I am broken, yet beautiful

It happened again.  Another PTSD freak out.

Last night I heard a loud crash and turned around to see Ryan screaming from underneath a tv.  It was one of those old tvs, you know - the heavy ones that aren't flat screen?  It was medium-sized, but more than heavy enough to really hurt, or I thought kill, a toddler.  Somehow it had fallen over (I think Ryan may have pulled it down off of the coffee table accidentally).  The tv completely covered Ryan's head, torso and part of his legs.  All I could see were parts of his arms & lower legs.  Screaming, he was screaming for me to help him.

Terror.  Another one of my son's is going to die.  I quickly lifted the tv off of him and was sure I would see a bloody mess of cute Ry underneath.  Screaming.  Screaming for Josh to come and help.  He did.  Ryan somehow wasn't visibly bloody but I was sure he had internal bleeding somewhere, that his brain had suffered serious damage.  Josh took Ry and this screamed out of my mouth.  "Is he going to die like Ethan?" 

Hyperventilating.  Sobbing.  Josh said Ry somehow looked to be fine.  I collapsed onto my knees, hood over my head and sobbed.  Josh told me to get myself together or leave the room, as I was alarming the kids.  He was right.  All I could manage to do was stop screaming.  The tears flowed incessantly   Breathing was anything but calm.  I knew that I should leave the room, but I couldn't.  Ryan is going to die and I will never forgive myself for missing the last moments of his life for a selfish reason.  Really, that is what I thought.

Slowly, very slowly I entertained the idea that Ry might live.  It took me until this morning to realize that he was going to be OK.  When I woke up to him on the monitor this morning I was relieved he didn't die from a concussion somehow.

I am broken.  Post Traumatic Stress Disorder.  I studied it in graduate school.  I treated it for years in residential programs.  Now I now it from the inside.  I don't walk around constantly worried that something bad is going to come out of nowhere and strike my family.  But when something bad did happen, I clearly expect the worst outcome.

So I am broken.  Yet I am beautiful.  God made me human.  He made me capable of being broken, yet capable of healing too.  I am at peace with being imperfect.  Course I hope the PTSD stuff subsides, as it is quite uncomfortable for me and those around me.  But for now, it is OK.  It is allowed.

We all are broken, in some way.  At times more so.  God doesn't expect us to be perfect, so why do we?  Embrace the imperfections.  Embrace the healing journey.  Embrace God's grace.

My good friend Kathy titled her blog about this.  Beautiful, Broken Me  Check it out, she's real, imperfect, a Christian, a mother, beautiful, and hilarious.

Ethan's Year

2012 is Ethan's year.  The year I knew my son, from the inside and out.  There were a couple of weeks in 2011 where I was pregnant with Ethan too, but mostly it was all in 2012.

New Year's used to be a nice excuse for a party with friends and family, but truthfully I've never really cared a lot about the holiday.  Not one for resolutions or being sentimental about years closing out.  This New Year's is different.

2012 has been the hardest, most painful, I'll dare to say the worst year of my life so far.  I can hope forever, or at least for a long time.  Clearly with Ethan's death, grieving, the depression and ptsd that has followed, a difficult work scenario and stressful finances on top.  For those reasons I am ready to say goodbye to 2012.

Yet my heart longs to stay in 2012.  In the same calendar year I held my son.  In the same year all of the pictures we will ever have of Ethan are from.  I cannot look forward to 2013 with hopes of true family pictures to come.  Hopes of cuddling with him one more time.

2013 holds hope for ongoing healing for me and my family.  Yet it holds further distance from the brief moments I touched Ethan.  Most of you probably can't understand this part.  Yet my heart knows differently.  So this New Year's Eve will be another one of those bittersweet moments.

Merry Christmas Ethan

We have a stocking for you, with an "E" on it - matching the rest of the family's.  There was no doubt that you would have one still.  But tonight, when Santa comes, he will not stop to fill it with traditional treats as he does for your siblings.  Instead, Caroline will tuck away a picture she has drawn for you.  We will place another beach stone that we have painted for your first Christmas inside your stocking.  And I will place a letter for you...

     This is your first Christmas my sweet boy.  I am keenly aware that you should be here with me, in my arms tomorrow.  I could not buy you gifts.  Cannot wrap them, only to watch you discard the gift inside for the far more fun wrapping paper, string and bow.  That eats away at my insides, brings the now familiar sadness and longing to my eyes.  I've healed a bit these past 7 months.  Tears can threaten to fall over my eyelids without actually doing so now.  Before they would just fall endlessly.  

    You have visited me often, and I thank you for that.  Through the butterflies, rainbows, and the love you have inspired among others.  

     Christmas is the time we celebrate Jesus' birthday.  Give him a hug for me tomorrow, will you?  I know he hears me, as you do, but you are with him in a different way.  I have begun to see people write and hear them talk about their babies' first Christmas.  That should have been us as well.  So don't be a stranger tomorrow please.  Be here when the kids run downstairs to see their presents.  Be here when we sing Silent Night by candlelight tonight at Church.  Be here when we pray and share what we are thankful for.  Know that I am thankful for you.  Be here when we open our stockings, as we will open yours and remember you.

     Merry Christmas Ethan.  You are loved endlessly,
                                                                                 Mom

Raw Nerve

I am a raw nerve this week.  I know my strength, and feel it come from my faith.  Yet this is one of those times when Jesus must be carrying me, because I can't hold myself up alone.

I'm pretty sure that I have PTSD.  After my responses to a few triggers this past week I can no longer deny it.  First was the massacre of those beautiful children & adults in Newtown.  Tears have flowed repeatedly for those children, their families and their community.  Then last night I heard that a friend was admitted to the same hospital & same floor I was on when pregnant with Ethan.  In my heart I believe that this good friend & her beautiful baby will be OK, will be healthy in the end.  I really believe that.  Yet my initial response to hearing that there were some concerns triggered my own anxiety.

I immediately tracked down a mutual friend until she reassured me that our friend & baby were OK.  So I calmed down.  Until I realized that they were in the same hospital, with the same staff, etc.  Somehow I had assumed they were elsewhere.  I am reassured that they are there as it they are getting the best of the best for care.  No doubt about that.  But as soon as I knew where they were I freaked out.  Not for them, but for me.  Somehow I was right back there.  In that room on my left side.  Back in that NICU, where my hope lived and Ethan lived...and where he died.   I started to relive it all.  Much of it was the blessings, the immense love and superior care we received from everyone there.  But much of it was the trauma.  I have found myself replaying experiences.  Found myself reminded that others, thank God, get their happy endings.  Get to leave that hospital with healthy babies after scares.  Found myself reminded that I will never get my happy ending with Ethan, at least not in this lifetime.

So last night I was having a bit of a panic attack & serious wave of grief.  I prayed hard.  Prayers for my friend, her baby & her husband.  Prayers for the care team watching over them, that God guides them to a healthy outcome.  Prayers that Ethan come to me in my time of need.  That Jesus carry me, wrap his arms around me.

This morning I awoke feeling a bit better, but still very much on edge.  A friend stopped by as she had something to give to me.  Steph and I met through a couple of different avenues.  Primarily, we share a mutual friend, Dot, who is now in Heaven.  Steph sat on my couch and started to talk.  A few times Steph had been driving and noticed a rainbow.  She took that as a sign to pray for me, which she generously did.  That night she would see on Facebook that I had been struggling that day, hence the signal for her to pray for me.  Steph had a few crafts supplies out the other day, as she makes her own cards.  She has a butterfly punch that she had used only a few times.  That day she left her home to pick up her son from school.  Along the drive they pulled over & witnessed a beautiful double rainbow.  When they returned home Steph found these beautiful butterfly cut-outs all over her table.

The remarkable thing is she had not cut most of them out herself, just a few.  The table was not how she had left it.  Nobody had been home during her brief trip to pick up her son.  She felt that our friend Dot had left them there for me, to know that Ethan is OK.

I know that Ethan is OK, better than OK.  I know that I will be OK eventually, I am on that road right now.  I'm just not there this week.  Not yet.

So thank you Steph.  Thank you Dot.  Thank you Ethan.  Thank you Jesus.  Thank you for carrying me today.

We should all be like a 3-year-old

Jackson, my 3-year-old son, is the coolest person I know.  OK, so are my other 3 kids, but this post is about Jackson.

You know how triggered I've been this week.  With the Newtown massacre, Christmas approaching without my sweet boy, the 19th and 23rd of the month approaching, and significant stress about finances related to selling our home.  As soon as I catch my breath and start to think I am no longer coming off as the crazy woman, something hits & my anxiety comes up again.  As usual, people with good intentions, or at least harmless intentions, say things that have the opposite effect to some degree.  It's been one of those weeks I guess.

So this morning I was sitting on the floor at the back of Church while the choir performed a beautiful rendition of Silent Night.  Jackson and I were quietly playing with his Spider Man car.  "Sleep in heavenly peace."  Over and over.

     I'm looking down upon my sweet, beautiful boy with one eye open as he doesn't have the strength to open both eyes.  Doesn't have the strength because his life is slipping from him, as he rests in my arms, in the crook of my left elbow... Now he hasn't breathed in a while, I know he's gone and the doctor verifies it.  Sleep in heavenly peace Ethan.  Truly.

Then I'm thinking of those poor little kids in Connecticut, sleeping in heavenly peace.  Far too soon.  Tears stream down my face as I roll the car back and forth with Jackson.  He notices, comes to me and tells me "don't be sad mom, be happy!  Ethan is in Heaven.  He's right here in church!!  I'll wipe the drops mom."  Jackson was calling my tears "the drops" and proceeded to wipe them away with his gentle finger.  Then the biggest hug ever with a slight patting on my shoulder from his hand.

I'm pretty sure kids get it right.  Get it right when adults struggle to.  A friend commented to me today that it is amazing that a 3-year-old knows just what to do with grief when so many adults stumble.  We should all be like Jackson.  Straight up love.

Triggered

Yesterday was unspeakable.  Those sweet babies, all 20 little children and those 6 brave, heroic adults all gone too soon.  The unspeakable acts.  I found yesterday quite triggering for me.  I know it has triggered most of us.  Those of us who are parents, grandparents, or just a compassionate human being were thrown into shock & grief yesterday.  For me, it was the same.  Perhaps the aftermath of the grief being more real to me than most.  

People have told me that I am living their worst nightmare, having a child die.  Truthfully, having Ethan die peacefully in my arms has never been my worst nightmare.  Having my children harmed, abused or killed has always been my worst nightmare.  Having the privilege of counseling abused children showed me what terrifying things really exist.  

Yesterday morning I dropped Caroline, my sweet pea, off at Kingergarten.  Watched her bounce into school with her purple leggings on and wearing her sparkly princess backpack.  Then I drove myself into Boston for an ultrasound.  And no, I am not pregnant.  I sat in the same waiting room I sat in while pregnant with all 4 children.  The room was filled with pregnant women, with their toddlers getting antsy and with their spouses beaming with excitement.  It was quite painful to be back there, without any baby this time.  I hadn't been back since I was pregnant with Ethan.  They were running far behind so I had to wait longer.  There was this lovely couple, newly pregnant with their first child clearly, drooling over their ultrasound pictures.  I wanted to run far away from them, from this office that belonged in my past.  My happy past where dead babies did not exist.  Not for me at least.  I was finally called into the room and the ultrasound tech and physician commented that they hadn't seen me since my amniocentisis in the spring.  Wondering why I had never returned for the routine third trimester scans.  "Because my baby died," I replied   They were gracious.  Understanding that I wanted to get in and out of the office quickly.  The doctor made a comment that she he must have died due to a chromosomal problem, and I corrected her.  She asked what happened then?  My answer was that there is no answer.  No one knew, no one could understand any of it.  No medical answers to be given.  On the ride home from my doctor's appointment I heard of the tragedy in Newtown, CT.

So last night I cried.  I cried as a mother of 4 children.  Cried as a mother of a sweet ponytailed 5-year-old kingergarten girl.  Cried as a mother who knows the depth of shock and pain that entails grieving a young child.  Cried as a resident of a sleepy New England town.  Cried as a person.  Cried as a Christian.  Yet my heart is thawed by the countless stories of heroics, bravery and love yesterday.  

Caroline came into the room this morning when I was watching the news.  I immediately turned it off & put on Mickey Mouse.  She knew something happened yesterday at a school because she was in the room when the news broke through.  (Don't be thinking we have family CNN time or anything please.)  This morning she walked up to me and asked what happened.  I told her a lot of teachers kept a lot of kids safe yesterday, just like Mrs. Doyle keeps her safe.  "But not all of the kids right?  Not all."  "No honey, they couldn't keep them all safe.  But you are safe, I promise you."  "Ethan has a lot of new friends in Heaven now."  "Yes, yes he does."

I cannot know what the terror is like for the parents of those twenty children, but I can offer my love, prayers and promise to remember their children always.  As I will remember those 7 innocent adults whose lives were lost as well.  I am so sorry that more families join me along this unwanted road.  All I can offer is to walk with them.

Walking the Walk

So you know I am a counselor.  A therapist.  A social worker.  A clinician.  Whatever you want to call it.  It's what I went to graduate school for, what I trained for, what I'm licensed for.  It's what I do.

In grad school professors and supervisors tell you it is healthy to have experience being the client yourself, at some point.  Sure...that made sense.  Professionally it's eye opening to be on the other side of the table, sitting in the other chair.  Professionally it is important to be sure you are addressing your own shit so it doesn't interfere or find it's way into your work with your clients.  Personally it makes sense, who couldn't use a little "me time," a little "tuning up?"  Surely I would benefit from some fine tuning on my coping skills, or a small dose of an SSRI, right?  I've always been a worrier after all.

I write this with a slight smile breaking out.  Remembering exactly what it felt like to have therapy be an option.  For it to be a nice thought.  To be a one of the things that inevitably slides down that to-do list you have running in your head.

Driving the hour ride home from Brigham, the night Ethan died, I knew it was finally time for me to go to therapy.  No more pushing it to the side.  It was no longer an option.  It would no longer be a little joke close friends or family would say to me.  "You're crazy, you need a therapist."  (by the way, this is not me saying people have to be crazy to see a therapist, by now you should know me better)

Your baby dies, unexpectedly.  You get a therapist.

The excuses to avoid therapy don't really work any more, right?  Having your life, and your family's, flipped upside down & torn apart in a 2-week period, never to be fully repaired again demands some attention.  Ethan died Wednesday night.  Friday morning I spoke with Cheryl, the woman who agreed to be my therapist, on the phone and scheduled my first session for Tuesday night.

Tuesday night came & I was nervous.  Not nervous to talk about Ethan, I craved talking about him & sharing our story.  Nervous to actually be sitting in the lobby, to be the client.  My friend Robin had to drive me since I still wasn't allowed to drive due to the c-section.  (Best part is Robin's car battery died while waiting for me that night so we had to wait in the parking lot for AAA to come.  Of course I was the last client of the night & my therapist walked out to find me in the car, probably thinking I was stalking her or something - it's all good though, it was funny.)

Sitting in the room was smooth for me, I am an open book anyway.  Have always found it healing to share my story, whatever chapter I am living.  For years I have been encouraging clients to embrace the work that is before them, painful as it may be.  I tend to think that the healthiest outcome (usually) is through rather than around something.  For me, the something being the death of Ethan.

So, I sat there that first night and asked Cheryl to be sure I was walking the walk.  To work my grief, through every terrible day, hour, breath.  I asked her to journey with me.  She has done so and more.  She has held my pain, pain that cannot be appreciated from reading this.  Pain that is visceral, endless.  Cheryl understands this pain better than anyone in my life, with the exception of those few who have had a baby die too.  So I thank Cheryl genuinely.  Thank her for helping me heal.  I'm moving in just over a month and will be two hours away from Cheryl.  I'm supposed to find another therapist, to have available if I need it.  I haven't done that yet, because I don't want to.  We'll see how that plays out.

(In true journal form I am wrapping this post up early because I am getting tired.  Sorry that this one doesn't have an eloquent closing.)

Therapy has worked for me thus far.  Probably has helped my marriage, my relationships with my children, family and friends.  I've journaled, meditated, prayed, exercised, talked, cried, yelled, read.  I'm walking the walk, or at least trying to.

Ethan will travel

We are moving.  A previous post discussed how difficult it is to say goodbye to our current Church family, community, home.  This post is to reflect upon my emotional journey that has accompanied Josh's interview process.

About halfway through the extensive interview process the Search Committee invited me to join Josh one afternoon.  He was having a second interview with the group after which they wanted to show me the town & Church-owned parsonage.  We had a nice meal together and I excused myself for about an hour-and-a-half so they could have their interview.

I walked around the Church, familiarizing myself with the sanctuary, nursery, etc.  Sat in the nursery for a while emailing people on my phone.  In my gut I knew we were going to move to this town, switch our communities.  I just believed that he was going to get the job.  Then the nerves set in.  Not the kind that happen to most people.  The kind reserved for parents of a dead babies.

These new people don't know Ethan.  Don't know of Ethan.  When they see my family they will see 3 children, not 4.  They don't know how deep my grief goes, how expansive it is.  They haven't witnessed my Tides of Grief.  Haven't seen me shake with tears yet.  Surely they will as his birthday approaches and the anniversary of his death approaches.  Oh, and as Josh's birthday & mother's day approaches.  All 4 of which occur within the same 2 week period in May.  Yet.  Will they run away from my pain as it is so unpleasant?  Will they be strong enough to hold my pain?  As my current Church family has.

I will have to tell countless people, over and over again, of Ethan.  The up side is I will get more chances to talk about my beautiful son, his life, God's miracle.  The hard part, the nervous part being seeing all of their faces go from smiles to horror again.  Pretty much going back to the first 2 months after Ethan's death here...not for my depression but for the frequency with which I shock people by talking about my dead son.  Even while I write this I wonder if those who read it recoil a bit with the phrase "dead son."  I don't want people to, yet I know it tends to have that effect.  And that effect multiplies when the phrase is heard in person, rather than read in a journal.

So I was sitting at one of those rectangular, white tables.  You know, the kind most church fellowship halls have around.  I became tired emotionally, put my head down on the table.  Prayed to God.  Asked him if Ethan will come with me, here to this new place?  If this was the right place for our family to move?  Will I feel even further away from Ethan if we move here?  His ashes were spread off of the coast of NH after all.  Those who "knew" Ethan when he was alive will be a state away.  I prayed hard, prayed honestly.

Raised my head & looked up at the bulletin for the search process.  The bulletin that updates the congregation as to where the search committee is in the process of finding a new minister.  I walked over to it.  And found it decorated in beautiful butterflies.  Not simple little stickers or drawings.  Intricate butterflies were all over the bulletin.  God answered my prayers.  He told me that Ethan would come with me here.  That he was already there, guiding us to this new Church and town.

In true Annie fashion I cried a bit.  Of course my timing sucked & someone from the search committee walked in to find me crying.  So as not to appear like a full on lunatic (crazy minister's wives do not win their spouse's jobs) I tried to hide the tears.  I failed.  This kind woman approached me, I told her that the significance of butterflies to me.  She placed a gentle hand on my shoulder and offered that perhaps, this was a sign that this was the right match.

From that moment on I knew this is where God is guiding us.  Guiding me.  And I know that Ethan will travel.

'Tis the Season

The nicest thing happened today.  A simple gesture really, yet one I will remember forever.

Jackson, Ryan & I went to breakfast at our favorite spot.  On the ride there Jack said Ethan was with us in the car.  (Love this.  And yes, I believe him)  As I put our coats on the waiter took my bill to the register.  I thought to start ringing me up so we could make a quick escape.  We are regulars there.  Instead, the waiter told me to have a good day.  "But I haven't paid yet Isaiah."  Apparently another patron, this lovely man named Larry, had paid for our breakfast.

I looked to him and genuinely said thank you.  I was shocked.  He said he had observed me parenting the boys and was impressed with our family.  Saying that he is a parent, though his two children are gown now.  Remembering the days that I am currently in.  The Blessed Chaos.

Went on to say that I am a wonderful mom.  That the boys are lucky to have me.  Saying that there must be a special place in Heaven for people like me.  At this point I started to get choked up.  You see, I wonder if my depression has tarnished the mom in me.  I am sure it has at moments.  So when this lovely gentleman told me that I am doing a good job it hit home.  Cue the tears - just a couple, but still...unexpected.

Compelled I told him that he has no idea how his kind words are appreciated.  Briefly shared what I wrote above, and what has caused the depression.  This loving man was moved by what I shared...and here we were at the counter of The Big Bean making quite an impression on one another.  With Isaiah watching.

"I'm Annie." --  "I'm Larry." -- "Merry Christmas Larry.  God Bless."

Jackson said thank you to Larry for his meal.  And we went on with our morning.  I'll never forget Larry.

'Tis the Season.  No need to pay for someone's meal necessarily.  Just share the kind thoughts in your head.  They make a difference.

Thank You

We're moving.  Josh has accepted the minister's position at a different church, in a different state.  We're moving back "home."  Home defined as Massachusetts, close to Boston, close to the beach, closer to family & friends.

As I pack my home, I am realizing that this sleepy little town of the NH seacoast has become my home as well.  We moved here when I was just 27 years old, when I was young.  When I felt and looked young.  These past 4 1/2 years I have grown up.  These past 6 months I have aged exponentially - I have aged 50 years in six months inside.  Really.

My church has welcomed me, Josh and Caroline from day 1.  Caroline was just 10 months old when we moved here, she wasn't even walking or talking.

My church has witnessed my family grow.  I was pregnant with Jackson, Ryan and Ethan here.  They threw me a baby shower when expecting Jackson - such love.  

When pregnant with Ethan, early on, I was placed on full bed rest (except for bathroom privileges) at home.  This happened on and off for weeks.  I wasn't allowed to carry Ryan - 6 months old at the time.  Wasn't allowed to sit up to feed him his bottle.  Certainly wasn't allowed to chase after my 2 and 4-year-olds, take care of the house or make their meals during those times.  My church family stepped in and took care of me & my family.  This happened even more when the shit hit the fan and I was hospitalized in Boston.  The church was gracious with Josh about when and where he did his work, working from home at times or writing a sermon when visiting with me in the hospital.  

They prayed for me.  For Ethan to live.  They grieve Ethan with me, as they expected their family to grow as well with his birth.  They have not shied away from my grief.

And now, I am preparing to leave this community, this family.  Yes, I am heading for home in January.  But I am leaving one of my homes behind - surely.  So this move is exciting, is God's path for Josh and our family.  For me.  Though it comes with sadness too.  I am learning that is part of life.

The minister's wife, the friend, the church member, the Christian, Annie...is looking to find a way to say goodbye to my church, my family, my home.  The only way I know how to is to say THANK YOU.

Thank you Shirley for sitting in front of me each week in Church.  For cleaning up the crumbs my kids leave behind on the floor, under the pews.

Thank you Jeff for getting to know me, allowing me to get to know you, during those weekly small group meetings at Dori's home.

Thank you to the 3 ladies who have demonstrated that it is possible to LIVE after the death of a child.

Thank you Meagan for always telling me you love me.

Thank you Abby & Emily for being our friends & babysitters.  For saving my sanity by giving me time to remember that I am an individual, apart from my children.  For the countless times you took care of my children, vacuumed the floor, cleaned the home and more, when I was a state away in the hospital.  For helping to fill my responsibilities as mom when I couldn't be there myself.  And for kindly refusing to be paid for all of that.

Thank you Mary and Jacque for "getting" my rambunctious children.  For loving them because of it, instead of despite it.  For teaching my children during Sunday School...thank you Kathy as well.

Thank you Lyndal for being Caroline's first friend here in NH, and one of her closest.

Thank you Kate for being a true friend to me.  For always being real with me.  For talking with me about Ethan, and wanting to.  For watching my children so Josh could rush to Boston when I was in labor with Ethan.

Thank you Darlene for taking Caroline for multiple play dates.

Thank you Rich for demonstrating what it is to be a Christian.  Always willing and eager to help when a need is present.

Thank you Elzina for being the kindest woman I have ever met.  For loving my children.  For loving me.

Thank you Dwayne for being the kindest man I have ever met.  For your soft-spoken words.  For your genuine way.

Thank you Derek, Heather, Diane and your entire family for embracing our family as we are.  Full of energetic young children.  For laughing at our antics & chiming in with your own.

Thank you Skip for so many things.  For being our neighbor (and a shout out to Shirley here as well), our friend, our handyman too!  I love you & your family.

Thank you Pam for helping out whenever we are in a bind.  Whether it be watching our kids or letting our dog out.  For your friendship.

Thank you Marline & John for naming a star after Ethan.

Thank you Sue and Gary for opening your home to us, for meals, for company, for choir parties (even though we can't carry a tune), for swimming in your pool.  Thank you for your friendship.

Thank you Colin for being my dose of sarcasm!  I desperately needed that when we moved, and immediately felt at home with you.  Thank you for helping me walk the kids to the car after coffee hour when they all ran in different directions.

Thank you Pat for loving my family.  For loving our real children.

Thank you Robin & Ron for being my friend.  On every level.  There are not enough words here.  I will always treasure our friendship.

Thank you Tom for loving us.  For showing me your heart.

Thank you Deb for telling me I inspired you.  Thank you for inspiring me as well.

Thank you Carole & Dan for making me laugh.  For feeding Ryan & carrying him around at 6 months old when I wasn't able to.  For our friendship, though recent, it feels so strong.  For showing me a loving marriage that is very similar to mine.

Thank you Pam & Mark...again words fail here.  For loving us, as your family.  For burying Ethan with us, for somehow making that terribly sad act beautiful.  

Thank you all for making sure my children did not run out the doors of the Church. 

Thank you for being the village that raises our children.

Thank you for remembering Ethan.

Thank you for showing me what God's love is.  

Your siblings.

When they told us your lungs would need 2 more chest tubes, on top of the 1 already in place, we realized that your body was failing you quickly.  It was Wednesday afternoon & we had planned to have your sister and brothers come down and meet you on Friday.  With them being a state away we realized there wasn't enough time to have them come and meet you...so we decided to hold you right away, while your eyes were still open.

Occasionally I have replayed that decision, knowing that we made the right choice in the moment - though wishing things could have been different, in many ways - wishing that Caroline, Jackson & Ryan could have met you in person.  I am still sad we will never get a true family picture.

They know of you, we talk of you daily, pray to you daily.  We don't really pray for you...as we know you are perfect now & Heaven.  So we talk to you, include you in our family.

Your siblings have saved me, I think.  In the obvious ways but also in the subtle ways.  With that said - their presence & love has not mitigated the pain your absence brings me.  Sometimes it adds painful dynamics to grief, actually.  So this post is me reflecting upon parenting 3 little children while grieving you.

Ryan still being a baby when you died saved me.  I could still say I had a baby, and it be genuine in some regard.

Caroline drawing countless pictures for you or that included you saved me.

Jackson offering to go to Heaven and bring you back so I would no longer have to be sad - so sweet and sad.

Finding Caroline reading We were going to have a baby, but we had an angel instead - breaks my heart.

Listening to the laughter of an 11-month-old, 2-year-old and 4-year-old - saved/saves me.

Jackson pretending he had babies in his belly - 8 blue babies to be precise (his favorite color & number).  But this pretend play ending with "but my babies didn't die.  Not like your's." - terribly sad.

Jackson telling me randomly, "Ethan's not dead Mom.  He's alive," referencing that you are alive in Heaven - saved me.

Having Caroline bring butterfly drawings home drawn by school friends who she has told about her dead baby brother - are their words for that?  Simultaneously beautiful & sad.

Jackson yelling hello to you as you visit us as a butterfly - saves me.

Hearing Jackson tell Ryan to get away from a staircase because "you can't fall down and die like Ethan." - so sad.

All 3 of your siblings demanding that I get out of bed each morning, make them 3 meals a day, countless snacks, take them outside, play with them, and on and on.  They demanded I keep living  - saves me & taxes me.  Keeps me moving through my depression, though doesn't allow me the time I need, when I need it, to focus on my grief.


I know how blessed I am, to have 3 living children.  To not wonder whether I will ever parent a living child at home.  Many parents whose babies have died wonder this very thing, if their losses were their firstborn.  But this blessing isn't without complicated dynamics.  Instead of wondering that, I wonder if my children will remember when mom was depressed, crying so often, when mom was "just missing your baby brother Ethan."  I wonder.

Time

Time has become strange.  The definition of bittersweet.

The bitter - With every day I am further away from Ethan in my arms.  Further away from the 4 days of memories I had with him.

The sweet - With every day I am closer to reuniting with Ethan, in Heaven.

Time used to be neutral, at least for me.  I've never been one for caring about getting older, never caring about the first gray hairs.  But now, now time is different somehow.

My arms long to hold Ethan and it seems as if I have lived a lifetime in these past 6 months.  Yet my arms will always remember the position they were in, cradling my baby boy.  My eyes will always (I pray) remember looking down into his eyes.

"Time heals."  No...not for me, not yet.  But it does help.  It makes it different somehow, less raw.

That first week after Ethan's death I remember thinking 3 months until my due date was an eternity.  People told me that this first year was going to be the hardest - part of me wanted to fast forward through it.  Part of me wanted to freeze time altogether.

How has it only been 6 months since Ethan died?  How has it already been 6 months?  I don't know much any more.  Time confuses me.

Thankful

I'm taking a moment to think back upon this year.  It has been unbelievably hard, the worst year of my life in most respects.  Yet simultaneously filled with a unique blessing.  I am sure tomorrow, Thanksgiving, will bring moments of longing for me - certainly.  But this post is me making a choice.  A choice to appreciate the blessing that Ethan was and is in my life.

The pain that comes with Ethan's death is indescribable...though I have tried here in this journal.  You have witnessed my pain, my sorrow, my longing.  But tonight as I write this I would not trade Ethan coming into my life to avoid this grief.

I am thankful that I have four children.  I am thankful that I have a beautiful daughter and three fabulous boys.

I am thankful that Ethan has deepened my faith in Christ.  Thankful that Ethan has nurtured our mother-son relationship as he visits me as a butterfly or sends me a rainbow.  Thankful that God somehow saw me fit to be the mother of such a special child.  A child who in 4 short days has changed the world for the better, in more ways than I know.

I am thankful that God gave me 28 weeks to get to know Ethan, from the inside out...and for the 4 days he fought to stay with us.

I am thankful that Ethan visits his older siblings, particularly Jackson.  Thankful that they will know Ethan, will nurture a sibling relationship with them still.  Thankful that Ethan watches over all of us, especially Jackson - just like I asked him too.  Thankful that one of my surviving children still talks with Ethan...how amazing is that?!

I am thankful that God chose me as the recipient of his special message, sent through my friend Denise.  So few people get that gift, such a direct, clear message from God & their loved ones already in Heaven...yet he chose me to be one of them!  That is not lost on me, I assure you.

I am thankful that Ethan is alive and happy in Heaven.  That God/Jesus are watching over him, keeping him close until I can meet him in Heaven one day.  Am thankful that God hears me, that Ethan hears me.  That they answer me, sometimes in a direct way & others indirectly.

I am thankful that Ethan has friends in Heaven, that he has found those babies who have left their families so soon as well.  Thankful that he and his heavenly friends have orchestrated new friendships with me.  Thankful that I now love Liz, Nikki, Gabe, Samantha, Kelley, Danielle, Andrea, and others.

Thankful that others have somehow been inspired by Ethan's love.

Ethan is a blessing.  The road to growth is not without pain, that is sure.  Tonight I am thankful that God chose Josh & I to be Ethan's parents.  A choice made by God, Denise shared.  A choice made because God believes our faith is strong enough, our marriage is strong enough to withstand the grief. A challenging road that leads to love...Ethan's love...God's love.

My favorite quote - "There is nothing you can do to make God love you more.  Nothing you can do to make God love you less.  For God is love.  And you, are God's beloved."  Amen.

Thank you Ethan.  Thank you Lord, for choosing me to be Ethan's mother.

Tears of Joy

As a mother, all I really want for my children is to be happy.  It's one of the cliches that holds true.

Being a parent you learn to put your own desires aside for the good of your children.  This starts during pregnancy.  If you have a headache you deal without Tylenol.  You ingest foods and drinks that are healthy for your baby, and forgo that feta on your salad or drink at dinner.  Then your baby is born and you quickly learn to eat meals that can be managed with one hand only, as you are most certainly nursing or holding a baby with your other hand.  Lots of sandwiches, whether you like them or not.  Lots of food that has lost the temperature it was originally served at.  These little sacrifices continue.  Purchasing diapers and formula instead of new clothes or even money for a babysitter so you can go to that movie you wanted to see.  And one day you end up realizing that you have been listening to kids' music in the car, or watching Disney Jr., for far too long - questioning the last time you watched the news or listened to music of your choice.  But you do this happily, because you love your children.  Because their happiness and health is your goal.

Today I cried tears of joy.  The first time in my life that I cried, I mean really cried, because I was happy.  My friend Denise wrote to me sharing a recent experience, albeit difficult to explain, that I needed to hear.

Denise is sensitive to spirits, the afterlife, the other side, whatever you want to call it.  This is not something she has openly discussed with me before.  I've known her for 14 years, and only learned of this today.  I hope she doesn't mind me sharing this here (Denise, if you do just let me know & I will remove this post).

Denise said she recently saw the home that God calls his angels to.  She saw "all the beautiful souls that are here for such a short time," and that Ethan was there, in the hands of God!  Cue my crying.  It was the most beautiful place she had ever seen.  That Ethan was there with lots of other angels who were on this Earth for just a short time ... he was there, playing with other babies!  I am convinced some of these babies are the children of my new friends.  I am convinced he was playing with Avery, Christian, Adeline, Jack, Charlotte, Christopher, Lila, Gus, Paul, TaKoda, Delia and more.  Convinced of it.  (I've believed for some time now that Ethan and his heavenly friends have organized these new friendships I have with other parents whose babies have died.)  Denise said that these souls are literally called "God's Angels" and that they "play and love and keep hope alive."  Ethan is "perfect now and laughs and runs and is a pure soul."  And cue my sobbing.

She went on to say that Ethan has an attachment to Jackson.  That Jackson, being so young, thinks it is normal.  At first I thought she meant to Ryan, because of their closeness in age.  But she was sure Ethan was attached in a special way to Jackson.  Then I remembered.  I was holding Ethan for that first and last time, and I asked him to be our angel.  To watch over us.  But especially Jackson, as he is a wild one and can use all of the guidance and protection he can get.  Ethan communicated that he and Jackson talk often, and share stories.  "He wanted me to tell you, when Jack is able to talk, maybe he can share some of the stories they talk about!!!"  Are you kidding me?!  I might be able to know my son through my other children!!!  Tears keep coming.

Denise continued to say that Jack watches over Ryan so closely because "he doesn't want him to go to Heaven and leave him."  Now I am remembering a time Jackson rushed over to Ryan and said he couldn't go near a staircase because he didn't want him to fall down and die like Ethan.  These things happen occasionally for poor Jackson.  Lastly Denise shared that "Ethan wanted you to know that - he or God won't be taking anymore babies!!!"  I have been fearful that something terrible would happen to our living children - but Ethan is reassuring me that it won't.

Ethan went on to communicate to Denise that he wants Josh & I to be happy.  That he hears my every word.  He hears me pray.  Hears me cry for him.  Hears me talk to him.  Hears me mother him.

Ethan hears my thoughts and prayers.  And he responded, through Denise.  And perhaps one day through Jackson, or Caroline, or Ryan.  My sadness that our older children never met Ethan does not need to be sharp, as they have a relationship with him still.

So yes, I cried tears of joy today.  Joy that my son is healthy now, happy and enjoying himself in a way that he wouldn't have if he had somehow survived that catastrophic brain bleed.  Joy that Ethan has friends to play with.  Joy that our relationship with him is as real as ever, just not as tangible as traditional mother-son relationships.  Joy that I will one day see my son again.  Rejoice for that.

A Big Change

Today I resigned.  This post is public, so I am choosing not to go into much detail for the reasons behind my resignation.  The long and short of it is my happiness at work came crumbling down over this past week...where I had been for 3 1/2 years.  So I chose my happiness, my health, my family today.  I will not be returning to that position any longer.

Part of me feels free.  Challenges come with any position, so I am now free of those.  I am certainly feeling less anxious tonight - so that is worthwhile.

Today I became a stay-at-home mom, something I have always wanted to be.  So why aren't I happier?...Because I don't have my fourth to care for at home.  I'm not saying 3 little kids is easy, but I have adjusted to mothering them, caring for the house and working part-time.  Now that I will experience this shift in my day-to-day, I am looking around for my 5-month-old baby to care for.  But he's not here.

The holidays are here, and they're hitting me.  I'm told that the first year is about breathing & just getting through...in whatever healthy way I can.  So I choose to mother Ethan during these holidays.  I will buy him a Christmas present, and will donate it to a needy family in his name.  I will make him a Christmas ornament.  I will post pictures of him on Facebook remembering my son - asking others join me in that.  I need people to remember Ethan during these holidays.  I need to keep breathing.  I can already anticipate the sadness, the jealousy, that I will feel when I see pictures of others' babies' first Thanksgiving, first Christmas.  It's not fair.  I want him back.  This is painful.

I'm starting to struggle again.

Almost 3 good weeks.  They were real, but they feel far away today.  

Stress is running high.  Work has been hard, not good actually.  I'm beginning to question whether or not it is a healthy place for me to be, even just two days a week.  But for now, I am there - and it is my privilege to be there.  This week I am working 4 days, and am thinking I might stick to the 2 days a week from this point on.

Thanksgiving is next week.  Ethan should have turned 6 months old next week, instead he will be 6 months gone.  I'm an experienced parent, blessed to be able to say that surely.  I know most 6-month-old babies are learning to sit up on their own...marking my favorite stage for babies.  There are fewer things cuter than seeing your own child sitting up on their own, chunky rolls, drooly chins and toothless smiles - that's what Ethan should be.  But I know that if he were here, alive that is, he would either be just 3 months old (if born at term) or would most certainly not be sitting at 6 months (with cerebral palsy and other chronic medical conditions).  Even the would be's are confusing to envision.  Nothing is simple any longer.

So Ethan is still gone, and that sucks.  I was making dinner tonight and had a wave of sadness - not a crippling wave.  But one that made me pause and say, OK enough of this shit already.  I'm done not having my son.  I'm ready to be "cured" of his death, read for him to be here with me now in an earthly way.

I've often heard that the holidays are hard for many, I've seen that as a therapist with my clients.  But now I get it.  I love Christmas...not about the gifts so much.  (We only buy each child three gifts as Jesus only received three gifts.)  But I love the hymns, the fellowship, the story of a miraculous baby. My love for Christmas remains, though it now evokes a longing.  The story of the love a little baby can inspire makes me want to hold Ethan more than ever.  He should have been the baby Jesus in the pageant this year...I might fall apart when I watch it without him.  

Anyway, next week is going to be hard.  With what should be Ethan's 6 month birthday, Thanksgiving and having to work on the 6 month anniversary of his death.  Oh, and I work in a cancer center - perhaps I'll ask to take a half day on the 23rd.  

My breath caught today when I listened to my voicemail.  It was the social worker from the NICU asking permission to use a photo.  Of me giving Caroline Ethan's star at the memorial service in some sort of Brigham and Women's publication.  The social worker said how nice it was to see us again..."to meet your children...your other children..."  Language makes a difference.  Ethan is my child, will always be my child.  

How many children do you have?  I got that today at the grocery store check-out.  "4," I proudly replied.  Any twins? she asked.  "No...we had 4 in under 5 years."  Some must have been surprises then? This woman was a little forward, but I didn't mind.  "The best surprise of my life," I replied.

My revelation

I read The Shack, by WM. Paul Young, over the last two weeks.  My cousin Christine suggested the book to me, saying she felt God was telling her to share the book with me.  The Shack is not an easy read, it is prefaced on the story line of a father who is grieving the death of his youngest daughter.

By now you know that I am a Christian, but I am also a human who struggles with knowing God on a human level.  Somehow I have never doubted my faith through this all, I have just known in my soul that God exists and he loves me.

Here's the scoop.  When your baby dies, at least for me, grief can make you feel isolated.  I can be in a room of people loving me & Ethan, yet I can still feel alone.  The only thing that makes this better is to talk with or be around another parent whose baby has died.  Because they get it.  Without any explanations.  We are in the club together, and I no longer feel alone.

I am blessed to have met a few people in this club.  Being around them is one of the few times I feel at ease.  But clearly, I am not around them all that often.

     "Papa?" Mack finally said in a way that felt very awkward but he was trying.
     "Yes, honey?"
     Mack struggled for the words to tell her what was in his heart, "I'm so sorry that you, that Jesus, had to die."

So I was reading The Shack and had a revelation.  God knows what it is like to have his son die.  He's in this exclusive club.  In the club that people pray never to gain membership into.  God knows the pain of a parent when their child dies, in a relational way.  Not just because God is the Supreme Being, but because God is Jesus' father.  He watched his son die, as I watched mine die.  God knows my pain, and he knows how isolated I feel -- so he's not leaving me alone.  God is right here with me, not just as my God, but as my friend who "get's it" in a way that most cannot.  I need not feel alone in this grief any longer.

     "But if she hadn't died.  I wouldn't be here now..."
     "Mack, just because I work incredible good out of unspeakable tragedies doesn't mean I orchestrate the tragedies.  Don't ever assume that my using something means I caused it or that I needed it to accomplish my purposes.  That will only lead you to false notions about me.  Grace doesn't depend on suffering to exist, but where there is suffering you will find grace in many facets and colors."

Countless people tell me "everything happens for a reason."  I used to think that, and even say it.  But that's bullshit - at least for me.  I think good things can come out of bad things, but I don't think the bad things need to happen for the good things to exist.  Stop and think, what would the reason be for Ethan dying?  There just isn't one.  Ethan's death is not the only route for growth.  The good things that may come out of this experience (deepening my faith, inspiring other's faith, demonstrating love) could have developed from other things too.

This makes me feel better, I no longer have to convince myself to buy into the idea that my baby died for a reason.  Sadly, he was too small & sick for his organs to save the lives of other babies.  I was too sick during labor to be able to donate his umbilical cord blood.  So no lives were saved by the loss of Ethan's life.  Ethan's death was tragic, and I do not need to search for a silver lining in his death.  His life and the love he continues to inspire is where the positives rest, not in his death.

My God did not cause the death of my son, yet he is understands my grief.  This is a beautiful reassurance.  I could not ask for more, especially from a book.  Thank you Christine.

Could this be?

This is my 16th "good" day in a row.  That's right, 16!!!

I am nervous to describe my days as good publicly, for fear that people will think that I am "over it," done grieving, purely happy, etc.  I really only describe my day as "good" around select company - close friends/family, or more often, around other parents whose babies have died too.  I don't hesitate to describe a decent day as "good" to them because they get it.  They know that it means "less shitty."  Or even lately, that I may genuinely experience joy, pleasure, and laughter while simultaneously being devastated.

So this post is with a leap of faith.  Faith that those who read this will take the time to appreciate the paragraph above.  That I am still a mess, and am allowed to be.

When Ethan died I knew that I would find a way, somehow, to be happy again.  I knew that I would fight for that, for myself and my family.  But those first few weeks were so terrible that I had no idea when a good day would ever come.  And then one came, I think the first really "good" day was probably in mid July somewhere.  But then it disappeared into grief-stricken days.  I would have glimmers of healing, of joy - perhaps lasting an hour of so.  And I was thankful for those moments.

But now, over 5 months out, I can tell you that I have had 16 good days in a row.  Hallelujah.  Amen. Thank you Lord Jesus - truly.

October 19th was my most recent shitty day.  It was when Ethan should have turned 5 months old.  I posted about it earlier.  Didn't help that I had forgotten to take my anti-depressant that morning either.  But by the grace of God I got through it and the next morning was better.

And they have continued to be good days since.  Of course I still miss Ethan desperately, crying every so often.  But they are the gentle  tears of longing, not the breathless sobbing.  I continue to think of Ethan every hour of every day, but sometimes with a smile instead of a tear.

Part of me is waiting for the bad day to knock me on my ass.  But most of me is just thankful for every breath that doesn't hurt.  For every smile that is genuine.  For the healing, slow as it may be.

I am not OK yet, but I am well on my way.

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.

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.

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.

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.

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.

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...

http://www.youtube.com/watch?v=TdN5GyTl8K0

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.

http://www.youtube.com/watch?v=pL-jcO5M17g&feature=share

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.