The Return of TV

It's Fall.  Most of my TV shows are returning now.  The last time I saw them I was laying in the hospital on bed rest, my special time with Ethan.  Now they are coming back on, and he is no longer with me.  

I just watched Grey's Anatomy and I can tell you this, the scene where they take Mark off of life support isn't just pretend, I lived it.  I heard the doctors and nurses tell me the same things.  That Ethan was given morphine so he wouldn't feel any of it.  That they couldn't really tell us how long it would take for Ethan to leave his body, but they thought it wouldn't take long.  Once we took him off of the ventilator, when he was in my arms, we had them extubate him.  It was the first time I had seen my son's face without tubes.  The first and only time.

Josh touched his legs and feet while I held him and caressed his face.  Soaking him in, trying to memorize him for the lifetime we were about to live without him.  We didn't have him connected to the machines telling us when he was gone, it was up to me to ask the nurses and doctors to check for a heartbeat.  He did breathe for a little while, and then that stopped.  It took a minute or so, as I remember it, for his heartbeat to stop afterwards.  5:55pm - the time he went to Heaven.

Some may wonder why I choose to watch the same shows, the shows that sometimes display grief as a theme.  I can't really explain it.  Maybe it is mostly that I have watched these shows forever.  The Annie from "before Ethan's death" watched them...maybe I am trying to cling onto small parts of her somehow.  

I haven't yet watched Private Practice (albeit not a great show anyway).  The last time I saw that one a baby died in it.  I watched that episode when I was in the hospital, having one of my non-stress tests done.  I remember avoiding the episode for several days, and then thought that was ridiculous.  It is pretend and my baby wasn't going to die...he was beyond the 28 week mark.  So I watched it.  Now I anticipate the story line to include a mother grieving the death of her baby.  We'll see, maybe I'll try it.  Maybe I won't.  Maybe.  

The strangest things are triggers.  Commercials for bad television shows being one of them.  Other times the triggers are most understandable.  Yesterday I walked into a room of a patient not knowing that the patient had her 4-day old baby with her.  Thankfully I held my shit together with them, and then promptly proceeded to cry with my colleagues afterwards.  When my baby was 4-days-old I was taking him off of life support.  The bottom line in all of this is that I miss my son.  It's simple.  I miss him.  A lot.  

Absence of a lifetime

When a baby dies, or a young child, the loss is different I think.  Instead of looking back at a person's lifetime, you find yourself grieving a lifetime of their absence.

Those of you who are parents may know what I speak of.  The moment you found out you were expecting a child, did your mind wander to clips of what their future life would look like?  Mine did.  I'm not the mom who plans everything out for my kids, that's just not my style.  But I did have a few things that I couldn't help myself from envisioning.  And now those visions are crushed.

"It's a boy!"  When Dr. Mansour told Josh and I this, this is what I thought.
         First --  Awesome!  3 boys and 1 girl.  The Blessed Chaos just got crazier.
         Second -- My food bill is going to be out of control.
         Third -- Imagine if they all love basketball like Josh does?  They will all be huge like their father and likely comprise 3/5 starting players on their high school basketball team.  The Gray Boys...what a wonderful thing.

And now Ethan is dead, and we are back to just 2/5 starting players being a Gray.  I can see myself right now, in 13/14 years shedding a tear or two (or many) at their basketball game.  Just sitting in the bleachers, knowing that that was the day I had envisioned years ago, before it all went wrong.

Of course I miss bringing Ethan home as a baby.  I had to give away all of my baby stuff, I don't get to rock him in the middle of the night, I don't get to nurse him, to put those silly month-to-month stickers on him for the watch-me-grow pictures.

I am heartbroken that I don't get the crazy toddler stuff - would he have been a climber?  what would his first word have been?  I don't get to know these things.  I am his mom, how can I not get to see these things?

No first day of Kindergarten pictures on the front step of the home.  No awkward middle school years.  No high school prom, graduation, college decisions, career path, engagement, wedding, kids.  None of it at all.  It was all stolen away from me the moment his brain started to bleed.

I grieve my son at each stage, a lifetime that was never allowed to happen.  I'm not just grieving my baby boy you see.  I'm grieving my toddler, my Kindergartner, my teenager, my young adult.  To those in society who think I should be "getting over it" or "moving on" by now, just 4 months out -- I don't think so.  Sorry to disappoint you, but I don't think I will ever be "over it" and I sure as hell don't want to fully "move on" from Ethan.

My Fight to Heal

Time does not heal all wounds.  I just don't believe it.  I think there is something to it though; time allows things to become "different" somehow.  But if I took an inactive approach to grieving, I am pretty sure it wouldn't work for me.

My friend Lee said that I am "fighting to heal."  Her words, but I like them.  Damn straight, this is a fight.  It's long.  It's ugly.  It's confusing.  It's covered in tears.  It's occasionally blessed with a smile.  It's exhausting.

I've been talking the talk for about ten years now.  Supporting, encouraging and challenging my clients to feel their emotions, so they can move through them...hopefully leading to a place of healing.  The hour that Ethan died I knew it was time for me to put up or shut up.  I called a therapist the next day, and scheduled my first session.  I have worked the support group thing, finishing the six-week session just tonight actually.  

I've started writing a journal, this blog being just that.  Writing has never been something that's worked for me before, but I forced myself to try it at the advice of my therapist and group facilitator.

I push myself to work my grief.  That looks like different things on different days.  Sometimes it means setting up boundaries with certain friends, that I can't hear about their newborns or lives of sleep deprivation yet.  I just can't do it.  I've reached out to people who have also had a baby die, taking those awkward first steps to do so.  Just this Monday I set aside time to go back into The Brigham and Women's Hospital.  I didn't have to, but I knew it was time to.  And I made it happen in a way that was healthy for me.  

I agreed to say something at the remembrance service the NICU is having next month.  I wrote something short to Ethan - only after I wrote it did I realize that I wrote a eulogy for my son.  That still takes my breath away, that I am in this position.

I take medication to help with my depression.  Something I have never had to do previously.  

I talk about Ethan with the older three kids daily, in natural ways.  He remains their brother and my son.

I returned to work, in a setting where many people are dying.  I listen to others as they share their fears, blessings, anxieties about living with, and often dying from cancer.

I get out of bed every morning, make breakfast for Caroline, Jackson and Ryan, and move through our day.  Allowing myself to smile and cry as I clean the house, read to them, play outside and do the grocery shopping.  I push through those moments when my breath is knocked out of me, because someone around me needs something.  Somehow I don't spontaneously combust.  

I am very slowly healing.  That's right, it's been four months but it continues to feel like yesterday for me.  Society shouldn't expect that I am "better" now, not for a long time.  

Grieving is a full-time job.  I will heal though, I am working hard at it.  To honor Ethan's love I will heal.  When he died I promised him that I would do my best, everyday, to be a great mother to his siblings.  And to do that I have to fight to heal.  

I Came Back.

I came back.  Back to the place you were born.  Back to the place you died.  Here I am, making a new memory as the most recent time I have been to The Brigham and Women's Hospital.

I love this place, far more than it makes me sad.  People walk by me and I see the brilliance, the miracles and the love.  The brilliance of those wearing scrubs.  The miracles of the cancer survivor walking through the lobby with their mask on.  The love of the husband pushing his wife in the wheelchair.  This is a special place.  I birthed four babies here.  I will always love this place, it feels sacred to me.

I can do this.  I am doing this.  A nice woman, a stranger, sat next to me and asked if I was OK.  She saw my soft tears that I thought I was successfully hiding.  Thank you God for showing me your love today.  I feel it.

In a month I am returning here to the NICU, for a remembrance service.  Josh and the kids will come too.  This is the first time I have returned here since Ethan died.  I came into The Brigham today so I could have whatever time I may need to myself, without having to attend to the kids' needs.  This was the right decision.

I saw Dr. Mansour this morning.  The biggest hugs and kisses from him and Annmarie.  He asked how I am doing, how Josh and the kids are.  He told me that my water breaking prematurely was not caused by having pregnancies so close together.  He clarified the research for me...and I feel a lot better.

I have strength that I didn't know was inside of me.  I am looking at the exit I left in a wheelchair four months ago.  The one I went through without a baby.  I am prepared to walk through those doors on my own terms this time.  Here we go...

A Beautiful Person

"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."
                       -- Elizabeth Kubler Ross

I have known the work of Kubler Ross for years, since the beginning of graduate school.  She was the premier grief therapist of our time.  As a professional in mental health, she knows her stuff.  And now, as a grieving mother, her words speak to the little bit of light left in me.  They honor and validate the darkness that shadows my days.  They reassure that I am alive, somewhere inside.  And that my soul will resurface one day in a beautiful form.

As much as I try to heal, or wish that I could outrun my sadness, the truth is that I do know defeat, suffering, struggle and loss.  I live there right now.  The struggle to breathe in and out when my older children are all demanding things of me; the suffering that makes me want to sleep through my moments of pain; the defeat, as a mother, that I was unable to bring my child into this world in a healthy way.

The unsightly scars that grief leaves behind could tarnish me.  Could make me a bitter person.  A mother who checks out of her older children's lives because the pain that the fourth is missing is just too much.  Could lessen my faith.  Could steal my smile forever.

But the words above demonstrate that there is an alternative, a light inside of me somewhere.  Ethan was a beautiful person, and he remains a beautiful soul.  Honestly, I wish I could trade this understanding of sorts for my boy to be here with me.  I wish I didn't have cause to become this beautiful person, but I don't have control over that.  I do have control over how Ethan's death shapes me, into a hardened person or a beautiful person.  To honor Ethan, I choose to become a beautiful person,

Family Pictures

We had family pictures taken last week Ethan.  We saw you there a few times, as your butterflies fluttered above us.  My friend Chelsea took the photos.  She was supposed to take these back in June, when you were supposed to be in my belly still.  I couldn't bear to have them taken in June, the pain of your absence in our family photos being too raw.  I felt your absence still, and longed for you to be in those pictures.  Did you hear Jackson yell hello to you those few times?  He loves you so much.

Your brothers' blue eyes were stunning in the photos.  I wonder if you would have had blue eyes too, or deep brown like Caroline's.  When we finished, I took a shell from the beach at Fort Stark and placed it in the vase that holds the shells from Appledore Island.  Hope you know that you are always on my mind, particularly when we celebrate our family.  Love you my sweet boy.

The trauma of it all

The last 24 hours have been hard.  A few different things have happened.  First off a little girl came up to me at Jackson's preschool and kept asking me where my baby was.  She meant Ryan (as he was home with Josh) but she kept saying "no, where's your baby?" and pointing to my stomach over and over.  I wanted to agree with her.  I don't know why I don't have Ethan with me either sweet girl.

Then I received a "courtesy call" about a medical bill related to all that happened with Ethan and I.  The hospital's right hand had not spoken with the left, as the woman on the phone didn't understand that I am in the process of applying for financial assistance and I was therefore told not to pay anything on the balance yet.  She said "this is just a courtesy call."  Courtesy call my ass.  There is nothing courteous about calling me for money when my son died and I have been diligent about payment plans/etc.  There is nothing courteous about my baby dying.  I actually told her I didn't want to discuss this with her further and that she should stop calling me.  Poor lady, just doing her job that she probably  gets paid a minimum wage for...but I have no tolerance right now.

Last night was my support group, the fifth session out of six.  This was the week other parents came in to share their stories of their babies dying, their grief and their healing.  It was quite powerful and ridiculously emotional.  One of the women spoke about singing "you are my sunshine" to her little boy as she let him go, the same song I sang to Ethan at that holy moment.  I cried so much in that group that I had a strong headache at the end.  You know the crying that physically hurts your throat, stings your eyes and is endless?  That was me last night.  Not the sobbing, breathless cries but the physically painful cries.  I came home, said hello to Josh, took two Tylenol and immediately went to bed with Ethan's blanket.

This morning I awoke with my headache gone but to Ryan retracting and struggling to breathe.  Off to the pediatrician we would go.  As we waited for the appointment at home I rationally knew that Ryan wasn't in extreme distress - unfortunately I am very experienced with managing pneumonia, croup, asthma and others.  I vacuumed my carpet and tidied up the home.  Then I started to get anxious, not a panic attack anxious, but anxious nonetheless.  Irrational thoughts came to mind, that if Ryan were to become very sick I would regret cleaning my home before I took him to the doctor.  Tears started to flow, and I realized that I am traumatized from Ethan's death.

As I was sitting in the pediatrician's lobby I heard a mother call her son, named Ethan.  It was lovely and so sad at the same time today.  Some days that makes me smile, but today it just about started my tears again.  Jackson then declared loudly "Mom, I have a baby brother who died.  I'm not sad about it though because God fixed him."  So lovely Jackson, thank you for making me feel better.  Ryan is going to be just fine, he is likely going to be an asthmatic.  The good old routine of a nebulizer every 4 hours and daily steroids should do the trick with time.  But it's very difficult for me to hear that my son was in moderate to severe respiratory distress.  I was brought right back to the severe respiratory distress conversations with Ethan.  Intellectually I know the scenario is very different, that Ryan will live when Ethan did not.  But emotionally, it's a different story.  I've said it before, grief is utterly emotional.

It was traumatizing learning that our son was likely going to die that first night.  I started moaning loudly when Dr. Van Marter told us that.  I stared right out of the window, looking at a triple-decker as the sun went down.  I just moaned and moaned and moaned, as I couldn't cry in heaving sobs like I wanted to.  I had just had the c-section, was in too much discomfort and had my legs stuck in some boot-things.  You already know about the bells and alarms in the NICU.  Suddenly having to leave Ethan's bedside so the neonatalogist could stick a needle into his chest to save his life...  I thought I had a handle on all of this trauma, and for the most part I do.  But last night and today, not so much.  I am traumatized, that's the truth.

Not full on PTSD (remember I am a therapist, so I am quite familiar with this diagnosis), but some of the symptoms sure.  My response to Ryan's illness caught me off guard.  I brought Ryan in to see Dr. Jones today as much for me as for him.  Sure, I knew he needed treatment and medication, but I needed Dr. Jones to tell me that Ryan was going to be OK, that he was going to live.  Guess I am not fully out of the woods with this trauma crap.

How many children to you have?

The English language is no longer easy.  (Some of you may be thinking it has never been easy for me, with my spelling and grammatical errors, I know)

But truly, the most basic question just became a door into my chaos of love and pain, of laughter and tears.

How many children to you have? 

Simple enough, right?  Well, I have four.  Three of whom live at home with me and one of whom lives in Heaven.

Stop and think, how many times are you asked this question?  Rarely, occasionally, weekly, daily?  I am a 32-year-old married woman, a minister's wife actually.  I am asked this question almost daily.  At least several times a week I would say.  Today, by 11:15am I was asked this question twice.  Once while Ryan and I were out to breakfast and once by a mom standing outside of Caroline's Kindergarten class.  When I am not at work I usually have most of my older kids with me.  Lots of littles running around, all cute and loud like, bring forth all sorts of comments and questions about the size of our family.  And when I am at work, it is not uncommon for a patient or their loved one to inquire what I do with my days off (I only work 2 days/week).  Occasionally the conversation flows to THE question.  How many children to you have?

It's unavoidable, not that I really care to avoid it.  I am a mom, a proud mom to all 4 of my children.  If people ask where my fourth child is, and the situation is appropriate to do so, I tell them that Ethan is in Heaven.  This is where the record stops.  People's expression suddenly changes and you could hear a pin drop.  It doesn't matter what type of delivery I offer this news with.  Usually I am matter-of-fact about it, acknowledging that it is a very tragic thing, but that I am happy to consider Ethan part of our family.  Lovely people don't expect to hear news of a dead baby, regardless of how it happened or how it is explained, when they ask that simple question.  Because, for most of the world that is a simple question.  But for me, it is not.

Different people who have a baby or a child die chose to answer this question in their own way.  There is no right or wrong way about it.  It's more the right or wrong way for each person, in that moment.  For me, I have a desperate need for the world to acknowledge Ethan.  I am only 3 months out from his death, admittedly this is still so early on, a very raw time.  I am comfortable telling others about all four of my children.  When an adult dies, does society all of a sudden stop acknowledging their existence?  Their place in the family?  Not usually.  So I don't believe it should be different for my son's death.

If you ask me the question you are going to get the truth.  Perhaps not from the blubbering mess, broken down Annie.  But certainly from the "it's been a very difficult journey thus far" Annie, who simultaneously smiles and chases after my three older children.

(In truth, there have been a few occasions where I felt it was more appropriate for me not to share about Ethan's death.  For one, I am a social worker in a cancer setting, so occasionally it would not be appropriate for me to share this information with a patient or their loved ones.  There was also one time I chose not to acknowledge Ethan's presence in our family.  It was the first day of Kindergarten and this lovely mother was excited, picking up her son.  She asked me THE question, and I just said "I have three at home."  Not a lie, but not the full truth.  I did this because I could not bring myself to be forever in this woman's memory of her son's first day of school with our "dead baby" story.  I just didn't have it in me.)

I don't dread the how many children do you have question.  Sure, it evokes painful emotions in me.  It is sad after all.  But this question is an opportunity to remember Ethan, to bring him into my day, into the world that he should be a part of.

Closing the door.

Am I the only one who is really sad that I am done being pregnant, done having babies?  I have been pregnant or caring for an infant for the last 6 years of my life.  4 kids in under 5 years, all from single pregnancies.  It was amazing.  I loved every minute of it.  I know most people feel crappy but I didn't.  I was amazed at the capacity my body had to grow a human being.  To carry almost 10 lb babies in my 115 lb frame.  I looked ridiculous, and loved every minute of it.  Even the labor and deliveries (well, maybe not the last half hour of delivering  almost 10 lb Jackson completely naturally against my will).  I felt so much excitement with it all, it was a rush.

If I am being honest, being pregnant was my favorite time of my life.  And not just during my first pregnancy, with Caroline.  It went beyond the glorious nap when you want to, sleep in late, eat what and when you want to, you get all of the niceties your way without having to care for other children at the same time stuff.  I'm talking I loved pushing the grocery cart with my 3 kids 4-years-old and under while pregnant...I loved cuddling with my 8-month-old baby while my swollen belly kicked his sibling from the inside out...I loved waddling after my toddlers running away from me in opposite directions...I loved being the mom of the blessed chaos.  (If I ever graduate from journaling about my grief from Ethan's death I will journal about my Blessed Chaos).

Growing up I lived in the best neighborhood.  Tons of kids running around on safe streets with a bunch of parents looking out for all of us.  It was quite a gift to grow up that way.  There was this fabulous family whose youngest son was my age.  He was a bit of a wild kid, much like my son Jackson is shaping up to be.  His mother's name is Rita.  Rita would manage her life of "blessed chaos" in this successful, loud, real, loving approach.  Nowadays, when I find myself using a similar approach to managing the chaos in my home I say "just call me Rita."  And I say that as a compliment.  I loved her approach, and respect it now that I am a mother in the thick of it.  I love being a mom.  It's a huge part of what I was put here to be.  It's the biggest blessing God has bestowed upon me thus far.

Having loved every minute of pregnancy, I find it immensely painful that my most recent experience of pregnancy will always have ended in horror.  With water breaking prematurely, an emergency c-section with my baby in distress, and ultimately my son's death.  Words fail here.  It's just awful.  And the tears are welling.  So much pain.

Being the youngest of four myself, I had always desired to have four children as well.  Josh and I always said "one at a time."  You never know if one would have special needs requiring more attention.  After Ryan, Josh decided he was quite pleased with our family of five.  God had blessed us repeatedly, with generally healthy children.  But finances are tight and we had paid our dues with the sleep deprivation, diapers and nursing/pumping/formula scene.  He was done having babies.  Having kids takes 2 in my home, so I somewhat reluctantly came around to the idea that we were done having more children.  Josh got his vasectomy, and a two weeks later I found out that I was pregnant with Ethan.  Ethan was conceived against all odds, and we are so thankful that God lent him to us.  Despite all of the pain that comes with grieving him, the love that comes with him will always surpass that.

Most couples who have a baby die decide to try for another child at some point.  Not a replacement.  Certainly not.  But a "rainbow baby," as these blessed babies are referred to within the babyloss community.  Rainbows only come after the rain, you see.  Knowing that there will never be a rainbow baby for me is painful.  I don't know that having another baby would be the answer...because, after all, I did get my four children.  "You have one baby in Heaven Mommy, and three babies here...that's a lot of babies" -- my sweet 5-year-old Caroline told me this week.

It's a lot to adjust to.  Especially with the horror of the way it went down.  It's just a lot to grieve.  Grieving my sweet baby Ethan and grieving the loss of my childbearing years.

Simultanteous

Simultaneous.  Experiencing two emotions at the very same time.  Pretty much sums up my life right about now.

I am simultaneously happy and heartbroken.  Happy and thankful that I am here to witness and partake in my older 3 children's beauty.  The other half of me is crushed that Ethan isn't here to partake, at least in this earthly way.  So when you ask me how I am doing, I may genuinely reply "well" with a smile, though a part of my heart is filled with sorrow too.

This is a bizarre way to live life.  Balancing two emotions, that often contradict one another.  When grief was a stranger to me I didn't realize that intense emotions on opposite ends of the spectrum are not exclusive of one another.  It's a strange existence, simultaneously living fully in a world of happiness amd fully in a world of sadness.  Guess I'll just have to get used to it.

Perhaps this is what people mean when they say things won't get "better" but they will become "different" over time.  "Better" doesn't really seem appropriate any more, it's not like my son's death can improve.  So I aim for "different" in a more manageable, less raw, functioning sort of way.  To those of you who read this and know what it is like to have your baby die, is this what you speak of?  This pain, this longing for my son to be here is ever present.  It will never leave.  Nor do I want it to, if I am being honest.  Perhaps healing is the process of integrating this permanent longing into my being, into my day-to-day life, while I find a way to experience the joy the rest of my life has to offer.

That's a tall order, even on a day filled with the low tide grief.  But maybe, just maybe, this process is beginning.

A home away from home.

10 days.  You don't think that's a long time, but in many ways it is.  I spent 10 days laying on my left, and occasionally, my right side while on bed rest at The Brigham and Women's Hospital.  10 days away from my family.  10 days nurturing my beautiful son from the inside out.  10 days being loved and cared for by the nurses, personal care assistants, housekeeping staff, Dr. Mansour and even the people who brought me my food three times a day.

I stared at the same printed border on the wall all day.  I was told I had one of the best views in the building, though I wasn't allowed to sit up to appreciate it.  From my left side I could see the Shapiro Center, blue sky and the occasional butterfly, bird or helicopter.  I would later realize that the butterflies fluttered up from the family garden outside of the NICU.  Friends and family who visited me would tell me what they could see from the window, and I envisioned life bustling about below me.

Sure, parts of those 10 days were terrifying.  But most of them were not.  I remember those days as some of the best of my life.  Mostly because I had Ethan with me.  So much uninterrupted time with my boy.  Friends and family visited me, some of whom I had not seen for years.  It was wonderful.  Even Mavis, from Dr. Mansour's office, came to spend her lunch hour with me -- just visiting with me, so I wasn't alone.  If I haven't said it before, I love her.  I love all of them at that office.

I had my vitals taken and checked the baby's heartbeat at a minimum of every 4 hours.  Day and night.  That's right, if I was sleeping I woke up for it.  No worries though, it was a huge blessing to hear Ethan's heartbeat every time and be reassured that we were both OK at that point.  Every morning I would have a non-stress test, where they checked the baby's movement and made sure I wasn't contracting.  Some days I would have more than one.  Ethan was often tricky on those...switching his baseline heartrate from high to low, making it difficult to read.  He was healthy at that time, just keeping the nurses and Dr. Mansour on their toes is all.  Most nurses guessed that he was going to be a girl, remember we didn't know what we were having.  A higher baseline heartrate usually correlates with a girl, and vice versa.  But they were mistaken this time.

In the morning and at night I would Skype with Josh and the kids.  So they could see that I was OK and we could visit with one another.  The nurses would either come back later, respecting our "family time" or say hi over Skype and let the kids know what they were doing.  One of the nurses let Caroline and Jackson help with the non-stress test when they visited on Mother's Day.  Allowing them to guess where Ethan's heartbeat would be on my belly.  What a beautiful memory that is.  They left that day and my bed/sole place of being was covered in raisins, pretzels, and other snacks.  It was fabulous.  Every time I felt a crunch rolling over in bed that night I thought of my kids...I didn't feel alone.

To those women who changed my sheets daily, who made my bed for me when I was taking my quick shower each morning, who filled my water pitcher, I thank you.  Thank you Deleta for smiling every time you came into my room.  Eileen, thank you for stopping in to see if I needed anything all of those times.  To my countless nurses...Rose, Maiya, Terri, Susan, Marty, Kathy, and many more...thank you for being my family away from home.  I wish I still remembered everyone's name, but names have been another casualty of my grief.

At the beginning of every shift change I would thank each person for caring for me and Ethan.  I wonder if other patients did the same, I hope so.  These loving people came into work, leaving their own families and responsibilities to care for me and my family.  Not only do they excel at their craft, but they define compassion.  There was one day, the day Ethan and I made it to 28 weeks gestation, that I had a good old meltdown.  I awoke that morning thanking God (always) that he had granted us the blessing to make it that far.  28 weeks gestation was the first big milestone.  At that point Ethan had the same statistical odds of surviving, albeit likely with some needs, as a baby born at 40 weeks.  I was elated, and then realized that I needed to set the next "goal" date for myself.  Each hour, day, set of vitals, NST were all of my short-term goals, but I needed something to shoot for.  I was terrified that making the next goal be 29 weeks was aiming too high.  Of course I was all alone in my room, just crying when my nurse Marty walked by and heard me.  She came in and sat with me for over an hour.  Listening, being present with me while I cried.  Allowing me to simultaneously be optimistic and terrified.  Marty assured me that allowing myself to occasionally feel the gravity of what was happening around me would not harm my baby.  What a gift she gave me.  God sent Marty into my room that day I tell you.  She was a direct answer to my prayers.

Rose, my dear Rose.  She was my first nurse on that floor, orienting me to my room and the way things would work from here on out.  She was fabulous, still is I am sure.  Come to find out, she was my friend Courtney's nurse as well a year before.  Rose went on vacation a day or so before I delivered Ethan.  She heard about what happened and called me in my post-partum room, offering to come and be with me.  I thanked her and said no, that vacations are sacred.  Instead of coming to be with me, she went to Church to pray for Ethan.  How are these people so amazing?

By the length of this post you must have guessed that I could go on and on about my time on the ante-partum floor.  I didn't even write about the group session that oriented me to life in the NICU, or about my one outing from my room - when I was transferred on a stretcher for an ultrasound.  Those were big events during those 10 days.  What I have taken home from those 10 days are countless examples of God's love, shown to me and towards Ethan...while in utero.  Every poll is right when they rank The Brigham and Women's Hospital at the top.  They are a place of brilliance, miracles and love - not a bad combo.

The way it works.

Here is an example as to how a wave of grief is triggered.

This morning I looked at my calendar, the one that holds all of the family appointments.  I thought this coming week was Caroline's 5-year check up.  I was wrong, it was this past Thursday and I missed it.

Those of you who know me, know that I am organized, on time and certainly make all of our medical appointments.  Since grieving became my full-time job, I am having a hard time focusing on all of life's details.

Right now I am embarrassed that I screwed up.  Frustrated that I am going to have to reschedule this appointment as getting in with Dr. Jones can be challenging.  Amazed at how widespread my grief goes.  Sad that my son isn't with me (surely if Ethan hadn't died I wouldn't be preoccupied with grief, and therefore would have made Caroline's appointment).  And angry with myself that I didn't get a better hold of this.

Well-child check-ups are something I love.  I love Dr. Jones and all of her staff.  I enjoy learning how much my child has grown and hearing how well they are doing.  Even trouble-shooting parenting challenges with our pediatrician is positive.  But you see, since my son died I feel the need to take my kids to these check-ups.  I need to hear that they are healthy.  That they are thriving.  It's not that I worry that my older three are sick, or that they are going to die.  It's just that one of my sons was actually so sick that he did die.  I need to be told that Caroline is healthy.  To be reassured that I am doing everything right as a parent.

My disappointment is stronger than it would have been since I missed Ryan's 1 year well-child check-up.  I was in the emergency room with terrible kidney stones 2 weeks after Ethan died for that one.

Rationally I know this is not a big deal, it's just one appointment.  I'm not that parent that has a record of missing appointments.  That it can just be rescheduled, and if it needs to be with one of the nurse practitioners they are wonderful too.  It's just that grief is not rational.  It is utterly emotional.

Not your typical mother-in-law

There are lots of jokes and snide remarks made about mother-in-laws.  But none of them hold true for mine.  When I married Josh I knew his mother, Mary, was a woman I admired and enjoyed being around.  But this summer my relationship with Mary has truly been lifesaving for me.

Mary has handled the good, the bad and the ugly.  I have cried with her more times than with anyone else.  When a wave of grief knocks me on my ass I pick up the phone and call her.  She always answers.  She listens and doesn't interrupt my nonsense.  She is patient as I tell her why I am desperately sad and simultaneously manage my 3 older children.  She cries along with me over Ethan's absence, though doesn't make this "about" her.  She honors the place Ethan has in our family and remembers him as her grandson.

I know she grieves her grandson, and is devastated that she never had the chance to meet him on this Earth.  She reassures me that we will all see him one day.  A day will come in Heaven when we will not have to say goodbye to him or ever let him go again.

Mary's faith is inspiring.  She has been through a number of traumatic experiences in her life, yet her faith is unwavering.  Her faith is unwavering yet she validates that I am allowed to ask why this shitty thing happened to us.  She has delicately balanced being thankful and optimistic while honoring the pain Ethan's death has brought.  Mary is a special person.

Mary is not only my mother-in-law, but she is also one of my best friends.  Words fail here Mary, though I pray a genuine thank you will suffice.  All my love to you.

Dead Baby, Dead Baby

That's right, I wrote it.  Dead baby.  That's what goes through my head sometimes.  Not as much right now, but certainly in the first month or two after Ethan's death, it was all I could think about.  My baby died.  I have a dead baby.  How the hell did my baby die?  As I have started to heal, as slow as that process may be, that phrase doesn't come to mind as much any more.  But, occasionally it does.

Listen, I know how crazy it sounds.  How outrageous it is to read or hear someone say "dead baby."  Say it out loud.  Go ahead, try it right now.  Dead Baby.  You will feel yourself cringe slightly.  I do it to.  As if it is offensive, certainly one of those never-to-be-mentioned topics.  But guess what, that socially awkward topic has been my life for the last 3 and a half months.  And it will always be a part of my life.  That's right, my baby died so I get to say "dead baby."  If it makes others feel uncomfortable, I guarantee it is worse to have reason to say it.

Sometimes I think I walk in the room and people start thinking to themselves "dead baby, dead baby, dead baby."  As if it is the elephant in the room.  This phenomenon seemed to happen more when it was the first few times I had been around a particular audience after Ethan's death.  It was as if people thought I would fall apart, or spontaneously combust.  If I am being honest, there were more than one occasion when I did emotionally fall apart, but it certainly wasn't because someone did or did not mention my son...it was because my son had actually died.

Everything is shaded differently now.  Shaded from Ethan's beautiful life.  Shaded from Ethan's tragic death.  Time is split in three segments for me.  Life before Ethan.  Life with Ethan here on this Earth.  And life after Ethan.

Ethan's death is the watershed moment in my life.  There is no denying that.  I am forever shaped by the life of my son, and forever shaped by his death as well.  That is not to say that I cannot, have not or will not be happy again.  Certainly not.  But that is to say that the old Annie is forever shaded by what happened, and that is not necessarily a bad thing.  But today I do find it sad.  Ethan's life and his death are so monumental that my world, my friendships, my being will always be impacted by all of this.

"Your death shaped me, but it is your life that changed me for the better.  It is for that reason your death will never overshadow your life."  -- Mary Thompson.

Well said, Mary Thompson.  Well said.

A beautiful father.

What a beautiful father my husband is.

I have fallen in love with Josh five times in our fifteen years together.  Perhaps I will detail that love story in a future post.  But what you should know for this journal entry is that I have fallen in love with Josh when I am witness to the father in him.

Sunday I held a baby for the first time since Ethan had died.  And today, I saw Josh hold a baby for the first time as well.  Our dear friends are staying with us for a couple of days and they have two amazing children.  This morning I saw Josh hold baby Luke.  I heard the slight rise in octave and soft tone of voice he used to make Luke comfortable and smile.  It brought me right back to the first moment Josh held Caroline.  He used that same voice, to introduce himself to her, and to tell me that she was very "easy to soothe."  I'll never forget him telling me that, in those first moments.

This was the first time I witnessed Josh holding a baby since our's was ripped away from us.  As usual, it was a beautiful sight.  He should have held Ethan countless times by now, speaking to him in that soft tone of voice.  Nothing can be said or done to make this pain easier or softer for me, or for Josh.  I just keep reassuring myself that Ethan is being held and cared for by Jesus.  I miss my son immensely, so much so that I had to take a break from my kids, go into the backyard and cry for a good ten minutes today.  I am saddened for Josh that he doesn't get the time with Ethan that he has had with our older three children.  The lost chance of witnessing Josh father Ethan, yet another layer of grief.

The tides of grief.

Have you all heard of the waves of grief?  If not, let me introduce you to them. My first encounter with them was the moment Dr. Van Marter came into my post-partum room that first night to tell us of Ethan's grave prognosis.  It was as if I had been walking along the shore, right before a storm came, and things had seemed relatively calm.  I had even ordered and eaten dinner that night.  And out of nowhere a tsunami came and washed me away...away from the world I had known where babies lived and were healthy.

This is what I have learned about grief.  Grief is tidal.  Substitute my pain for the ocean and you have the periodic rise and falling of my pain.

The decent days are comparable to low tide.  (I knew I always preferred low tide.)  The gentle waves washing over the smooth sand.  The waves being ever present, just like Ethan's absence.  When I'm having a "good" day, I may not even hear the sounds of the gentle waves crashing unless I turn my attention towards it.  Much like the dull ache of my son's death being ever present, but perhaps no longer the immediate thought on my mind.  A sign that I am healing, I believe.  Low tide are the "good" days.

High tide is unavoidable.  The moon does its thing and pulls the pain towards me.  Waves are no longer gently crashing, but now the surf is rough.  The pain of Ethan's death, his absence in my day-to-day life, is more raw.  I can't outrun the high tide, it always catches me in the end.  When things are really bad (like the weeks leading up to my due date and those before we spread Ethan's ashes), the waves beat down on the sand.  Forever changing the landscape of the beach, of my soul.  Those truly awful times feel like I am sitting on the beach, at high tide, during a hurricane.  The pain is so intense I wonder if things will ever subside, if I will ever catch my breath again, if my sobbing will ever quiet.  But it always does, somehow.

The tides of grief, they are exhausting.  I have done my best to face this grief head on.  To allow each painful wave, at low or high tide, to wash over me.  To feel the pain, so I can move through it...instead of around it.  With Ethan's death I lost countless opportunities to change his diaper (I did that just twice), to burp him, nurse him.  I can't care for Ethan, the least I can do is grieve for him.

My biggest fear.

Here's my biggest fear in all of this.

That the world will forget Ethan.

It's simple and terrifying.  Simply terrifying.

So few of you had the chance to meet him, to make memories of your own with my sweet boy, to take pictures with my sweet boy.  After Ethan died I kept telling myself and anyone who would listen that Ethan was real.  His life, though brief, was real.  I think that is why I clung onto the letters and cards the nurses and doctors who cared for him sent me.  They were among the blessed few who met him.  Their letters were "proof" that I had a fourth child, a third son.

This is a going to sound strange.  I am thankful that I had a c-section with Ethan (it was my only section of the 4 deliveries) for the sole reason that I have a scar.  I carry a scar on my flesh as proof that Ethan was real.  After Ethan was ripped away from me I could no longer place my hand on my swollen belly and feel his kicking and squirming.  But I can place my hand on my scar and find reassurance that he was real.  Every time I get dressed in the morning I see my scar, and a small smile spreads across face.

I fear that Caroline, Jackson and Ryan will tell the world they have 2 siblings when people ask them how many they have.  I fear that Ethan will be an afterthought.  I acknowledge that there will come a day for each of them when they will shape how they choose to remember their brother.  It is their choice if they include Ethan in their family pictures or conversations, but I try to model an inclusive approach.  Ethan's baby hat is framed in a shadow box with his 3 older siblings' hats.  Photos of Ethan neighbor photos of Jackson in the stairwell.  Photos of Ethan's name, written in sand, are among our family beach pictures in the entryway.

I beg you all to remember my sweet Ethan with me.  To never forget that he was hear for 28 weeks inside of me and for 4 days outside of me.  Please don't forget him, I know I never will.

I think I saw you today

Jackson, Ryan and I were playing outside this morning and I think you joined us.  I was sitting on a the grass missing you, thinking about how nice it would be to have all three of my boys playing together, and there you went, right by me.  You were a beautiful monarch butterfly this morning.  Jackson saw you and shouted "Hi Ethan!"  A few minutes later Jackson said you had gone by as a white butterfly.  About an hour later we were at the playground and you went by again, as another monarch butterfly.  I really do think that was you.  I LOVE that Jackson thinks of you and speaks to you.  You remain brothers even though you never met each other.

Today I received a wonderful necklace of the letter "e" from my friend Potts.  She knew I would love it and wear it to remember you by.  A letter from another friend came in the mail today as well.  She told me how your life and death helped her to let go of past resentments, and deepen her faith.  I am so honored to be your mom Ethan, you continue to shape the lives of others even though you were only here for four days.  The power of a baby, a very special baby, is astounding.

Another person called me today to thank me.  I had no idea what I could have done to deserve thanks from this woman.  You see, she witnessed me hold a baby for the first time yesterday.  She witnessed my slight smile while three tears ran down my face.  The last time I had held a newborn it was you, when I let you go.  Clearly I have been building myself up for this moment, and yesterday seemed like the right time/place/baby.  I was at Church and was having a "good" day, as good as days get nowadays.  The woman who called told me she witnessed my courage yesterday, the courage it took for me to confront my grief.  She had been waiting for four years to move a bag of her father's clothes.  After her father died she couldn't bring herself to do something with those clothes, doing so would have made her father's death "real."  But yesterday, after seeing me hold that baby, she mustered the courage to do something with that bag of clothes.  I am beginning to wonder if God is somehow working through me, as he worked through you during those four days.  Most of me thinks this couldn't be true, surely I am unworthy of that honor.  But slowly, I am beginning to wonder.  

Thanks for visiting me today, it was good to see you.  All my love,

Mom

Please Be Gentle

Someone shared this poem with me tonight.  It articulates the nuances of a mother's grief for her baby.


Please Be Gentle

Please be gentle with me for I am grieving...
the sea I swim in is a lonely one
and the shore seems miles away...

Waves of despair numb my soul
as I struggle through each day...
My heart is heavy with sorrow...

I want to shout and scream and repeatedly ask "WHY"...
At times my grief overwhelms me and I weep bitterly..

So great is my loss...

Please don't turn away from me
or tell me to move on with my life...
I must embrace my pain before I can heal...

Companion me through my tears...
sit with me in loving silence...
honour me where I am on this journey...

Don't forget me or my baby..
Listen patiently to my story...
I may need to tell it over and over again...
It's how I begin to grasp the enormity of my loss...

Nurture me though the weeks and months ahead...
Forgive me when I am distant or inconsolable...
A Small flame still burns inside my heart...

Memories trigger both laughter and tears...
There is no right or wrong way to grieve...

We each must find our own paths...
but... please just walk beside me.

-- by Jill Engler

This post isn't pretty.

I am nervous about publishing this post.  I have been using this blog as a journal for my healing process.  Well, my son died and the process isn't always pretty.  This post is honest.  It's one of the ugly sides of grief.  I have no insight or inspiring faith-related comment to include this time.  This is me journaling as if no one would read it, so please try not to judge me.

This summer I know more than 15 women who have delivered babies.  If you are reading this, there is a fair chance you are among them.  I was supposed to be too.  How I wish I had been.  I was supposed to be waddling around life massively pregnant this summer.  But instead my world came crashing down around me when my son died.

If I could have pushed a pause button on the world's pregnancies and deliveries you bet your ass I would have.  Every time I saw or heard of a pregnant woman it punched me in the gut.  Knocked the wind out of me, sometimes literally.  I remember the first time I saw a pregnant woman after Ethan died.  It was the very next day, she was walking down the sidewalk as I drove to the funeral home to make arrangements for my baby to be cremated.  Talk about salt in the wound.  Was it not enough for my last chance at pregnancy to have ended horrifically?  For my son to have died?  But now I have to walk in this world where other people's blessings remind me so vividly of what I want for myself?  Of what I "should have had" for myself?  For 3 full months after Ethan died I should have still been pregnant.  It was a long ass summer.  The lost summer of 2012.

At this point I need to genuinely declare, that I am happy for everyone who is pregnant or has a baby.  That has always been the case, especially for all of you who are part of this Summer of Babies.  I pray you all believe me when I write that I have always wanted the best for you and your families.  Every night I pray for you and your babies to be happy and healthy.  That's the truth, I do.  It's just that seeing the bliss of being pregnant or with a newborn reminds me of what I am missing for myself.  Simultaneously I am rejoicing with you all, for your blessings, while doubling over in pain for myself.  I am jealous...that is one of the most uncomfortable parts of grieving for me.  I don't consider myself to be a jealous person, but if I am being honest, I am jealous that I can't have my baby too.  Again, not one bit of me is wishing ill on others with babies or pregnancies.  I am sorry if reading this honest, ugly part of my grief is uncomfortable for you.  I assure you it is even more so for me.

You see, Ethan was supposed to be your babies' friend.  He was supposed to be a classmate in this Summer of Babies.  In short, it's just not how I had anticipated this summer going, and the adjustment has been (and at times continues to be) immensely painful.  Instead of washing my bottles and bassinet bedding I was giving them away or throwing them out.  When I should have been reading books to my 3 older children of their baby brother/sister joining the family, I was reading We were going to have a baby, but we had an angel instead.  How the hell did this happen to my family?

I can honestly say that this is all getting "better" for me over the last few weeks.  With my due date passing, having such a beautiful experience in spreading Ethan's ashes, and most of my friends having their babies I am feeling far less jealous.  I was even able to walk into Babies 'R Us the other day and smile at some of the things I saw.  Do I wish I had cause for buying something there myself right now?  Absolutely, but I didn't run out of the store as I did in June.

If you made it through this entire post, I pray you don't think I am a bad person.  I promise you I am not. I am just a person in pain.  But the healing has begun, thank the good Lord.  Hopefully I have not scared you off from me or my "journal" with this one.  Thanks for hanging in there with me.

My Do's and Don't's of navigating babyloss.

Just because my baby died does not make me an expert on the topic of "babyloss."  First off, I don't really like that word as I don't believe that I lost my baby.  I like to think that I relocated him, from my arms to my heart.

The night Ethan died my good friend & sister Mel told me something.  She told me to prepare myself for people saying some really stupid things to me, even if they have good intentions.  I had heard of this before, but having her say it to me then prepared me for multiple social encounters I wish had gone differently.  With that being said, I recognize that my take on social graces may be skewed based on my grief & resulting depression this summer.  So again, take what is to follow with a grain of salt if you prefer.  I offer my insights on this topic not to guide you on how to act around me.  Instead, as something to reference in the future, if you (unfortunately) have to navigate a relationship with another person whose baby dies.

Do acknowledge that they had a baby.  Not just that their baby died.  This can look like a simple card congratulating that person on the birth of their baby followed by a sincere condolence that their baby could not stay with them.  (Thank you Jen by the way for that, I kept that card for this very reason).

Do let them know that you would like to hear about their baby, if they ever want to talk about that with you.

If you talk with them about their baby, do speak the baby's name.  I love to hear Ethan's name, to read it also.  When Ethan died I lost the opportunities to hear and read Ethan's name throughout a lifetime, so I love to experience part of that somehow.

Don't tell them it was "meant to be."  Or that "God has a plan" that involved their baby dying.  Let them come to that conclusion if it is right for them.  Parts of that is what I believe about Ethan's life and death, but I had to come to that conclusion for myself.  When people told me that, especially so early on, it angered me.  How did others know God's plan?  And why did that plan suck so much?

Don't say "well at least you have your other three."  Yes, I recognize how blessed I am to have my older three children, but I want my fourth too.  Sometimes, when I was irrational and consumed by my grief, I wanted to ask people which child they would give up and not be depressed over?  Do consider saying something like, "I am so thankful that you have three children at home who love you and can make you smile.  Though I would think that doesn't erase the pain of not having Ethan.  I'm so sorry he isn't here."

Do be patient with them.  Allow them to set boundaries with their relationships if need be.  Some of my best friends allowed me to drift away a little bit, as they had newborn babies when I didn't have mine.  But they continued to let me know they love me through a text, Facebook message, etc. without expecting me to be able to see them face-to-face or talk with them on the phone.

Don't say "you can have another."  First off, Ethan is irreplaceable.  Even if I were to have another child, it would not erase the pain of Ethan no longer being here.  My heart made room for Ethan, and that cannot be erased, nor do I want it erased.  Secondly, the person may not be able to have another, or they may be frightened that it will happen again if they try.  I am unable to have any more children as Josh already had his vasectomy.

Do consider including acknowledging the baby's absence around holidays and special occasions.  Such as "Remembering Ethan at this time with you."

Don't say "I think my friend had it worse when she lost her baby at 8 months along."  (I really had someone, though clueless and with good intentions, say this to me last month).  "I think it was worse for her because she knew she was having a girl and had the room ready."  A baby dying is a baby dying, it's really shitty no matter how far along, what sex the baby was, etc.  Do consider saying "I'm so sorry for your loss.  My friend had a similar tragedy.  You are not alone in this."

Don't, under any circumstances, tell someone that they are "better off financially."  That one took the cake thus far.  An idiotic thing to say to someone, by someone who should know better.

Do stay in touch with the person.  In a form that they are comfortable with (phone, in person, cards, email, text, etc.).  Grief can make you feel very lonely.  Losing their child is enough, try not to have them feel that they are losing your friendship too.

Do tell them that you are there for them and that you love them.  Don't tell them you "know how they feel" unless your baby died too.  Do  tell them that you "can't know what it is like, but that you are there to listen and try to understand with their help."


Again, take 'em or leave 'em.  These are some of my reflections on how to respect someones baby and support their healing early on.  Thanks to all of you who have and continue to do so for Ethan and I.

You'll never feel closer to God...

"You'll never feel closer to God than when you hold a baby who was born to die."

A wise woman said this to me about a month ago.  She had no idea my baby had just died, let alone that I had just had a baby.  I went 32 years without hearing such a statement, and then had this said to me 2 months after Ethan died in my arms.

My response:  "I know what you mean."

Have you ever had the gift, as sad as the circumstances may be, to be with someone when they died?  I had not until it was my son.  My sweet son Ethan.

Before I went into the room I prayed to God, asking him to grant me the Grace to be strong.  To grant me the peace to live in that very special moment, and make memories to last me my lifetime.  I asked him to allow me to appreciate the joyous moment of holding my son for the first time and to delay my grief by one more hour.  God granted me that gift, and I will be forever grateful.

When I look back at those pictures of me holding Ethan, I see a mother's pride in my eyes.  That's right, Ethan may have been born at just over 3 lbs under terrible circumstances, yet he was my son.  I was, and remain, damn proud to be Ethan's mom.  So I posed for that first (and last) picture of a mom holding their newborn.

I wasn't scared to be with Ethan when he died, hold him when he died.  I did ask his nurse Maryann and his respiratory therapist Richard to be nearby and answer any questions I might have as things progressed.

This past winter our cat, Pete, became quite sick and needed to be put to sleep.  I was anticipating being the one there when we did that, and was really worried and scared to be present when our pet died.  (It didn't work out that way as I was placed on bed rest the day it needed to happen)  I knew it was the right thing to do, but I was just anxious about the experience.  Yet here I was, removing life support from my own child and I was not nervous.  I was at peace with it.

I felt God's presence in that room, that NICU storage closet that had been cleared out for us.  Something holy was happening.  Maybe that is what people reference when they talk about the Holy Spirit.   We were not alone in that room.  As I held the gift that God gave me I knew that it was time to give him back to God.  Jesus is holding Ethan until I arrive and reclaim that job.

Being present at Ethan's death was a gift.  I do not fear death, for I have seen it in all of its beauty.  Of course I pray that when it comes time for me to walk that journey, that I will be comfortable, as Ethan was.  But I will not fear death itself, for I have someone to meet.  "You'll never feel closer to God than when you hold a baby who was born to die."  Amen.

It was not just for the pizza.

For 3 out of my 4 pregnancies I have lived in NH, about 1 1/2 hours away from The Brigham and Women's Hospital.  I have lost track of how many times people asked me why I chose to have all of my prenatal care and deliver my children at The Brigham.  Of course people asked why.  The traffic was crazy several times.  The money to pay for parking was outrageous as usual.  The "just run in" and get checked was at least a 4 hour journey.  Those of you who know me well, know that I have Boston in my heart.  It is my home away from home now that I live in a town that feels like Mayberry sometimes.  And of course, there is Regina's on Thatcher Street...the very best pizza in the world.  You know I used every doctor's appointment as an excuse to eat up and introduce my children to the best pizza.

14 years ago my sister delivered her first child, Haley, at The Brigham with Dr. Mansour.  He has his own practice there and usually is the only physician in the practice.  That means he delivers each and every baby himself, you don't have to worry about getting whatever doctor is on call at the moment you go into labor.  Unless he is out of the country (only happens a couple of times a year), Dr. Mansour will deliver your baby.  So, 14 years ago Dr. Mansour saved my sister's life.  She had a healthy pregnancy with a healthy baby, and during the afterbirth an unexpected complication occurred.  They responded quickly and saved Gail's life, but also avoided a hysterectomy.  My sister went on to have her son, Mitch 2 years later.

When I lived 15 minutes from The Brigham during my pregnancy with Caroline, Dr. Mansour was the obvious choice.  He saved Gail's life, I trust him.  That's it.  And it didn't hurt that the best Children's Hospital in the country is physically connected to The Brigham in case anything were to come up for our baby.  So when we moved to NH, I knew I would travel for him.  Something in my being told me not to switch care.  I drive to Boston for pizza, I better drive there for my baby.  It was just the right decision for me.

Then the shit hit the fan on May 10, 2012.  When I walked into the hospital that night I knew I wouldn't walk out of it pregnant.  I was praying that I would not get fresh air for several more weeks - an odd thing to be praying for.  Clearly things were bad.  It's never good when they send 2 neonatalogists to you that night to tell you about the dangers of delivering a baby at 27 weeks.

God willing, we got another 10 days further before I became septic.  I developed an infection quickly and started to feel nauseous, cold, and overall like I had the flu.  I called the nurses to come and check my vitals and run the non-stress test earlier than usual because I just didn't feel right.  Initially everything was reporting fine, but the mom in me knew I was giving birth that day.  I called Josh and told him to find someone to watch the kids and get down asap.  Within the next 10 minutes I started contracting.

I transferred to L&D quickly and had more medications than I can remember.  They cranked the pitocin and quickly got to 18/20 on that.  Even though I was in labor and contracting, my body knew it wasn't time to deliver the baby so it wouldn't dilate.  Ethan's heart rate kept going to 200 and alarms kept going off.  Josh made it with about 1 hour to spare and then came the emergency c-section.  I really wasn't nervous about surgery.  I don't get nervous about that stuff.  It is what it is, I am healthy and go to the best doctors in the world.  It was going to be what it as going to be, God's plan.

Ethan was born and then transferred to the NICU.  I could tell that the section wasn't going smoothly.  Everyone in the OR was quite professional, and I think some other people may not have realized there was cause for concern, yet I knew something was off.  I'm not sure if it is because I work in a cancer setting, and I know the dance medical professionals do when things aren't great.  Heck, I have done it myself.

Apparently they struggled to stop my bleeding and somehow my bowel became involved.  All of this was complicated by my sepsis and having been on blood thinners for months (because I had 5 blood clots within the past year).  In short, not good.  The table was flipped with my head down towards the ground, lots of meds were pumped into me to help my blood to clot and I was tranfused with platelets, and maybe blood - I cannot recall that detail.  Dr. Mansour leaned over the blue curtain and said "everything is fine, but..." and proceeded to tell me what was up.  Josh and I heard Dr. Mansour thank the other attending physician for assisting, saying "can you imagine how much more difficult this would be with a resident?" or something close to that.

I looked to Josh, reassured him that everything would be OK.  That this is why we drove to Boston all of those times, to have the best of the best care for me and Ethan.  It was not just for the pizza.

It wasn't until 3 months later that I learned all of what happened in that surgery.  That I learned at some women in my position die...and who knows just how close I was to having a hysterectomy at 31 years of age.  Dr. Mansour saved my sister's life and mine.  Not quite sure how to thank a man for that.  At 5:30am that morning I was healthy, and at 1:00pm not so much.  Life is fragile.  I am thankful that my family is not grieving their wife/mother/sister in addition to their sweet son/brother/nephew.  Even when life is dark, there are gifts and blessings.

I don't believe in coincidences.

So I no longer believe in coincidences, I just don't.  Not the big ones at least.  I believe God's finger stirs the pot and orchestrates a lot of those coincidences.

The raw pain of grief has made me so vulnerable this summer.  I think people typically deal with grief in one of two ways (and both can be healthy), either by becoming quite private with your grief or quite open.  Clearly, I am of the open variety.  Being so open with my grief I have found it vital to talk about, cry about, smile about, swear about what happened.  God has shown me mercy this summer, by sending me someone or something to reassure me that I am not alone, that he and Jesus are in fact carrying me during my darkest hour.

Check these out...

As I will write about in another post, the nurses and personal care assistants who cared for me and Ethan when I was on the high-risk maternity ward mean more to me than I can say.  They had become my support network 24 hours/day for 10 days.  When I became septic in a matter of 2 hours on the morning of Ethan's birth, I was removed from their care and transitioned to other departments (L&D, Post-Partum) and had no chance to say goodbye to these amazing people who had loved Ethan right along with me.  One night in July I was playing outside of my house with my kids and one of my overnight nurses from The Brigham drove right by.  I'm not making this up.  She lives just outside of Boston and clearly works in Boston.  Yet I live in a tiny town in NH, at the top of a dead end street.  Apparently her cousin is my neighbor.  She had me for just 1 overnight shift, never even saw me awake all that much, let alone with the light on.  Yet she recognized me, remembered my name and Ethan's name/story.  Terry and I stood on the side of the road and cried and hugged as we talked about it all for a half an hour.

One day in June I was about town taking care of an errand that Josh had forgotten to do with the fog we had all been living under.  Just so happened that I ran into an acquaintance in the process of getting the errand done, who knew what had happened.  We started crying together and then she shared that someone close to her had lost a baby too recently.  I gave her my email address and the rest is history.  We have become friends & supports to each other along this shitty road of grief.

My sister-in-law Mel was at a church service for a class assignment with a fellow student.  Just so happened that the sermon that day was by a chaplain from The Brigham and was about living life after a terrible loss.  Mel shared with her fellow student about Ethan's death, and it turned out that that student had her son die in exactly the same way a number of years ago.  And there is another support for me.

Even small things, like receiving a letter from Dr. Van Marter (the doctor who saved Ethan's life that first night) the day after I prayed for additional support are not accidental.  It was months after Ethan died, and her letter apologized for this coming so late.  No apology necessary Dr. Van Marter, I received your letter on exactly the day I was supposed to.  And the books that Caroline, Jackson and Ryan chose to read to Ethan on our day at Appledore.  Things about that day were "fitting."  They happened that way for a reason.

And my favorite for last.

Josh and I had made the decision to take Ethan off of life support.  We were alone in the conference room outside of the NICU, and I walked through the NICU lobby to find Dr. Larue and let him know our decision.  A man, a stranger to me, approached me asking me if I was Mrs. Gray.  Yes, I said.  He went on to introduce himself as Rev. Richard Slater, Josh's colleague here in NH.  I remember that he had spoken with Josh the day before offering to come to the hospital for a pastoral visitation, and that Josh had politely declined because I was supposed to be discharged that day.  "It's alright if you don't want me to stay, but God told to come here now."  Now, I had just asked Josh 2 minutes before this to try and baptize Ethan himself.  He had agreed to try, but was unsure if he would be able to given the gravity of the emotion.  Rev. Slater joined us in that NICU back room (I think it was actually a large closet they had cleared storage out of for us) and baptized Ethan with us.  A few days later he called Josh and shared that his daughter had had a baby die under similar circumstances just a few months ago.

No, there are no coincidences.  Open your eyes to divine intervention.  It's there, I promise.

What love is.

It's amazing how a baby can inspire such love.  This is how I define love.

* 2 lifelong friends driving 1 1/2 hours each way to talk with me and listen to me cry, and somehow thank me for the chance to do so.  Thank you Al & Heather

* countless meals being prepared for my family while I was on bed rest at The Brigham.  Thank you all.

* A genuine offer to fly up from Florida and help care for Caroline, Jackson and Ryan when Josh and I were in the hospital.  Thank you Denise.

* Taking the red eye from Seattle to Boston the night Ethan died to help me and my family for the first five days.  Thank you Cheryl.

* Sending me a card letting me know you love me and will always there for me, every single week this summer.  Thank you Meredith.

* Praying for me and my family.  Thank you all.

* Zeroing my balance with your office, telling me that bills were the last thing I should be worrying about.  Thank you Dr. Mansour.

* Sending my family to the movies for a day of distraction/fun.  Thank you Katie & Tom.

* Sending me countless emails, texts, and Facebook messages telling me you care and were praying for us.  Many of you I had not been in contact with in 15 years, and many of you were complete strangers.  Thank you all.  

* Coming to the Emergency Room and rubbing my back when I was there alone, in severe pain due to kidney stones and the c-section recovery, just 2 weeks after Ethan died.  Thank you Meredith.

* Going to church in Mexico while you were on vacation to pray for Ethan.  Thank you Ron & Robin.

* Sending me the most beautiful flower arrangement I have ever seen.  Thank you Cara.

* Taking the time to collect several monetary donations to help me pay for medical bills.  Thank you Sarah & all of my colleagues.

* Coming to see us when you heard what we were about to do.  And for being present with us as we held our baby for the first and last time.  Thank you Dr. Mansour.

* Sharing with me that Ethan's life inspired you to be more patient with your children, hug them tighter, pray for the first time in years/ever.  Thank you all.

* Immediately coming over to watch our kids when my water broke and I had to rush into Boston.   Thank you Skip and The Dotson Family.

* Offering to watch our children, despite having your own, and usually living in a different state.  Thank you Becky, Karen, Jeannette, and others.

* Holding my other baby Ryan so he could sleep while teething when Josh and I were at the hospital.  Thank you Chris and Mel.

* Coming up to help with anything and everything at a moments notice.  Thank you Mom and Dad.

* For making my return to work manageable.  Thank you Chelsea, Val, Jenn, Ruth, Michelle, Laura and countless others.

* Letting me swear as much as I needed to/wanted to, and joining in.  Thank you Lee.

* Talking with me about my sweet boy.  Thank you Kelly.

* Loving me through all of my crazy meltdowns.  For watching the kids so I could go cry, nap or shower - the 3 things that helped me to feel better.  Thank you Josh.

* Becoming my friend after you learned what happened to me, to my family.  You didn't run away from me or my pain.  Thank you Abby.

* Sharing your story, for knowing the pain that was in my heart without me having to explain it, and for proving to me that I am not alone in this shitty club.  Thank you Ann, Meredith, Susan and my friends my Glow.

Thank you all for showing me God's love.  I aspire to pay it forward.

The NICU: Heaven and Hell on Earth

The NICU

I have the absolute best things to say about the NICU.  The best things to say, that all still resulted in the worst possible thing, my baby dying.  I love the NICU, I really do.  I used to miss being there, shortly after Ethan died.  It wasn't just that that was where I had known my son, or that that was where my son lived his entire life.  It was more than that.

It was the people there.  The doctors, Paul and Linda among many, who introduced themselves by their first names.  The doctors who stayed hours after their shift was over to wait for me to wake up just so they can personally explain what was wrong with his heart.  The doctors who stayed after their shift to be there while we took Ethan off of life support.  The nurses, Tava, Maureen, Maryann, Sarah, Mel, Mary among others, who jumped to sign up to be on Ethan's care team.  Tava even called her friend Sarah, fellow overnight nurse, to tell her all about Ethan and how Sarah had to take care of Ethan on the nights that Tava wasn't on shift.  Sarah who spoke of her patients as "Sarah's babies."  I found that so reassuring that even though I was physically unable to be next to him at all times, someone who loved him like a mother was there on my behalf.  The respiratory therapists - they are angels among us.  Perhaps unsung heroes in the NICU.  I love them for bagging Ethan for hours, staying by his bedside their entire shift as they tried countless ventilators with countless settings.

The NICU was the most miraculous place I have ever been.  Seeing a 1-pound baby alive, with a real chance of surviving.  I pray for that baby every day, and for his/her family.  It was also the most traumatizing 4 days I hope to ever have to experience.  It was evident that Ethan was the sickest baby there, a humbling experience as it is one of the very best NICUs in the world.  That first 18 hours or so Ethan had 6 plus staff working on him constantly.  You could barely see the incubator, it was quite a site.  But they made room for me and Josh, insisted that we come right in front of them and talk to Ethan and hold his feet and hands.

Bells and alarms.  I heard them in my sleep for a few weeks after his death.  Every time his heart rate or breathing went too high or low the monitors started flashing, bells and alarms would sound and respiratory therapists and neonatalogists came running to him.  Did you know that there is a ticker above the door of the NICU?  Well there is.  It rotates through the incubator numbers, indicating if something was of concern with a particular baby.  Ethan was a frequent flier on that ticker.  When things were really bad it would flash Ethan's incubator number in red lights, followed by the medical concern.

You know what I love about the NICU?  They all loved Ethan.  I mean they LOVED Ethan.  I saw it in their eyes.  I read it in their personal letters they wrote and mailed to us over the weeks and months of this Summer.  I saw it in their tears.  I saw Tava gently wipe away the tears, out of the corner of my eye, as she heard me tell Ethan to hang on as "life got better."  I saw the tears welling in Maureen's eyes as she came out to tell me it was time to have Josh come back from NH.  I saw the soft tears of Dr. Larue as he asked me how I was, and knew the painful truth before I answered.  I saw his bloodshot eyes as he sat across the conference table telling me it was time to let Ethan go.

I love that Ethan's nurses, respiratory therapist and doctors said the Our Father with us, placed their hands on us, as we baptized Ethan.

I love the NICU staff, people I consider to be friends, for not running away from me, Josh or most of all Ethan.  They didn't run from the pain, they held our pain.  I love them for celebrating Ethan's birth with me, and for honoring his death with me.

The NICU is a place of miracles and also of tragedy, depends upon the day, hour, baby.  Even though our sweet boy was unable to stay, I will always remember the NICU as a place of God's Love.

Ethan's album

Photos of our baby boy...

Ethan had huge feet!  No surprise there.

Not a good quality picture, but we had just baptized Ethan.  Josh's colleague Rev. Richard Slater felt told by God to come and visit us at the exact moment we decided to take Ethan off of life support.  God put him there to baptize him for us, so Josh could be fully present as a father.

In Dad's loving arms.

Not a good picture, but a very precious one.  The only family picture we have with Ethan.

About 16 weeks along with Ethan.  Caroline & Jackson wanted in on the picture, not sure where Ryan was.

Holding Ethan for the first & last time.

We were allowed/encouraged to hold his feet & hands even though we were not allowed to hold him.

Ethan was 1 day old in the picture, taken when he was doing well.

22 weeks along

24 weeks along, he was set to be a 10 plus lb. baby boy!

My favorite picture of Ethan.  One eye open, like Popeye.

My sweet boy.