Tuesday, October 30, 2012

Letting Go

Letting go.  Not of Ethan...most certainly not.

I am trying to let go of the intense emotions associated the trauma of Ethan's death.  Trying desperately to cling to the love and wonderful memories of our time, though brief, with Ethan.  It's a tricky balance, one that I fail at often.  Perhaps that is PTSD, most certainly some kind of anxiety disorder at least.

Writing about my trauma has become a release.  A way for me to put those memories forward, instead of keeping them locked inside.  Part of me wonders if sharing what happened helps others appreciate the layers of my grief, validating why I am such a mess.

So here goes.  Read if you want.  Or don't.

I let go of...my milk coming in 2 days after my baby died.  I had pumped and pumped and pumped but my milk dried up from stress the moment the neonatalogist told us Ethan was likely going to die.  And then it came in, when I didn't need it any longer.

I let go of...being told we had to step out for the attending to put a needle in Ethan's chest.  Of no time for formal consenting to happen beyond the quick explanation and the doctor looking to me for permission.  I let go of the "well if you don't do it, he will die right?"  I let it go.

I let go of...the phone call from my insurance company congratulating me 2 days after Ethan died on the birth of my son.  "Is there anything we can help with?" the poor lady asked.  No...my son died, please don't call again.

I let go of...the terror that filled the room that first night of Ethan's life.  Of Josh and I sitting in the dark of my post-partum room, waiting for the phone to ring from the neonatalogist telling us if Ethan was going to live or not.  I let go of the terror that filled that room, being so scared to answer that phone.

I let go of...having to walk into the funeral home the day after he died.  I let go of saying "well, this is shitty" to Eddie - our friend, the funeral director, who kindly and simply replied "Yes.  Yes it is."

I let go of...having to fill out health insurance forms for my baby who died.  The letter began with a "congratulations on the birth of your baby boy..."  I let go of having to send in a copy of his social security card, birth certificate and death certificate.  The nice people at my husband's pension boards couldn't get around the death certificate.  This was the first week after Ethan died.

I let go of...throwing up on the side of the road just 12 days after Ethan died from horrendous kidney stones.  Landing me in the emergency room, shaking and vomiting from the pain while I had a CT scan to rule out an internal abscess from my c-section.  Doing this alone, crying at times, telling God that I had had "enough."

I let go of...my head being face down on that conference room table as I sobbed, hearing bits and pieces of what the neurologist told us about Ethan's brain bleed.  I still can't remember her saying those words, but I remember the gist.  I wonder if part of that is because I didn't really like that neurologist - she was young, and far too cold, not much of a bedside manner.  I wonder if we were the first family she was telling such horrific news to.

I let go of...my knowledge, perhaps parental intuition, perhaps experience as a medical social worker, that the doctors were about to tell us Ethan was going to die as we went into that conference room.  I let go of having to tell the nurse to be sure there are lots of tissues in there.  I let go of the nice fellow neonatalogist trying to casually sit next to me in that meeting.  I knew what was happening.

I let go of...telling people 8-10 times a day at work that my son died.  Of seeing their faces go from joy to horror, while trying to reassure them that I will be OK - when many times I was unsure myself.

I let go of...the intense, endless jealousy.  Of my jealousy over friends who have healthy pregnancies and healthy babies.  I let go of my annoyance with people who complain about being 9 months pregnant, with people who complain about being tired from caring for a newborn overnight.  Of the "just appreciate your blessings!" thoughts that I want to yell at those people.

I let go of...moaning in my hospital bed 6 hours after Ethan was born.  Staring out of the window at the same triple-decker in Boston, just moaning as it was too painful to sob after my c-section.

I let go of...my frustrations when people say "it's not fair" about stupid things...when I want to tell those people that "not fair" is my son dying for no reason.

I let go of...being wheeled out of the hospital, without our baby.  With a light blue memory box in my lap instead of my son or any hope of returning to get him one day.  I let go of being wheeled out the "side exit" by the transporter to give us more privacy, though he accidentally brought us to the ambulance bay instead.  I let go of that drive home - of that overplayed Maroon 5 song of the summer that came on as we got into the car.

I let go of...the well-intentioned, yet very painful, "where's your baby comments?"  I let go of the pain those bring, and try to embrace the joy that people remembered I had a baby, not just that he died.

I let go of...not being happy when I phase out the baby things.  Of being devastated that I don't get to use the bottles one more time, as I should have.  Of having to give our baby things away, because our baby didn't get to use them.

I let go of a lot.  At least I am trying to.  I am not naive enough to think I won't have moments where jealously or annoyance rear their ugly heads again, but hopefully those will be less frequent.

Monday, October 29, 2012

Going Back.

We went back yesterday.  To the Brigham and Women's Hospital.  The NICU and Labor and Delivery floors hosted a Service of Remembrance.  On the way in Josh and I were questioning how many people would be there.  Clearly, sadly, we could not be the only family whose baby died there this year...yet how many would go to this?  I really was hoping that there would be more than just a few families there - for some reason.  Somehow I thought it might feel less awkward if all eyes were not on us.

The elevator doors opened to Maryann.  Maryann who handed me my sweet baby Ethan to hold for the first and last time.  The Maryann I handed my baby to after he died.  The Maryann who placed her gentle hand on my should and said that Lord's Prayer with us as we baptized Ethan.  She immediately embraced Josh, and then me.  She warmed right up to Caroline, Jackson & Ryan - casually helping me wrangle them as we registered at the table.  

I thought we might run into some of the staff we knew, I had hoped we would.  But then there she was - one of the few people on this earth who had actually met Ethan.  It was a bit of a punch in the gut when I saw her...part of me was brought right back.  The last time I saw her she was handing us a light blue memory box, with a few momentos - a clip of his hair and his footprints.  But then the love came forward and I was happy to remember that moment, and happy to see our Maryann.  Turns out she is the one NICU nurse on the bereavement committee - just so happened she was assigned to Ethan the day we took him off of life-support.

I looked around and the room was actually a lobby.  There were going to be a lot of people there.  Perhaps more than 150 total.

They had volunteers to the side with kids' tables and activities.  Caroline was very happy there.

The service started and one of the high-risk OBs did an introduction.  He immediately started to cry, acknowledging that this is the one time each year he does so in a public speaking forum.  He said that he is an experienced public speaker, yet appreciates that this is the one place he gets emotional.  It's touching to see a distinguished man, of professional stature, crying at our pain.

A few readings later it was time for parent reflections.  As discussed in an earlier post I had written something.  5 parents spoke, just five.  Josh and I being among them.  

I read my letter to Ethan.  Cried during it, blubbered a bit at the beginning.  The staff next to me were crying and lots of people in the audience were crying too.  But I am proud that I spoke, it was the right thing for me.  Then Josh spoke - he prayed actually.  He wrote a poem, it was breathtaking.  I am so proud to be his wife, to have had four children with him.  I am honored really.

I looked out across the sea of faces there, all members of this terrible club we cannot escape.  The pain was in the faces there, the sadness was palpable.  But the love and strength in that room was undeniable.  We all get up each morning, get out of bed and breathe in and out.  Many there had other children present, though many did not.  I saw the loving, longing looks of those in the room.  Those who should have little ones to hush or entertain but did not.  

Each baby's name was read as their families placed a star on the wall in their honor.  There were 3 Ethan's named.  3 Ethans died.  Unbelievable.  There was a Samantha - that was the name we were going to give to Ethan if he had been a girl.  There were 2 families who had all 3 triplets die...unbelievably devastating.  The family sharing the table with us had lost one of their twins.  There were a lot of babies honored and remembered.

Afterwards several people thanked Josh for his prayer...clearly he brought many a sense of peace.  People thanked me as well, saying the words were reflective of their own pain and love.  One man who spoke with me spoke of losing his daughter Jilly 3 years ago.  Her name was Jillian, though they affectionately remember her as Jilly.  You know, the love that goes into developing the nickname for your child.  His sweet Jilly, gone far too soon.

Anyway, it was a beautiful day.  The older kids left with a sock monkey each - a gift from some toy company.  Ryan chose to finally experiment with his voice during the quiet service - figures.  Jackson went to the bathroom a million times.  But I wouldn't have changed any of it, besides our cause for being there.  How blessed I am to have someone to hush, to have someone to take to the bathroom at inconvenient times.  Trust me, there were many in that lobby who would longed to be the ones at the back of the room entertaining children.  

Recognize your blessings all...and try to lesson your complaints.  Parenting isn't easy, but you are blessed to have that responsibility.  Be thankful that you are pregnant, even in its challenges.  Be thankful that you have an annoying toddler throwing a tantrum.  Please remember that, as there is a large club of people who long for that honor.

It was a lovely event.  That's what the valet called it.  "Are you here for the event?"  Guess so.  I am thankful we went.

Thursday, October 25, 2012

In Your Honor, Ethan.

The other week I sat down, trying to think of what to say at an upcoming remembrance service at The Brigham and Women's NICU.  We chose not to have a funeral for you Ethan, as I did not think I could handle a public service at that time.  So when I sat down to write something meaningful, yet brief, to share at this NICU service...I realized that I was writing a eulogy.  A eulogy for my son, my baby boy.  No parent should ever have to do this.  Yet, here it is...

There are no adequate words here my sweet boy.  No words can embody the love I have for you, or the pain your absence brings.  They are reflective, you see.  The depth of my pain mirrors the depth of my love for you.

We had four beautiful and terrifying days with you here in the NICU.  I held you just once Ethan, the best and hardest moment of my life.  The power your life had in four short days continues to shape me, your family and countless others for the better.

Caroline senses your presence and speaks of you often.  Do you hear Jackson yell hello to you?  He does so when you visit us as a butterfly.  Ryan likes to stop in the stairwell and look at your pictures each time we walk by them.  Thank you for making Ryan a big brother.

You are our fourth, and last, child.  On loan from God.  I know you looked just like Caroline.  Slept with your arms above your head, like she did, refusing to be swaddled.  You had the same nose as Ryan, Jackson and Caroline.  Were going to be even bigger than your brothers - 10lbs if you had made it to full term.  You liked to hold your dad's finger and to hear me sing lullabies, as your vitals would stabilize when we did.

Elizabeth Kubler Ross once said..."The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.  Beautiful people do not just happen."

Thank you for making me a beautiful person.  Ethan Michael Gray, you will always be my son.  And I will always be a  mother of 4.  Thank you for that.

Monday, October 22, 2012

The Fog

I've described my summer of 2012 as being the lost summer of 2012, as being under a fog.  I spent the end of May and all of June, July and August in this surreal world...where somehow my baby had died.  Even now, that sounds so strange.    My.  Baby.  Died.

That is something that people don't relate to.  When they hear of it happening to someone else they feel terribly...but I'm pretty sure they don't really look at their own babies, their own children and truly imagine what it could possibly be like if they were gone.  I don't blame them, I was one of them too.  It's too scary, too threatening to fully consider what that could be like.  It's an all encompassing loss, trauma that is impossible to grasp the breadth of it unless you too, have tragically experienced yourself.  I consider myself to be an empathic person.  I'm a social worker, a trained therapist.  I have worked primarily with either children who have survived terrible abuse/neglect or adults undergoing treatment for cancer.  There is no way I could have appreciated how intense this specific grief is.  "Losing" a child is commonly considered "the worst" kind of loss in our society.  I can see why.

So I'm rambling a bit.  Today I had therapy, it had been about 6 weeks since my last session.  Funny how I can be a good therapist with others, though have limited insight for myself sometimes.  I've been speaking about this "fog" of the summer, and referenced that it has now lifted.  My therapist made a simple statement, and all of a sudden my eyes opened.  This "fog" was actually shock.  I was in shock.  Real shock.  Not the kind that is casually thrown around in simple conversation, but rather the kind that follows an unexpected trauma.  The kind that is talked about with anxiety disorders.  Yes, that has been my summer.

The fog has lifted...the shock has abated.  And I am left trying to sift through these memories of my time with Ethan.  I run towards those memories, as I only have 4 days to draw from.  But as I run towards those memories, clinging to them - clinging to Ethan, some of the other memories become intrusive.  Here are 3 examples.

* Several times during those 10 days on the ante-partum floor nurses educated me on what to do in the case of a "cord."  As my water had partially broken it was possible for Ethan's umbilical cord to come out (sorry for the graphic info, but this is my journal so I am trying not to edit too much) unexpectedly - a prolapsed cord.  This is a serious emergency.  If that happened I would have to flip over on all fours, dropping my shoulders and head, hit the alarm bell on the wall, yell "I have a cord" and take a few others steps.  In the moment I dealt with this with minimal emotion but now, looking back, the terror that it strikes is real.  What did I go through?

* There was one time in the NICU that Josh went down to see Ethan before me.  I was pumping in my room and told him I'd be right there, but to go ahead.  I shuffled into the NICU, rounded the corner to look into the room that had Ethan and about 7 other babies.  I saw Josh sitting next to Ethan's isolette and Dr. LaRue was clearly telling him bad news.  I'll never forget it.  More bad news.

* This next memory is the one that I will never forget.  When it happened, I knew I would remember it for the rest of my life.  There was a new mother, her first children (twins) were born the day after Ethan.  They were quite healthy, just a little small (they actually left the NICU before Ethan died).  I was there at Ethan's side when she came in to meet her babies for the first time, right after her section.  She and her husband were often there when something happened with Ethan.  So there's the background.  I rounded the corner again, by myself again.  Josh was home with the older kids.  I had finished pumping again and walked into Ethan's NICU.  The first face I saw when I rounded the corner was that other mother's.  She looked at me, and it was evident she was crying.  A lot.  She was puffy, the red faced kind of puffy.  Her babies were fine, sitting in her arms.  We made eye contact and I realized that she was crying because she knew my son was going to die.  She had been there when Ethan's brain had started to bleed.  When everyone ran over to his bedside.  Then I looked by her to Ethan's isolette and saw more people than I could quickly count.  Maryann, his nurse, put her arm around me and walked me to Ethan.  Sat me in the chair and rubbed my back as Dr. LaRue explained what had just happened.  I remember looking over my shoulder and seeing a partition - you know it's not good when they bring out the partition to give you "privacy" from the other parents.  I didn't need privacy to nurse my child, I needed it to hear that my son's brain had started to bleed...our biggest fear was starting to come true.  I looked up to Maryann and asked if it was time to have Josh come down.  She gave a simple nod with tears brimming in her eyes.

Now that I am no longer in shock, I am feeling the intensity of these traumas.  And it is very difficult. So my therapist and I are considering EMDR to help me move through these memories.  I guess I am moving forward in my grief, and the shock is now over.  Now it's time to face the intensity of what happened.  Thankfully I have a wonderful therapist to help me do so.  And I always have God by my side as well.

Friday, October 19, 2012

No 5 month sticker here.

You've probably seen those silly month-to-month stickers parents put on their baby's onesie.  You know, the ones used for the watch-me-grow pictures?  They're all over Facebook.

There's no 5 month sticker here.  Not in our home.  Today Ethan should be 5 months old, yet instead he is 4 days shy of being gone for 5 months.  Those silly stickers weren't around when we had our older 3 kids.  To be honest, I don't even really care for them.  Who knows if I would have bought them for Ethan.  But now I desperately wish I had the chance to.  But that's not going to happen.

I didn't realize today was the 19th until work ended.  I hadn't felt quite right physically all day, a bit strange really.  Turns out I forgot to take my little 10mg Lexapro this morning.  Part of me is disappointed that my body is accustomed to the medication -- though I know I really benefit from it right now.  At 8:00 AM a patient told me "you look skinnier!  How did it all go?"  I had to tell this lovely woman that "it didn't go well.  My son died."  And this to a lovely woman who is sitting in a chair to get chemo for incurable cancer.  And my poor friend Heather, the nurse sitting there administering a med to this patient.  Lovely Heather, so gentle and honest in her presence.  Allowing this woman and I to exchange this terribly sad news in front of her.  I'm sure it's not how Heather would have opted to start her day off either.

And then the kind remarks came my way.  And the conversation ended with a version of "things happen for a reason."  Perhaps that offers her some solace, in her difficult situation.  But I just need to say again, I don't see any "reason" that babies die.  I just don't.  And if there is a reason, how come my baby died?  When most do not?

So today was hard, a lot of tears and even some yelling in the car.  Don't worry, my kids weren't with me.  It's only the second time I have done that - but it felt good to let it out.  I know God can take it.  He doesn't scare off easily.  So today was shitty, but the last two days were pretty good.

Tonight I was talking with my sister on the phone.  Rather, I was swearing, crying and venting while she listened patiently.  I told her I am done.  5 months is long enough, I've paid my dues.  It's time to give me my son back now, please.

I just want him back.  The other day I was thinking about that question asked in stupid getting-to-know-you games.  The "who would like to meet, or spend a day with" question.  That answer if easy.  My son, Ethan.

Missing you terribly my boy.  Thanks for the two better days in a row, here's to hoping tomorrow will be better than today.

Thursday, October 18, 2012

I've fallen in love 9 times.

I've fallen in love 9 times.

I fell in love with Caroline, Jackson, Ryan and Ethan...as I carried them inside of me and gave birth to them.  Each was a unique experience, a unique love.

The other 5 times I have fallen in love with Josh.  The first time was 1998 and we were 17 years old.  We were married 6 years later.  Josh is tall and handsome.  When people who don't know him see his picture they always tell me he is handsome, and they are right.  I fell in love with Josh because he makes me laugh.  At him and at myself.  We smiled & laughed throughout our wedding -- we had such a great time.  That day I envisioned the life ahead of us with beautiful children.  I had always hoped for 4 kids, though we had agreed on "one at a time."  But I didn't envision one of our children dying, not when we were just 31-years-old, not ever.

I was caught off-guard when I fell in love with Josh for the second time.  Caroline had just been born, I mean like 15 minutes before.  I was resting in my bed at the hospital, and looked over to Josh who was sitting in the chair in the labor and delivery room.  He held his daughter, our daughter.  He transformed into a father before my eyes...a beautiful father.  Caroline softly cried in his arms and he quietly comforted her...gently rocking her in his arms.  "Annie, she's so easy to soothe."  I'll never forget those words - I fell in love with him again.  And it didn't hurt that he didn't run away from me when I was a hormonal hot mess with the "baby blues" when we brought Caroline home.

I was in labor with Jackson, Josh was speeding down Route 9 to the hospital at 9:30 that Tuesday night.  We barely made it to the hospital.  Apparently I asked the valet for an epidural, I don't remember it - but Josh swears that happened.  All 9lbs 6oz of Jackson came fast and furious, there was no time for any medication, ivs or even monitoring contractions or Jackson's heartbeat.  When I realized I was going to have to deliver him naturally I freaked out.  Josh leaned over to me and told me "get your shit together."  Yes, he really did.  And that's exactly what I needed him to tell me.  Jackson was born.  I had given my husband a son.  A huge, healthy son.  And that was the third time I fell in love with him.

Ryan...our charismatic child.  We were told that Ryan was 10lbs by ultrasound a few days before his birth.  It was time to get him out, if we wanted to avoid a c-section.  Josh walked around the neighborhood with me the night before Ryan was born.  I waddled, and he walked.  I was eating M&Ms...funny, the things you remember.  I awoke that night to contractions and we decided to head on into Boston - I didn't want to show up too late, as we had cut it so close with Jackson.  I loved that Josh had an app on his iPhone to keep track of the contractions.  It was all very exciting, yet nothing new to us.  We are very blessed to be able to say that.  After I got settled into the L&D room Josh went to the cafeteria to eat breakfast.  I was comfortable with the "routine" and Brigham and Women's makes a good omelet & hash browns.  I clearly wasn't allowed to eat, so he stayed in the cafeteria.  Dr. Mansour walked in, announced it was time to push - "where's Josh?"  Pretty sure he doesn't have the many significant others in the cafeteria when their wife is ready to roll.  I had to call Josh on the phone and tell him to get back to the room.  With the size of Ryan there was concern that he might get stuck on the way out - so there was excitement, yet a lot of praying happening during the pushing.  Ryan was born, and I fell in love with Josh again.  This time as he was an experienced father, knowing exactly how to care for him, how to swaddle him just as tightly as the nurses do...a trick learned from lots of experience.

This fifth time I fell in love with Josh, was a longer process than the others.  It started when I was put on and off of bed rest throughout the earlier stages of Ethan's pregnancy.  Josh did it all - worked, cooked, took care of a 4 y.o., 2 y.o. and 5 month old.  That's a lot of work.  Then my water broke at 27 weeks.  It just broke, or started leaking.  He drove me to Boston in rush hour traffic, somehow remaining calm.  He left that night to return home & care for the rest of our children - while I "took care" of Ethan on bed rest in the hospital.  Josh called often, skyped with me and visited me a few times as well.  He even taught Jackson how to ride a bike when I was hospitalized.  He rushed down to Boston when I told him Ethan was coming, he put on a ridiculously too small gown for the surgery and didn't complain.  He held my hand when things were dicey in my c-section.  He went up and saw Ethan for me when I wasn't able to.  He cried with me as I groaned at the news that Ethan might die.  He prayed endlessly.  Was optimistic yet realistic - not an easy task during those days.  He allowed me to be the one to hold Ethan while he died, offering me that blessing.  One that I can never repay.  We looked at each other right after Ethan died, in my post-partum room awaiting discharge myself, and declared that we would do this together.  Remember our son together.  Honor our son together.  Grieve our son together.  Live on together.

Josh has not run away from me in my darkest hour - when the woman he married has been changed by grief.  He never tells me to stop crying.  He has let me nap when I need to, or shower when I need to - recognizing that those are the only 2 things that make me feel "better" when I am desperately sad.  He made a book of Ethan on Shutterfly the week after he died.  He made that beautiful video remembering our son.

Has the road been difficult these last 5 months?  Impossibly so, yes.  But Josh and I love each other.  We are not running away from our pain, or from our marriage.  I have fallen in love with Josh 5 times, not many can say that.

Every time I hear this song I think of the vows Josh and I made to one another, on our wedding day.  Thank you for our loving me Josh, for giving my our 4 beautiful children.  I won't give up...


Tuesday, October 16, 2012

This speaks for itself.

I came home from work today to find this beautiful video Josh put together to remember our son Ethan.  It's beautiful...no other way to describe it.

My love for Josh is so strong, stronger than I ever knew was possible.  Yet this road of grieving and remembering the death of our child proves hard.  Josh and I grieve differently, and that is OK.  Healthy even.  I have found myself feeling lonely in my grief at times.  Lonely in that I grieve so visibly, it's on the surface of me.

This video is beautiful for two reasons.  It is a tribute to my blessed child, our gift from God.  And it reassures me that I am not alone in my grief, Josh is right there with me.  We walk this road together, differently but together.


Sunday, October 14, 2012

The Casualties of Grief

Sleep.  Concentration.  Weight.  Sanity.  Pure, all-inclusive joy.  The light in my eyes.

These are the casualties of my grief.  The things that have washed away with the tides.  

Sleep.  This one seems obvious.  Some nights I sleep well, but others not so much.  If I haven't found time throughout the day to grieve, I mean devote time to grieving, it interferes with my sleep.  The kids go to bed at eight o'clock, so afterwards I might write in this journal, email with a few other women who have lost their babies, or go to a website for parents whose babies have died to support one another.  But if I do these things too close to my bedtime, I replay these things in my head over and over.  I eventually fall asleep and wake up with circles under my eyes and the day's responsibilities before me.  It's exhausting.

I find it impossible to concentrate well.  Somehow I can get by at work, though there have been occasions where even that proves difficult.  Managing my blessed chaos at home I need to be the queen of multi-tasking.  Usually that is no problem.  Since Ethan died, my mind is constantly preoccupied with thoughts of him.  Often times I am thinking of him, just saying his name to myself inside my head.  Wondering where he is at that moment.  Always missing him, wishing he could be here in an earthly way.  When I say always, I mean it.  A portion of my mind that used to be responsible for multi-tasking is now preoccupied with Ethan.  As a result, my concentration is shot.

Weight.  Three times in the past week friends have told me that I am very skinny.  Those of you who know me, know that I always have a thin frame.  But my weight has become a minor concern, certainly a focus of my attention, since Ethan died.  I am 5'6" and have a normal weight of 115lbs, so being 5lbs underweight leaves my ribs exposed.  My pants fall off of me without me having to unbutton them.

The night Ethan died my appetite went away.  This was an experience I had never had before.  I LOVE to eat.  Sweets, healthy foods, comfort foods, all sorts.  But from that moment on I stopped feeling hunger.  I would eat because it was time to, not because I my body felt the hunger.  A disconnect of sorts.  Clearly a sign of depression.  I do feel hunger now (thanks to my anti-depressant & working through my grief), but not as strongly or as often as I should.

By the way, just sitting here writing this, I am overwhelmed with sadness.  It's the deep sadness that I have to breathe through.

Sanity.  An argument could be made that I never really had that.  But I'm pretty sure it's gone now.  I talk to Ethan...I guess I pray to him?  And I like to.  It's one of the few things that makes me feel happy.  It makes me feel like he's still here somehow.  That I haven't had to say goodbye to him completely, that I can hold onto him somehow.  On one of the websites I go to for support from other parents whose babies died, I have found myself signing a post/comment "Annie & Ethan."  What's that about?  I'm not the only one who does it, and I don't really think it's wrong.  Hell, if you are not in our shoes you don't get to judge.  Occasionally I wonder if I am living in a delusion...when I talk to Ethan, sign his name to an email to someone who "gets it."  I know I'm not really insane, as he doesn't talk back to me and I don't see him where he is not.  But he really is dead, yet I like to pretend he's still around.

Before he died, when I was happy, joyous - it was not tempered by sadness.  The purity of joy is gone now.  Perhaps it will return some day, but it's not there now, and I don't think it will return (if ever) for quite some time.  Every happy occasion brings thoughts of I wish Ethan were here too.  Family pictures - one is missing.  Buying Halloween costumes - Ethan's not here to wear the alligator costume I had for him.  His absence is constant, and so is my sadness.

The light in my eyes.  The light that shows that I am alive inside.  I was looking at pictures of me before Ethan died and since.  The light isn't visible in my eyes any longer.  I fight to heal so I can regain that light in my eyes.  I deserve to have it there, my family deserves to have it there, Ethan would want me to have it there.  But it's not there yet.  Depression, it's real - and it threatens to extinguish the light inside of me.  But I won't let it...not fully.  It flickers quietly in my soul.  One day it will return.  One day.

Wednesday, October 10, 2012

My morning reminder.

When I drop Caroline off at Kindergarten each morning I see the same beautiful children.  The kids I am speaking about are welcomed by the loving special education teachers.  Some of these children are in wheelchairs or utilize other medical equipment to help their mobility.  It is evident that their bus driver, teachers and school administrators love them.  Ryan, Jackson and I are often leaving the school building when these students are coming in.  The smiles on their faces are wonderful, and each time I see them I think of Ethan.

The afternoon we took Ethan off of life support the Children's Hospital neurologist had told us Ethan was blind, deaf, would likely have severe mental retardation and would be unable to move.  This information came at the exact time that Ethan's lungs developed the second and third pulmonary embolisms.  I mean the exact time.  The meeting had to pushed back for the attending neonatalogist to finish some procedure where he put a needle into Ethan's chest.  It didn't work, clearly, and instead we learned that his lungs were failing him at the same time his brain was failing him.

The first five hours of Ethan's life, and longer, he didn't get enough oxygen -- because he wasn't tolerating any of the ventilators or the settings they were trying.  That first night the neonatalogist asked us if we wanted them to continue to try to save Ethan, as his brain had likely suffered damage as a result.  Josh and I looked to each other, then looked back to Dr. Van Marter, and said "YES."  It would be our honor to care for Ethan, with likely special needs and all ... if it was God's will.  I'm not going to sit here and write that that was an easy thought, or that I truly knew all of the challenges that would come with parenting a significantly special needs child for their entire life.  But Josh and I did know that it wouldn't be easy, but with God's help and will we would love the opportunity to do so.  Ethan was our son, and we loved him.

So I spent four days trying to acclimate myself to the idea that our son would likely be arriving to school in a wheelchair, to be met by the loving special education teachers.  That we would likely have to move to a home that could accommodate Ethan's physical needs, as our condo likely could not.  That Early Intervention would become a huge part of our life, as would several other services.  And the day Ethan died, those needs dissipated.  But my heart remains shaped by those thoughts, even if they were just for four days.  I didn't get the chance to raise my son with special needs, but Ethan had them nonetheless.  So each time I see a child with cerebral palsy, mental retardation, or other special needs I remember Ethan.  I smile to myself, as those children are beautiful, just like Ethan was.

A few weeks after Ethan died I was sitting by myself (a rare occasion) at a little park, by the water, behind our church.  I was just trying to breathe, in and out, without crumbling under the pain of grief.  I observed a beautiful family, two parents caring and loving their adult daughter with special needs.  The father walked his daughter down to the water, taking her to see the ducks.  I have taken my older three kids to do the same there, on several occasions.  I thought that that could have been me, taking Ethan to see the ducks.  Sure, people may look at that family and see their struggles...which I can only begin to imagine how real and exhausting they are.  But that day I saw the beauty in that family.  The love those parents have for their daughter, and for one another.

At 20 weeks gestation Josh and I were told there was a strong likelihood that Ethan had a chromosomal abnormality, as assessed by an ultrasound.  We considered whether or not we should have an amniocentesis.  I had always thought I would never opt for one, as there are small, yet real, risks of miscarriage.  For the family we chose to have the test (we thought bringing our 4th baby home in under 5 years would be a challenge, so we should educate ourselves in advance of resources that may be needed) and had to wait two weeks for the results.  The results yielded no abnormality, that he was "perfectly healthy."  Ironic that he was perfectly healthy yet died 2 months later.  When we were waiting to find out the results a friend told me that people with Down's Syndrome are "angels on earth."    Amazing how Ethan wasn't an angel on earth, but ended up being taken to be an angel in heaven.

I will always think of my son when I see people with similar special needs.  My heart melts a bit, and longs as well, when I see the smiles of those I walk by on my way out of the school each morning.  Ethan continues to shape me, hopefully into a better person and mother, and I am thankful.

Tuesday, October 9, 2012

The alarms came back

The alarms came back today.  Not the ones of the NICU.  Today they were the ones from the morning Ethan was born.  When I was laying alone in my ante-partum room with my Non-Stress Test on.

Today I was at my desk at work and heard an alarm, a bell of sorts, that I hadn't heard there before.  My office is in Radiation Oncology, so I am accustomed to various noises, but this one I wasn't used to.  Work-wise everything was fine, thankfully.  But the alarm sounded just like the one I heard during that NST.

I found myself jumping backwards quickly, looking around for something wrong, grabbing my belly.  Only there was no baby there.  He's already gone.

My mind went right back to that sound.  I was laying on my left side, the nurses had just left me for a minute to check on another patient.  The door was open from my room to the hallway.  After 10 days of multiple NSTs I knew that the nurses could monitor and see the results of the NST from their desk.  The nurses station I never actually saw since I never left my room.  This was the morning I wasn't feeling great, kind of like I had the flu.  Some nausea, body aches and chills.  Thankfully I had requested they do the NST earlier than usual that day, I was worried something was off.

The nurses had left for a minute or two, not a big deal - I was used to being alone in my room certainly.  And then the alarms went off from the NST.  A loud, abrasive, bell-like sound.  Clearly designed to signify a problem.  (One of the nurses today at work said it sounded like a Code alarm, and yes it does)  I knew something wasn't right, but tried to remain calm.  And then the personal care assistants, nurses and doctors started to flood in.  And quickly.  There was no more "well, let's wait and see."  It was "we aren't waiting for the IV nurse any longer, you are going down to labor and delivery now."    Josh wasn't there, I had just called him about 15 minutes prior telling him to hurry up into Boston, I had a feeling the baby was coming.

It was "so this is what we have been talking about.  You are going to have your baby today."  But it was still 12 weeks too early.  A strange mix of feelings.  Sure, I was terrified that I was delivering a baby 3 months too early.  But I also had an odd sense of peace about me, despite the organized chaos going on around me.  I think God granted me his grace, to appreciate those last moments of pregnancy, those last moments I held Ethan inside of me.

I laid very still as the alarms went on and off, signifying that Ethan's heart rate was far too high.  The nurses, Kathy and Marty, had to tell me to change into a johnny.  I remember thinking, why?  How could it be time for me to need a johnny?  That was very strange.  Lovely Eileen packed up all of my belongings for me, as I just watched her.  The little room that had become my home for 10 days, the space I had hoped would be my home for 6 more weeks, was being packed away in haste.

The stretcher to transfer me was in the hallway.  I actually got to walk into the hallway (first time in 10 days).  I remember freezing, because I was becoming septic - I had bad chills.  I remember covering up with the thin white hospital sheet on the stretcher, and using that sheet to gently wipe my tears away.  This was not the way I was supposed to go into labor.  Not the way anyone should have to deliver their baby.  It should be a time of excitement, of joy.  Not of fear and anxiety.

I remember Kathy and Marty both bringing me down in the elevator.  Working in a hospital I initially thought, how come I am getting two nurses to do that?  Instead of one nurse and maybe a transporter?  Oh, that's because this isn't good.    Kathy told me in the elevator to ask to get the eighth floor for my post-partum room.  I couldn't believe I was going to need a post-partum room that day.

Kathy went back after we got off of the elevator and Marty stayed to give the report to my L & D nurse. Her name was also Kathy.  It's interesting the dynamics between colleagues, especially from different floors.  They were nice to each other, but I could tell they had different ways of operating.  My L & D nurse Kathy was a gift from God.  No doubt about it.  She was there with me the entire way, even when Josh wasn't there.  I was still alone you see.  I remember realizing that I was Kathy's only patient, learning that she was the charge nurse (or whatever you all the nurse who is the most experienced on shift) and that she had been pulled off of other's cases to care for Ethan and I.  Not good to deliver at 28 weeks 2 days.  You know it's very serious when you get the best of the best.  When residents aren't allowed to come into your room at The Brigham, you know it's tense.

Kathy was amazing, our personalities clicked right away.  I love her.  Pretty sure she loved us too.  I told her that I was OK, but that I am a "crier."  When overwhelmed the tears just come...and that's what was happening.  She even joined in with an appropriate tear or two.  Kathy and Dr. Mansour gave me a bunch of medications - I lost count after 5 or so, to try to get my infection under control.  They were trying to avoid a c-section since I had delivered massive babies naturally with no problems.  The Pitocin was cranked as high as it could go, but the contractions didn't end up causing me to dilate fast enough.

I remember laughing so hard 2 times that morning.  Yes, laughing to the point of tears.  This is rather inappropriate - so beware if you read on.  One of the medications they gave me was to bring my fever down ASAP, so it had to be given rectally.  Yup, I have no shame after delivering 4 babies.  Dr. Mansour made some kind of joke about it.  I remember thinking all of the male patients at work (and any male I have known) complains about having their prostate examined.  So, after Dr. Mansour's comment about the procedure I said "is that what men complain about?  That was nothing.  Pelvic exams are much worse."  Dr. Mansour stopped in his tracks and said "what are you talking about?  Anal sex?"  Of course I said "What?  NO!!!  Prostate exams!!!"  And Kathy, Dr. Mansour and I proceeded to laugh hysterically.  Kathy then commented that this wasn't your typical conversation between Dr. Mansour and his patients.  Well, I would hope not.

The second thing that made me laugh was when Josh finally arrived we decided it was time for an emergency c-section.  He had to get gowned up.  I had been worried his 6'6" frame and size 15 shoe wouldn't fit into the gowns.  Kathy assured me he would.  Josh was such a good sport, he went into the bathroom and changed.  I was surrounded by doctors and nurses and look over their shoulders to see Josh stuffed into a far too-small blue jumpsuit.  It was hilarious.  Laughter broke out again and someone said "comic relief is a good thing."  One of the nurses had to go get scrubs for Josh to wear.

More staff came in, this time from the NICU.  I had gotten a tour of the NICU less than 2 days prior, though Josh had never seen it before.  The NICU nurse offered to give Josh a quick tour, but there was no time.

You can see how a simple trigger, an alarm from work, can bring this flooding back.  I can't get the thoughts to stop until I think it through, remembering it back.  Hoping this entry will be enough for me to move forward tonight, otherwise I'll have to take a Benadryl to sleep I guess.

Monday, October 8, 2012

Irish Twins.

I sit here writing this as I watch you run around the house.  Caroline is at Kindergarten and Jackson is at preschool, a rare opportunity for you and I to be together alone.  I love this time to bond with you.  Yet we aren't supposed to have this time like this, Ethan was supposed to be here too.

You are learning to share things, so proud of yourself and your new skills.  You are beautiful Ryan.  I am so honored to be your mother, and thank God for that daily.

Ethan made you a big brother you know.  Well that's just it, you don't know.  You never will know what it's like to be a big brother.  Of course I'll tell you that you are one.  But people look at you and think you are the baby of the family...and you aren't.  Your "Irish twin" was.  Clearly I never had twins.  My mom's a twin, so I always thought it was a possibility - but it didn't happen, at least not in the traditional way.  When I found out I was pregnant with Ethan I did the quick math, you were going to be 14 months old when he was born.  Then the plans went to hell and you were just 11 months old.  That morning of Ethan's birthday I was terrified, oddly at peace, and a bunch of things mixed together.  None of it really makes sense.  But one thing I thought was - well Ryan and Ethan will be inseparably close.  Irish twins, awesome.

Somehow you never met your "twin," the one who made you a big brother.  The brother you were supposed to share a room with, use the bunk beds with.  The brother you would have taught how to climb up and down stairs.  The brother that would have been next to you in the car.  I wondered if people would have thought  you were truly twins in a few years, once Ethan had a little bit of time to catch up with you in size.

I see how you idolize Jackson and Caroline...and wish that you had the chance to be idolized by Ethan.  You were supposed to be inseparably close, yet you never even met each other.  Ryan you are a big brother.  I'm sorry that you will never know what that feels like.

Sunday, October 7, 2012

I'm finally angry.

I know that anger is one of the stages of grief, widely accepted as part of the healing process.  I've been waiting for it to come...occasionally wondering if God had granted me the grace to escape this phase.  But no, He had other plans.

Four-and-a-half months out from Ethan's death I am finally angry.  At who?  Unsure.  At what?  Sometimes that my son died...what the heck?  (those of you who know me well can substitute the words I was really thinking there)  Other times at the things that are said to me, often with good intentions I know.  Many of the comments offered my way are just not helpful...I know they are meant to be, but depending upon the day they just aren't.  And part of me is too exhausted to pretend they are any longer.

This is another one of those posts that isn't pretty.  Usually I edit myself, for fear of making others feel uncomfortable...but I am too exhausted to do that right now.  And, this is my journal - so read on at your own risk I guess.

During a conversation focused on how painful my grief is, please don't think that is a good time to tell me that you are expecting your first child.  And that your baby is due in the same month that Ethan was born and died...it's just too close.  How could that make me feel "less pain?"  Just don't share that news in that way.  I can hear that people are having babies (of course it always stings a little, or a lot, that I am no longer in that position), but tell me in a conversation separate from you trying to be a support during my grief.  Do people think before they speak?  I'm not always sure they do.  But please start around me.

To the former friend who told me "you are better off financially" immediately after I told you that my son died...    Fuck you.  (I told you to read at your own risk and that this wasn't going to be pretty.  Clearly this is the sassy side of me coming out.  Not the minister's wife side of me.)  Now that I wrote that, I feel a little bit better.  I still find myself wishing you well, but I no longer consider you a friend.  There is no excuse for telling me that I am better off financially in the same breath that I said my beautiful son died.  And you are a parent...what is wrong with you?  I don't care that you have always been socially awkward.  It's no excuse.  I have always liked you, and given you the benefit of the doubt...but you crossed a line - I forgive you for it, but will remember it.  And by the way, you never told me you were sorry that my son died.

This next one is less upsetting to me - as I can see part of why people say this to me.  I am blessed with three young children at home, and I live a life of blessed chaos.  Several people have said to me something like "can you imagine how much harder/more difficult this would have been with four?"  Um, yes I can.  It's all I imagine...and that brings me so much pain.  What many don't see is that even though I am juggling the concrete needs of my 3 children on Earth, I am constantly juggling my grief for Ethan.  I am quite experienced at managing the needs of lots of littles - and I guarantee managing Caroline, Jackson, Ryan and my grief over Ethan is far more difficult than if I had Ethan here.  Those well-intentioned comments just are not helpful.  I don't blame you for thinking it...but don't say that out loud please.

I have more, but am running out of time right now.  This anger in me was sparked by an online program I am participating this month.  It is a month-long-process of photographing something each day in reference to your grief.  The other day the task was "what NOT to say."  So many lovely people shared their pictures of horrendous things said to them.  It's just not OK.  We are all suffering too much already, how can people honestly tell us that we are "better off financially" or that "it was your fault because you had a baby shower" - yup, one poor woman was told that by her mother-in-law.  And it gets worse, people forget that our babies died.  One person posted how painful it was that someone "forgot" their baby died...asking "where's your baby, asleep?"  Just 1 week after the funeral.  And you know what?  Multiple people had similar experiences - myself included.  A volunteer at work actually asked me how my "baby was?" on two separate occasions.  And she did not mean Ryan.  She FORGOT that I had told her my baby died.  The second time, I can't remember exactly what I said.  I think I may have said "actually, he's dead" with a look of horror on my face.

The sass in my has come out...and I am unsure how long it will stay that way.  Please tread carefully around me, as I am simultaneously strong and fragile.  I want nothing more than to talk with others about Ethan, yet please think before you speak.

Friday, October 5, 2012

This is real and I don't like it.

Even 4 months out I have days when I expect to wake up from this nightmare.  Where I catch myself looking in the mirror to see a belly, instead of the underweight, bony frame that has replaced my pregnant body.  The fog has lifted by now.  I am no longer in shock.  I am no longer in the intense depression of the summer.  Yet I still can't believe that my child died.  Who does that happen to?  Who holds their baby while they are breathing one moment, and the next they are not?  Who sees the color in their baby's body drain out of them?  And who has to make the decision to let that happen?  The gravity of my trauma and my loss is surreal.  It's impossible to wrap my head around fully.  And most of all, I don't want to.

Perhaps I am entering a new phase of my grief.  One where I am angry a bit.  Not at God so much...I do trust in his plan.  I am just pissed that this is His plan.  I haven't had too many pity parties of the "why me?" stuff.  Yet I am finding myself asking "why?" lately.

Why did Ethan die when Josh and I would have provided him with a loving, safe and fabulous home?  Sure we would have been even poorer financially, but rich in love and respect.  We strive to raise healthy, respectful, loving people - I think the world could use some more of those.  I haven't figured out a way to articulate this next point appropriately, so please bear with me.  And know that I always pray for and want the best for ALL children.  How come shitty parents get to raise their children and Ethan was taken away from me?  Why do mothers who abuse drugs and alcohol during pregnancy get to deliver their babies full-term, and I delivered mine 3 months early?  Why couldn't I stay pregnant longer while on complete bed rest in the hospital while others disregard the medical advice offered to them?  The little girl in me wants to yell "it's not fair" and stomp my feet up and down.  Instead I just cry.  And swear when my older kids aren't around.

I just don't get it.  I never will.  Usually I don't feel the need to...but tonight my sadness is quite overwhelming.  I guess I am now asking why?  Why would something happen that was so wrong?  So wrong that it makes me feel this awful, consuming pain...  I just wish it would stop.  I just really want Ethan here.  It's not fair.  And now I am crying.

People tell me "I think that must be the worst pain ever, losing a young child."  All sorts of people, of varying ages and life experiences tell me that.  Clearly no one can know what the worst pain ever is...as thankfully no one experiences them all.  But I will say this, I pray that this will be the hardest time in my life, in my husband's life.  I thank Jesus for carrying me right now, as he certainly is doing so.  Because my legs just aren't capable of carrying me, of lifting this load.

Sometimes I would love a vacation from my grief.  It's just completely there, all of the time.  In different ways - at times under the surface like low tide, and others thrust in my face like high tide.  I can't run away from it.  It's utterly overwhelming some days, and so exhausting.  Yet I still am a social worker in an oncology department (a position I love and am honored to have) and am home 5 nights a week by myself to take care of our 3 little kids (Josh works 2 jobs in the end of the Summer & throughout the Fall).  It's amazing how life does not relent, even in the aftermath of death.  There is no time to grieve usually.  I have to schedule grief time.  Usually after the kids go to bed, or it could be in the middle of the  night if I wake up.

I look at others, even close friends and family, who are not in the position of grieving a young child of their own.  They can genuinely be empathetic towards me...yet I don't think they feel the grief in the consuming way I do.  They don't breathe it in and out the way I do, all day long.  They appear to be able to "distract" themselves 4 months out from their grief, from Ethan's death...and I cannot do that yet.

When I feel overwhelmed by my sadness and I ask "how did my son die?  why did he die?" I end up telling myself that this is real.  This is now my real life, and I don't like it.

Monday, October 1, 2012

How's the baby?

How's the baby?  
Where's your baby?
How old is your baby now?
I last saw you when you were pregnant!

I get them about once a week now.  It used to happen upwards to 10 times a day right after Ethan died.  Especially when I first returned to work.  I had practiced my responses at that time, and sadly grown a bit numb to the shock and horror that people wore on their faces when they heard what I was saying.

Now I am four months out though, and kind of think that everyone who knew I was pregnant with Ethan has heard about our story.  So when these questions come to me now, I am thrown a bit.  It's not that I don't love to talk about Ethan - quite the opposite actually.  I love to talk about him because it helps me heal, but also because he is my child and I am proud of him.  Everyone talks about their kids, why shouldn't I?

OK, back to my original point.  I am no longer permanently braced for those conversations to come at me, those that end with me looking into someone's eyes who suddenly realize that I am living their worst nightmare.  Just the other day I took Ryan and Jackson to The Big Bean for breakfast while Caroline was in Kindergarten.  Guess I hadn't seen one of the owners/chefs for a while.  She kindly asked "weren't you pregnant?" - insinuating where is your newborn?  And you know how the rest of that conversation went.

Two weeks ago I was at a playground and saw two women I knew through the recreation programs.  I immediately wondered, "have I seen them yet?  Do they know?"  I just couldn't remember.  The conversation didn't progress to the question that time.  But last Thursday I ran into one of the women again.  It came up there, and no, they had not known.  Turns out it has been a really shitty summer for her too, as her sister in her early-30's passed away from cancer.  Different losses, absolutely.  But we were speaking that same language, foreign to most.  The language that startles others and puts us in this "club" where we are grieving those lost far too early together.

It's with mixed feelings that I field those questions less.  It is emotionally draining, or hardening almost, to share my story, our story, repeatedly.  But it is also a connection to Ethan, something that I am constantly grasping for.  Whether it is a butterfly, a rainbow, a card in the mail or a question asking about Ethan...the baby.  I do love them all.  Sometimes with tears.