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Thursday, October 29, 2015

The Plight Runner

Dear Josie,

Last weekend was rough.  There's never any rhyme or reason to when it comes out of nowhere.  I'll be dancing or drinking wine, it will be sunny and seventy five on a patio somewhere and it will hit me.  My daughter died.  I had to deliver her lifeless body in a cold hospital room as my husband cried beside me, and suddenly I want to go home. 

It's strange, the handling of that part of the grief.  The training required, like a marathon.  I guess that's the perfect analogy because sometimes it feels like I'm running with no end in sight.  Sometimes my head tells me to just stop, because every muscle aches and because I can't forget and I can't catch my breath, but my heart still tells me to go.  So I go, but I'm not sure for how long.

I think people look at me now and assume that I'm fine.  Actually, I'm certain some do because I can tell.  Their eyes are different than this time last year.  I'm sure they see your brother and that he perpetuates this notion.  Because he's so adorable and perfect and miraculous.  And I'm not sure which hurts more, that they look at him and forget about you, or that they think I have. 

The other day your uncle spoke to my classes.  We are learning about traumatic brain injury, and I doubt there is anything more applicable than his story. 

I remember arriving to the emergency room that night, seeing him lying there.  Watching him struggle to breathe before the intubation.  Flailing chest and bleeding ears and eyes closed, and not knowing if they'd ever open again. 

It feels strange reciting these injuries in my classroom, to the blank stares up at me, this lady with all the answers.  Twelve bilateral rib fractures.  Right temporal skull fracture.  Cerebral edema.  Hemopneumothorax.  Left frontal parietal lobectomy.  Ruptured ear drum.  Broken scapula.  Broken jaw. 

I remember staring at one of the cuts on his face that night. A superficial wound in comparison, bleeding onto the muddy pillowcase and thinking how I wish we cared about that one.  Because if we cared about that one it would mean the others weren't so bad.  But they were.  Very, very bad and so no one bothered to list the cut on his face with the others, and for some reason it was my focus.

When you died there was a HOUSE marathon on the hospital television.  People were crying all around me, but I was concerned that Cuddy's mother's artificial hip was going to kill her.  I was actually centered there for a time, while my induction progressed through the night.  There were fleeting moments where I'd remember what was happening, that the very worst of all that I will (hopefully) ever endure, at 28, was happening right now.  I could hear this voice in my head as she told me it was bad.  Turn off the TV.  This is really, really bad. 

Only I couldn't.  It was like some defense mechanism, that my mind wouldn't allow for the full comprehension.  Not yet.  It was like I was running beside myself, coaching her through but not really feeling anything, and these spurts of understanding would surface and permeate.  And then later I would remember, and then I would feel it all. 

After I delivered you, the placenta did not immediately follow as it should.  They placed you in my arms and began to gently push on my stomach, and for the very briefest of moments there was a panicked thought.  Was something wrong?  Was I going to die?  I remember thinking I hope not, in a sort of disconnected way.  As I held you on my chest I thought it was a good sign.  My concern.  The forced recognition that while my daughter was limp and lifeless in my arms, somehow, for whatever reason, I still wanted to live. 

Still, there are times when I question it.   This weekend is the most recent example.  How abruptly they enter.  How rushed their alteration, these thoughts of you.  How completely someone opening a card, can break my heart. 

Why wasn't it me instead of you?  Me, held by a tragic soul as its heart shattered into a million pieces on some foreign hospital floor.   How is it possible that I might go on for another forty  years, alongside this pain?  This ever jarring, earth shattering, forever wound that I'm only just beginning to comprehend. 

The next day I met a fellow loss mom for coffee. A dear, new friend.  We talked of holding our still babies.  Scoffed at how mediocre everything seems, how things we used to stress about seem so insignificant.  Nagging deadlines and the awkwardness in the mundane, after such a horror as ours.  We laughed about the plaguing anxiety and enjoyed our five dollar lattes.  Four hours later, we hugged in the parking lot and went our separate ways.  Only our ways aren't so separate at all.  And although I know this pain, I also get to know that she's here, she's out there and in here with me forever.

I felt lighter that day, after conversations I'd have run from two years ago.  Like I'd reclaimed something important, once again.  A shock to the chest and a renewed fortitude.

And I am grateful now, to know that I can do both.

Feel my heart fall to shreds on the hardwood, and smell the coffee in the wings.


Thursday, October 22, 2015

O, Jackie.

Dear Josie,

Jaqueline Kennedy Onassis said:  "I think my biggest achievement is that, after going through a rather difficult time, I consider myself comparatively sane."

Last week we lit a candle for you.

We lit a candle for you and for thirty one other babies.

It was the International Wave of Light Ceremony, and it started at 7:00.  We finished dinner and I got out the special candles that I bought for this exact night at this exact time last year.  After scanning the closets and finding nothing but half-melted scented sets and your brother's baptismal candle, I headed to the store.  What does that candle look like, the one you light for your dead daughter once a year?  Apparently I know.

Don't ask me how they're chosen.  Candles.  Bracelets.  Cardigans.  All these things without you.  Things that should be with you.  I look at this display and I think of the other three women in the home d├ęcor aisle that day, how maybe it graces their living room shelf throughout the year.  Or maybe parts of the glass are broken from overuse.  Normal, daily, twenty dollar overuse.  Never a second thought given to the last minute purchase.  How I shifted and weighed so much in that aisle.  How I look at these candles a different way.   How a crack in that same glass might break me. 

It's strange, the things you hold.  Along with all the grief, the tangible things you hold when you cannot hold your baby.  People send the most beautiful gifts.  Silver and engraved and special, yet some of my most treasured possessions include a deflated balloon and a stained sports bra. 

When you died I searched for others like me.  This search lead me to internet forums at four in the morning and support groups once a month.   Perfect strangers.  Doctors and delivery room nurses.  Teachers.  Cashiers and telemarketers.  Accountants and Christians and atheists and radio personalities.   It lead me to people who speak foreign languages and people two blocks away.   Annie Lennox and Keanu Reeves and Michelle Duggar and Jackie Kennedy Onassis. 

What a comfort to believe that tragedy strikes once.  That the true, horrific, heartbreaking kind which is the burying of one's child can only happen once and that's it.  That the darkness has a limit.  That there exists a saturation point.  That it isn't unending or compounding.  That grim hands might stumble upon a familiar parent, eyes heavy, only to see they've already been touched by death.   Move on, they're told.  It isn't so. 

That night in the hospital when they told me you died, I learned about Jackie O.  I learned that during her first pregnancy, she suffered a miscarriage.  I learned that her first daughter was stillborn at around eight months gestation, and that she fondly called her Arabella. 

I learned that Jackie would go on to deliver two healthy children, Caroline and John Jr.  And that after another difficult pregnancy, she would deliver a son, Patrick, six weeks early.  I learned that Patrick would suffer from respiratory distress syndrome, and that he died at two days old. 

I read that her husband, President John F Kennedy, would stay in the hospital with his son while Jackie lay recovering in a separate one across town.  That he asked a staff member to dismantle her television set, because he didn't want her to hear that Patrick had died on the evening news. 

I learned that after the burial of his son, the President laid his hand on the tiny coffin and said "Goodbye."  And then he touched the ground and whispered, "It's awfully lonely here."

And I read the part I already knew.  How three months later he would be assassinated, violently and publicly while she sat beside him.  How she got up from the ICU waiting chair, pushed past the nursing staff because she wanted to be next to him when he died.

I read and I am shocked.  And inspired.  And it isn't because of the tragedies that repeatedly befell her, nor am I most envious of her Oleg Cassini inaugural gown.  As I lay in my hospital bed that night it was her words that struck me most.  Her words that were able to permeate my trembling skin and feed my soul with the very thing it so desperately searched.  Words that help me out of bed to this day. 

After the death of her infant son, it is written that Jackie left the hospital arm in arm with her husband.  She thanked the nursing staff for how wonderful they had been to her, and assured them she would be back the next year to have another baby.  She said, "You better be ready for me."

And all I could manage was, remarkable. Out loud to my silent hospital room.  Remarkable. 

Last week I lit thirty two candles and then I stopped.  I sent pictures to their mothers and I spoke their names in the air but then I stopped.  I had to stop and I started to cry, and when your father asked me why I could only say 'There's so many.'

I said it again when we released the balloons at the SHARE walk, listened to the hundreds of Patricks and Josies and Dominics and Frankies and Arabellas, watched thousands of mothers and fathers and brothers and aunts and friends say goodbye, once more and for always, into the sky.  Contemplated this balance, this isolation and solidarity with five hundred orange balloons. 

And I think how sad my life has become.  How it's awfully lonely sometimes.  How bitter and how abstract and how difficult and isolating.  And how remarkable. 


Wednesday, October 14, 2015

Forget Me (Not)

Dear Josie,

During my senior year of high school, a close friend's father passed away.  His death was sudden.  It was unexpected and it was tragic.

I remember driving to my her house that afternoon.  I was seventeen.  I was afraid.  I had no idea what to think or what to say. 

In the days that followed I spent many a day and a night with her.  I wanted to be there, I wanted to help and I wanted her to know that she could count on me.  On the day of the wake I spent seven hours at the funeral home.  Sometimes I was standing next to her, hugging her or holding her hand.  Sometimes I was just there sitting.  Just in case.

I remember the last few moments of that day vividly.  The immediate family members approaching the casket, huddled in a circle and holding each other tightly.  My dear friend was heaving, crying so violently and it is one of the most profound memories of my life to this day. 

I returned to work the next day, my high school job as a bus girl and my manager asked me how it went.  I told him. 

"That's a good friend," he said. 

In the weeks following her father's death, my friend shared some things with me.  Gifts and notes and cards, condolences from friends and family members that had been helpful to her.  I remember reading one of the cards, sent from a grade school acquaintance I believe, who had also lost a father.

"Friends mean well," it said, "but friends forget."
"I won't forget."

And I was certain she was wrong.  I would always be there and I would always remember and I would never, ever leave my friend to question who remembered and who didn't.   She would always have me and I wouldn't disappoint.  In short, I was determined to prove this person wrong. 

Only it didn't happen that way.

I returned to my normal-ish, seventeen year old life and I went about my teenage frustrations willingly, attended the high school dances and the state soccer games and Rose and Candle and graduation, and when a significant moment approached in my friend's life we would all hug her, look back and reflect on the immense absence in her life and applaud her for continuing despite it.

But I forgot how weighted her breath was, the effort required to get out of bed on those normal weekday mornings before homeroom.  I forgot how it must have felt for her to watch the dads in the carpool lane every day, how every "Father-Daughter" dance must feel like a stab wound.  A deep, throbbing, penetrating shot to the chest during the Super bowl commercial, the coffee run, the grocery store.  To me the pain was palpable during the all-important milestones.  To her it was a constant.  Always, always, always there beside her, and as we walked alongside and left for college and get married and have babies it doesn't dissipate.  Doesn't lessen.  Doesn't forget.  Even if we have. 

I read an article once, written by a bereaved father whose son passed away at the age of five. When a child dies there is talk of joining this horrendous, smaller subset of the population. This "club" of bereaved parents, and its recognition can be isolating.  I appreciated his perspective when he described this transition in a different way. In the article he explains that after losing his son he would actually enter a larger group, leaving a much, much smaller one behind:  those who have not experienced great loss. 

Because great loss is great.  It's broad and it's penetrating and it forever, and it spreads and it invades every outlook and relationship  until it becomes a part of you.  A mannerism.  A part of the morning routine, so present in your space and so mundane and so ordinary that others forget it's there.   This can be difficult, because you feel it all the time but it's not always visible.  And because sometimes, instead of "Can you make it on Saturday?" or "Would you pass the salt?"  I would rather hear someone say, "You must really still miss her."

Last year at Parent Teacher Conferences I was asked about my belly.  My big, protruding, scary belly with your little brother inside.  "Congratulations!  When are you due?"

And I must have hesitated a bit, because I found myself explaining the reluctance, my rather oddly purposeful distance from the normal excitement behind the answering of such a question, to this kind set of parents I barely knew. 

"I'm sorry if this is awkward, my daughter passed suddenly last year a month before her due date.  One day at a time, right?!" 

Smile.  Change the subject.  Don't cry.  Don't cry.  Don't cry. 

They looked at each other and the father set down the progress report. 

"Our son was stillborn," he said.  "Eighteen years ago." 

And everything changed then.  

Because the bright, beautiful swim-team standout in my Biology class had lost an older brother. And because these parents, these near-strangers knew something about me that needn't an explanation.  Their eyes became softer and their postures, a little more inviting, and for a moment the missing homework seemed all too secondary. 

Before leaving, both of them hugged me as if we were old friends.  I had to excuse myself for a moment because it was so amazing.  This immediate commiseration.  This beautiful, hopeful couple and their unexpected understanding, lifting me from the gymnasium floor.

Because I don't know a thing about them.
But I know they won't forget.



Wednesday, October 7, 2015

A Very Special Person

Dear Josie,

A few weeks ago, your older brother was "Special Person of the Week" in his Kindergarten class. Together we made a poster of all the relevant people and activities in his life, to be proudly displayed in his classroom that week.  Honestly, I did most of the work but he selected the pictures. 

There is one of our family at your tree.  I am pregnant with your little brother in this picture, and as I secured the tape he asked me where he was.  Why isn't Dominic there?

"In this picture," I responded, "Dominic is in my tummy."

"Oh," he added.  "When we were hoping he wouldn't die?"



It's crazy how intuitive children can be.  I remember explaining  your death to him the night we arrived home from the hospital.  I remember attempting to absorb some of the shock, some of the blow, although I hadn't yet felt the entirety of either myself.  I remember wanting to protect him, to maintain the innocence peering up at me from those knowing, three year old eyes.  I didn't want him to know that babies could die.  I still don't want him to know that.

We sat him down on the bed, the brand new bed in the brand new room we had moved him into just the day before, and we told him you were gone.  At the advice of our pediatrician, "Baby Josie was sick.  She is not in Mommy's tummy anymore.  She is in our hearts."

He sat for a moment, digesting this confirmation I suppose.  He looked at me, at my hand placed on his chest.  "Why can't I see her?"

Your father and I made eye contact.  Afraid.  I didn't want him to realize the finality of death.  Not yet. 

I think I said something, rambled about how we can't see her but we can always feel her, which probably only confused him more.  She is always with you but she'll never really be here.

He walked away from us then.  I can still see him approach the corner, back turned, head down, and it breaks my heart.  "Okay, Mommy."

And I think there, in that moment he understood, everything I never wanted him to. 

It is one of my biggest regrets, the abstract way we kept you for a time.  I was afraid this knowledge would harm him, stunt his emotional growth somehow or instill a hesitation to connect.  I was afraid to scare him and I was afraid to show him I was scared.  During the next pregnancy I did my best to hide the fear, but I am quite certain now that he felt it too.

It's silly, looking back.  All of the things I feared, how you might change me, how you might change all of us for the worse.  The fragile, broken version of myself I feared most, the one who might never smile again, cowering behind every obstacle in her path has never emerged.  Instead, there is someone else. 

And your brother, all of the fear and the sadness I tried to prevent him from enduring, are the precise experiences responsible for the qualities I love most. His compassion.  His unrelenting ability to live in the moment.  His confidence and his curiosity.  My brave little boy, always asking questions, always seeking to understand what many avoid.  I wish I'd have known how big you would grow his heart.  All the love and appreciation and pride he holds for his little brother.  This understanding, at five years old, how important and un-guaranteed he is.  All because of you. 

Sometimes when I watch them together it steals my breath.  There is such a reciprocal happiness, a genuine appreciation in their faces that I honestly cannot breathe.  In this life of loss I am forced to ponder much.  I will always wonder what your footsteps might have sounded like through our living room floor, or what your favorite song might have been.  I will always sense an emptiness while dress shopping and I will never, ever, hold a baby girl without also knowing how old you would be in that moment.

But I will never question one thing. 

You have made us better. 

Better able to love, to endure and to recognize.  An appreciation that is not possible before such a loss.   A better mother, a better father, a better brother.  Because of you, a better wife, a better teacher, a better person.

Every day is a testament to what you have taught us.  Every moment, an addition to your compilation. Your display, forever growing in our hearts. 

Our much bigger picture.

Our very special person. 



Thursday, October 1, 2015

Ground Control.

Dear Josie,

Last night I dreamt that I was riding on a Subway train.  I looked out the window and I saw your brothers sitting near the railway.  I called for them but they didn't seem to know me.  They didn't wave or smile, and after the train passed they turned their heads in unison.  I'm not sure why it bothered me so, but I awoke in a sweat.  Immediately I reached for the nightstand, for the Doppler that isn't there anymore, forgetting the baby asleep next to my bed. 

It never escapes me, that they could.  At any given moment they could escape me forever.  How now I can touch them and smell them and hold them, but how instantly that could change.  There are precautions to be taken, of course.  Vaccinations and supervisions and interventions, but the thought that ultimately, my children could die at any moment and there's really nothing I can do about it, is always, always there. 

Before we lost you I knew it was a possibility, but when I am most honest with myself I must admit that I didn't really think it would happen.   Didn't believe it could happen.  To me. 

Now this is my reality.  Ingrained in my every bone behind all the happy thoughts and all the functional ones there is also, always, just the one.  And sometimes it's enough to cripple me.

I remember a night when I was pregnant with your little brother.  It wasn't so long ago, my subsequent pregnancy.  My pregnancy after my loss, after your death, and it is well-documented how much the fear consumed me then.  This thought overriding all the others.  One night in particular, was very bad. 

I was listening to his heartbeat and I could not set the Doppler down.  I knew that I should, but physically, I could not.   I knew that I needed to sleep and to hope and to breathe, but I had to have that sound in my ears. I would set it aside and immediately resume, pick it up again and listen for twenty minutes or so, stop and start, on and off for nearly two hours. 

Your father arrived in the middle of this spectacle, and I'll never forget the look in his eyes as he watched me, crying, stopping and starting again like a crazy person.   Cautiously he approached me, one hand on my arm and the other pulling it away, gently, slowly he set it aside, never breaking eye contact. 

Since your older brother was a baby I would creep into his room at night, as many a parent has done, place my hand on his chest and watch it rise and fall.  Tip toeing around the stuffed animals and the blocks on the floor to slide my fingers beneath his nose, that warm confirmation, so that I may sleep again. 

After you died I stopped checking for awhile.  I guess I figured it was useless really, because I had done everything right and I still lost you.  Because could I really prevent anything anymore and because, logistically, would I make it in time?

And while it hurts to realize this, while it is intensely painful to admit that I have no control, I can only describe it as some sort of morbid release.  A relinquishing of some responsibility that never truly existed. As a parent, to accept this as truth is utterly devastating.  But somehow, in that helplessness it can be easier to breathe.  This realization never lasts, though.  Most nights I can still be found checking them, stretching and straining for that proof in the dark.  I think the most honest depiction of my life now lies in that night, somewhere between the acceptance and the reluctance, forever setting it aside and forever picking it up.

Sometimes I can believe them when they say it wasn't my fault.  I can accept that this was always going to happen.  At birth I was going to lose you.  I'm eleven and I'm in centerfield and you will never take a breath.  I am sitting in my high school Algebra class and you are going to die. 

There was nothing I could do.  There was no prevention.  No stopping.  No checking.  It was destined to occur, this most cruel thing, while I watched from the outside. 

And because one of my children is dead, I try to remember that.

Because I'm a mom I try not to.