Monday, January 21, 2013

My family room floor

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

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

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

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

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

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

Sunday, January 20, 2013

Looking in the mirror.

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

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

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

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

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

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

Wednesday, January 16, 2013

The Dead Baby Card

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

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

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

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

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

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

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

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

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

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

Saturday, January 12, 2013

I'm proud of myself.

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

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

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

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

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

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

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

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

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

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

Taking the Bullet

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

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

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

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

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

Thursday, January 10, 2013

Dare I Say...?

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

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

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

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

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

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

Thursday, January 3, 2013


Ethan has a job you know.  In Heaven.

This post might sound grandiose.  I am sure it is actually.  But to me it is true.  Because I feel it as the truth.  Know it, inside of me.

I am a person of strong faith, believing that we are spiritual beings beyond our physical beings.  Having always believed that, I have been open to those who speak of experiencing spirits, messages from loved ones passed, God, etc.  Many in my family have spoken of such experiences, though I have never had firsthand experience myself.

Two people, my sister and my friend Denise, have spoken to me about Ethan's spirit.  Well, I guess three people, if you count my therapist.  Though my therapist was professionally vague about this - simply recognizing that Ethan has an "old soul."  A few days after Ethan died his spirit visited my sister Gail, to assure me (through her) that he had made it to Heaven just fine.  And you've read about Denise's amazing encounter with Ethan and God in a former post of mine, Tears of Joy.

When I heard about the Newtown tragedy I felt deep within me that Ethan was there.  That he somehow had a role in comforting those little children.  This sensation was strong, I cannot explain it differently.  But I didn't say this out loud to many people, for I was questioning whether this was almost wishful thinking.  (certainly not wishful that Ethan died or that those in Newtown died)  Wishful in the way of Ethan having a purpose to serve.  That despite his death he was still helping others.  So I didn't say much to people about it.

Then one day I was talking with my sister about Ethan.  She told me that he has some kind of role in Heaven.  A job really.  One where he helps little ones cross over.  I loved that, and wanted to believe it desperately.  The idea hung around me and I asked my friend Denise as well.  Denise & Gail are right on.  Ethan is "Mr. Social" apparently, feeling honored to welcome his new friends into Heaven.

How I wish there was no need for the job that Ethan fills.  Yet how proud I am that my son fills that role.  I cannot be the proud parent who touts their baby rolling over early, or sharing what his first word would have been.  But hey, not many can say that their child is actually an angel.  That's not too shabby.

I'm proud of you Ethan.  Have been since those 4 days you fought so hard to stay on Earth.  Keep up the good work.