Tuesday, November 27, 2012

Your siblings.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, November 24, 2012


Time has become strange.  The definition of bittersweet.

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

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

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

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

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

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

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

Wednesday, November 21, 2012


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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, November 15, 2012

Tears of Joy

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

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

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

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

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

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

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

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

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

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

Wednesday, November 14, 2012

A Big Change

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

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

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

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

Monday, November 12, 2012

I'm starting to struggle again.

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

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

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

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

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

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

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

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

Tuesday, November 6, 2012

My revelation

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

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

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

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

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

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

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

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

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

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

Sunday, November 4, 2012

Could this be?

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

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

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

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

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

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

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

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

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