Merry Christmas Ethan

I will tuck a note inside your stocking on Christmas Eve.  I've already wrapped the small gifts and treats to fill your sister and brothers' stockings...but there was nothing to wrap for you.  There will never be anything to wrap for you, and that sucks.

You are with us.  This I know.  And I'm so thankful I feel you.  It means more than I can say really.

I bought a puzzle, one of the nice Melissa and Doug ones, for a one-year-old boy at Ryan's early intervention program.  It should be yours.  I'm sure you would have liked it.  Heck, I liked it.  It would have been nice to have it in our home.  I'm sure that little boy will enjoy it too.  So that brings a smile.

I miss you E.  A lot tonight.  In a sad way.  Not just in the beautiful, loving, warm way that has (thankfully) frequented my days.

I have the beach stones we painted for your apple tree back now.  I think I will put your name stone under the Christmas tree.  I don't know what else to do with it.  Not yet at least.

So on Christmas Eve I will tuck a little note from me to you in your green stocking monogrammed with a white E on it.  I'm thinking of filling your stocking with flowers on Christmas day this year.  A celebration of your beautiful life and the continued presence you have in ours.  It shouldn't be look empty, for it is filled with love and beauty...inspired by you.

Love you E, always.   -- Mama.

P.S.  Be sure to pop in when the kids run downstairs and open their gifts under the tree.  It's the best moment of the year.  So you need to be there too :)

The Price of a Teeth Cleaning

I consider myself a healthy person.  I love to run.  I have a healthy weight, blood pressure and all that jazz.  Yes I love my sweets but eat salads too.  The only thing I have really slacked at is going to the dentist over the past years.  With that said, I am neurotic about brushing and flossing...I just haven't made the time or had the money to go for regular dental appointments.  But today I finally went.

Truthfully I was a bit anxious as to whether I would be shamed for waiting so long.  Thankfully this new dentist was really nice about it.  In fact, I am a big fan of him.  Didn't hurt that I have no new cavities.

Before I went to the appointment this morning I saw another friend's birth announcement.  We all know how this goes by now, right?  How nice for them.  Cue my sadness.  But, whatever...on with my day.

New patient paperwork.  Us women get grilled (OK, perhaps it just feels that way for me given everything) as to whether or not I could be pregnant.  Understandably they don't want to give x-rays if I could be pregnant.  It's the first medical question on the paperwork.  Followed by have I ever been hospitalized?  Answer: Yes.  Reason: Other.  Nothing that could affect my dental care.

Apparently they needed more details so the administrative assistance asked me loudly in the waiting room.  So much for HIPPA.  "Was it just child birth?"  Well no, I thought.  A bit more complicated than that.  I told her it was related to a past pregnancy and medically a non-issue going forward.

Back in the exam room they wanted to start with x-rays.  The hygienist was very thorough and asked me twice if i could be pregnant.  I wanted to yell "NO I CAN'T BE PREGNANT ANY LONGER!  STOP ASKING ME!"  Poor lady, she had no idea.

The hygienist starts asking me if I have children.  Yes.  How many?  4.  You can see where this is going.  Ages?  Fast forward to me saying that my son died as a baby a year ago.  No tears, no wavering voice.

Now I'm stuck in the chair while my teeth are being picked at listening to this rather nice lady talk a lot.  I mean the nice thing...she is rather nice, just clueless as to how her words can hurt a bereaved mom.

It's part of the job I guess.  Having mainly one-way conversations with people who cannot respond as their mouths are open.  Somehow her conversation went to "at least you have your other 4 children."  I had to take a break from the teeth cleaning to clarify that when I had answered I have 4 children I was including my son who died.  She had assumed I did not include him in that number.  And there's some hurt on my part.  That other's don't consider my son, because he's dead, worthy of inclusion.  Yeah, that's how it feels on my end.  Even if that's not what's intended on the other end.  Back to the picking and I skipped over the "cheer up! you have other kids at least" line.  She went on to share that her mother lost a child, and still talks about it.  And that her sister had a loss as well.  This rather one-way conversation ended with "it takes some time to get over it."  My response, "I will never 'get over' it."

From there the conversation went to her beliefs that evolution is not scientifically supported as she finished picking my teeth.  It was an odd experience.  At the end of which though, I still found myself liking this woman overall.  Just not her comments.  I continue to be amazed that people, good people, are capable of such idiocy.  And it causes me to hold a mirror and acknowledge that I must hold the same idiotic capabilities.  So, to all I have hurt through my idiotic comments...I am truly sorry.

Well, my teeth are now clean :)

Today

I'm 1.5 years out now.  For the most part people have stopped asking how I am doing.  That's OK I guess.  Until it's not.

What does my grief, my life look like now?

Lots of days are fine.

Some days are not.

A few rare days are great.

My eyes are open for the signs that Ethan is with me.  The songs that come at just the right time.  I'm listening to Jackson, really listening to him, when he teaches me about his brother.  As he shares about their visits.  Just the other day Jackson said Ethan continues to hang out with him around bedtime.  All along speaking about these visits as completely normal and of course they would be happening.  And then asked me "what's the round thing around his head?" - while using a finger to draw a circle around his head.  I guess it might be a halo of sorts.

Tears still flow.  Often with a smile.  Often not.

Some aspects of my grief have simmered down.  Bubble up every now and then, but return to a simmer.  One thing that hasn't simmered is the pain that comes up when someone tells me they are pregnant.

Here's how it goes.

If I see a pregnancy or birth announcement on Facebook I've been punched in the gut.  Breathing immediately becomes painful.  Really painful.  Breathing gets faster and shallower.  I suddenly feel hot, yet cold.  And tears instinctively well.

I think "how nice for them" while crumbling to pieces myself.  Oddly, like the trauma victim I am, I search for the details.  Is the baby a boy or a girl?  Is this their fourth?  Is the due date in May?  Lord please, don't let it be in May.  Not a boy in May.

If I feel moved to, I offer kind words to the new parent(s) and then block them from my news feed.  Blocking them is a necessity.  One I have learned from repeated mistakes.  A few friends I haven't blocked...the friends who have been extra supportive to me in my grief.


If I hear someone is pregnant or had a baby in person the visceral response remains the same.  But now someone sees my tears.  Or hears the catch in my breath and break in my voice as I say "how nice for them/you."  There is no computer to hide behind this time.  Not that I try to hide my grief, it's not my way.  But some people would find it more comfortable to have a buffer from my grief I am sure.

In person or on the phone I see the surprise that registers with the other person.  That such happy news doesn't evoke happiness for me.  Instead evokes my personal devastation to be honest.  Not that it necessarily takes much for that to happen.

Seeing that others are surprised about this hurts.  It's painful enough to be brought back to my trauma, and face my loss knowing I will never again have a pregnancy or give birth.  Kind of feels like I'm being kicked when I'm down.  Having to explain to people (usually third parties who tell me of others pregnancies) that YES, I'M STILL GRIEVING.  And then these third parties try to backpedal.  Oh, of course you are sad.  But what it reinforces to me is that most people cannot have a fucking clue how pervasive this loss is for me.
Some days it's rough being 33 and surrounded by friends having babies.

Perhaps one day this will be gentler.  But it's not yet.  Not at all.

A Pair of Shoes

A Pair of Shoes

I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.  They are looks of sympathy.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in this world.

Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don't hurt quite as much.

Some have worn the shoes so long that days will go by before they think about how much they hurt.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

~ Author Unknown

Finding Security

I am prefacing this post.  Remember, this is my personal journal.  So these are just my opinions.  Opinions that may change in the future, or may not.  I recognize many don't agree with what I offer below...and that is more than OK.  But in the face of many platitudes offered my way as I grieve, this is my response.  Believe whatever you believe.  Whatever gets you through the shit days and allows you to smile on the beautiful ones.  



People would tell me how lucky I was to have 3 healthy children before everything went down with Ethan.  And I would graciously smile and say, "Yes, we are very blessed."  Internally I would think "it's not luck...those are blessings."

And now, my eyes see things differently.  Having my 3 healthy children are blessings, but also the result of great luck.

I've been mulling this over for months now.  Praying about it, trying to understand.  The difference between luck and blessings.  Sometimes they overlap.  But I do not believe they are synonymous.  Somehow, attributing things to luck disconnected me from my Christian faith in the past.  The idea that luck played a primary role in the big things in life, well, I found that disconcerting.  And therefore ignored it.

The "everything happens for a reason," the "God doesn't give you more than you can handle," and the idea that God orchestrates everything offered me great security.  And I grabbed right onto to it.

When Ryan was 4 weeks old he was hospitalized for a fever of unknown origin.  Doesn't sound that bad, right?  Being my third child I didn't alarm myself, but was surprised when the pediatricians said he needed to be hospitalized and tests had to be run immediately.  What kind of tests?  Oh, the spinal tap, multiple chest x-rays, starting IVs into a chubby baby with difficult veins, and multiple catheterizations kind of tests and procedures.  In my mind I kept telling myself that the Lord wouldn't let something really bad happen.  That night the pediatrician told me "great news!  It's not leukemia."  Oh, my mind hadn't even considered cancer as an option.  Because somehow, in my naive way I thought that wouldn't happen "to us."  A friend offered support to us during those few days and said "don't worry.  God doesn't mess with people like you."  And you know what?  I grabbed right onto that false sense of security.  Today, I look back upon that logic and think how narcissistic could I be?  I mean seriously.  I worked in the oncology department of that same hospital Ryan was in.  Saw the ugly side of bad luck daily.  And knew it wasn't the result of the type of person you are.  Leukemia and meningitis aren't punishments that my loving God doles out.  They are bad things that just happen.

Fast forward less than 2 years and our next son dies.  We didn't get that "great news!" report from the doctors this time.  My false sense of security set sail right over the ocean of tears I cried.  I was a faithful Christian who no longer believed many of those Christian platitudes.

My personal faith is large enough, is strong enough, to hold the concept that luck plays a HUGE role in life.

Luck.  A concept that implies there is no way to control it.  This idea of chance floating around.  A chance for good or bad things to happen to people.  It's a sobering thought.  You don't get that same warm, fuzzy feeling as you do with many platitudes.  In fact, I think it's so scary that many people pretend that luck doesn't play a primary role in life.  I used to be one of those people.

This post isn't a bitter woman talking.  It's an honest reflection.  As I write this, I'm not angry at God.  (Though, my relationship with God is strong enough to handle some anger).  I'm not angry at much actually.  Shit happened to my family when Ethan died.  And that shit was bad luck.  I'm not bitter.  I'm devastated.  Please note the difference.

The idea that "what doesn't kill us makes us stronger."  For many, absolutely.  Many grow through tragedy, standing on their resilience, becoming stronger people.  (I pray that this is me most days)  But how can we honestly apply that idea to everyone?  The idea that God won't give someone more than they can handle - what about those in such pain that they take their own lives?  Respectfully, I don't think it's fair to offer these platitudes and pretend that they apply to everyone.  There seem to be plenty of people who struggle with pain and don't come out of things "stronger."

It's OK to be a Christian and not believe that God has a plan where babies die.  It doesn't make me less of a Christian.  It's OK to be a Christian who believes in the glorious power of our Lord without believing that God orchestrates such painful tragedies.  My Lord can still work wonderful things out of tragedy, and it doesn't mean he caused such pain.  I believe in a God of love.  My God walks beside me and lifts me up when the pain knocks me down.  This unfaithful partner is my Lord.  And this unwavering love and presence is where I now find my security.

I am a blessed woman.  I have experienced great luck and, undeniably, very real bad luck.  My eyes have opened to both and think I am a stronger Christian for it.

"There is nothing you can do to make God love you more.  There is nothing you can do to make God love you less.  For God is love, and you are God's beloved."  -- I've never found out who actually said this.  But for me, it is everything.  God is Love.  And he can surely handle me and this post.

Why I no longer say congratulations.

Someone has a baby, you say congratulations right?  I used to.  But I can't any longer.

Congratulations can imply something was done successfully.  That someone won something.  That the individual receiving congratulations did something right...not wrong.

Ethan died 4 days after he was born.  I got a lot of beautiful condolence and support cards, and only one actually congratulated us on the birth of our child.  (Thank you Jen for this, I will always remember that)

What did other moms whose babies lived do right that I did wrong?  To earn the congratulations when I did not?  Perhaps nothing.  Perhaps a small something...that is the dark room where my mother's guilt lives.

I just can't bring myself to say "congratulations" to people anymore when they have a healthy baby.  Externally it is a simple way to acknowledge something lovely has happened.  Internally it feels like I am acknowledging that they were successful and I failed.  Internally it feels like I allowed the failure.  And I just can't sit with that comfortably.  I tried so hard.  So very hard to bring Ethan here healthy.  But it didn't happen.

Three friends have had babies over the last two weeks.  So, what do I say to them?  My fingers sit on the keyboard and wait.  Wait for some words to come that work.  Words to convey my happiness for them.  Words that won't betray the grieving mother in me.  Words that won't hijack their beautiful moments with my sadness.  Words that do justice to both of us.  Words that won't add to the tears that are already flowing.  I think I usually say something about how fabulous their baby is and to soak in their blessings.  And then I hope that they understand.  Understand why a simple congratulations is no longer simple for me.

The light returned last night

Last night was the first time since May 8, 2012 that I have been genuinely happy...without the depression lurking behind my shoulder.  Seriously, that's a long time not to have felt pure happiness.  A long ass time.

It's a little early for me to be assured that my major depression is gone, but signs are looking good thus far.  I finished weaning myself off of my anti-depressant a week ago too.  And besides feeling dizzy and countless incidents of having "brain zaps" or something bizarre and uncomfortable this week, I am feeling OK on that account.  And last night, I felt good.  Like the real smiles, leave the stress behind for the night kind of thing.

My friend Potts and I have known each other since Kindergarten.  We've done the sleepover thing a million times, peewee soccer thing, and on for the last 27 years.  And last night, she married a wonderful man on the coast of Maine.  My husband performed their ceremony, I was honored to read in the ceremony as well, my best friends were celebrating with us for the night (all away from our kids I might add - that's never happened in 6 years), and it was a high school reunion with the greatest group of friends ever, only made better by several significant others joining in on the fun.

Somewhere around the toasts I realized I was actually happy.  The pure kind of happy.  Sure, sad that my son died...but not in the forefront of my day kind of sad.  I remembered him all evening long, as several friends have had or are expecting babies - and I was only a little bit jealous this time.  That's saying something too.

Last night affirmed that Ethan is not forgotten.  Not by me or my family.  Not by my high school and college friends who I only occasionally see these days.  And not by many acquaintances.  Last night, I put my biggest fear away.  For the world has not forgotten Ethan.

Last night also offered me another blessing.  To see the tears of joy, the tighter hugs than usual, the sweet conversations of mildly intoxicated friends, that caught me off guard.  It's not just Ethan that they love.  It's Josh and me as well.  And for that, I am very humbled.

So thank you Potts for last night.  For giving me the mirror to see that the light has returned to my eyes.  One of the best gifts anyone could have given me.  And one I will hold onto for a long time.

Daily Communion

I just split some of my 10mg Lexapro pills in half and quarters.  I have been taking this tiny pill for a year now, and I think it saved me in many ways.  It chemically lifted me out of the well of Major Depression.  This tiny white substance allowed me to feel hunger again.  In turn allowing me to put a few pounds back on top of my gaunt frame.  Allowed me to feel the warmth of the sun on my skin.  To experience genuine moments of happiness alongside my depression and grief.  It helped me to survive.

Another babyloss parent wrote somewhere, I cannot recall where, that his act of taking an anti-depressant daily was an act of communing with his child gone too soon.  That resonated with me.  For I never took an medication for mental health prior to Ethan's death.  Sure, I tend to think us anxious people, myself included, would likely benefit from a little SSRI anyway...but I'd never made the move towards it.  As my other coping skills were sufficient.  Until Ethan died.  So this small, ritualistic action of swallowing a pill after eating a nutrigrain bar each morning was my physical way of validating Ethan's existence.  That it all wasn't just a beautiful dream and terrifying nightmare.  That he was and is real.

So tomorrow I will begin weaning myself off of this communion.  My body will tell me how it goes over the next month or so.  No need to rush the process, no need to force the outcome.  For I have worked far too hard to be depressed unnecessarily again.  But I'm kind of excited about the potential for weaning.  I like to think of it as a sign of healing.  Time will tell...

An unfair choice

One of the saddest things for me to come to peace with is Caroline, Jackson and Ryan having never met their brother.  He lived for 4 days, we just didn't know he wouldn't get to Friday, 2 days further.  For Friday was the day they were to come to the hospital, being a state away, with my parents to meet Ethan.  It was a lot of work to have someone bring a 4-year-old, 2-year-old and 11-month-old to Boston.  Physically and emotionally...that was a lot to coordinate and ask of my parents.  Who were already pulling crazy amounts of weight during those days.  

Saturday Ethan was born and was the most traumatic day of my life.  It was evident that it wasn't appropriate for Ethan's siblings to come down then.  As we weren't even allowed into the NICU for hours at a time that day.  Sunday came around, and we were still shell-shocked that he had almost died, yet miraculously survived the night.  Monday morning things actually looked promising.  That was when his nurse Maureen pointed to another NICU mom doing kangaroo care with her baby, and said "that will be you in a few days."  Well, that never happened.  If I had known what was to come we would have had everyone come and meet him, but nobody had the crystal ball.  Three hours later the shit hit the fan and we were all in survival mode again, literally.  So it didn't seem appropriate for siblings to come in at that point - as we didn't want to scare them and again, listened to the care team saying that things were hopeful.  

Tuesday was more of the same.  Wednesday morning came along and Ethan was severely sick, but they all remained hopeful that medicines and interventions would start to do their 2 steps forward, 1 step back NICU thing.  I was being discharged that day as well, so having the kids come into Boston when Josh and I were coming home didn't make much sense.

And then 3:00pm came and things went south.  The doctors and nurses left Josh and I in that large conference room for privacy, as we discussed it was time to let him go.  Ethan's body was failing him, quickly.  The choice before us was unfair.  A choice no parent should have before them.

Do you hold your son, who you has never been held before and you will never be able to hold again, while his eyes are open?  To look into each others eyes with no isolette in the way.  Or do you call your parents a state away, crush their hearts and ask them to pile your children into the minivan and drive across the state border, into Boston at rush hour without scaring them or driving unsafely given their trauma and grief?  Knowing that by the time they arrive, there is a chance that Ethan would have died anyway, and if he did survive to meet his siblings, when we held him he most certainly wouldn't have had his eyes open.  

That's a shit choice to have to make.  I don't regret our decisions in the moments.  I just regret the way it all played out. 

Still Standing

I am a strong ass person.  (I really wanted to write something else here, but edited it)

I survived every single hour of 365 days after my son, my sanity, my peace was torn away from me.  That's a lot of hours.  A lot of tears.  A lot of anger.  Of jealousy.  Man, a lot of jealousy.  Of unfairness.  All stemming from my pain.  So.  Much.  Pain.  

Survived Memorial Day, Ryan's first birthday, Father's Day,  4th of July, my 32nd birthday, my wedding anniversary, Jackson's third birthday,  my due date with Ethan, Caroline's fifth birthday, Labor Day, Halloween, Thanksgiving, Christmas, New Year's Eve, Valentine's Day, St. Patrick's Day, Easter, Josh's birthday, Mother's Day, Ethan's birthday, the first anniversary of his death, and every other day in between.

I fucking did it.

Hard days will continue, assuredly.  But now I know I have done it before, so I can do it again.

Happy birthday sweet boy.

Happy birthday sweet boy.  Happy birthday to you.

Celebrate in heaven with your friends for me.  Charlotte, Avery, Jack, Lila, Emily, Addy, Takoda, Delia, Paul, Albert, Gus, Alexander, Michael, Christopher, Mira, AdiaRose, Pili and so many more.  So many friends you must have up there.

But spend most of the day with us too, somehow.  Please...

Your cupcakes are baked.  Waiting to be frosted and sprinkled by your siblings tomorrow at some point.  Caroline and Jackson thought you would like vanilla with vanilla frosting - coincidentally the cupcakes that they love.  Jackson asked if you were going to come down from heaven tomorrow to eat yours.  Caroline told him no, that we would eat it for you.  But do come down.  Hear us sing to you.  Please do.

As a mom, celebrating your first birthday without you here in person shreds my heart.  But I am learning to stand again.  With a shredded heart.  And to start living again.  That's what this first year was about.  Surviving.

Thank you for teaching me what love is.  What strength is.  What humanity is.  You taught me these lessons in 4 short and long days a year ago.

So today is your birthday.  One year ago today I was blessed to have survived a very complicated c-section.  Apparently a 50-50 chance.  So today I thank God for the blessing of my life.  And I thank God for blessing me to be your mother.  So your birth story is fraught with trauma, lots of it.  Ending with the biggest trauma of all.  But your soul emanates love, and for that reason your death shall never overshadow your life.

Happy birthday sweet Ethan.  Love you,

        Mama.

In his name...

I should be buying the cake mix, the #1 candle, the sprinkles and frosting tomorrow at the grocery store.  Baking them on Sunday to sing him happy birthday.  But I'm not.  Well, maybe I will still...but it won't be the way it should be.  That's for sure.

With Ethan's first birthday just four days away, I remember my biggest fear.  That the world will forget him.  I've done my best this year to assure that wouldn't happen.  But the fear remains in a dark corner of my being.  I know I won't forget him.  But will you?

Ethan's short and powerful life inspired great love.  Inspires great love.  Please help me to keep that in the present tense.  So the world doesn't forget Ethan.  So Ethan's love shapes the world for the better, making it impossible for the world to forget his sweet soul.

So this Sunday, May 19th, would you do a couple of things for me?  Would you tell Ethan happy birthday out loud?  So he knows that he is loved the world over?  Maybe even sing him happy birthday.  That would make me smile.

And would you spread a little love in Ethan's name on Sunday?  Do something nice for someone else. Show them love.  Go out of your way a little bit.  Maybe help someone who needs it.  Bring someone flowers to make them smile.  Donate to a charity.  Tell someone, or some people, how you value them.  Do something typically reserved for special days.  Remember Ethan when you do.  For May 19th is a special day.  Let's celebrate it with Ethan's Love...

Hello again friends.

It's here.  The dreaded month of May.  With Mother's Day, and poor Josh's birthday (the day that we had the Norovirus and possibly triggered my water breaking), 10 days when I was on bed rest in the hospital a state away from most of my family, Ethan's birthday, the 4 beautiful and terrifying days in the NICU and then the first anniversary of Ethan's death.  Not too many things to trigger my PTSD and grief right?  Yeah, right.

So May started off decently, at least from the emotional side of things.  I was status quo with my emotions and grief - checking off one more day every night.  This was likely because my family had the flu, the actual influenza strain something or other, despite it being May and having had our flu shots.  My day to day was filled with nebulizers, asthma attacks, 105 fevers, Tylenol, croup, steroids, anti-biotics, ear infections, chest x-rays and lots of trips to the pharmacy, doctors, hospital and phone calls with the pediatricians office.  Thankfully we are on the other side of these illnesses, but there go my distractions.  And now May 10th is a couple of days away.  The day my healthy pregnancy went out the window, when my water broke.  So this May 10th I have scheduled a great friend and photographer to take family photos of us at the Boston Garden.  Doing our usual Swan Boats, Make Way for Ducklings statues and more.  I am praying the good weather holds and that the kids don't fall and get bruises, unicorns or scabs on their faces between now and then.  

So the other night I was a mess, for the first time in a couple of months probably.  The kind people don't see any longer.  The kind of old school sob that harked back to the first few months after Ethan's death.  The kind of cry that might cause others to question if I was really "OK?"  Nope, I wasn't last night.  To those readers who are fellow babyloss parents, you know the kind I speak of, don't you?  No explanation necessary.  Though most who read this journal of mine are friends or family...peaking into the journey that is a mother grieving her baby's death.  So for most of you, let me explain the kind of cry I speak of.  

The kind where my breath catches in my throat.  Quite literally, there is an unintentional pause in my breathing pattern that is uncomfortable and even painful a bit.  

The kind where my face is tight with the salty tears drying on my cheeks.  Saline drown my pours, leaving them simultaneously wet yet dry from the salt.

The kind where my eyes are sure to be red and puffy.  There is no need for a mirror to confirm this.  The swelling is tangible, and somehow stings a bit.  

The kind that evokes a true headache for me.  Someone who rarely gets one.  And it's the headache that calls me to bed afterward.

The kind where my nose is impressively stuffed yet runny at the same time.  How does that happen in the absence of a cold?  Evidence is displayed on my shirt and sleeves (gross, I know), because I am in too much pain to find a tissue.  

Now you have the picture.  This is what grief looks like.  Raw grief, that is.  

So two nights ago I had my real good cry, and the tears flowed easily.  I looked at pictures of Ethan again.  And not just the beautiful one of him taken just after birth - when his skin looked pink and he wasn't swollen.  My poor boy, he was so very sick.  I am comfortable with the process and interventions we allowed and supported during those 4 days...and am absolutely sure nothing was done in vain, to harm him, or to selfishly prolong his life to delay my pain.  But, it breaks my heart to remember just how sick he really was.  Maybe that seems obvious to those who read this.  Well, surely he was really sick, he died after all.  But I have somehow buffered myself from some of those details.  And taking the time to reflect allows me to see his medical journey clearly again.  No shock to tint the lense any longer.  No major depression to smudge my memories with endless tears.  Just the beautiful, terrifying truth that was my son's body.

Anyway, these last two days I have greeted my close friends again.  Anger.  Tears.  Jealousy.  Irritability.  And more.  Why hello there.  I wish I could say it was good to see you again.  But my heart is not that simple any longer.

I am starting to get angry again.

Let me tell you who I am.  And who I am not right now.

I am not the minister's wife who should know everything without being told.

I am not the best friend for people who gives selflessly.

I am not that nice neighbor who is going to smile when you say I have three children, instead of the four I have already told you I have.

For the month of May I am the woman who held her son, sang "You Are My Sunshine"  to him, and directed that the breathing tube be taken out of his mouth.

The month of May is my month.  My month to reflect and remember my time with my son.  And I am protective of that.

Let me be selfish in May.

I may or may not be showing up to church in May - and I am OK with that.

May is my time.  Our time.  Please respect that.  Please stop putting outside expectations on me for May.  They just aren't my priority next month.

Please be extra kind to me next month.  Don't avoid me, just be nice to me.  Remember what May is for me, and for my family.

Perhaps May won't always be this way, but for now it is.  For this first May it is.  Truthfully, I don't really care if people like it - it's not about them.  It's about my mother-son relationship for me.  And that is something I will protect loud and proud.  Perhaps this is a heads up to tread carefully from now until June.  Mama bear is out.

May holds 14 days of anniversaries of medical related interventions to save my life and Ethan's life.  Holds Josh's birthday - the day we were all sick with that Norovirus that happened 12 hours prior to my water breaking.  Holds Mother's Day.  Holds Ethan's birthday as well as the anniversary of his death.  Holds much of my joy, and all of my pain.  So May is already topped off with emotion.

Lately I've found myself giving selflessly to others - and feeling honored to do so.  At the same time, I am beginning to feel maxed out.  So May is my time for self-care.  Please respect that.  Perhaps refrain from asking me to do extraordinary things for others, and ask if there is anything you could do for me.  Or for my family.

I've just reread this post - I told  you that I am feeling angry again.  But I feel better after writing it down.

Bring it on vs. Not just yet

I'm missing my baby tonight.  Supposed to be 10 months old right now, not 10 months gone.  Or, if all had gone smoothly, almost 8 months old.  That's when babies typically learn to crawl you know.  And believe me, I am blessed to know these milestones because I am a mother.  4 pregnancies, 4 babies in 4 1/2 years...that defines the mom in me.  It's what I've been doing for the last 5 plus years, having and raising babies.  And they've been the hardest and best of my life.  So, yes, I know when children are supposed to be rolling over, smiling, sitting up, crawling, standing, walking, self-feeding, sleeping better at night, and on and on.  I don't know everything...that's not what I am trying to convey.  Rather, the largest part of me is being a mom.  So it is impossible to switch off the "Ethan should be crawling this month" or the "Ethan should be running by now" thoughts.  They are ingrained in me, as natural as filling my kids' milk cups in the morning.  Much about being a mom is habitual.  Habits die hard.  Harder than it was for my son to die, I guess.  God, how awful is that...

Generally I've been feeling OK.  Typical caveat here.  I am never OK.  But I am learning to simultaneously live while grieve - a tricky feat many days.  We have adjusted beautifully to our new home and community.  I am surrounded by many loving people.  We hosted Easter and it was wonderful.  Full of the lively Gray moments that define our blessed chaos.  I've been working hard on our yard, getting it ready for Spring.  Even given some thought to planting a lilac bush to remember Ethan by.  The beautiful lilac blooms carry sweet memories for me, and bring about smiles.  Maybe we'll plant one once we can afford it (I have no idea how much they cost yet, and am still paying off medical bills...so one day I guess).

Spring is here, in the New England way.  This week we had a flurry of snow flakes and today was almost 60 degrees - with Monday hoping to reach 70.  I've always loved Spring, but this year I feared it.  Because Spring brings May, and all of the shit anniversaries along with that month.  Poor Josh, his birthday is in there too.  Mother Nature offered just enough snow and power outages to override my fear of Spring approaching with the anticipation of warm breezes and playing outside.  It's April now, May is less than a month away.  Sometimes I say "Bring it on May, bring it on."  Other times I say, "not just yet, not yet."  Time has a funny way of not listening to me, of doing its own thing anyway.  Very similar to my toddlers actually.

My grief remains tidal.  I've been living in the low tides lately, and that's been appreciated.  But some high tides are rolling in, I can feel them.  The sound of the surf is getting louder, and the erosion is stronger on my soul.  A good friend is about to have her baby this week.  I'm so happy for her, and her family.  Yet I can't stop myself from wanting that for myself.  Not just wanting a healthy pregnancy and baby, sure - that's part of it.  But wanting to live in that world where babies don't die again.  To be able to anticipate the birth of a child, without the real fear that a tragedy could await.  And if I am honest, I still get jealous when friends announce the healthy births of their babies.  And the leaving the hospital with their babies in the car seats - that one kind of kills me.  Tears automatically come when I send a note of congratulations to them.  It's unavoidable.  Also this week, my close friends' twins (born 3 months prematurely) are likely being discharged from the hospital.  A glorious day.  I have been praying for this day to come for them, for a billion reasons.  One of which is so they don't have to feel the pain I breathe.  And this day is fast approaching.  I am scared that the wave will knock me down.  My Major Depressive Episode is well under control by now, and I am scared that the next month or two will take me out again.  I know much of it is out of my control.  All I can do is keep up with my self-care regimen.  But it's scary.  To think of feeling so awful again.  I don't want to feel like that anymore.  It was really, really bad.  I'm crying as I simply reflect upon my depression during the first six months after Ethan died.  It was bad.  I know I am strong enough to do it again, if I have to.  But I simply don't want to.  So here I am praying that I grieve without being triggered into another Major Depressive Episode.

God help me, please.

Listening

As I sit down to write this post about two of my sons, and about the love and growth they inspire in me, I am grounded.  Jackson, our 3-year-old, is yelling "Fred, Fred, Fred..." over and over and over again.  You see, it's bedtime and he loves our dog and is calling him to his bed.  Quite loudly I add, with his 5-year-old sister and 1-year-old brother in the rooms next door, also trying to fall asleep.  I find it ironic, humorous, and all the hallmark emotions of a mother of a young child.  As I sit to document and share a beautiful story of Jackson I find myself muttering "I'm gonna kill 'em if he wakes his siblings."  Quickly catching myself and saying that's not true.  But perhaps, he might be found on the side of the road with a "free" sign hanging loosely around his neck.  (This is the nature of my mother-son relationship with Jackson.  Full-on everything.  Full-on love as in a post about Jackson's compassion.  Full-on excitement.  Full-on tantrums.  Jackson lives life fully.  And I am blessed to be along for the ride, exhausting as it can be.)


If you've been reading this little blog, my journal actually, you will remember that I wrote about Jackson's intimate relationship with Ethan.  In case you haven't read it, you can do so here.  Jackson is the one in our immediate family who has communications with Ethan.  Reciprocal ones, that is, of a clear nature.

I just have to add that I can still hear Jackson talking upstairs, and am practicing my patience and reminding myself that I promised Ethan his life would make me a better mother.  Hence why I am not yelling for Jackson to go to sleep right now.

Jackson speaks of Ethan often, in normal conversation.  To him, having an angel brother seems to be a normal thing.  Sad, yet beautiful.  And today a funny thing happened.  My friend Dee messaged me (you may want to check out the link above if you don't remember who Dee is in reference to all of this) asking me to ask Jackson about all of the blue Easter eggs.  They had something to do with Ethan I guess, she said.  Dee knew that Jackson and Ethan had communicated about them.  Caroline was at Kindergarten, Ryan had just gone down for nap, and Jackson and I started talking about how fun Easter was.  I asked him what Ethan thought of Easter.

"Ethan had eggs too."

"What color were they?  Because I know you had blue eggs."  Jackson only took the blue eggs, ending with a basket full of them.

"Green."

Now Jackson quickly segued on his own, with no prompting into the following discussion.

"Ethan visits me when I'm napping."  Said in the cute 3-year-old, slightly high-pitched tone voice of a little boy.  "He comes down from Heaven," (gesturing with his right hand from the sky to his body) "when I am in my room.  Mom, did you know there's a Baby Heaven?  And a doggie Heaven?  And a people Heaven?"

"Really?  That's amazing Jackson."

"Yeah, and Ethan's in the Baby Heaven.  Because he died when he was a baby."

All I can think of is that my 3-year-old's account of where Ethan is mirrors the account that Dee gave me, back when she had met God and Ethan during her brain surgery.  This Baby Heaven, well, Dee said there is just such a thing - and she saw it to the left of God.  My sweet E has been telling Jackson all about Heaven?  I believe it.  I've been around Jackson long enough to know when he is being genuine or not.  Or stretching the truth.  My gut told me this is Jackson's truth.  So our conversation went on.

"Jackson, when Ethan visits you, can you see or hear him?  Or do you just feel him there somehow?"

"I can hear him, and I see his face."  He's giggling here (again reassuring me that this is genuine, he was really reflecting upon his experience with Ethan) as he tries to describe what he looks like.  "He has lots of faces," and Jackson tries to indicate something with his hand around his own face.  It was evident he was struggling to use our language to describe what Ethan looked like to me.  Yet another reason I think he was telling the truth.  If he was simply making this up he probably would have told me about a more traditional human face.  It was time for Jackson's nap so we wrapped it up with perhaps he could draw me a picture of what Ethan looks like sometime.  To which he agreed.

I relayed this conversation back to Dee, who then told me that she had seen this conversation between Jackson and Ethan.  Jackson picked all of the blue eggs, so Ethan could have the green ones.

You just have to listen.  Are your ears open?  Mine are, with a little help from Dee and two of my sons.

Nope, he's not our dog.

When Ethan died in my left arm, my world stopped.

The world where gravity exists and babies live are givens - well that was no longer my world.  And could never be again.  My naivete is gone.

I am not exaggerating, you should know, when I say that I thought of Ethan with every single breath.  Still do many days.  That there was a loop replaying in my mind endlessly shouting to the world that something unnatural had happened.  That my baby boy had died.  That life was not the way it was supposed to be.

It was amazing, wildly so, that others still live in my old world.  Part of me gets it actually.  Ethan was my son, not everyone else's.

In the days that followed Ethan's death I have walked through this old world of mine, but breathed and existed in another.  I witnessed my neighbors drive off to work daily.  Stood next to the parents at t-ball who were gloriously cuddling their babies or rubbing their swollen bellies in the naive expectation of pregnancy.  Three days after Ethan died I went grocery shopping for goodness sake.  (Rather I gingerly walked around the store and pointed to items for my amazing sister-in-law to put in the cart for me - since I wasn't allowed to lift anything, least of all Ryan)

Several babyloss mothers share how difficult it can be to venture out of the home.  To wade into the waters of their old world.  Where they no longer breathe the same air as those around them.  I can see that - though seclusion hasn't always been my preference.  Can't tell you why, it just hasn't been my road.

But today I think of this idea - that the world just keeps moving, the same as it always has, for most people around us.  Yet our world, for babyloss parents, has stopped.  Rather I got booted out of this common world and forced to simultaneously function in it (to take my children to soccer, to do the preschool drop off and pick up) while breathing air of my new world.  It's quite tricky actually.  The key to success is that we have no option.

I think of this idea today because something happened this week.  I stood up during announcements at Church on Sunday and briefly spoke of the March for Babies fundraiser that I am participating in to honor Ethan & raise funds for The March of Dimes.  Then Josh spoke of grieving Ethan's death in his sermon.  Remember that we are new to this church as we just moved here a month ago when Josh was called to this new congregation.  Well, last night someone mentioned to him at a meeting that some people in the church had no idea that we had a son who died.  They had heard of Ethan somehow, but then never saw him.  So some of the members had thought Ethan was our dog.  Really.  The dog.  The bio on Josh referenced his family as something like Josh, Annie, Caroline, Jackson, Ryan and Ethan.  (I fully love that Ethan is included just as any normal child, because he is that - he just happens to have died already)  But Ethan never showed up for church.  We all know that some families include their pets when they list their family members individually.  I can see why people would think that.  But it is sad, poor E.  Nope, he's not our dog.  He's our son.

I hold no anger or hurtful feelings about this simple mistake, truthfully.  I get it.  But it does reinforce that it was just my world, and the world of those closest to us, who's world stopped when Ethan died.  Clearly.

Ethan being mistaken as a family pet.  That's a new one.

What to write?

It's been a while since I have journaled (I don't even think that's a real word, I can't get spell check to tell me it is).  I've been filling my days with arts and crafts projects with the kids and for the house.  With driving Jackson to and from preschool while getting Caroline on and off the bus.  Trying to encourage Ryan to speak, or at least make sounds, and arranging his Early Intervention services for a speech delay.  I find myself busy cleaning the house, playing outside with the kids, grocery shopping and going to the Y to work out.

These are the things I fill my life with since we moved.  I am really liking it actually.  Finding it rewarding, and healing.  A few new friendships are being nurtured.  Pretty sure God, and some angel babies, are coordinating these for me.  These women have kind hearts.  Open hearts.  They want to hear about Ethan.  About me as a mother of four.  Two of them know this road - one is guiding me along it, as her sweet daughter Elise was born still five years ago.  My neighbor lost her first set of twins, her daughter & son, to premature delivery 10 years ago.  Another thinks of me and Ethan and lets me know that.  And another lets me hold her baby, when I feel that I am able to.  It's all quite amazing really.  How did I ever fear not being seen as a mother of four in our new community?  Fear not being understood in my grief?  Of course I feared that, though those appear unfounded.  So thank you Angela.  Thank you Leanne.  Thank you Dee.  Thank you Michele.  Thank you God.

Overall I have been doing OK.  Lots of decent days emotionally - with several moments of genuine happiness around.

Then the tears come.  Once a week, maybe twice a week now.  Last night they came.  Not the painful, aching sobbing cries.  But the tears streaming down my face, quietly so, kind of cry.  I looked at the pictures of my sweet son because I wanted to.  And I smiled through the tears.  He was so beautiful, wasn't he?  Impossibly so.  His body just didn't do what it was supposed to.  None of the medical interventions worked how they were intended.  No explanations for that.  Early on I repeatedly asked myself "why?"  I don't know.  And never will.  I have come to believe that Ethan was given to Josh and me...as a glimpse into the Divine.  He was just that.

So I write tonight because it has been too long.  I don't feel pressured to journal because it has been a couple of weeks.  But rather know that writing is part of my self-care.  I've found myself forgetting to take my anti-depressant until the end of the day occasionally.  I don't go to therapy or a support group any longer - and don't feel the need to right now.  But I don't want to let my self-care regime slip completely.  So I take my pill every morning, journal tonight, and run 3-4 miles a few times a week at the Y.  Oh, and lose myself on Pinterest like any good stay-at-home mom.

Somewhere, inside, I knew.

My posts of late have been sad - or at least highlighting the complicated, devastating side to my grief. I should say that this post is likely no different in that regard, though I am having several days of getting by OK.  The low tide days are frequenting me - I just feel less inclined to write about them once the kids go to bed.  It's the harder days, or the harder aspects of this grief, that energize my writing.  I've never promised anything to readers, so I am not going to really apologize for this - but I do want those of you who read this to know that I am not in the corner crying all of the time.  Not right now at least, and for that I am thankful.  So, on with my post...


I have always had insight into my blessings - at least I like to think so.  I grew up with an older sister and two older brothers.  Two parents who are happily married - and who never split up or argued in front of me.  Grew up in a family that was comfortable financially, affording me great privilege.  I went to college at a wonderful institution, and then put myself through graduate school immediately following.  Employment in my field started the very morning following my graduation from the masters program.  Wonderful friends and family are a constant in my history.  Health was never a major concern - for myself or my immediate family.  I met the one I was to marry at just 17-years-old - and we knew that we would live our lives together.  Married at 23 - which in the Northeast is quite young nowadays.  The blessings went on and on, and still do truthfully.

As my life was smooth and filled with happiness I appreciated that this wasn't always a given.  In fact, I watched as two of my childhood friends' parents passed away of cancer, knew those who struggled with addiction issues, witnessed the strain of difficult family dynamics on friends, and more.  So I knew struggle, pain and tragedy were part of life - likely an unavoidable part.

In my mid-twenties I would catch myself, only occasionally, contemplating what the pain, what the tragedy of my life would be.

I should say here that I am a mildly anxious person as it is.  The type who worries over minor details regularly - not really major worries.  I am not kept up at night worrying if that germ will harm my loved ones, or if the world is safe for my children.  But as a teen I struggled with letting things go.  In college and graduate school I worked hard to improve this part of myself - and believe I mitigated the resulting stress and anxieties quite well.

I offer this information to explain that I may be a worrier about the small stuff, but not the big things in life.  So when I silently wondered what my tragedy would be, and I had an instinctual answer of sorts, I cannot dismiss this gut feeling as my anxieties.

The answer that was felt in my soul to that very question, was the something would happen to one of my children.  Did I know this?  I mean, really know it?  No.  But that general thought was the first to come to mind, and the only one to linger, whenever that question came up.  I didn't dwell on the thought.  Would dismiss it as "just one of the possibilities" actually.  But when my son died 9 months ago, after that shock wore off, I cannot sit here and tell you that I am utterly shocked how the tragedy of my life has revealed itself.  Medically I was shocked, still am.  Pregnancy was always "easy" for me.  My OB told me to have 6 babies because they went so well.  All until they didn't.  I was shocked for a long time that I somehow was mother to a dead baby.  But I think, perhaps, somewhere inside I knew something might happen to one of my children.  What that something was to possibly be, I had no idea - and I didn't spend much, if any, time on it.  That's not a pretty road to go down - particularly when it is out of your control.

I've never told this to anyone before.  Not before I spoke with my friend Lee two days ago.  I asked her if she thought I was crazy.  She said no, that we are spiritual beings as well as physical and social beings.

This, perhaps, intuition that I buried makes me think of a number of women who delivered babies who were stillborn.  On Glow (an online support resource for parents whose babies have died) there was a thread about this very idea - an intuition that something bad was going to happen to their babies.  I was amazed, though not shocked, to hear several women speak of a sense that they would never get to bring their babies home for some unknown reason.  A few dreamed of attending their baby's funerals rather than dreaming of their babies being alive.  For no known reason - no medical concerns identified at that time.

So here I am, wondering, in awe of our spiritual beings.  Did I really know, somewhere inside of me, that something tragic would happen with one of my children?  Can people really anticipate (apart from medical or major mental health conditions) life shaping events?  I tend to think it is possible.  As I write this I know life holds many unknowns for me and my family going forward.  But I no longer have that knot, buried inside, wondering if something bad will happen to my children.  It already has.  And Ethan is no longer suffering.  And I am surviving, by the grace of God.  I know more bad things could happen to our older three children, but I (perhaps irrationally) feel that the worst outcomes will not happen for my children at this time.  Somehow I believe that if they get sick, they will heal.  That if a tv falls upon them (as it did with Ryan) that he will somehow be OK.  It's an interesting mix to have PTSD - and the uncontrollable responses to triggers, and a sense of peace, of faith that my family will be OK going forward.  It makes for a beautiful mess.  I guess it makes for my grief and healing.

Lent, my way.

Ethan inspires me to be more.  Be better.  Love more.  I told him I would honor him in this way.  

Today is Ash Wednesday.  Yes, I chose to get my ashes - kind of cool having these moments officiated by my best friend & husband.  Most of you know I was raised Catholic - though I am no longer.  (Now I am Congregational - a denomination of the Protestant practice.)  Being raised Catholic Ash Wednesday meant it was time to "give something up" for the 40-days of Lent.  I think the idea behind this was to symbolize, on a ridiculously small scale, the sacrifices that Jesus made as he journeyed into the wilderness for 40 days.  As a kid that usually meant giving up something I really liked to eat - something sugary.  Ice cream one year.  Chocolate another.  As a young adult I explored my Christian faith a bit further.  Wondered how substituting one version of a sugary desert for another really made me a better Christian?  So one year, in my early 20s I think, I gave up swearing.  (I don't swear at people very often, you should know.  But I am raised just outside of Boston, and went to school in the city for 6 years - so I can swear a bit)  

And now, it is Ash Wednesday once again.  The first time since Ethan's death.  So I sit here and ask myself, honestly - how can I use this Lenten season to make myself a better Christian?  Rather than avoiding deserts I will be adding something to my day.  Something to make me a better Christian.  I will be trying to pray at each meal with my family - not just at dinner or the occasional lunch as well.  Also, I will be trying to tell others what I love about them more often.  Here is one of today's attempts to show my friends God's love.

so i have always felt close to you - from before the days of pink glasses and terrible bangs that my mother wouldn't let me grow out.  you define the word friend.  you must know this.  having so many people in your life who count you as their best friend, or certainly one of their closest.  you have a gentle way about staying in touch with people - even in their darkest hour (for me with ethan - or rather without ethan) that lets them know you are genuinely there for them.  and you actually mean it.  i love the way you allow me to speak about my fourth child, and don't get freaked out by the fact that i am speaking of a dead baby.  because he is my son, first and foremost - and you remember that with me.  i love the way you are funny - and don't take yourself, or allow anyone else, to take themselves too seriously.  people are always laughing around you - and that is a gift you offer.  i don't know your fiance well (yet) but that seems to be something  you have in common with each other.  i love and respect the way your family is the center for you - and i have often thought of your family, your relationships with your parents, and brothers growing up - and still to this day, as things for me to aim towards as i raise my own family.  you are a fabulous friend, person, Christian, daughter, sister, fiance and - if you choose one day, will be a fabulous mother.  in short - i love you. thank you for being my friend.

Simple.  Genuine.  Just the way God's love is.  How will you show honor God's love?  How will you perpetuate the love sweet Ethan embodied?  It's far easier than people make it out to be.  Why not try it?  And you can keep eating your chocolate too.

I fear...

I flipped the ricotta cheese over to see the expiration date.  Right there in the market my breath caught.  May 2013.

May.  May.  May?  How is that possible?  How am I approaching the anniversary of my water breaking?  Of my hospitalization.  Of my mother's day spent in room CWN854.  Of Ethan's birthday.  Of my sepsis & complicated c-section.  Of that terrifying night Dr. Van Marter told us our son would likely die and my moaning that followed.  Of Ethan's miraculous recovery.  Of Ethan's sepsis, 3 pneumothoraxes, and devastating brain bleed.  Of the come to Jesus conversation at that conference table with the doctors.  Of holding my sweet boy as he returned to our maker.  How?  How?  How?  

Tears well as I write this.  As I contemplate this.  Another bittersweet moment of this grief & healing process.  

How far away is this all?  Just 3 months now.  That means it's been 9 months since it all went down.  How?  How have I survived that long with so much pain in my chest?  I'm surprised I haven't drowned in an ocean of my own tears.  How have I numbly moved through the shock?  Felt happy again for the first time.  Experienced genuine joy occasionally.  I don't know how, but it has happened.  Time has moved forward - Thank God - truly, Thank God.  

I am in a different place, a softer place than 9 months ago.  I reread that sentence and want to take it back.  I am still as fucked up by all of it - and I am pretty sure big chunks of me will remain that way. And I am OK with that.  I guess.  Yes, I am - largely.  My grief is disjointed, confusing, exhausting, beautiful, terrifying and more.  That's why this journal is all over the place.  I write as I experience it - usually.

I fear May.  I fear that I will forever be jealous of people who birth healthy baby boys in May.  Fear that I will be too sad on May 19th to celebrate my son's first birthday.  Fear that if I plan that informal cookout on that day, as I had planned, with close family/friends that I will wake up that morning and want to cancel it.  Or that I will want to run away into the woods instead of sing him happy birthday.  Well, I am pretty sure I will sing him happy birthday - I just might sob through it.

I fear my husband's birthday, May 9th, will always be tainted.  That was the day Josh & the kids became sick with a terrible virus, that I then caught on the morning of May 10th - and 12 hours later my water broke.  I want to celebrate Josh's birthday - though know it will, for now at least, trigger thoughts of the tragedy that followed.  (This post is already disjointed so here's another thought - my good friend, via email, delivered her only child, sweet Jack, stillborn on her own birthday last May.  Sweet, beautiful, full-term Jack.  How about that for shitty?  That for being inescapable?  Another reason I fear May - for her and my 3 other friends' whose babies died last May.  Babies just shouldn't die.  Life becomes impossible when they do.)

I fear Mother's Day.  In and of itself that is a trigger for my grief, right?  Well, let's just add that it occurs in May - and last Mother's Day I gloriously (I am not being facetious) spent it on my left side bedridden in the hospital - 7 days before Ethan was born.

I fear May 23rd, 5:55pm - Time of Death.  Will I stare at the clock that day?  Likely.  Do I fear it?  Partly.  Partly not.  And both of those thoughts scare me.  It's impossible - this grieving business.  A full time job - whose tiring waves lap away at me.

I fear May 24th, 2013.  Being more than a year away from Ethan's life.  What's that going to be like?  More of the same, probably.  Shitty days/hours/moments.  Some good times thrown in too, with lots (hopefully) of decent days as well.

When I began this post I titled it "Already?" in reference to May approaching.  It morphed into what looms ahead for me with May.  So I changed the title.  I fear a lot.  Though not really.  For I know, I know, Ethan and Jesus walk with me.

Payphone

I numbly, yet gingerly, eased myself up into Josh's SUV that night.  Breathing my first fresh air in 2 weeks.  It was cold out for the end of May in Boston.  Yet the cool air only registered in a far off part of my brain.  As my discomfort from the c-section did.  Somehow my bags and belongings were loaded into the back of our car.  Either by Josh or the kind valet who had been notified of what happened just 1 hour ago.

I was sitting in the front seat this time, with no baby in the car to soothe and stare at on the ride home from the hospital that time.  A blue box of Ethan's things lay on my lap.  That's all we will ever have of him.

Josh started the car and the radio came on.  I hadn't heard music for 2 weeks.  That overplayed Maroon 5 song Payphone.  It's ingrained in my mind.

That song played all summer of 2012.  And I cried often when it came over the radio.  Occasionally I didn't.  But the sadness always accompanied that song.  Lyrically it is about a relationship - yet parts of it apply to grief.

                          If happy ever after did exist.
                          I would still be holding you like this.
                         
The other day Payphone came on the radio again.  This time a smile.  That's right.  A slight smile.  Yes, I was brought right back to that tragic night.  But not immediately to the tragedy.  But to the beauty of Ethan.  To my son and the one time I held him.

Ethan, draw me into your beauty.  Allow your beauty to overshadow the tragedy of your death.  Your life is bigger than your death.  Help me to feel that as May approaches.

                         

Am I starting to forget?

I've never really grieved before.  Honestly.

Sure, I've had family members die and those have been sad.  But I have watched my mother grieve her parents, watched my father grieve his best friend.  Watched my parents grieve their nephew (I was quite young when he died).  But I didn't have the deep tears myself.  Maybe because most of those who I had lost had lived a long, good life.  More likely because those I lost were not intimately close to me.

So with Ethan's death, it is quite different.  On both accounts.  He didn't get a chance to live much at all.  Never went outside.  Never felt the sun on his skin.  Never...never...never.  And on top of it he is my son, he is one of the four people I was supposed to keep safe.  So I grieve.  I grieve deeply.

My best friends' premature twin babies continue to do well - thank God.  And with every photo I see of them holding their babies in kangaroo care it stirs things up for me.  The other day I was jealous.  Happy for them and their blessings, and devastated for me and my family.  In attempt to help myself feel close to Ethan I looked at his pictures.

It's been 8 months ago now.  He held Josh's finger in a few of them.  That little hand holding his father's strong finger.  I wondered if he ever held my finger?  I can't remember.  I'm starting to forget some of the details of those four days.  It breaks my heart that I can't remember whether or not I ever felt his hand wrap around my finger.  I really can't remember.  Isn't that so sad?  But it's true.


Is this part of grief?  I know it is.  The distance offering moments of peace, yet at what expense?  Will a day come when I struggle to picture my sweet son's face from memory?  I hope not.  Yet possible.

My family room floor

In three days time movers are coming.  To take our belongings and move it to our new home.

As I write this I am staring at the spot on the floor, where I was sitting when my life changed forever. The spot on the green carpet where I sat when my water broke.  Folding laundry, I wondered what that was.  Had I just peed myself?  Surely not, that had never happened before.  But the other option was terrifying, in short, not good.  Josh was sitting with the kids on the couch watching Mouse Hunt when I got up to use the bathroom.  I came back and sat down to finish folding clothes when it happened again.  This time I said something to Josh and decided to lie down on the couch.  Things didn't get any better with that move, and now my anxieties were raised.

This being my 4th pregnancy I knew what was happening.  And from that moment on, from that place on the green carpet, my life changed forever.  My families lives changed forever.

I wonder if I will feel sad to leave this spot on Thursday.  If I will miss it in our new home.  Our current home is the place where Ethan lived inside of me, where our dreams for him lived.  Where our dreams for a family of 6 lived, beautifully cramped into our condo.  Where we had his crib, clothes and bottles waiting for him.

So as I pack the odds and ends left around I notice this spot.  It is with odd fondness that I do so.  That is my spot, my spot with Ethan.  The resting place of my blissful ignorance.  Of my naivete.  Of my mental health.  The birthplace of my trauma.  Of my fear.  Of my depression.  Of my older children's medical history including "younger sibling, Ethan, deceased - COD Grade 4 Brain Bleed."

I will say goodbye to our spot as I walk out the door.  And hello to a fresh start.

Looking in the mirror.

You know when you see someone who is managing an impossible situation?  The cancer survivor who keeps going?  The single parent who works 2 jobs, raises their children & still cleans their home?  The parent who is grieving their baby's death while working and raising their other children?  Oh wait, that last one is me & Josh.  This last one applies to several of my friends, most of whom I have met after Ethan's death.

But seriously, you know when you meet people facing impossible situations & ask them how they do it.  They answer, "what's the option?"  Or one thing at a time.  Or go on to focus upon their many blessings despite the tragedies or challenges facing them.  I used to hear these responses from cancer survivors all of the time and be in awe of these people.  Truly.  Those with terminal cancer often have the best attitudes.  That is not to say that they feel well, physically or emotionally all of the time.  Instead, it is to say even when things are hard, really hard, they keep moving.  Keep being thankful for the blessings that they do have.  Before Ethan died I used to look up to these people, still do really.  Used to pray that if I ever faced such an impossible challenge, that I could carry myself with the grace and fortitude that these patients did.  That the teenage clients I used to work with at The Home for Little Wanderers displayed.  Some of them may have been acting a fool some days, but hey...they still got out of bed each morning, breathed in and out and usually got dressed.  That's more than most of us would have done after how abused many of them were as children.

I find strength from others' strength.  Surely if they can continue on, I can right?  I'm starting to appreciate that perhaps those who have shared that Josh & I inspire strength or faith in others may be telling the truth.  For the longest time it didn't seem possible.  After all, getting out of bed & feeding our other three kids isn't an option just because Ethan died.  Breathing in and out couldn't be inspiring.  But perhaps, to some, it is?

Today I attended my last service at our church, as Josh has been called to a different church and our family is moving there this week.  Most goodbyes are emotional, at least the ones where people have carried you during your Major Depression and PTSD.  I anticipated some tears, on both sides.  What I didn't anticipate were the humbling, candid words by friends saying that I somehow inspired them.

Is it really possible that in our darkest hours, when we want to be on the floor crying (and sometimes are), we somehow display contagious strength?  The courageous cancer survivor.  He's really just my friend.  The determined single-parent.  She's really my colleague.  Those who inspire are really people, just like me and just like you.  So today I look in the mirror.  Proudly.  If grieving publicly for all to see somehow affirms or validates someone's experience, what a gift for me.  If my way through this grief, depression and trauma encourages someone to keep moving forward, another gift.  If seeing me get out of bed on the hard days is somehow inspiring, then perhaps this is God working some good from tragedy.  And for that, I am thankful.

Go ahead, look in the mirror.  I know it can be uncomfortable for most of us.  But the person looking back is capable of amazing things.  Look for your strength.  Chances are you probably are inspiring others already.  Be proud of yourself, I know I am.

The Dead Baby Card

Life deals us cards.  For some it may be the cancer card.  For others it may be the handicapped card.  For me, the dead baby card.

Yup, I said it - I have a dead baby card.  A select few who know me have heard me reference this card - typically those who have heard about it fully understand me, and get the thoughts behind it.  Oh, and they appreciate sarcasm as well, even in the shittiest of times.

I should pause here and warn that this post may have crass language in it - please keep in mind that I am treating this blog as my journal, so I only minimally edit my thoughts for public consumption.

We don't get to choose our cards, and we cannot trade them in.  Once a cancer survivor, always a survivor.  Typically, if someone has a physical handicap they incorporate that into who they are.  After Ethan died, I will always be a mom of a baby who died.

So this card, it only serves certain functions.  I prefer to play my card as a buffer...to keep absurd, hurtful, and douche-like comments about Ethan and my grief journey away from me.  I like to think that people will pause before opening their mouths to me, and refrain from idiotic comments.  After all, things are hard enough right now without people adding to that.

The dead baby card is not to be played for sympathy, that is an abuse of the card.  And remember, the reasoning behind my card being issued to me was horrendous - an event that I would trade my card in for at any moment if that were allowed.  So don't sit there, reading this, judging me please.  I don't wave my card around for the world to see as attention-seeking behavior.  I only place the card on the table if I feel judged about my grief or that Ethan's beautiful memory is being threatened.

Shortly after Ethan died, probably somewhere in June, I realized that I had this card.  That I would have it forever.  And I thought that it's use would at least grant me reprieve from the offensive remarks or judgments of the world for at least a year.  Sadly, I am reminded of late that this is not the case.

I am blessed to have an AMAZING support network of friends, family and church members who honor and respect Ethan's memory and my grief.  Many parents grieving their baby cannot say the same, sadly.  However, there have been occasions recently where it seems that some individuals think I should be further along in my grief by now.  You know, "it has been ... months now."  That one was offensive and insulting and just 5 months after Ethan's death.  Another was from a somewhat distanced friend (a nice person who clearly didn't get how to speak to me).  Here's a tip, when you start a conversation off with a "this is coming out of love" or something similar, what follows generally is not going to make the person feel any better.

Is there an expiration date on my dead baby card?  When the card is only played to protect myself and those that I love?  I sure hope not, goodness - please give me a year at least.

If you made it through this entry I hope you don't think I am the douche!

I'm proud of myself.

This post follows up on Taking the Bullet, that I wrote last night.  


Today my best friends and I somehow navigated an impossible situation together.  Yet navigating this impossible situation was oddly smooth.  So you know from my previous post that my best friends, Mike & Jenn, had their beautiful twins at just 27 weeks gestation yesterday.  Today we discussed whether a visit would be OK for one another.  You know, given that I am pretty much proof of their worst nightmare...and that they are currently living a similar experience to what caused my trauma.  But Mike & Jenn are pretty much my brother & sister - they are Auntie & Uncle to my children, and I am surely Auntie to their Katherine & Lucas.  So a visit was fitting.  And for that I am thankful.

I drove into Boston & prayed to God to give me the strength to do this.  Thanked him for strengthening me - asked him for me to be a source of strength for my friends, rather than fall apart myself.  I was with them for 4 hours or so.  As I checked in with security they rounded the corner to join me.  We rode the elevator up together and the door opened.  I stepped off and realized that this was the exact floor I was on for 10 days in May.  There was "my" room, the room where Ethan lived safely inside of me.  Someone else was in it now, obviously, and I walked right by it.  The visit was excellent, not overly triggering for me.  It was beautiful to sit in the visitor's chair this time.  To see my dear friends, who have fought long and hard for their family, to be in the bed this time.  To be the new parents.  It was a blessing.  I left her room for a minute to get a cup of water - and it brought me right back to my time there.  When I went in the hallway I thought of the last time I was there - being brought on a stretcher down to labor and delivery urgently, trying to save Ethan.

Then they said that I would be welcome to go with them to visit the babies, if I wanted to.  But no pressure.  I love how our friendship includes the "no pressure," and actually means it.  I said I would love to go, which was true.  It's a different NICU than the one Ethan was in - perhaps not a bad thing for me.  Offering slight distinction in experiences.  Jenn led the way to Lucas' bedside.  And later to Katherine's.  They are so beautiful.  In every way.  How can people not believe in miracles after seeing newborn babies?  I just don't know.

They are smaller than Ethan - at just 1 pound each.  But what struck me was how much healthier they are than Ethan EVER was.  I mean in every way.  Sure, they were born a week earlier than he was & weigh less than half of what he did, but they are clearly healthier than he ever was.  I am so thankful and find it reassuring for the babies, Jenn & Mike - that they are genuinely doing as well as they could hope for.  At the same time, this experience - seeing 1 pound babies, being so fragile, made me realize just how sick Ethan really was.  From the moment he was born, my poor, sweet Ethan was so very sick.  So sick...

I brought them each a small butterfly cut out of card stock.  They were a gift from a friend who had come home one day & found over 100 of these butterflies cut out & strewn across her dining table.  They were not there an hour prior and nobody had been home in the meantime.  When this friend saw the butterflies she knew they were meant for me.  Click here to read more about this.  So, I picked out a butterfly for Lucas and one for Katherine.  They taped them to their incubators as a way for sweet Ethan, their angel cousin, to watch out over them.  Ethan is right there with them, keeping them safe.

When I opened Katherine's incubator and gently touched her left leg I was brought right back to doing the same thing with Ethan.  It was strange, in a comforting way.  I knew she wasn't Ethan.  But a smell came back to me, one that I associated to the NICU experiences with Ethan.  I can't really explain it.  It filled me with a warmth over me, felt that Ethan was right there with me.  And you know what?  I think he really was.

So I prayed over each of them, and asked that Ethan stay with them.  Especially when Jenn and Mike could not be right by their side.

I was OK until I turned and saw this lovely family sitting in the NICU with their big, full-term baby on the same type of ventilator that Ethan was on (it shakes the baby actually) and the baby appeared sedated.  It was heartbreaking.  The parents were sitting there, holding hands.  That must have been what Josh and I looked like back in May.

I'm proud of myself for going - honored that they invited me, and damn proud of myself for going & doing so well.  Oddly, I feel that Ethan has a job to do now.  His job is to keep Lucas and Katherine company and to offer them strength.  I'm proud of Katherine, Lucas, Jenn, Mike, Josh, Ethan and myself.  That's not too bad for one day.

Taking the Bullet

I wrote this post in my journal yesterday...  I was honored & blessed to have a beautiful visit with them today, so I will post about that experience for me later tonight or tomorrow.  But this is where my head was at last night.


I know this isn't rational (not much about my grief is) and it isn't the way things work, but I have been hoping that I took the bullet for my friends and family.  Took the bullet for this babyloss stuff.  What I mean to say is that I don't think anyone else who is grieving the death of Ethan should have to face the same trauma of losing one of their own babies.  I don't think they should even have to face the potential of that.  Or the trauma of an extended NICU stay.

Today my best friend delivered her twins, unexpectedly, at just 27 weeks.  Their sweet girl Katherine weighs less than 1 pound and their sweet boy Luke almost 2 pounds.  I don't have many details at this point - but do know they are in the best of hands medically in the Children's NICU (the same doctors cared for Ethan as well).

So here I am, praying endlessly that these sweet babies will get the miracles that Ethan did not.  Praying that i will not be overly jealous of their happy endings.  Praying for Ethan to be with them in their incubators (he's really there by the way), offering them strength, company and love.  Praying that my best friends find the strength to hope and the endurance to continue on as their babies do the same.  Praying that the harsh reality of Ethan's death does not weigh too heavily on their minds as they fight to remain positive for their own babies futures.

Clearly this is triggering for me.  Someone with PTSD whose baby died in the NICU just 7 months ago.  Enough is enough, right?  It's time for things to get smoother now.  I cried the day I heard my best friend tell me she was pregnant.  Cried tears of joy, thankfulness and relief.  Today I congratulate them on their beautiful family.  Please join me in praying that they get to go home, healthy and together as a complete family one day soon.

Dare I Say...?

My major depression is lifting.  Slowly, but it is.  I've mostly been having days of the low tides of grief with an occasional, yet painful, high tide thrown in.  

Every time I journal of things being bearable I worry that those who read this will think that I am better.  Why do I always feel the need to include this disclaimer?  I guess I need to assure people that I am not yet OK - not to close the door on praying for me & my healing...that I cannot have healed from the most tragic loss in just 7 months.  As I write this, part of me thinks if the world reads this and thinks that I am "better now," that it gives the world permission to move on from Ethan.  To forget him.  And I am not OK with that.  So consider yourself educated, I am still a hot mess.  

I don't spend my days crying endlessly anymore, not usually at least.  The shit days are punctuated with Post Traumatic Stress Disorder freak outs (thankfully that's only happened 3 times recently) rather than the physical and emotional hangovers that result from a sobbing binge.  (By the way, that's how I lived my first 3-4 months after Ethan's death.  It was awful.  Rather than using the cloth diapers as burp clothes for Ethan I was using them to catch my tears and runny nose.)  

Most days I am able to attend to the day-to-day activities of my family, and enjoy them.  Genuinely.  Early on I remember moms whose babies had died years prior had told me things would change somehow, and I believed them.  Believed them because it wasn't possible for someone to live in that misery of acute grief & shock.  But now I think I might be wading into healing waters.  I'm not sure how I got here, but I'm here.  I can look forward to date night with Josh.  Have a great time with friends at dinner.  Be excited about settling into our new home.  I can feel all of these things fully.  

At the same time I am feeling positive emotions I am simultaneously feeling sadness.  Envy.  Longing.  Anger.  The grief is still there, both beautiful and ugly.  I don't want to avoid my grief, it's a forever journey.  As my love for Ethan lasts, so will my grief.  I am at peace with this reflective nature.

I no longer feel like I am faking it.  Dare I say the light in my eyes might be returning?  I think it might be.  Flickering.  And that's a start.