This is limbo then, the stasis of grief.  Time shifts–some moments last forever, others are gone in an instant.  Gravity feels different.  “Like it’s fifty percent greater,” the Husband said the other day.  “It’s true,” I said, “even the pots and pans are heavier.”  I didn’t expect back to school to hit me the way it did, and yet, there you have it.  A gap, a void, the lacuna of my son.  “He didn’t like school very much anyway,” I said in consolation to my Husband as we drove away from dropping off my daughter.  “He would have wanted to come home as soon as he got there.”  I reminded him of the time I went to pick Evan up and he couldn’t grab his lunch box from his cubby fast enough.  “Then he was out the door and down the ramp before I could stop him.”

Next week, I’ll pack my bookbag, fill it with my laptop and manuscript and all the other various props needed for revision, and head to the library, my own version of school.  This week I’m letting myself sit in the silence, as I miss the feel of my son’s hand in mine, and our journey.

(Evan in pre-K, with his gifted teacher, S.)

A week or so ago I lost my cool with a fellow shopper at the local grocery store.  She’d left her cart parked in front of the very same refrigerated section I was hoping to peruse, looking for the thing I might eat that would nourish and sustain without causing me to lose my appetite after one bite (let’s not talk about food and grief, shall we?  It’s a pointless subject.)  Now this is a small store, mind you, and often packed, and one cart left in front of an array of packaged salads can bottle up the whole works.

“It would really help if you didn’t leave your cart right where I need to be,” I said, testy, upset.  The shopper’s look told me the truth:  my reaction was completely out of line with the situation.  Except that she couldn’t read my mind, or hear my thoughts, those that went like this:  my son is dead and your cart full of food, and the children next to you, well they all remind me of that, of how I can’t eat and how my son isn’t alive.  So move it, okay?

That is where the anger comes from, folks.  It’s not a person or a thing, it’s the fact of what has happened, all that is gone, changed, no more.  So if you see a rabid shopper, someone who is frayed and out of sync with the rest of the world, consider what might be going on beneath the surface.  And be sure to move your cart.

~

Last April I happened to stop by the local outpost of a high-end, ultra snooty housewares chain.  You know, French.  I had taken a break from an otherwise insanely busy week to look for a birthday present for my mom.  I was hoping for a leisurely fifteen minutes of fun, a distraction.  I browsed the store but nothing struck my fancy.  Then I remembered that for a long time I had wanted a nice, forged cooking fork.  I found a salesperson in this high-end, ultra snooty store and asked her if they had one.

“Only those–” she pointed to a fork and knife set, one for carving.

“I was looking for the fork on its own,” I said.

“Sorry, that’s the only one.”

“I’m surprised.  I hear cooking forks can be the most-used utensil in a kitchen.  In a store like this, that seems like an oversight.”

“I’ll tell them you said so,” she said, the “them” clearly meaning “no one.”

Cut to early this August, three weeks or so after Evan died.  I’m in the same store with my friend H., browsing the aisles after a lunch nearby.  I tell her the story about the cooking fork and she grabs my arm and says, “That’s ridiculous, we’re leaving, I’m not buying anything here.”

I was ready to oblige and then remembered I was in need of a wine opener, seeing as there has been much wine opened over here recently.  I picked out a simple, easy to use sommelier’s knife that wasn’t terribly overpriced–

(branded with the name of that same high-end, ultra snooty store, in case anyone is interested)–brought it home and attempted to use it that night.  For some reason, the arm that extends from the opener isn’t the right size to clip over the bottle lip.  I can get the hooked portion on, but once I pull out the cork, the bottom section won’t fit.  Each time I try to open a bottle with this opener, the same problem occurs.  And each time, I curse it and the store from whence it came.

This is not a plea for a new corkscrew, or for someone to run my errands so that I don’t lose my cool in the supermarket aisle.  It’s all by way of saying, Yes, anger.

Reading Marissa’s story took me back to the days of Evan’s first seizures and diagnosis.  There is nothing more terrifying than watching your child have a seizure, and know–or perhaps not know–what is happening.  In our case, we had come home that February with a child on oxygen and a G-tube and were slowly beginning to realize that Evan was probably also blind and developmentally delayed.  I had a chart of meds taped to my kitchen cabinet that had even the pediatrician shaking her head in disbelief.  I also had a three year old toddler who played games with me like, “You be the sick person, I’ll be the doctor,” and then hooked me up with yarn to the “machines” in her room.

One night, in the midst of this already impossible life, I woke up to Evan clenching his fists by his side, then crying out in sharp bursts.  I had seen many seizures in my time in the NICU with Evan but never one that looked like this.  I mentioned it to my brother, then brushed it off even to myself.  We had so many problems already, did I really need to invent another?  A day later, I was on the phone talking to my friend M. with Evan in my arms and he did it again:  the same clenching, the same cries.  M. confirmed there was nothing “normal” about what she had just heard, and urged me to call the pediatrician.

Many useless doctors later, we arrived at some who could help and received a diagnosis of infantile spasms, a rare and catastrophic seizure disorder.  Like Marissa’s dad, I went online and tried to find solace for myself, my son and his future.  There was little.

In the end, Evan was lucky.  Some kids with infantile spasms outgrow them–he did–although there is no clear answer why.  Some kids go on to have other seizure disorders.  Many are mentally retarded, some developmentally delayed.  But the statistics don’t mean a thing when you are like Marissa and her dad, living with the reality every day.

Marissa’s dad has started a project to send a bunny named Fairfax (stuffed, not real!) around the world to other families who have children with infantile spasms, to create community and spread awareness:

I’m starting Fairfax’s journey in the next few days, both as a way to communicate outside my little bubble, and to spread awareness of this syndrome.  If you’ve got the bunny, and have read this far, take pictures of where you are.  It doesn’t matter who you are or where you live- take pictures with Fairfax, and email them to Marissa.  I’ll post them here when I get them, with just about whatever text you want for each picture, or even none, if you’re a person of few words!  When you’re done, pick someone to send it to that you know will continue Fairfax’s trip.  If you don’t want to have anything to do with this, email Marissa and we’ll make arrangements to send it back to her, with no cost to you, so I can restart the journey.

When I read about the project, I immediately volunteered to host Fairfax here in Southern California.  I received the bunny last week and have pondered since then where I wanted to take him.  Eventually, we will visit Memorial Park and take a ride in the swings.  For now, I’ve got him settled into the rocker in Evan’s room.  It’s where I held Evan the first time I realized he truly was having seizures.  It’s where I spent many an afternoon rocking him afterwards, worrying, wishing for a brighter future.  And it’s where I sit most nights now, missing my son.  I think Fairfax agrees with me–it’s definitely the best seat in the house.

The Bakeless notice from the current issue of Poets & Writers.  Something of a writer’s dream come true.  Nay, very much a writer’s dream come true.  Today I let the news sink in a bit more, marvel at the fact that Evan’s and Ellie’s story will be read, and that my son, the boy who could not see or speak, was the one who taught me how to tell that story.

Tomorrow, a post about knitting, friendship, and this scarf.

Today, right now, another trip to Lowe’s, for more rollers and paint.

As we find our way to our new normal, each day I wonder about which goodbye I might muster in each moment, which changes I can manage and those I’m not ready for.  There is a stack of medications above the sink that need tossing, but I don’t want to see the empty shelf once they’re gone.  Evan’s room?  Nothing will happen there for a while.

It used to be the case that I’d take myself to the library to write and revise and study; now that Evan and his caregiver aren’t here during the day, I could stay home in the quiet.  I’m still not sure what I’ll decide about that one.  I suppose I’ll know come September.  During this time of in between, I remind myself to take it one wall at a time, one decision at a time, one moment at a time.  Right now, the Girl wants a Filet O’ Fish from McDonald’s–that I can definitely muster.

Honey Beige.  Turns out to be an ivory-pinkish-tan, almost yellow in the evenings.  I think it works.

This summer, my daughter has graduated to a big girl bike, one her own mother might ride, and she’s been taking rides around the neighborhood at dusk with friends and neighbors.  Yesterday she went as far as the ice cream shop in town, taking back routes as instructed, so as to avoid traffic on the main drag.  “That was so much fun,” she announced when she returned.  “We’re going to do it again tomorrow!”  This from the girl who didn’t let go of training wheels until she was seven, maybe even eight years old.

In the morning, I can feel fall too, when I let out the dog, or in the sounds that wake me.  The August birds up here always sound different from those of July, and in September after the gulls and crows start their migration, soon come the parrots who set up shop, crowning the eucalyptus trees all over town, all the way till March.

My son would have started first grade this fall, another year in the new school he entered last fall.  We’d march him into his classroom for another year of goals, objectives, hand wringing, behaviors and more.  Instead, I am thinking of this summer ending, his last summer, and finding at least a bit of peace in the light changing, the birds coming and going, my growing daughter on her own night time bike rides.  I’m learning that if I know how to look for it, there truly can be comfort in the things that continue, the natural cycle of beginnings and ends.

Tomorrow–update on the paint.  Here’s a preview:

Ceiling painted, walls prepped and primed, the whole house taped like up like the Greek flag.

In the book on grief by my bedside, there is a mention of departed loved ones coming back to us through dreams or visitations, along with the caveat:  try not to fret if these visits don’t arrive.  They may, they may not.  Some mourners speak of frequent conversations and appearances from loved ones, others not so much.

One recent afternoon I did indeed feel the presence of my son lying next to me on the bed, and yet the conversation felt very contrived on my part, as if I were making great effort to conjure him.  In other words, we had a nice little talk that was more for my benefit than his.  This past Saturday, a friend from my regular yoga class presented me with a lovely, koa woodblock, with a space carved out for a tea light.  “Evan came to me the other day,” this friend told me, “And he said, ‘Tell my mother I love her.’”  On the back of the block are engraved Evan’s birth and death dates, along with that message:  I love you.

That night I had a dream in which Evan and I were on the playground at his school.  I held his hand and as we walked, he said to me, “Sorry, mom.”

“What did you just say?”

“Sorry, mom,” he repeated, as if I hadn’t heard him the first time.

“Evan!  You can talk!”

In the dream he just smiled, as if it had been a secret he’d been keeping all along.  And then we simply started walking again, the news right there between us.

After Evan died, a friend suggested collecting funds to provide shade for the swings so that other kids and parents can enjoy the park all day, year round.  Nearly a month later, the donations keep coming–I heard from my dear friend M. today that they have topped an amount I would never have predicted, and yet one that will surely enable us to provide a beautiful patch of shade for the swings Evan loved so.  Here is a link to what I have in mind.  I’ve seen these at several other parks around town–they are permanent structures that can withstand winds up to 80 miles per hour, and provide 90% protection from UV rays.

So cool, so Evan.  Wherever he is, I just know he’s having a great laugh with his buddies.

Rock on, Little Man.

[ETA:  Here is a link to information on how to make donations.  I'll also put a permalink in the sidebar in the coming days.]

Fragment the first:  when picking paints, our palette is always colored by what we see.

Apparently I have picked a color that resembles nothing less than the 70’s living rooms of my youth.  I’m hopeful that despite the presence of “beige” in the paint’s title, we’ll find a way to be not modern, but at least contemporary once the paint goes up on the walls.  Bobble heads and cuckoo clocks perhaps?

Fragment the second:  our sense of justice is always colored by what happens to us.

Here is a shot of the plumeria tree my friend planted in her yard several years ago.  Over lunch she told me that she and her husband had nearly taken it out of the ground many times, since it never bloomed.  “What’s the point of a plumeria that doesn’t bloom?”  Then she told me that a week before Evan died, the plant suddenly had blossoms.

Fragment the third:  peace and grace are colored by how we perceive things.

In the mail yesterday came a baby agapanthus, boxed and swaddled, with a frail deep purple blossom at its top.  Another dear friend sent me the plant, in honor of the mention I once gave the existing agapanthus patch in my front yard.  If you read through that link, you’ll see it contains the story of Evan’s first big independent walking.  Today, I am grateful for the reminder of my son’s victories, because they were always so triumphant.

Fragment the fourth:  the future is colored by how we view the past.

Last night, the Husband, Josie Girl and I all found ourselves in Evan’s room, Josie jumping on the trampoline, the Husband lounging in the foam therapy pillow, me in the best seat in the house, doodling in my journal with a big rack of gel pens recently acquired from Costco.  As a family we remembered and talked about our missing member, and then Josie Girl jumped like a maniac, channeling her wild man brother.

So you see friend, even in my silence there was no need to worry.

Take one grossly patched wall, one lost, grieving mother, a new designer vacuum, and a desire to fill the dog days of summer with paint and you have the story of the vacuum that was too good to vacuum. Yesterday I pulled out the electric sander loaned to me by the babysitter’s dad and went to town on the grossly patched walls, leftovers from at least two years ago when the electrician blithely chopped away at the drywall and a different handy man came along with too much spackling paste.

In an instant, the sander had sprayed a cloud of plaster dust into the air, and when I turned around to assess the damage, the damage was already done:  my entire living room, covered in a thick, white mist, particles happily drifting to the floor.  Crap.

Since there was no turning back, I did triage with some drop cloths and realized the clean up would simply be worse than the sanding job itself.  Once the patches were finished off nicely, I went into the garage for the vacuum cleaner, only to realize that there was simply no way I’d take my beloved Miele, with its perfect buttery yellow glow, and allow it to even touch the thick layer of plaster dust covering the entire living room.

Voila, enter the Mighty Mite.  Chipped, beaten, maligned and worn.  And, in this case, just the ticket.  Glad I kept you, MM, Eureka, The Boss.