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Saturday, October 22, 2016

What Hurts the Most

Dear Josie,

Today in one of my elective courses we spoke of pain.  Specifically, the nervous system and its interpretation of and its reactions to it.  One of my students offered that he wished these parts of the brain didn't always work.  Most agreed, eager to share their stories of emergency appendectomies and tonsillectomies and prom night breakups.  Quickly I reminded the class that pain is a perception; that not everyone interprets and feels and responds to pain in the same way.  Also I told them, pain is helpful.

When you died there was no pain, initially.  The only consideration I allowed with regards to pain was whether or not you'd felt any.  I researched things like fetal cardiac arrest and gradual oxygen deprivation and "does it hurt when your heart stops".  I was maternally, unhealthily preoccupied with what the last few moments of your life must have felt like, while I'd been oblivious to your impending death just inches above, relaxing in my Sunday slippers. 

I cannot pin the moment I allowed myself to feel it, finally, but it was far too long after you'd gone.  For months I fell into medical books, losing myself in decades of research and words I didn't understand.  I told myself that I wanted to know but the truth was that I didn't.  Looking back, I can say that I was so focused on the logistics of what took your life that I didn't allow myself the realization that something actually had.   And as a result, much of my grief, and my interpretation of what happened to you and to me, was delayed. 
There are times I still cannot believe this is my life; that my daughter, my baby, actually died.  I was always the person to whom silly things happened, the ones that make for good stories later.  In high school I wrecked the brand new family car one month after being allowed to drive it.   When I was five my grandmother wrapped all of my Christmas presents, accidentally writing your aunt's name on every one of them.  There is a home video we all love to watch, and I'm sitting there quietly as she opens the fifteenth shiny package.  And she holds up the purple "My Little Pony" socks, obscuring my face from the camera view, shouting "Mommy!  I got another one!  Again!"
When you died it wasn't funny anymore.  I didn't want to be the random, statistical anomaly.  I didn't want to be special or different.  This beautiful gift I'd been given, this gift so many get to open and hold and take home no questions asked and here I was, being forced to walk away empty handed.  Everyone was treating me carefully, thoughtfully,  their faces soft and their words softer but all I wanted was to be the normal one, blending into the scenery with a daughter whose heart was still beating. 
I did all kinds of things to trick myself into believing nothing had changed.  There was the time I went to the movies alone, one of my all time favorite things to do, and cried through the entirety of "The Art of the Steal".  There was the day four months after you died, where I thought it a good idea to meet a friend and her daughters to shop for matching sister outfits. I remember watching her hold up one perfectly adorable pink baby dress from across the store and suddenly feeling faint.  Of course there was the time I finally called the insurance company to inquire about returning the unused breast pump they'd mailed me.  I'd been staring at it in the box for weeks, unsure of what to do and when they asked why I wanted to send it back I didn't tell them the truth. Instead I vaguely, calmly explained that it hadn't met my expectations.  And they passed me around from department to department in an attempt to figure out what the hell I was talking about, and what the hell to do with my breast pump.
"Does it work?" 
Yes, of course it works. 
"But you're not satisfied?" 
No, I'm not satisfied. 
"How long have you had it?"
Two months. 
"Can you explain?" 
I just don't like it.

Of course it's obvious to me now what wasn't then:  The grief and the love, they cannot separate.  You don't put one down and leave the other; cannot set one aside for a later, more appropriate date.  How I longed to hold you and feel one of them for a time; just the love or just the pain, back and forth until I was ready, until I was prepared to feel them both at once.  Only the moment you died they became one forever.  What I was trying to do then was like pulling skin from bone.   
I tell others now, "indulge in your grief."  Invite it into your living rooms and your dinner tables.  Sit across it and study every mole and tale and idiosyncracy, and when it hurts do not run; let it guide you.  Listen as it calls for you to feel with every ounce of who you are now, for the love we have made of our children knows no match.  This love who scans the abyss, unfazed.  This love who grows taller in their absence, still.  Own this love who holds you now, who holds your children.  This honest love, this painful, painful love, this bravest love; and know that when the pain is big,  it's because the love is bigger. 


Monday, October 17, 2016

Really random thoughts: Then and Now.

It's three days after you died and there's a knock at the door.

My eyes open.  Swollen and crusted from tears that never fell and tears that wanted to, drying in pools on the lids, seeping out the sides. 

It's bright.  Too bright for my grief hangover.  I swing my legs over the side of the bed and stumble down the hallway.  The front door feels light and I'm confused. Everything is heavy now. 

A man holding flowers beams down at me, "Wow!  Someone just left the hospital, huh?!" I look down through cracks of matted hair, unwashed for days.  Three days.  It's been three days without you.

He nods at my arm.  I follow to the bruising on my elbow and wrist.  Plastic bracelets over crusted blood where the IV entered and left, as you did.  Track marks from a high I'll never reach again.   

"Here," he hands me the flowers.  They feel heavy. 

 "You should see the other guy!"  He jokes.  I set the flowers at his feet. 

"She's dead," I say. 

I turn to shut the door and I realize, it's no longer clear who I'm referring to. 


It's eight weeks since you died, and it's my first day back to work.   I'm standing in front of my seventh hour in a skirt and tennis shoes.  Comfort takes precedence these days.

I'm in awe of the words as they leave my mouth, how they flow so freely with your face in my mind. Can they tell I'm shaking in my Sauconys?   Can they tell it hurts to return to this room?  This room where we talked of you, hoped for you.  Can they tell I'm not the same?

 I'm using words like "it" and "these things"  and "passed".  It will be months before I can say you died out loud. 

I'm brushing it off because I want them to.  I don't want to acknowledge the horror of what's happened. 

I'll be okay, I tell them.  These things occur. 
I show them pictures of your tree. 
We've met some people who know what this is like.  It's helped us very much.
I've missed you all, I loved your cards.
I'll be okay.  Thank you.  I'm okay.

There's a girl crying in the back row.  Softly, then louder, shoulders heaving. 

I try to ignore her.  Has this happened to someone she knows?  A family member?  I haven't thought this through...clearly. 

The bell rings and I call her over.  All the other students leave.  She's sobbing now, chasing breaths. 

"I'm sorry, Christina,"  I say.  "I'm so sorry I didn't know." 

She looks at me confused. 

"Mrs. LaFata," she says.  "I'm crying for your baby."


This weekend was the SHARE walk for 'Pregnancy and Infant Loss Awareness'.  We walked for you and held signs and decorated t shirts with your name on the back, and I dressed your little brother in rainbow leggings.  As the names were read I got to thinking. 

I'm sure most people think I'm used to this life by now, but I'm not used to this life. I wish there were an answer for how long it will take for me to accept that you died.  Have I accepted it?  Is it acceptable?  In the literal sense and the figurative one.  What kind of a mother accepts the death of her child?  I imagine one day far from now, I'm hiking up some picturesque mountainside and I reach this level of clarity at the top, and it feels like you're telling me it's okay.  It's okay to let it happen.  And my hands are up in one final, desperate surrender. "Okay," I say to no one.   "You win."

But I think it's probably more like a slow, incremental acceptance.  And so maybe I'm already partially there, and then everyone is kind of right.  Or maybe it isn't acceptance at all.  Maybe it's something else entirely.  Maybe I'll go to my grave in defiance, having never accepted a lick of it.  Even if it brought me joy.  Even if it's beautiful. 


Yesterday at a red light I googled "How many days since February 23, 2014?"  Someone made a website that figures this out, and so now I know.   


It's 967 days since you died and your little brother is learning to speak.   He'll point to a truck and give it his best.  

Today he pointed to your bear.  I had taken it from the armoire for a picture and it was there on the nightstand.  He reached for it and I said "Josie Bear".  It was the first time he has ever tried to say your name.  It wasn't remotely close but I  broke down.  Your father entered the room then, surprised by the tears.   He asked what happened but for nearly five minutes I couldn't speak.

Last week your brother asked me when he was going to get another baby.  I laughed.  Then he asked me if I was scared.  "Are you scared the next baby will die, mommy?" 

At this point there's no sense in lying.  I'm scared all the time.  The thought of being pregnant sends me into a panic attack.  If I'd known how hard it would be I'm not sure I could have done it.  I'm not sure I could do it again.

Just then I catch a glimpse of your little brother's feet in the rearview.  Perfectly bare, chubby, baby toes.   And he's kicking them up and he's grabbing them, and he's babbling something out the window.  And his voice is something beautiful, intoxicating, coaxing even.  I smile.  Then I realize I'm veering. 

Wednesday, October 12, 2016

On Life Outside Bubbles.

Dear Josie,

When you died I worried about one person more than anyone else.   . 

I think it's normal to shield your children from the dark parts of life.  I tell myself as much when I lie to your brother about something awful he's heard on the news.  I skim over the scary details and I deny and oversimplify.  Of course the monsters aren't real and the people in the accident are fine. I make the afterlife sound fun, never acknowledging the fact that the unknown is what people typically fear most.  I let him believe that the world is full of good people to whom good things happen; never so much as hinting that very bad things happen to these people all the time, until I had to.

Imagine the horror that is to realize your bubble has not only burst, but with its implosion came the obliteration of a three year old's bubble as well.  Your three year old.  That night I kept replaying my child psychology professor's voice in my head:  "A child's sense of security is the single most significant developmental factor, and the most devastating to lose."

I remember the initial shock giving way to this concern almost immediately.  Looking back I'm certain it was my body's way of not allowing me to focus on what lie ahead.   The nurse placed her hand on my shoulder and I asked for the phone.  They had just sat down for spaghetti dinner when I informed your father that your heart had stopped beating.   "Take Frank to my sister's," I'd said. 

When he walked in the hospital room thirty two minutes later he hugged me. Between sobs he asked what was going to happen and if they were going to give me medicine and if we were going to see the baby and if I was okay, but I could only focus on your brother.   "This can't change him," I insisted.  It remains one of the dumbest things I've ever said.

That night we agreed to tell him everything.  We would always welcome your presence in his life, however sad and however it manifested.  It would be known that in your absence from us, you would remain a part of our family forever.   We would never shy of speaking your name and we would never, ever fear you.  We did our best to present your death  to him as though it were something very sad, but survivable.  This proved to be most difficult for me, as I didn't yet believe it myself. 

In any case, I was sure we'd done it wrong.  And in the early days I envisioned him scarred forever, huddled in the corner of his kindergarten classroom, refusing to partake in carpet time or dodge ball.  In my skewed version of the future I saw him crying a lot for trivial things and forever clinging to my leg.  Of course he'd grow antisocial and of course he'd be terrified to try anything new.  As a young adult he'd become preoccupied with death, bringing it up whenever possible.  He'd have trouble making friends and he'd develop a fear of leaving the house.   I prepared myself for the calls and inquiries from concerned school teachers and counselors and soccer coaches.  "I'm sorry," I would say.  "When he was three his baby sister died inside of me.  We've done all we can."  And they would nod, eluding to an understanding I'd pretend to believe they possessed, and then later they'd talk about me in the teachers' lounge.  "So awful," they'd whisper.  "He could have been such a nice boy."

I often wonder why I ever worried about him at all.  Your brother, the most social, most compassionate, most enthusiastic lover of life on this planet.   Your brother, who holds me together and who pulls me from corners onto carpets, just bursting to share you with the world.  The tiny three year old who taught me that life is worth fighting for, even when it isn't and the strong, knowing six year old who hugs his brother fiercely, as though he knows he was never a guarantee.  Most days I just stare in awe of who he's become; how much better and well adjusted and emotionally mature he is, having known you.  This knowledge that most kids his age don't possess; this experience most adults run from, giving way to something that should never be feared, only celebrated.

The day your baby brother was born your father left the room to spread the news: a beautiful, healthy, baby boy had come screaming into our lives. 

He told your brother first, whispering to him in the doorway of the waiting room.  I'm told that he beamed, and that he turned to the small crowd and exclaimed, "The boys won!"

As they entered the room there was a look of wonderment in his eyes I will never forget.  I captured my favorite shot from the hospital bed as their eyes met for the first time.   How patiently he'd waited for this moment.  How carefully, how lovingly he'd looked him over. 

Hours later in our private room I watched them together, not yet fully believing it was happening.  The large pillow propped beneath the tiny elbow, the proud big brother smile, and the silent acceptance that my subsequent pregnancy, the second most traumatic thing I have ever endured in my life, was over. 

When your brother noticed my tears he handed the baby to your father, joining me on the bed.  Gently, he lay his head on my shoulder.  Firmly, he grabbed my hand. 

"It's okay, Mommy," he said.  

"We get to keep this one."



Wednesday, October 5, 2016

After You.

***I am dedicating today's post to SHARE's Walk of Remembrance and the Wave of Light, in support of infertility and pregnancy and infant loss, and shattering the stigma.  Click here for a list of the amazing, courageous bloggers on the tour, leading up to Pregnancy and Infant Loss Remembrance Day on October 15th***

Dear Josie,

The other day I drove three miles for a stolen brownie sundae.  With pecans. 

It was Sunday night.  It was jacket weather.  I got home and your brother read "The Magic Fish".  Afterwards I found three toddler shoes in the trashcan.  Your father and I put the boys to bed and ate ice cream and watched political coverage and fell asleep on the couch.  Every second was so beautifully ordinary, so nearly complete.  It's nights like this I can trick myself into believing we're normal. 

When I was little I would rack my brain for what bothered me most about a problem.  Rarely was it ever the "problem" itself, as I saw it.  Mostly it was my skewed version of reality, my fear of confrontation or my need for reassurance.  For weeks I could over-analyze and scrutinize and pick apart in an effort to logically explain it away; to overcome.  I have searched it now, with regards to you.  What bothers me most about your death?  It's not possible.

As a mother, I like to go first.  I like to make sure that it's safe; that it isn't too scary or too cold or too tight. I look both ways for the tiny feet behind me and I test the macaroni, blowing and waving onto spoons as chubby, impatient hands reach from their highchairs.  If there's a hit I'm going to take it.  If a tongue is to burn, it is mine.  When you died that was stolen from me.  There was no checking to see that the light was on, there was no holding your hand.  Despite all my worrying and fretting and nesting, you went before me in the scariest way into the most unknown place.  In an instant you were gone, and I am left to wonder, forever,  how it must have felt to leave us on your own. 

There's the concept of time now, which is also backwards. "Give it time," they say, but it makes no sense anymore.  When we visit you, standing above in our clasped hands and promises, I'm reminded that time is no longer something I trust or desire.  Without you, there is simply too much of it. 

There is also the perpetual confusion that is not knowing myself anymore, all the familiar edges and preferences;  what will upset me and who to avoid.  The unrecognizable ticks and triggers and meltdowns that grow and evolve as I do, and that I must own and face and circumnavigate.  Recently I've concluded that while it's all difficult, none of it hurts as much as the constant, nagging awareness of all you'll never do. This finite number in my head of everything you've ever touched, documented and sealed and packed away in time, never to be added upon. 

Sometimes I creep into the basement late at night to hold them, your things.  The  monogrammed rompers and leopard print Mary Janes I bought the moment the ultrasound confirmed I was to have a daughter.  The lone blanket to ever hold you , still and cold and the imprint of your head on the neon sports bra I'll never wash.  I turn them over in my hands and I wish that there were more of these threads and cracks and stains; more of these fading imperfections that exist because you did. 

Last month we hosted a trivia night to raise money for our local support group.  An idea that was nearly a year in the making, came to life on an otherwise unremarkable Saturday night. 

We began last fall by drafting a donation letter, myself and a few other local loss mothers.  Was it too cliché?  Too honest?  Could we efficiently depict what our lives had so traumatically become in a way that was also hopeful?  Was there enough emphasis on the gravely unfortunate necessity of our cause? We met for coffee and we typed words and we deleted them, and then we typed them again.  We sent them to hundreds of businesses.  We bought stamps and envelopes and made copies.  We procured an emcee, and we walked door to door in the rain and the cold and the heat.  We drafted professional email requests and navigated lengthy, corporate websites and with every rejection notice we tried our best not to cry, and then we did it all again. 

Gradually, slowly, they began to trickle in.  HUNDREDS of tangible goods and sought- after services and stories and hugs from perfect strangers who couldn't imagine and those who could relate.  We designed t-shirts with our babies' footprints in the middle and we made fliers and soundtracks and table guides.  We learned how to use a popcorn machine and we received THOUSANDS of dollars worth of silent auction items and raffle prizes and alcohol.  We displayed the most perfect, most beautiful centerpieces, asking local mothers for their childrens' stories, and we bought frames to secure them inside. We decorated pink and blue balloons and weighed them down with pink and blue drawstring bags and we walked around in shirts with their names on the back to remind everyone why we were there.

At the end of the night there was a number:  Twelve thousand six hundred and fifty-five dollars.   Every cent will meet the one hundred and forty local families whose dreams will end this year as ours did.  Silently and abruptly, in some foreign hospital room.  And when I think of all this money will do, and all it will touch, I can only admit that I've been wrong all this time.

Because there's a mother out there whose baby will receive a silver heart necklace to wear for the pictures she never saw coming.  There's a hospital bill to be halved and family counseling sessions that will happen that were otherwise unaffordable. There are cards in mailboxes for hearts that don't yet exist; open arms just bleeding to console and every fractional second of solace does not belong to us; it belongs to our babies. 

Perhaps your impact isn't so fixed.  And these traces of you that bring me to my knees, perhaps there's more to come. I see it now, and it helps.  I could send a thousand letters.  I could write the speeches, lift the fingers and the legs and the hearts but I won't accept the credit because it was never mine.

You touched every bit of it first.










***Thank you for reading, and for helping to #shatterthestigma surrounding infertility, and pregnancy and infant loss.  Be sure to check out Jen's beautiful piece from yesterday on the importance of sharing our stories of loss and love, and don't miss Jennifer's post coming this Thursday!  Lastly, please be sure to share your own Walk of Remembrance photos on social media, using the hashtag #ShareWalk2016, and join us in lighting a candle in remembrance of those we have lost at 7pm on October 15th, using #WaveofLight #pregnancyandinfantlossawareness ***