I'm the other NICU mom.

NICU moms and dads relate to one another in ways traditional birth parents do not. Cannot, really. It's this little club, albeit one that no one opts into willingly. NICU parents talk and compare birth weights in grams, not pounds and ounces. They compare how many weeks and days gestation they were when they delivered, where non-NICU parents simply state whether they delivered early or late.

Most NICU parents had a room full of doctors and nurses as they delivered, not just the 2 or 3 in attendance for traditional births. NICU parents know what it's like to go home from the hospital without their baby, calling every few hours for updates. 

NICU parents know the "other side" of delivery and parenting newborns. They know what it's like to parent their newborn through a giraffe isolette (and they know that those fancy isolette's cost as much as a new BMW), rather than a plastic bassinet. They know what each lead and beep means, what Brady's are and how to change diapers around wires galore.

NICU parents talk about the day their children were able to come home. How much they need to bathe in Purell and hibernate for half of the year during germ season. NICU parents can support one another in ways non-NICU parents cannot. We get it. The anxieties. The fears. The what-if's... NICU parents have support groups through hospitals, non-profits such as The March of Dimes, and social media. Where details of adjusted ages and developmental milestones are the topics. 

I'm the other NICU mom. The one whose baby didn't get to go home in a car seat after passing that car seat test. I'm the NICU mom who's friend, also a funeral director, brought my son home for me. I'm the NICU mom whose baby died. 

I wonder if most NICU parents saw me. The mom of the sickest baby there. Were my tears visible to you? Perhaps my reality - an unbelievably sick child requiring a team of providers surrounding us constantly - was too terrifying for you. If so, I fully get it. But now that you are out of the NICU, do you see us? The other NICU moms. The ones not on the Facebook NICU support sites. The ones who do not define our child as a miracle because they survived such challenging odds at the beginning of his or her life. Because our children are just as miraculous as those who lived.  

Do you choose to see us now? The NICU parents who are quiet as discussions meander back towards such topics? Do you choose to acknowledge us at The March of Dimes events? 

Please see us. We are still NICU moms and dads. We are still, and always will be, parents. Please see us in the corner of this NICU club. We are here.

I parent you still.

I parent you still. 

I'm sure you hear me. Sometimes aloud. More often my inner voice. 

It's quite special to be able to speak to you this way. I never feel alone now. 

Being pregnant was my most favorite thing. Truly, I cannot recall a time in my life that I loved deeper. For several reasons. But the biggest was having that intimate, almost secret bond with my children. It was just ours. Your little kicks, rolls, hiccups. When parts of my day were hard I would place my hand over you and remember that none of that other stuff mattered. Like people say, a job is just a job. Money stresses were nothing to dwell upon. That little miracle growing inside of me, that was what was important. The 3 little kids and partner at home, that was the focus. So whenever things didn't go smoothly in my world I would turn inward. And relish in that mother-child bond I had going on. The private one that pregnancy allows, before the world can witness it and attempt to interfere.

When you died it felt as if that bond was ripped away from me. With no warning literal alarms rang across the floor of that hospital. Announcing it was time for your birth. I birthed you. I sang you happy birthday. I changed your diaper. I whispered to you...I parented you.

In death I parented you. Ensuring a peaceful, painless death that you deserved. How I wish that could have come decades later. I put aside my selfish need for more time with you and walked away. Because it was the right decision for you. As other new parents swaddle and rock their newborns to sleep I planned your burial. Chose the books we would read to you after spreading you ashes among nature's beauty. I parented you.

I bake you cupcakes and sweep up the sprinkles spilled by your sister and brothers off the floor every May 19th. I parent you.

I hang your stocking each Christmas, and sneak down in the morning to fill it with flowers. I buy a little boy somewhere a Christmas gift that I think you would have enjoyed. I parent you.

I answer a seemingly mundane question with my real answer. I have 4 children. I patiently wait as eyes search for the fourth kid. And I bravely and proudly speak of you when asked. I parent you.

I speak to you while on my runs. Ask you for help when you siblings are sick and not breathing well. I keep our relationship in the present tense. I parent you. And it is my honor to do so.

Every day I parent you. It doesn't matter that you aren't visible to the world around me. You have changed the way I breathe. The way I feel. The way I touch. The way I see. The way I live. 

I may have held you just once in my arms, yet forever in my soul. Two plus years out I can tell you that our mother-son bond is not broken. It is greater than death.

I will go on parenting my 4 children. With a smile on my face.

Remembering

20 minutes after Ethan died I gingerly walked around my hospital room, trying to pack up my things...trying to give back the hospital grade breast pump that I had just rented 4 hours ago and somehow no longer needed. I remember Josh telling me to let him do everything. I remember looking out of the corner room view, 9 stories high, as twilight settled in over the triple deckers that are a Boston staple. I had forgotten what fresh air felt like. It had been 2 weeks since I had been outside.

 I'm not very good at sitting still, aside from the bed rest mandated during that pregnancy, I'm always moving. I just walked around that little room. Sitting down carefully - no longer feeling the countless stitches from my complicated c-section. The shock was setting in. I sat down. Stood up. Nurses walked in the door one by one, offering their condolences. These had been the people who watched me shuffle to and from the NICU. The people who brought me water the night after I delivered when I was in too much pain to get it myself. Josh was back in New Hampshire, staying at home with our other 3 little kids. One nurse tried to gently remind me not to pick up my 34 lb 11-month-old alive baby at home. He was too heavy for my stitches or something. All I knew was that he was alive. Unlike the baby I had just let go 20 minutes before. My favorite nurse Sally stayed with us as I wandered around the room. A mom who was lost. With nothing to do.

Josh pulled out a pen for me to sign something. Discharge papers perhaps? Can't remember. The pen said Kent and Pelczar Funeral Home on it. Ironic. They were the ones to pick Ethan's body up the next morning. Sally, my favorite postpartum nurse, offered to drive us home. We weren't a blubbering mess. We weren't even crying at this point. The fog of shock was settling in nicely. This wonderful woman offered to leave her shift early and drive our car to another state for us. I have no doubt she would have done that either, if we had accepted. When I remember this offer I wonder how she would have gotten home? Would she have called her family or friend to follow us to NH? I have no idea. Sally told us that her nephew lost their baby 6 months before, to a similar reason.

I remember thinking that I was functioning rather well given what had just happened. I remember not crying as we packed up. As I was wheeled out in that huge wheelchair they make postpartum moms sit in. The kind with the space in the back for your boppy, bags and balloons people brought to you while they visited. I remember Sally calling down quietly to the valet, telling them what had happened to us, to our baby. So they wouldn't charge us for parking or say congratulations to us I guess. Or ask where our baby was? I remember sitting in the wheelchair, and the nice transport kid (he was so young) got lost on our way out. Nurses had told him to have us leave through the ER exit, rather than the main exit ... an attempt at some privacy for the parents who may break down at any moment I guess. He took a wrong turn and tried to take us out at the ER ambulance door. No worries, I had been at the Brigham enough to know how to get back to the ER.

I remember fresh air. Cold air for late May. Sitting in the front seat of the highlander instead of the usual back seat, looking over a baby. Music for the first time in 2 weeks. Driving home...and for some reason we stopped at Chipotle to get some food? We weren't hungry. But hadn't eaten that day and was taking narcotics that made me throw up on an empty stomach. And we drove away from Boston. Away from the life where babies always lived. Away from my life where my children didn't die.

Towards a new life. One I didn't want. Yet one I have. There is beauty in my life. The hard days I just have to look for it. But it's always there, waiting...

Life isn't about waiting for the storm to pass...it's about learning to dance in the rain.
                                                                                             ~ Vivian Greene

Maybe Vivian's baby died too.

2 years

2 years ago I laid on my left side looking out at the Boston sky. 8 stories up the occasional butterfly visited my window. Those butterflies were among my visitors during those 10 days on my left side. A state away from my husband and 3 other children.

2 years ago tonight we laid in bed together for the last time. Thanking Jesus and my Lord for every moment with you. For every passing temperature check, blood pressure, heart beat check that passed as healthy on 4 hour intervals (that's day and night mind you). 2 years ago tomorrow morning I awoke feeling sick. It was almost shift change, my overnight nurse was pregnant - I remember that part clearly. I asked her if it was of concern that I felt nauseous? She said no. But I knew otherwise. 7 meant shift change and I waited 20 minutes for the nurses starting their day to round quickly. Then I pressed the button for my nurse. I happened to have 2 nurses assigned to me that day, both with more experience than I thought possible. These were the women, Kathy and Marty, who had educated me 10 days ago that I would be the first one to know if an infection was setting in. The NST and temperatures would say everything was fine at first, though I would say otherwise. 2 years ago tomorrow they were right. As an infection quickly spread throughout my body, infecting you and causing a dangerous case of sepsis for me. 2 years ago tomorrow I was hearing my doctor tell me "everything is alright BUT..." they couldn't stop the bleeding in the middle of my c-section. Me telling Josh it would be OK. Tomorrow I will celebrate your life, and also how lucky I am to have survived that day myself.

I didn't realize that over the next 4 days I would learn where those butterflies came from. I would have an answer to my wondering. Wondering why these butterflies were frequenting such a high window. 2 years ago tomorrow I became a NICU mom. And would learn that there is a butterfly garden in the NICU parents' patio - 7 floors up. The garden is in memory of babies who passed away in that NICU. 2 years ago this week your soul would join those in flight, fluttering 8 and 9 stories up.

2 years ago tomorrow I quietly sang happy birthday to you, surrounded by 10-12 people I had never met. Tomorrow I will sing you happy birthday Ethan. Caroline, Jackson and Ryan will spill sprinkles on the table and floor as they decorate your cupcakes. They will blow out your candle for you. As I tucked Jackson into bed tonight he said he wished you could eat your cupcake tomorrow. I wish that too.

You have taught me more in these 2 years than I could have imagined. Our relationship has grown strong. I am proud of you Ethan. Proud and lucky to be your mom. Happy 2nd Birthday...

Love,
  Mom

What Love Is...round 2.

How I define Love.

* Love is singing Happy Birthday, out loud, to a friend's baby gone too soon from a beach on Cape Cod.  Love is talking to Ethan, and asking if he liked the 4th of July fireworks, as if he were a child of your own.  Thank you Beth.

* Love is a friend reflecting upon the loss of her baby sister, and now as an adult, offering me support in the way I am speaking about and including Ethan with his sister and brothers.  Thank you Wendy.  And separately, thank you Alison.

* Love is taking family photos for me during Ethan's month.  Refusing to be paid.  And traveling across country to do so.  Thank you Chelsea.

* Love is performing assistant photographer duties during the above-mentioned photography session.  Carrying lots of bags, laughing instead of rolling your eyes when my kids threw tantrums, and shoving gummies at my kids as bribes for smiling.  Thank you Val.

* Love is walking in memory of Ethan in a non-profit walk to support and raise awareness around babyloss.  Thank you Kristen.

* Love is sending my family on the Boston Duck Tours last summer.  Knowing that we have always wanted to do so, but couldn't really stretch the dollar to do it on our own.  Seeing how healing simple family experiences can be for us.  Thank you Anonymous friend.

* Love is sending Christmas gifts "with Ethan in mind."  Thank you Lawlers.  Thank you Theresa.  Thank many of you who have done so.

* Love is thinking of sweet Ethan, with a butterfly, rainbow, the beach or something else.  And sharing that you thought of him.  Love is remembering.  Thank you Laura.  Thank you Daphne.  Thank you Julie.  Thank you over and over to lots of people.  Love is being able to say "lots of people" in this circumstance.

* Love is walking with me in the March for Babies in Ethan's honor last May.  For hobbling around the walk with a back injury.  For seeing my PTSD and grief freak-out coming from a mile away...and carrying me through it.  For coming up with a funny "code word" with me that day, code for "get me the hell out of here."  Thank you Val and Chelsea.  

* Love is pretty much yelling at someone who gave me a hard time during that March for Babies, because you understand.  Thank you Michele and Dan.

* Love is telling people that I have 4 children.  Love is telling people my REAL number, without prompting from me to do so.  Thank you Raeanne.

* Love is giving me your mother's lilac bush, knowing I remember Ethan with lilacs - my favorite bush and it blooms in May.  Love is not getting upset with me that the bush didn't transfer well and in fact, died.  Ugh...  Thank you Kathy.

* Love is taking the time to read my silly little journal here.  Love is actually thinking about what I have to say, rant about, swear about, and celebrate.  Love to all of you.

* Love is taking the time to comment or reply.  To reach out about something I shared here.  It translates to me that you love me.  Thank you all.

* Love is having a willow tree angel overnighted to me after hearing my cries that it had crashed on my floor.  Thank you Mary.

* Love is boldly telling me that you wish for me to have the peace a mother deserves, knowing that I had done all I could to save my son's life.  Thank you Gabe.  And thank you others.

* Love is making me a memory box to hold Ethan's few belongings in.  So they no longer sat in that empty diaper box.  Thank you Jenn.

* Love is making time, no questions asked, for your spouse to talk with me on the phone as I cried...again.  Thank you Bob.  Thank you Jess and Brandon.  Thank you Mike and Jenn.

* Love is fighting for a stronger marriage.  For finding our way through this storm together, sometimes differently, but always returning together.  Thank you Josh.

* Love is giving your mom an out-of-the-blue hug, with an extra-tight squeeze.  Thank you Caroline.  Thank you Jackson.  Thank you Ryan.

* Love is praying for us.  Thank you all.

* Love is allowing Ethan's brief life and ongoing legacy, inspire great love in you.  And for sharing how that translates for you.

What you may not understand.

There are lots of things people may not get about grief.  I can only speak intimately of a mother's grief for her baby.  And for that matter, of my grief for Ethan.  I don't speak for every mom missing their baby.  I've had ups and downs with how other's view my grief and healing process.  And I know I'm not alone with this struggle.  It's hard enough to grieve, to experience that all-consuming pain, but to feel judged for how you are surviving such tragedy...that can push someone right over the edge.  It is pretty clear that some people think there is a healthy timeline for grief.  A time period that allows for someone to grieve honestly, openly without eyebrows being raised.  Without loved ones questioning if the bereaved individual is "healthy." 

I'm no longer a hot mess.  Maybe on rare occasion, but not very often really.  I do still feel waves of sadness, some days the waves hit harder than others.  The love and longing for Ethan always feels the same though.  He's one of the first things I think of when I wake up and one of the last before I fall asleep.  And I like it that way.  Maybe it's just that I'm learning to walk in my "ugly shoes," as that poem says.  

When someone older than a baby dies there are memories associated with that person.  Birthdays, milestones, trips to the beach, holiday memories and all of the day-to-day things that fill a life.  These are the memories that bereaved loved ones can remember.  Can reflect upon "the good times" when grief rolls over them.  And when someone is grieving a baby who never made it home from the hospital, there are none of those "good times."  Good times free of trauma and sadness.  So, when grief washes over me I search for ways to remember Ethan.  Just as others do when they are missing their parent, their sister, their grandparent.  I search for ways to remind myself that he was real.  Is a part of my family.  And how do I do that?    Well, some of the ways may actually lead my loved ones to the question I mentioned above.  "Is she healthy?"  Or has her grief stalled?  And as well-intentioned as those questions may be, this is how the bereaved may receive that - "when is she going to move on?"  And that's not going to leave anyone feeling better.

So to those who care enough to pay attention to how your loved one is grieving - thank you.  Thank you for not running for the hills, when their baby died.  Thanks for sticking around and paying attention.  Not everyone does that, so you get points right there.  And since you do love them, consider the possibility that your bereaved loved one can still be healthy and finding ways to keep their baby's memory alive.  Even if that makes others feel uncomfortable on occasion.  Even if it leaves you questioning if they are "healthy."  I say this gently, but genuinely...It's not about you, it's about them.  And their process towards healing through grief.  The through grief is vital here - if someone is working their grief, for as long as that takes them - perhaps forever in ways, that's OK.  And healthy even.  So sit back, take care of yourself along the way - so you don't get vicariously traumatized.  But hang in there, hang in with the one you love.  They need your presence more than ever.  And not so much your questioning of their grief.  Chances are, they are doing that for themselves already.

Here are some things that may have raised an eyebrow or two this past year-and-a-half.  See it through my eyes...

* If I sign Ethan's name to a holiday card, or a birthday card/gift, it's my way of including Ethan in our family.  It's not creepy to do so.  It's validating and inclusive to me.

* If I tell people my REAL number.  That I have 4 children when I am asked.  I'm honoring Ethan's existence.  His spirit.  Affirming that he was real.  I'm being truthful.  And maybe, such honesty, may inspire others to feel comfortable to speak about their losses.  I'm not stuck in my past or living in an unhealthy delusion.  I still have 4 kids - they just aren't all physically here with me.

* If I speak of what my hopes and dreams for Ethan were, beyond the first year after his death, I'm finding ways to honor and remember that an entire lifetime was lost when he died.

* If I drive around with an angel baby sticker on the back of my car, I'm finding an accurate way to represent Ethan in our family.  It's not creepy.  It's my truth.  And it helps the outside world recognize the atypical shape of my family.  A family just the same.

* If I hang photos of Ethan throughout my home, I'm providing opportunities for my family to speak of Ethan.  For those who enter our home to learn about him.  Opportunities for Ryan to learn that he is, in fact, a big brother.  What happened to our family was surreal, particularly for our living children who were all too young to grasp the concept of abstract thinking and death for that matter.  Integrating Ethan's photos allows the door to remain open for our living children to ask about what happened to him, when they are ready to process it in their own time.  To keep him a part of our family going forward in a healthy way.  It's not disturbing to me that all of my son's photos have lots of tubes and wires, so why should it be for others?  It's not disturbing that the few photos of him without such medical supports show him as his body is failing him, looking sick.  Look into his eyes - he was as alive as ever.  

* If I hang a stocking for Ethan each Christmas, it's one small way to outwardly secure his place in our family.

* If I look to include Ethan in day-to-day conversation, I'm searching for ways to include him.  Most parents get to celebrate what their children are doing daily, I'm just trying to find a way to celebrate my son as well.  I'm not focusing on the negative if I bring Ethan up.  His love will always be larger than his death.  If you feel uncomfortable around death, try not to let it influence how you view someone's journey through grief and healing.  Maybe some discomfort could be lessened by watching how brave the bereaved are.

Everyone's grief is individual to them.  The grief therapist in me assures you that research says there is no set time frame to "wrap it up and move on."  The bereaved mother in me knows that the stages of grief aren't necessarily experienced in a neat, linear fashion.  Be patient with the bereaved.  They are doing the best they can.

Fallout

I have a few journal entries started, not yet finished, that aren't me being a grump or a downer.  I swear, I'm not all that unhappy.  It just happens that when something hurtful happens to me it fuels me to blog, to journal it out.  And the good times present with less urgency for me to do so.  But it doesn't mean they are less important, or less frequent.  I assure you.  As an aside, I was playing around (my first mistake there) with the settings on my blog the other day.  And now these silly ads are on my blog and I cannot figure out how to remove them successfully.  Just X out of them for now, bear with me.  I've got skills, what can I say.  With that said, here's one of those entries that presses with urgency on my heart.

There's this concept.  One where tragedy presents itself and shines a light on those around you.  This light highlights the beauty in so many of them.  And those beautiful relationships, whether old or new, are the ones you hold onto during the storm.  Those are the ones that assure you that you aren't a giant turd the world wants to avoid because your son died and you grieve openly.  I've written about these beautiful relationships before in What Love Is, and intend to write another post about them soon.

Then there is the other side.  There is the friend fallout.  I've lost 3 friends, close ones at that, since Ethan died.  My son dying sucks.  A lot.  Beyond description.  The nuances are countless.  But the idea of losing relationships that have brought me such laughter, love and support sucks too.  And I fought for these friendships too.  Relationships are a two-way street.  I see my role in them.  I get that I'm a loaded friend right now.  That I was even more so last year.  But the truth is, if you can only be a fair weather friend what good is that?  Perhaps such relationships were more acquaintances all along, guised as a true friendship.  And when that light shined on them, the truth came out.  Not saying that they are bad people, but they are not people who I can call my friends right now.  So tonight I am sad.  Sad that I've lost friends.  And that I think they were lost because they couldn't handle all of me, bereaved mom included.

The first friend I lost sent me a letter, intentionally having it delivered on the first anniversary of Ethan's death.  The letter was quite nice, and then it told me that the sender was pregnant again.  And could I hopefully come around and feel comfortable enough to call her again so she can tell me over the phone.  As she wanted to "tell the world."  How nice for you...  Now go away, it's the first anniversary of the hardest day of my life.

The second friend I lost was someone who called me family.  And vice versa.  During the Christmas week she mailed me a letter that said the following: "We hope and pray you are soon able to find Peace with Ethan's life everlasting and trust in the Lord that Ethan is not on Appledore.  We hope - for the Love of your understanding husband and your three beautiful living children - that you can do this soon - as they too must be suffering by your continued great sadness and continued grief..."  Ah - she hasn't been in touch with me since I moved a year ago.  By her choice.  So she cannot possibly know what my grief looks like right now.  Does she think I'm still a puddle on the floor?  Well, I'm not.  Even if I were, it's none of her business.  And to say that my family is suffering from my grief - that's bullshit.  They aren't suffering from their son and brother being included in the day to day discussions of our family.  It's not unhealthy to say that Ethan is part of our family.  I'm not the one causing suffering.  Any suffering that is experienced is caused by his death.  And just because I believe his spirit lives on after his death, it doesn't erase the grief here in the physical world.  And lastly, I know he's not on fucking Appledore Island.  You don't have to remind me that my son is not hiding away in some other part of the physical world.  And it's not wrong of me to desire to visit, one day, the place we spread his ashes.  

The third friend I lost was just today.  The history here is that this friend and I were quite close.  I supported her while her son had multiple surgeries over the course of a year.  The same year I first grieved Ethan.  And she supported me.  It was filled with lots of love, laughs, swears and tears.  But then things just stopped.  Little reciprocal communication from her.  She had not returned any calls, messages, texts, etc. for a few months.  I had asked her to do so - thinking it's reasonable to have some effort made, to no avail.  So, I chose to "unfriend" her on facebook.  (I had prayed for a long time about focusing my energies on relationships that were going to offer healing.)  For a few months she never called, emailed or messaged me to ask why I did so.  Though she did notice I had unfriended her right away - evidenced by a simple sent friend request right after.  To which I declined.  And then today, she chose to reach out.  But not with intentions to see what happened.  To see if we could salvage the friendship.  Instead she told me she was pregnant again.  How nice for her...and now it's that same old trigger.  If I have set boundaries why does she think I care for them to be disregarded only to share news that remains my largest grief trigger?  Which she acknowledged in the message.  We have few mutual friends, and those who are, know not to talk with me about other's pregnancies and babies yet.  We no longer live near each other, and are not in each others' lives.  I could have very well be ignorant to her pregnancy (though I am happy for her) and that would have been much gentler on me.  More things were said, few of which felt good.  It's sad though...  I'm pretty sure she still loves me, and I know I still love her.  But some relationships just aren't a healthy focus for my energy.  

With some distance I can see the friend fallout.  As if a baby dying wasn't sad enough, now friendships end as well.  It is what it is.  Trying to forgive discretions while moving forward.  Some days that's hard for me though.  But I'll keep trying.