend. But I am not happy. I am in grief. I am heartbroken. I am suffering. I move through the days with a gigantic "WHY" and "NO!" screaming through every thought. There is nothing "happy" about any of that. For those of you who'd like for me to move on or get over it or enjoy starting sentences with the words, "At least...," we are not friends. On many days during the past year, I’ve slept all the hours that the sun warmed my house, shaken uncontrollably as stars twinkled through the night, filled prescriptions for sleeping pills, anti-anxiety pills, antidepressants. I’ve wanted to cut long lines into my thighs with sharp objects, lie naked in mud as the sky shook rain from storm clouds, crash my car. I screamed so hard that I burst hundreds of capillaries around my eyes; I chopped down the “Gratitude Tree” in my front yard in the middle of the night. Grief has slurped me into its hungry mouth and will be puncturing me with its fangs for the foreseeable future.

One year later, I feel slightly less angry, but not any less sad. This year, I will avoid reading social media for a few days so that I won't see those words splattered like well-meaning mud on my wall. Like a stalk of wheat in a field of sunflowers, I feel out of place in the world. 

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.

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.

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.

Grief and CHD Awareness

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 love. But 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. 

Grief and Puerto Vallarta

Showing Riley our view in Mexico

It was the day after Christmas in the Puerto Vallarta airport. My husband and I just spent a week in a sleepy beach town known for its gentle waves that entice surfing newbies onto waxed boards an hour north of there. As we sipped lattes while waiting for our boarding time, a familiar face passed as she headed for the restroom.

No, no, no, I panicked, feeling bemused about how there could be an acquaintance nearly 1,900 miles south and two time zones east of our Northern California home. We ran away from the holidays and the merriment of friends and acquaintances and their living children to a remote part of Mexico where I imagined hearing the words Feliz Navidad would feel less painful than hearing their English equivalent. But in that moment, in the busy terminal, there was the chance of no longer being anonymous. Anxiety replaced the serenity I found in the days spent perched above the sandy shoreline, and peppered with my enthusiastic, yet flawed Spanish.

Why would the sight of an acquaintance cause emotional distress? Because I have no idea what that person will say to me if we catch each other’s eye. While I can guess the topic--my dead 11-year-old son--I suppose it’s the approach, rather than the topic itself, that I most dread. Because I love talking about my son Riley.

Just like you enjoy bragging on your kids, I like bragging about him. I want to tell everyone about his quick plays at second base during his seven years of Little League, about the short stories and poetry he wrote, about his love of maps, of his siblings, his interest in penguins, hot sauce, and his desire to open a restaurant one day. We used to joke it would have been called, “Riley’s Salads and Fried Things” or “Riley’s Tofu and Salads.” His favorite dinner from the time he was just two years old was salad. I have photos of him, fork in hand, to prove it. Caprese sandwiches were his favorite. He loved that he had Italian heritage and enjoyed making his family bruschetta and croutons; he liked eating cloves of raw garlic. I can remember sending a little three-year-old boy into the backyard to pick handfuls of basil for batches of homemade pesto that would be spread on to thick slices of crusty bread.

But as a bereaved mother, I have found conversations with acquaintances to be painful, not because I am asked to speak about my son. But because the weight of the conversation is so often plunked down on my wounded heart with good, but flawed, intention. How are you? or even Sheryl Sandberg’s modified How are you today? sounds innocent enough. But in order to answer, I must access myself for this other person, in what ultimately is a passing moment in their daily routine. To me, it is so much more as I frantically scan myself in an attempt to sum up what it is like to live today without my son for a near-stranger. Ok, fine, or hanging in there are grossly inadequate and false. 

The moment’s complexity is exacerbated because interacting with humans with healthy, living children in general, is--quite frankly--a skill I have yet to master. You see, I'm still largely terrified of all of you. I'm also confused by all of you; your smiles, laughter, or your annoyance at traffic or the wrong latte at Starbucks. To be fair, I imagine your lives are far more complex than what I catch a glimpse of as I blast through my kid's school with my head down. We share the same roads and schools and grocery stores and oxygen supply, yet it feels as if we exist in parallel worlds. Most of the time I want to be invisible; yet, having you ignore me is a different kind of trauma. You're dammed if you do; you're dammed if you don't. I don't make the rules; I'm just stuck in this miserable grief game of trying to figure out how to exist among the living and having no clue about how to do it. 

To avoid that potential airport interaction, I turned around, slunk down in my chair, and watched the three kids opposite me--particularly the boy who looked about the same size at Riley who wore a “Most Valuable Player” t-shirt--eat pizza and chips. And I hid under my hat. I’m sure she didn’t recognize me with my short hair in the first place, anyway.