Grief and the first Christmas

Outside there are lights glowing. They are hung around windows and along fences. They are inside too. Twinkling greens and reds and whites probably hug a tree in your living room. At the same time, there is darkness.

You can’t see it from your comfy couch, from the seat next to the fireplace near the twinkling lights. This darkness is inside my house. It festers inside of me. The flow of circulation, the beat that pushes blood, the exhale that forces the inhale—it is all gone and replaced with darkness so deep that I’m still falling, yet to hit the jagged floor. I give up. I give up already. You have won, Darkness, and I surrender. Anything you want, I give. Take it all. Just give me my son back. He died in October, and I have suffered enough. How do I make my 11-year-old son's death undo itself? How do I make his failed heart operation a success?

And then there were three...

You’ve stolen from a mother’s arms. Stolen love from a younger brother’s heart. Stolen friendship from a boy who catches the ball, who always pulls his friend’s backpack. Stolen a companion from the siblings whose tribe is broken and uneven without their brother, the boy with the faulty heart.

I avoided Halloween as I prepared for my son’s memorial; I avoided Thanksgiving by ignoring it, any nearby merriment drowned out by the reliable ocean smacking the beach near our campervan again and again and again. But not Christmas. It came into my house. The tree’s branches punctured my lungs and made them weep. Darkness drips from those wounds.

This is Christmas, friends. So this is Christmas.

Grief and ranting

Glossy magazines glorify tragedy. Everything is summed up in 800 words and the tragedy becomes a feel-good piece. It’s spun so that a positive message is felt by the person experiencing the loss as well as person reading about the loss. It's fake. A handful of well-meaning people, who have probably read those glossy articles or seen glossy TV, have told me to snap out of it, get out of bed, out of the house, to be grateful for what I had/have, and face the world. That Riley’s goodness supersedes his death. Society wants me "to get over it," to have "closure," to be grateful that I have other kids. Not every story has a moral. And no matter how we spin it, Riley was better alive than he is dead.*

C only knew life as Riley's younger brother. He knew who he was because Riley reflected who he was back at him. For years, his sentences ended with: “Right Riley?” And I only know parenthood as Riley's mom, as the guardian of the boy with the crap heart. And now that he's died, I'm lost and I feel like a cliché. I'm broken, fragile, and shattered. I have lost any sense of self-esteem, I cower away from people and situations, am forgetful, stutter at times, am easily startled, and am entirely exhausted and drained. I start sentences with the phrase, “My therapist says…” For the rest of my life, I will try to figure out how to live without him, and I'm being gentle on myself and helping around the house and with the kids when I feel up to it. I suppose doing anything beyond the comfort of bed is progress from where I was a handful of weeks ago.

It sounds bitchy and horrible, but my other children are not Riley, and I don't feel grateful for much of anything right now (that doesn't mean I don't have things to be grateful for...my list is very long, but it's hard to have perspective on that even though I know there is much to be grateful for). I always told Riley, "Don't ever let your heart be an excuse for not trying your best." And he has recently told me, "Don't ever let my death be an excuse to lie around in bed all day." I hear him. I hear all of you. I'll eventually get there.

Also, Riley is with me in spirit. He is part of my essence, just as I was part of his. He is everywhere. And yet he is nowhere. And having him in spirit is not the same as having his skin to caress, his hand pressed into mine, his hair to bury my face into. They are different. Your attempts to convince me otherwise are your attempts to make sense of something that doesn’t make sense and will never make sense, no matter how many times you throw God’s will into the mix. And if my brand of mourning happens from the comfort of my bed with my laptop warming my knees, I'm okay with that.

My son last Christmas, not hiding his scars

So yes, I have four children and I don’t have four children. I can hug three of them. I can tuck three of them into bed. I can hear three children’s voices. One of them I can hug only in my mind, I can listen to only in my thoughts, and his empty bed will never we warmed by his beautiful and imperfect body. I assure you, gentle reader, that they are not interchangeable.

For 11 1/2 years, I rehearsed Riley's death. I imagined it his whole life. And as horrible as I imagined it, imagining it is nothing like living it. The permanence of it is crushing. With each of his other hospitalizations, it was horrible and horrific, but it ended. He eventually stabilized and came home. There is no coming home. There is no going back. This is forever and all I want is for it to unwind itself. But here I am instead. I will lie in bed and write and cry. I will take C to the dentist and the kids to school. I will be mad and scream into the carpet until I burst hundreds of capillaries around my eyes. I will also laugh and feel lightened when Riley sends letters into my head as he did the other day. It's so fucked up and unbelievable and unbelievably true. Yes, my husband and my other people need me. My therapist says that life is a marathon and not a sprint. And I get to fumble around in grief on my own timeline, even if it makes you uncomfortable, even if you think I'm doing it wrong.

My spectrum of feelings on any given day—or hour, or minute, for that matter—is broad, nonsensical and nonlinear. I will take the time to grieve in my own way, feeling all of my feelings that crush and motivate, that paralyze and swell, that punish and rage, that open the lines to communicate and clamp them down again, and I will not apologize for any of it. Rant complete...

*To be clear, Riley alive and suffering is not better than him being dead and free from medical horrors. When I say, "Riley was better alive," I’m talking about Riley living, away from the hospital, going to school, spending time with friends and family.

Grief and other people

Before Riley went into the hospital in October, he had to have his teeth checked by a dentist. This extra dental appointment happened before each of his surgeries. When he was in the soft chair, reclined for optimal viewing and the dentist asked how he was doing, Riley gave with a matter-of-fact reply: “I’m having heart surgery this week.” The dentist and the technician exchanged glances before cobbling together a response. “Heart surgery? Oh, wow.” (To be fair, what do you say to an 11 year old who just told you that he’s going to have heart surgery in a couple of days?). That was followed by, “Well, let’s take a look…”

Since Riley and his brother have always been together--at every dentist appointment and pretty much everywhere else since C was born--the dentist asked about C. “Oh, he’s at school and probably due for a cleaning as well,” I said, “but we’ll take care of that on the other side of the hospital. Hopefully November or December.”

I used to have four children

Anyone who knows Riley knows that he died after complications from heart surgery. That is one of the reasons that I’ve avoided going anywhere. I’m afraid of seeing people who know Riley, who know me, who know my family. I’m afraid of seeing my sorrow reflected back at me. I’m afraid of seeing pity or relief that it was my kid and not theirs. When they ask, “How are you doing?” Do I say fine? Do I say terrible? I’m pretty sure no one actually wants to know I’ve lost of bunch of weight. No one wants to know that I’m still taking the anti-anxiety medicine and the sleeping medicine. No one wants to know that as soon as I fall onto the couch or heave myself into bed, my leg shakes uncontrollably. No one wants to hear how dividing Riley’s death has been. Before Riley died, I had four children. Now I have one dead child and one living child and my husband has two living children. No one wants to hear that spending time with the other children does not make me grateful that I have the other children. It simply illuminates that there are three instead of four. I suspect they do want to hear if I’m thinking about having another baby.

In the handful of times that I’ve gone to the store with my husband and the clerks have asked How are you?, I know they don’t really want to know. What I’ve wanted to say is this: “Not very well actually, my son just died.” I say hello instead. Hello seems less rude, although I'm not sure why saying that my son has died seems rude. When they say Have a nice day or Happy Holidays, I just lower my eyes. Social niceties are too loaded. For the children’s band concert at school, I wore a cap low on my face and avoided eye contact with hundreds of families. I peaked glances at the students, hoping to see Riley’s friends. I’ve missed them. I sobbed while they played and made the decision that I want to go the high school graduation ceremony for Riley’s class six years from now.

But C’s dentist appointment was different. The dentist falls into a small, special list of people who know Riley, but who do not know that he has died. This small list of people who will ask about him and I will have to tell them. I will have to speak this horrible truth. I even talked about it with C on the way to the appointment. “They will probably ask about Riley,” I said. “What would you like to happen when they ask?” I wanted C to have a say without leading him to want one thing or another. “What do you mean?” he asked. “Well, do you want to answer or would you like me to answer when they ask about Riley?” He thought for a minute and decided: “I want you to answer.”

The receptionist said hello when we entered the office. We sat down and I pulled C onto my lap. I felt less exposed with his weight pressing into my legs. I grabbed a magazine featuring several different kinds of pie and asked him to name each kind pictured. As he guessed at apple and pumpkin and chocolate, she leaned over the desk and casually planted the question I’ve dreaded. My eyes swung over to her face and my lips opened. “Riley died,” I said, holding her gaze for a moment. “Oh,” she said. I looked back at the magazine cover and squeezed C. A minute later, she leaned over the desk again. “How was your Thanksgiving?” And just like that Riley’s death had come and gone for her. For me, it was real in a new way.

Grief and forgetting

Bedroom on wheels

On Thanksgiving I was in a tiny camper van with my husband and our dog. The interior was blue and white with a little kitchen and a mini shower stall. There was nothing to distinguish that specific Thursday from any other day that week. 

Since my son died six weeks ago, I’ve spent most of my time horizontal in the safety of my blankets cushioned by piles of wet tissues. In order to get me out bed and out of the house, my husband rented what he called our “mobile bedroom.” The safety of bed could travel with us. There would be sunsets out our tiny bedroom windows near the beach, hikes in the hills or in the redwood forests—only if we felt up to it—and many rented movies watched while reclining on pillows. I even think we skipped Thanksgiving dinner because we’d eaten a late lunch. It didn’t matter. The point was that I was out of the house, out of our bedroom, with the safely of a bed and my familiar duvet.

We picked up our bedroom on wheels in Monterey. We camped that first night in a campground in the hills, then headed south to the trees of Big Sur, before spending the next three days in Morro Bay. On some nights the beach was just steps away from our parking spot. We strolled along the sand, watched the sky fade from blue to being streaked with orange and pink. We warmed up leftovers from the parade of dinners that our community delivered to our door in the previous weeks. We drank Moscow Mules and alternated eating chocolate-covered things and piles of radishes. Come to think of it, I'm the only one who ate radishes. “They’re like spicy apples without seeds,” I’d declared. My husband stuck with chocolaty things.

Each day, a black wooden picture frame displayed a different wedding photo, us smiling, any underlying cares invisible. It was my husband’s romantic gesture. I carefully examined each photo and marveled at the joy on my face.

I don’t know that woman anymore.

Unimaginable joy before death

Still, despite feeling so consumed by grief and disconnected from that person, there were hours when I didn’t cry. My swollen eyelids shrank to normal size. The pile of tissues subsided. And I joked about this and that—mainly the comically small shower, how our mini camper was basically a sailboat on wheels (my husband loves sailing), and how the only place the dog’s bed would fit was in front of the slim door to the bathroom, forcing her to maneuver her 70-pound frame out of the way countless times each evening as we went into and out of the bathroom.

On our last evening, when we finished our last movie from iTunes and I quit the application for the first time that week, I was confronted with the desktop picture on my Mac—a picture of my two boys. Riley was five; C was two. They wore matching sweaters and each held Christmas tree ornaments. I hadn’t seen a picture of my boys all week. My house is filled with photos; and since Riley died we have piles of photos out, new framed pictures hanging. He is everywhere at home and was nowhere in that camper. Until that moment.

Forgetting him and my intense sorrow for those days felt like betrayal. How did I allow myself to laugh? How did I allow myself to stop crying? Stop howling? Stop doubling over with grief to the point where I felt like throwing up? Stop screaming to the point where I burst hundreds of capillaries on the skin around my eyes, wondering how the neighbors had not called the police? I like all of those miserable things. Truly and honestly. They feel good, real, satisfying, safe. I swim in those feelings and dig my toes in the way one might with warm sand. That intensity and pain connects me to my dead son. As debilitating as it is, I hope it never ends. It is palpable and almost visible like our love.

The remaining hours in that camper were tainted by my betrayal. And I needed to go home again, to my real bed in my real bedroom, to roll around in my sorrow, to feel connected to him again. I'm terrified of forgetting anything, any moment. I can't imagine ever living normally because I imagine that feels like leaving him behind.

Grief has no name for me

Someone who loves is a lover. Someone who fails is a failure. Someone who disappoints is a disappointment. Someone who drinks is a drinker. Someone who learns is a student. Someone who teaches is a teacher. But what is someone who experiences a loss?

There certainly are a lot of adjectives to describe that person—sad, despondent, bereft, grief-stricken, let down, wounded, hurt, scared, worried—but no nouns come to mind. There are nouns that describe certain kinds of loss. A woman who loses her husband is a widow. Someone who loses a limb is an amputee. But I cannot find that definitive word that encompasses the common life experience of loss. Or more specifically, my loss.

Proud mama, dead son

I wrote this piece in 2012 when my son was nine years old. I felt lost in my journey with a child with serious medical problems who would eventually face more heart surgery, but it is more relevant than ever now that he has died. I was reminded of this piece the other day after another heart mom shared this: “A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” ― Jay Neugeboren, An Orphan's Tale

The quest for this particular word started as an exercise from a book I was reading. The objective was to describe myself using nouns--no adjectives allowed! I came up with daughter, friend, mother, divorcée (silly word, but it is the noun to describe a divorced person), dancer, and writer. But I also wanted a word that encompassed emotional trauma. Without a noun to represent that part of my life, my list didn't describe me completely. My loss is just as much a part of me as the way I leap and spin during dance class. It is a part of my essence, the way that writing is part of the way I communicate. A list describing me without including a word around loss, is like trying to describe a sunrise without the word light.

When I had pushed my son into the world nine years earlier, I lost the motherhood I’d hoped for. Lost isn’t a noun, but it encompassed that feeling of not remembering how to breathe or sleep or eat. It encompassed the frustration around having to digest medical jargon. It encompassed the nauseating ache when wandering the hospital looking for the Neonatal Intensive Care Unit. It encompassed the shock and disbelief after doctors said my baby only had half a heart and needed several operations. It encompassed that feeling of knowing that every dream I ever had around parenthood was just that—a dream.

And now that my son is dead, I feel even more disappointed that our language fails not just me who is feeling so raw from his death, but all parents who suffer the death of a child. What are we? Why is there no name for us?

In 2012 when I wrote this, I considered that the noun I was searching for was human, even though human did not technically complete the exercise. Being human means many things, one of which is someone who experiences loss. At the time, considering human reminded me that my loss wasn't unique or any more extraordinary than my friend’s loss when her baby died. It wasn't any more unique than my other friend’s losses with each of her failed fertility treatments. My loss wasn't any more painful or stressful than my friends' who have children along the autism spectrum. Experiencing loss is part of what unites us as humans. It’s also part of what makes us individuals and steers us as we identify with all the other nouns on our lists.

Sure, my loss had evolved and changed over the years as my son grew and endured each hospitalization. There were even times when it no longer swallowed me with every inhale or haunted me every time I closed my eyes. In the seven years between his 5th and 6th heart operations, people would have described me as happy, joyful, and full of life despite the challenges my son endured (and that I endured along with him). I laughed often and embraced love and life's opportunities.

But that was before my son died.

Now that my son has died, I no longer know who I am and human is definitely inaccurate and inadequate. Yes, every human experiences loss. But this specific loss is so horrid that being lumped in with every breathing person on the planet is not a comfort. It makes my loss feel even more invisible, isolating, hidden, solitary, indescribable, and unnameable.

My son is dead

As I hiked in the hills near my house with the dog this morning, we came across two other dogs and their owners. One of the dogs was named Riley. I almost managed the courage to say, “I had a son named Riley and he died four weeks ago.” But the words failed to emerge from my mouth and I wondered if sharing that news with a complete stranger was worth it. I ultimately did not share. What would I get out of it?

Practice, I suppose.

Would you like to hear about my dead son?

The family who lives next door to us doesn’t know that my son has died. We don’t really know them. We wave when we see each other. We’ve invited them to various backyard parties, my kids wanted their grown-up son to babysit them, they had an old yellow lab who died recently. But we don’t know them. One of the worst things that can happen to a family has actually happened to the family who lives 15 feet west of them and they have no idea. None. It's not their fault. It's just reality. Our other neighbors that share our side fence don’t know either. Should I put notes in their mailboxes?

I’ve wondering if there some sort of grief flag I’m supposed to hang from a tree in the front yard. I’ve wondered if I’m supposed to put a sign in the front windows of the house. Or on my car. I’ve thought about creating some kind of grief band to wear around my arm. It would say something like, “My son just died.” Our society needs some kind of indicator to give the grieving a little way to acknowledge what has happened. A quiet way to acknowledge that walking through the Trader Joe’s or Walgreens is surreal when your child has died. So that others may tread lightly. So that perhaps we’ll see others with grief bands and know that we aren’t the only people to experience this silent and isolating misery. Maybe then we'll feel slightly less isolated, even if we don't feel any less miserable.

I imagine at some point in the future, the neighbors will ask at one of our kids’ lemonade stands: “Where’s your brother? The one with the glasses?” At that point, the kids will say: “Oh, Riley? He died…” A look of confusion will surely consume their faces followed by an awkward series of questions and the inevitable, “I can’t believe we didn’t know.”

It's strange that I cannot manage to speak this news to people--like the man walking his four-legged, rhodesian ridgeback Riley--given I want nothing more than the world to keep talking about him, thinking about him, and seeing his light radiate through everyone who knew and loved him. Shine it out. Yet, I am silent. I'm mainly hiding away, avoiding the conversations, the looks, the inevitable sobbing that comes with talking about my amazing son. Did you know that he could draw the 50 United States from memory? Including state capitals? How I wish I had taken a video of him at the chalkboard as he demonstrated this skill.

I know that me staying hidden away is different from not knowing how to tell the neighbors or avoiding eye contact at the store, but both are about acknowledging what has happened. Sharing the news of his death with the world has been something I haven’t figured out yet. I’m sure if I looked, I’d find some kind of etiquette pamphlet about this kind of thing. This unbelievable, horrible thing.

Failure to communicate

There is a stack of unopened envelopes in the cubby downstairs. Red and blue and green and cream-colored paper displays my name and address neatly written in cursive. So many letters, so many names of people I’ve known at different times in my life. They have all gathered together to prop me up with their words. I don’t know what to do with them aside from put them in the cubby. That impressive collection of feelings is waiting to be felt as soon as I am strong enough to feel them.

Unread

Right now, opening them seems impossible. If I open them—when I open them—that will be the end somehow. The flood of support will be over. If I leave that stack of envelopes alone, there are still things to be said. And as long as I have that stack of letters, people are still thinking about us because their sentiments are unread, unsaid, waiting to hold me when I need to feel not quite so alone.

After Riley died, almost inconceivably, the World Series teams pitched and scored against each other. Children and grown ups slid into costumes and ate Halloween candy. Babysitters were hired, Saturday night cocktails were imbibed, and dinners in dimly lit restaurants were eaten. Now Thanksgiving is looming while the reds and greens of Christmas twinkle from shop windows. People are buying milk and condoms just like any other day because there is still cereal to eat and sex to have. The world keeps going. Yet, somehow I feel like I’ve stepped every so slightly from the earth’s surface and the wind is slapping me raw as the world keeps spinning without me.

All of our family and friends packed their neatly folded green sweaters into their luggage and left town a week ago. Riley’s celebration was the end for most people. But for me, it was the beginning of quiet. Of lonely. Of alone. Family may have returned to their own houses, their own towns, their own families, their own activities and distractions. But this is my house, my town, my family. Any activities or distractions I have are distorted because someone is missing. Our six-chaired table typically evenly balanced with four kids and two grownups is now lopsided.

Honestly, I don’t know what I’m doing aside from getting through the day so that I can go to bed at night and getting through the night just to begin the next day. I don’t know what I’m doing besides killing time. I have talked to no adults—aside from my husband—since family left. And as I pounded my feet along the sandy trail near our house this afternoon, I realized I’m terrified of talking to anyone. I’m afraid of seeing people I know. I’m afraid that someone might recognize me. Without the dog to walk, I might never leave the safety of my warm bed.

In all of this fear of communicating, I keep thinking of an email that a friend sent me after I told her that Riley would be having surgery. She wrote: “This news…reminds me of the special challenges you have been awarded (not quite the right words, I know) in this life. And yet... you do such an amazing job of being a person who glows and sends loving energy out beyond your skin to the people around you, which is such an incredible gift, and all the more special and awesome, given the fear and underlying uncertainty you live with.”

I thanked her for seeing those things in me and reread her words countless times in the weeks leading up to surgery. I hoped that those words could reinforce my unsteady frame, shield me from crumbing, disintegrating under the weight of what we faced, the unknown. It was almost a mantra: I want to be that person, I want to be that person, I want to be that person. The fact that I ever was that person seems incomprehensible. 

I cannot glow. I cannot send positive (or even neutral) energy to anyone because I am unable to communicate. I have not responded to text messages, phone messages; I have not read any meaningful email in a week. I cannot open that stack of letters. I no longer know how to be in the world.  

Holding you

I held you in my lap on Monday. I was in the passenger seat and I clenched you, the brown boxes of you, as we wound along the roads from there to here. How I’ve wanted to hold you this past month, all those days in the hospital and all the days since. Even after you died, when I was allowed to climb onto the mattress next to you, to stroke your hair and whisper those last times into your ear, I wanted to pull you in, squeeze you like I always have. Not holding you, not touching your skin feels impossible. Yet here we are.

An everyday hug

And now I’ve held this new version of you, these two weighted boxes with your name on them. I wasn’t sure what I was expecting when we arrived to claim your ashes. But you are not you at all. You are like a parcel waiting to be shipped. And when your dad takes his parcel version of you to his house, well, I cannot understand how can you be in two different places at the same time. Someone measured and made equal the ashes you left behind. It’s not like having some of your clothes here and some of them there.

All those days, and even now, I yearn to wrap my arms around your body as I have done all the days that I can remember being your mother. Even before you were born, I would fold my arms around your curled up body as it rolled inside of me. Why didn’t I hug you longer each time I kissed you goodnight? Why didn’t I hug you when you came in from school every day? How did I let you slip into your dad’s house without more fanfare? Did I really believe there would always be more? That the opportunities stretched beyond any given goodbye?

I know the answer to those questions. We simply lived our lives. We loved each other and lived together and you went to and from school, the park, a friend’s house. Our days were normal. Love floated through our worlds like the dancing vapor rising from a latte. It was faint, yet warm and visible. Each hug was never to be the last. Even that morning when I last heard your voice, when I said I love you and you said I love you too as doctors escorted you beyond the double doors—the last time I really saw you—it was a placeholder until the next time. Those words were casual confidence that there would be many next times.

Only now do I realize that more than my wants to hold you, to feel the way your elbows bend and the points of your shoulder blades, is my desire to feel you hugging me back, your small hands squeezing mine. To feel the weight of your limbs around my body or sitting on my lap just like all the other days. To press my nose into your hair and breathe you in, the warm wisps of love.

With every exhale, there is love

How can I possibly sum up all that you meant to me with the 26 letters of the alphabet? My mind races with how to assemble them accurately to say what I’m feeling.

A happy life

Pain is simple. It is easy, effortless. I open my eyes, I throw blankets back, I look at every object in my room, my house, and I find you. There are the pictures taped to the mirror on my dresser. There are the necklaces you made hanging around the base of the lamp on my side table. There are the hidden Christmas gifts that fall from the closet as I reach for the drying rack. There is the book you were going to read when you came home. These lovely, simple things are painful because they flood me with all that was, all that ceases to be.

Dark is easy, too. I think of how you walked out of school on a Tuesday, and as they tried to fix you, they destroyed your bit by bit. With their medications, they cut off the circulation in your legs, your hands, and I watched bits of your body die days before your heart stopped. I think of the packet of ashes waiting for me to pick up from the funeral home. How can you not exist anymore? How can your body—the one that I held and kissed and bathed and nursed and marveled at and read to—be removed from this earth, from my house, from this town, your school. The clothes you wore to the hospital sit on the step stool in the kitchen. You are here and you are gone.

There is also light. Every time I look out the window, I see you. You are in the shaking leaves on the London Plane in the garden. You are in the blades of grass forcing their way through our dry earth, browned by drought. You are stretched across the flat pads of the Manzanita bushes that dot the hillside where we walk our dog. You are in the fronds of the pineapple palm trees that line our streets. You are in the stems of the flowers standing in the vase on the patio. You are the bougainvillea branches stretching toward the sky. You, my boy, are everywhere. You shine through the front windows even though I’ve covered them with dark curtains. You flood my heart with light because you were light. Beautiful resplendent light.

There is also love. Within the pain, the dark, and the light, is love. Your name is love whispered into my pillow. Your photos are love flooding my eyes. As I lie on your bed in the dark, I inhale the scent of your blankets. It is love. Love is everywhere, you are everywhere. And nothing I can say or write can make you whole or bring you back or undo the wounds. But I have love. I have your memory.

You beat in my heart, you move through my veins. You flood my lungs and I breathe you back into the world with every exhale. 

To read about my son R, go here. 

Eleven and a half

Despite the very special team of doctors and nurses helping him, Riley died yesterday afternoon, Monday, October 20, 2014. I am heartbroken for my family and I am heartbroken for all of the people, especially the children, who know Riley. I wish I could scoop them up and protect this from this horrible truth.

Hopeful with siblings before surgery.

Riley went into surgery scared, but hopeful. He looked forward to running, flying on airplanes without oxygen, and going to the mountains--something he could not do because of his low oxygenation. I like believing that he died still feeling hopeful for those things, and I imagine him running and running and running. I feel grateful that he died while being soothed by his mother, father, and two bonus parents and not in an operating room. He is no longer in pain, no longer suffering, no longer struggling. For this I am also grateful. Afterward, I noticed a vertical beam of light pressed against the wall near the closed blinds at the end of his bed. He is free.

We know you all want to do something and we appreciate your love and support. In lieu of flowers or other gifts, please consider donating in Riley's honor to Camp Taylor, which is a free summer camp for children with heart defects and their families. Also, please donate blood, not just now, but again and again. Riley lived as long as he did because of the generous donations of countless, nameless, and selfless individuals. His corneas will be donated to help others.

At some point, there will be a celebration of Riley’s life, and we will post details here. In the meantime, I wanted to share a poem that Riley wrote last month for a class assignment:

Gracious Green
By: Riley Norton 9-16-14 

Do you know what my favorite color is? Green! 
He is: nature; earth’s greatest gift, 
the leaves that sometimes drift, 
an Exit sign glowing on the wall, 
and a brand new tennis ball 

My color sounds like the wet grass when you step in it 
He tastes like a salad with some vinaigrette 

My color feels like a warm, soft pillow 
Green is the smell of a tree called a willow 

Green looks like a sour apple ripping on a tree
he is someone's favorite color and that someone is me! 
IS YOUR COLOR GREEN TOO??? 

Thank you for loving him, and us, through the years.
Suzanne, Ken, and family

UPDATE: Donate to Camp Taylor in Riley's memory here: http://www.firstgiving.com/fundraiser/rileynorton/donate

Lullabies for R

In the last few days while R has been on life support, friends and family have left him voicemail messages that we have played for him. Others have thought of songs that have been meaningful to R over the years and have played those songs for him. Two different friends mentioned "Fireflies" by Owl City. It was the theme song to so many Wednesday adventures with friends. And long before that, it was a song that R sang so often that I recorded him singing it. This recording is from November 2009. R was six years old.

As a side note, I cannot even begin to tell you the nightmare of opening one's laptop to find out that the world has decided that your son had died. To receive condolences for a death that has not taken place. In the future, please visit R's blog for accurate information regarding his journey.

Are you in there, sweet boy?

Can you hear the way I hold my voice steady when I speak to you? Can you hear the way I muffle the sobs when I say I love you? Can you hear me choke on my words when I talk about what we will do when you come home? Can you feel my fingertips on your arm? Do you notice when I put a cushion under your wrist?

Are you in there, sweet boy? I look into your gel covered eyes only half closed from sedation. They ooze and are swollen from fluid flooding your skin like a balloon overfilled at the tap next to the trampoline in our yard. I push my fingers through your grubby hair and imagine that you will open those lids to see me looking at you.

We told him the surgery would make him better.

My sweet boy, I have wondered if you can hear me under the tape, under the anesthesia. My sweet boy, I have wondered what you’re thinking as you are poked and cut and pressed on by the ultrasound technician. My sweet boy, I have poured love over you with every breath as you lie motionless on that hospital mattress. Even as you lie motionless, I feel your love and memories of your smiles flood me. Memories of your laugh help me inhale. My sweet boy, how I have loved you every day that you have shined your light in my life. Every day since April 2, 2003.

I have to believe that you are still dreaming of days without medicine, of flying on airplanes without oxygen, of climbing to mountain tops with energy. My sweet boy, my sweet boy. 

Work heart, work

There are no days, only nurses and shift changes. There are no hours, only epinephrine doses and drainage. Sometimes black spreads beyond the shutters; sometimes there is blue or gray, then black again.

Guard dogs

I cannot remember what I did before Wednesday, before the sticky floors. I cannot remember before the darkened stairwells took me to breakfast and lunch. I cannot remember walking my dog in the hills. It's hard to believe that I was so afraid of that bottle of tiny white pills, those sweet pills that slow twitching and soften muscle contractions ripping through my legs. I cannot remember sucking the fresh air into my lunch; my lungs fill with recycled air from hospital filtration systems. I shiver in my jacket as your naked frame lies motionless on the bed under a tiny cloth.

Work heart, work.
Work kidneys, work.
Work liver, work.
Please.

My voice whispers into his hair and his ears and his wrists when I want to shout at someone or something. There is no one to shout at. There is no one to blame. But I understand why he blamed me for growing him incorrectly. I blame me too, even though I didn’t grow him incorrectly on purpose. My pocket bulges with crumpled tissues.

His stretched skin is filled with fluid, so painfully stretched, so full of fluid. How can I wake his kidneys besides pleading with them as I hold his hand. I smooth love over him as I graze his lovely skin. I cuddle him in my mind and relive all the hours we sat in a rocking chair in his bedroom as I pet his soft hair. I pour love into his open mouth, lips spread from the breathing tube.

Work heart, work.
Work kidneys, work.
Work liver, work.
Please.

A giraffe holds his ventilator in place. His penguins support his legs. His guard dogs perch at the end of his bed. Who can they guard against? It has only been four days. His heart needs to make peace with its new ventricle.

I am only a mother. I am only a mother. It feels as though I cannot bear many more days like this, even though this pain, this helplessness isn't new. Take my heart. Take my kidneys. Take my liver. Hear my whispers. Feel my love. Take all you need from the love I have to give. If my love is the medicine to heal you, it feels inadequate.

Work heart, work.
Work kidneys, work.
Work liver, work.
Please.

(To follow R's medical progress, visit his blog here.)

The things we get used to

I hate to imagine that I've become somewhat used to this whole hospital and surgery malarky, but I've become somewhat used to this whole hospital and surgery malarky, even at a different hospital with different waiting rooms and different cafeteria food. It feels somewhat normal to see my son paralyzed and under deep sedation with a plastic breathing tube coming from his mouth like an awkward straw. It's somewhat normal to see the IVs in his feet and arms and neck. It's somewhat normal to see drainage tubes dangling from his torso and attached to briefcase-sized boxes under his bed.

My familiar vantage point

What I hadn't gotten used to was the waiting, the waiting without updates, the waiting in which you begin to imagine that no news is definitely not good news. He was in surgery for more than 12 hours yesterday and I didn't start to panic until after nine hours. Because the surgeon had told us nine hours at one point, I'd latched onto that number. And during that time, I meandered around the hospital and slept and ate and doodled and chatted to the assorted family members here. It went by quickly without as much as sob or gasp. Beyond that, I fidgeted, rocked, sobbed, and could picture the dark place where my baby lay on a table, cold and naked.

But overall, three hours is short in my lifetime. And now we are on the other side of this dreaded, but successful operation. Things are calm, and I'm grateful that he's still sedated, still pumped full of pain medicine. It's when he starts coming back into his body and feeling the trauma of open-heart surgery, then it will be hard again. His howling voice, my helplessness. But for now, I settle into the chair at the foot of his bed. This familiar place, this familiar vantage point and marvel at what we can get used to.

"Things are going well"

R distracted with SF Giants' highlights

We just heard that "things are going well," but doctors don't have an estimate for when they'll be done. For those of you interested in the play-by-play hospital updates, please visit R's blog. At this point, he's been in surgery for more than seven hours and we're guessing it's going to be at least a few more hours.

Blood, sweat, and tears

It wasn’t until I picked him up from school Tuesday afternoon did I realize that it was his last day of school until January. As he walked across the street with his buddy, I heard his friend said, “Well, see you next year, I guess.” And then it hit me that, yes, it was his last day of school. Intellectually I’ve known it was coming, but I hadn’t anticipated the realness of it all. I spun around to see if anyone else had noticed the moment, felt time slow down. No one had. It was just in my head. I told him he didn’t need to do his homework. For that, he was grateful. There should be some perks.
What followed Wednesday was 10 hours of poking and prodding for his pre-op appointment. It was strange to be walking the hospital corridors and having lunch in the cafeteria just like normal. It was anything but normal. Casually giving six vials of blood, casually peeing in a cup, casually having your heart examined in a darkened room for 90 minutes, casually capturing the rhythm of your heart on a computer with the help of 16 wires glued to your body. All so that the very next day, you get to arrive to the hospital at 6:15 am and willingly hand yourself over to a talented group of doctors who will change the course of your life—hopefully for the better.
After all of that, we hosted dinner for 10 in our backyard followed by key lime pie—R’s favorite. Then it was bedtime. There were tears and vomit, nerves from the day finally catching him and taking over. He was most upset that his favorite blanket was not available to comfort him through the night. Fortunately his three siblings were wrapped in their sleeping bags in his room to keep him company.
And then last night at 11:45 pm, I woke R for a private picnic. After midnight he could not eat or drink anything, so we took advantage of the last minutes of the night to squeeze in some calories. We’ve had middle of the night picnics before each of his procedures and it’s quite sweet to share a few moments when the world is quiet and asleep. Hopefully both of us were able to fall back to sleep afterward.

Stop flirting with me

Hey you, in that sleek shade of orange…what are you doing over there across the bedroom when I am way over here all alone? I can see that you’re trying to get my attention. You know you want me to come over there and wrap my hands around you. You know you want me to put you between my lips…

People, I’m not sure what you were thinking, but I’m talking about a bottle of anti-anxiety medicine filled with little white pills that’s so clearly flirting with me from my dresser over there. I filled the prescription yesterday. And I feel a little scared that I have it, that I went to the doctor and asked for it, that I filled it, and now want to take one. I understand that’s the whole point, but because I want to take one, I suspect it’s because I’m in need of taking one. But I’ve had that other safety pill hiding in my closet all these years. And I saved that one, solitary pill because I feared that there would be a day worse than any day thus far and I would need it. I guess what I’m saying is that I hate that that day has come. Fuck.

Wow, did you hear it? That shattering sound just then? Sorry about that. Just had to throw a rock through the front window of the fake life you imagined I was leading. The one where I’m smiling and driving my kids to baseball practice and playdates. The one where I dance through Trader Joe’s and sing along with their soundtrack of classic 70s songs and 80s Brit pop. That life is peachy keen. Now don’t get me wrong. I do those things. You did not see my doppelganger lip-syncing to Rick Astley. But all is not peachy keen.

For all of you who’ve imagined that I am just some awesome woman living an awesomely perfect life with a sexy English husband, four kids, a dog, and five chickens worthy of envy or dislike, my life is imperfect and entirely fucked up—just like yours. And yours. And yours. Sure they’re fucked for different reasons and there’s a spectrum of shit that can fuse to the bottom of your shoes and get dragged around indefinitely as you stumble around Trader Joe’s singing. Mine involves splitting my son open a bunch of times. Yours may be about your ex-husband and custody arrangement. Or maybe it’s about your selfish mother or your alcoholic dad or your dead wife or your cancer or your toenail fungus.

As I was leaving my dance class last night, a woman told me that she used to dislike me because I was a writer. I was an at-home parent. I was younger than her. I was “prettier” than her. And that I danced with all the guys she wanted to dance with. And she disliked me for all of those reasons right up until I opened up about my son. Then it became clear that I wasn’t leading a life of envy. And I totally get it. What she told me is so messed up and so true because we create stories for people. We fill in the blanks. We think we can tell everything about someone by looking at them. But we can’t.

So here I am fantasizing about the drugs given to me by a doctor yesterday. Therapist Friends told me that in her field, they call it Vitamin A. That sounds a lot less harmless than Ativan. Now if only it didn’t feel quite so profound. Not taking one, not taking one, not taking one...What does it mean if I take one, you ask? Nothing. There is no medal to be won while my son is in the hospital. Just hating that I’ve arrived in this dreadful place.

Can you please help?

This is me looking forward to mandatory cookies!

I reclined in a squishy chair and was covered in a warm blanket. There were no children; there was no laundry; warm coffee and a plate of cookies was in my near future. I would have preferred softer lighting, but overall it was great place to rest. Had I closed my eyes, I suspect I would have easily fallen into a mid-morning nap. When I was all done, a swath of pink was wrapped around my arm. Where can you have this kind of treatment, you ask? At your local blood center, of course!

R will need at least four units of blood for his surgery on Thursday. Our hope is to replenish the supply, so if you are able to, please go to your local blood bank and donate in his honor. No, your blood won't be used during my son's surgery, but it will help someone else in need. 

Once you donate, please post here so that we can see how many pints we were able to rummage up in his honor. Can you spare an hour and a pint? Go on, you know you've been wanting some juice and cookies!

The whole truth

Have you ever had the feeling that I haven’t been telling you the entire truth about everything? That maybe I’ve been holding back even though I’ve alluded to this, that, and the other thing? It’s definitely hard to find the line that separates private from public and public from private, especially when it comes to my kids who increasingly move in their own worlds and may be impacted by what I write here. But in the interest of openness and being in need of drawing support from my family, friends, acquaintances, the community, people I’ve never met, and so on, I wanted to bring you up to speed.

R is going to have his 6th open-heart surgery on Thursday, October 9. He was born with a single ventricle heart and doctors are going to attempt to build him a new ventricle with a procedure called a 1 1/2 ventricle repair. In an effort to explain R’s story, I came up with this video. Please share it with anyone you think would be interested in sending good thoughts, offering well-wishes, prayers, good karma, a force field, or any other type of positive vibes his way. Thank you.

The safety net

Years before my dad died, he quit smoking. Yet when I was cleaning out his bedroom closet last summer, a dust-covered carton of Pall Mall unfiltered cigarettes was among his things. Having it there must have helped him feel at ease—if at any time he changed him mind and needed a cigarette, it was only a few steps away. His safety net.

My safety net is a bottle of Ativan with a lone pill in it. The prescription was written mid-2008, not long after writing about how much I hated my kids (fortunately, it was a fleeting feeling) and not long before getting divorced. The orange plastic cylinder lives in a shoebox among unfinished bottles of Zoloft and a box of antibiotics that I convinced my doctor to give me before I visited remote villages in Brazil a few years ago. That lone anti-anxiety pill provides me with some peace of mind.

My safety net

Now let’s rewind to my Monday night dance class.

As my limbs stretched along cold hardwood, the teacher’s words flowed over me. She said, “Imagine a light, but don’t think of it as a light. Just experience the light without labeling it.” I tried to feel it, but my writer brain not only saw the light, it created a special stage for the light to shine from. I also began mentally typing a list of descriptors: yellow, warm, bright. So I thought to myself, “Shit, stop describing it. Can’t you just feel it? What’s wrong with you? Can’t you just be okay not knowing every detail?”

As her words continued, she read a quote. It was about being at peace in the present. Instead of fearing the unknown, find freedom in the unknown. Together, I guess the idea was to just feel life and not label it or fear it. Life without all the baggage of the cerebral cortex gives us freedom and ultimately more joy...or something like that.

That is a noble, yet unrealistic concept--for me--and I find the concept somewhat accusatory. It places fault on me for the anxiety and the worry that I drag around. For the last seven years, I’ve lived with low-level panic wondering when my son’s next heart operation will be scheduled. Of course worrying and allowing the stress to be part of my anatomy doesn’t actually change when it will take place. Yet, I cannot be free of it. There is no freedom, aside from when I’m lost in the music on the dance floor. There is no freedom, aside from when I’m asleep. Low-level panic is present like my fingernails.

“Snap out of it! Mind over matter!” I have told myself. But as it turns out, there is nothing wrong with me, per say. Words are how I perceive the world and low-level panic is on my keyboard next to the shift key. Sure I need practice experiencing the world differently. I suspect that’s what meditation is all about. And that's why I go to dance. It's a moving meditation where I feel the floor, hear the music, and allow my body to respond accordingly. There are few thoughts aside from “Keep your eyes open" or "Don’t crash into anyone.” And I suspect that’s what the lesson was about. It was another tool to help us live in the moment.

That's what I've been trying to do. Yes, I fell apart and got divorced, but I kept going. I went to graduate school, pulled the lever a few times on the dating slot machine, fell in love, got married, some step-kids, a dog and five chickens. Those are all wonderful things that help offset the other stuff.

And many, many times along the way, I have been comforted by that lone pill encased in plastic in a shoebox.

Love me, this is who I am

“I’m probably going to have fake teeth one day, you know,” I said to my husband as I came down the stairs after looking at my gums in the bathroom mirror. “And I’m not sure my new electric toothbrush can do anything about it.” A birthday is an especially good day to identify all of your flaws and point them out to your spouse because I suspect everyone is a little more forgiving on your birthday. And today is my 41st birthday.

My birthday pie helpers!

“That’s nice,” he said, looking up from the presentation he was creating. “You can always get implants.” And yes, he really was talking about my teeth…

“Just thought you should know what you’ve gotten yourself into,” I said plopping on the other end of the sofa. He knows, boy does he know. I think we’d only been dating a few weeks when I sat him down on the couch of my rental and listed all of my faults, outlined all of my flaws, described the mistakes I’ve made, and detailed the specific type of baggage I would be bringing into a relationship if we really, honestly, and truly were going to have a relationship. It just seemed that he should know it all because if he couldn’t handle it or didn’t like what he heard, well, I wanted to know that sooner rather than later.

And here we are five years later. And instead of talking about my son’s health problems or my varicose veins or the part I played in causing my first marriage to fail (because it takes two people), I get to talk about my wonky teeth. The question then becomes, why does it matter? I suppose it’s because we all get a little vulnerable every now and again and a birthday is as good as a reason as any to feel vulnerable about getting older. Will you love me when I’m wrinkled? Will you love me when I’m gray? Will you love me when my teeth fall out and I need implants? It makes me think of that children’s story “The Velveteen Rabbit.” In one scene the horse is talking to the rabbit about love. It says:

“Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”

Then again, I suppose you could say that of all days, a birthday is a day to put all of the things we don’t like about ourselves aside. It’s a day of acceptance, a day to just be who we are without explanations or asterisks. It’s another opportunity on the carousel of life to finally accept who we are, flaws and all. Perhaps in a few more turns of the calendar I’ll get to that place. For now, I’m just getting used to saying them out loud. I think it’s a good step. Plus, we all need a little reassurance now and again that we are loved--and will be loved--no matter what.

High school at 40

Apparently all it takes to slap me back into the social awkwardness of high school is a gathering of moms from my son’s school. As I walked down the hill to the wine event, there were sweaty palms and my heart pounded from under my blouse. “What if I don’t know anyone?” I asked myself. “Or what if no one talks to me?” I fretted.

Rewind 20 minutes earlier when I'd joked with my husband about a children’s story we have stacked on the shelf called “Pelican and Pelicant.” It’s about two birds, one who is confident and one who isn’t. I was feeling very Pelicant. He talked me up (as good spouses do) and pushed me out the door. “Have a good time,” he called after me.

As I entered the crowded house, another mom was stepping up the stairs behind me. “Apparently I’m not the last one,” I said to her just before introducing myself. “And there are more behind us,” she said. “I just saw some people parking.” Her name was familiar and we exchanged niceties before I went to look for the hostess. Not knowing what to bring, I had a small paper bag filled with fresh figs and plums from our garden.

She was in the kitchen pouring champagne. I said hello, and she welcomed me with a glass. From there I turned and began talking to a mom that I recognized from when C and her daughter were in the same 1st grade class. We had a good long talk about school and kids and the unexpected parts of life. It was in the conversation that I realized that probably most of the women at that party only knew a couple of other people, or maybe just one other person.

As the night went on, I ended up chatting to a bunch of women I recognize from school but had never talked to. As it turns out, they were all friendly. There were no sorority pranks. After two glasses of champagne, I may have even admitted to a few that I’d been secretly wanting to be friends with them, which is true. And then I even felt comfortable sharing how nervous I felt on my way down and how silly it was.

From there, I wished I’d had a piece of paper to share something with them I learned from one of my best friends. “Pretend my hand is a piece of paper,” I said as I held it out flat. I drew a circle on my palm. “Imagine that inside the circle I wrote the words comfort zone.” Then I pointed at another part of my palm. “Now imagine that it says magic way over here,” I said. “This is where the magic happens.” And that’s pretty much how I felt. I got out of my comfort zone and found magic.

Just like I always tell my kids, you can never have too many friends to turn to on the playground. And now I have more people to turn to while I’m standing outside the school waiting, or while I’m at back-to-school night, or at Spaghetti Bingo—our school’s annual fundraiser. My only regret—doing my little awkward dance when telling people about how nervous I’d felt before the party.

Who's your Plus One?

Take my Plus One Challenge and make it personal!

The Ice Bucket challenge has been a hugely successful awareness and fundraising campaign for ALS. Fortunately the neurological disease hasn’t affected anyone in my family. The viral video campaign, however, has saturated my friends and my Facebook newsfeed.

To make my moment in the spotlight more meaningful for me, I’ve decided to make it the Plus One challenge. That means in addition to donating to ALS, I’m also donating to an organization that has impacted my family. My Plus One is Camp Taylor, a free summer camp for kids with heart defects in honor of my son. I'm challenging everyone who has already taken the Ice Bucket challenge--and those who are soon-to-be nominated--to consider yourself challenged to the Plus One campaign.

ALS is doing great work, but are countless worthy charities in need of support. So why not donate to two charities? Open your wallet and make this whole ice-bucket-thing personal by donating to an extra charity that has meaning to you. Are you in? Who’s your Plus One? It's probably different from mine, and that's okay.

Take a look at me now

On most days, my office is my bedroom, my desk is my bed, and my knees serve as my table. The dress code is stretchy slacks and a cotton top. It has to double as a hiking outfit and it needs to hide dirt from young hands and camouflage dog fur.

Failed selfie attempt

Monday was different. It was a rare dress-up day. I found some slacks and a top that when worn together qualified me as a certified professional. A professional what, I’m not entirely sure. At the very least, I didn't look like a slob. All the fuss was because I took a meeting with a woman from my undergraduate alma mater. Our talk took me on a walk through the years I lived in Boston, the Stetson West dorm, my radio show at WRBB, and lounging on the Quad. I thought of my semester abroad in London. I reminisced about my senior year co-op in Boulder, CO.

Almost full-length selfie

I'll admit that I was worried about the meeting. I was worried what she might think of the life I’ve made for myself since leaving Northeastern 18 years ago. Yes, I was a reporter for a handful of years, but for most of those years I have been raising kids full-time—aside from my stint as the official mom blogger for Oxygen Media, getting my MFA, and writing a book. As I recounted all of those things to her, I realized I have accomplished so much since leaving the workforce (in addition to raising lovely young humans). My accomplishments haven’t been along a traditional job path, but they are not insignificant. Not to mention a chunk of these were accomplished while I was going through a divorce and single parenting. 

Got it! Cute, right?

Sure, the meeting had undertones of wanting me to donate with more regularity to the university that launched me into a writing career. I should be doing that more often. There were many terms that I needed extra grants, scholarships, and loans to pay tuition. Talking about my college years gave me a renewed appreciation for young people who are facing more competition to get into school and higher price tags. The percentage of kids going to college has risen by 48 percent since 1990 while the cost has tripled. It’s scares me to imagine what it be like 10 years from now when I might have four kids in college. But that's a side point...

In the meantime, my stylish outfit and my motivational chat have prompted me to revisit goals and amend deadlines now that the kids are back in school. Along the way I just might get a little more dressed up every now and again--even if I'm just headed to my four-legged office. Or perhaps I'll relocate my office to a cafe.

My first friend

(Yes, this is a Google Maps screenshot)

In 1980, when my family moved to a different house on the same street, it may as well have been to a different state. You see, Walnut Street divided those two blocks of Pound Street like an impassable highway to my six-year-old self. In that simple move just a block away, I lost touch with my first best friend. Walnut Street was the boundary that separated one school from another. The north side went to Washington Hunt Elementary and the south side went to Roy B. Kelley Elementary. I ended up at the latter school after the move.

I’ve always felt bad about that lost connection. At six, I was allowed to cross the street, and so I could have done a better job trekking that extra block back to Juniper Street where she lived—I just didn’t. All these years, I've wanted to apologize to her about that.

I have the best memories of from when we played together. I remember eating snap peas off the plants in her yard in the summertime, having white rice with butter at her family's dinner table (something that never appeared on my family’s table), and getting pulled home by her dad on a sled in what felt like the middle of the night on our first sleepover attempt when I ended up being too nervous to stay the whole night. She remembers other things—running away from home to my house and the time when I fell on my way home from school and a stranger gave me candy. I didn’t eat it, but instead gave it to my mother. Apparently my brother ended up eating it anyway. I wonder what he and my mother remember about that day?

I connected with her a few days ago via Facebook, and connecting with her (and finally apologizing for losing touch) is one of the things that makes Facebook actually worthwhile. But ultimately, all of these stirred up memories from decades long ago make me wonder what things have already been solidified in my children's memories, things that they will carry with them for the next 35-plus years.

What's under your shirt?

Mandatory touristy photo :)

Warm is not an adjective often used to describe a San Francisco summer day. But when I took the kids to Alcatraz last Tuesday, it was delightfully warm. We had braced for swift breezes and furious fog by wrapping our limbs in jeans and long sleeves. When we realized we’d over-packed, jackets were stuffed into backpacks but we were stuck with jeans wrapped around our legs.

Once we were on the ferry, the orientation video gave us an overview of the island’s notorious history as a maximum security prison, about the returning ferry schedule, about the steep hill we’d have to climb—equivalent to a thirteen story building—to reach the location where we’d pick up our audio tour. “Ugg,” was the response from R when he heard this. “I’ll never be able to make it.”

But there was an option for people with disabilities. A little electric shuttle runs from the wharf to the prison building. Since seating is limited, I told R that he may have to ride it alone and C and I would walk up and meet him at the top. While he didn’t like the idea of being alone on at the top while he waited for us, he liked the idea of waiting alone much better than the prospect of hoofing it up the steep road together.

SEAT on Alcatraz

When we got off the ferry, we were welcomed by an mucky ocean smell and a docent who gave us an overview of our visit, including the really important stuff like where the bathrooms and drinking fountains were located. As he spoke, I spotted the shuttle to our left. It looked like a little train from the zoo with its open sides and flat roof. Since R doesn’t have a wheelchair or crutches or some visible disability, I anticipated that the attendant would probably ask why we needed a lift. “Do you think you’re old enough to answer her questions on your own?” I asked R. He said yes. He is eleven and a half after all.

“I have a chronic heart condition and I’ve had five heart surgeries,” he told her. She waved us through. “Can they come, too?” he asked pointing to his brother and me. She said sure. Oldies and people with wheelchairs filled in around us. Just before the shuttle began to putter up the road, I heard the attendant say: “It’s the child,” and out of the corner of my eye, I saw her gesture toward us. I can only imagine that someone wanted a ride, she declined their request, and then they pointed indignantly towards us with a snarky comment along the lines of: “What’s wrong with them?”

I felt angry, wishing they had asked me directly in their self-righteous tone of voice because they thought we were taking advantage of a service we didn’t need. I felt embarrassed because we look normal. I avoided eye contact with everyone we passed, but felt accusatory stares as we rolled towards the top.

R looks like a regular kid. His big blue eyes are like his dad’s. The arc of his eyebrows match mine. He likes the San Francisco Giants and reading. He likes garlic toast and Tabasco. He plays little league and wants to be a professional pitcher someday. He has a crush on a girl at school and goofy teeth that an orthodontist is ready to crank into neat rows. He also gets tired very easily, but no one can see his heart defect.

Don't we all have stuff hidden from view--stuff we don't like, stuff we don't talk about, stuff we conceal under clothing or hats or makeup? Our scars make us who we are and sometimes they are visible and sometimes they're not. A shirt hides R's scars. But on days like that, his healthy appearance made us stand out. I only wish that I hadn't been so bothered by other people's reactions.