Monday, March 17, 2014

Huge News!!! Breaking the Silence!!!

HUGE NEWS! Chills ran up and down my spine today when I read a message from Sean that his film Return to Zero is going to be available to EVERYBODY via Lifetime!!!
I am so incredibly proud of Sean Hanish for creating this incredible film and of all the men and women in the loss community who fought for this film to be shown. I am honored to have been a local leader to collect pledges and spread awareness of this film, and I am SO thrilled to announce this film's release!
 Please spread the word and tune in May 17th at 8 p.m. to Lifetime.  Grab a box of tissues first.  This is the first EVER film to break the silence around the "taboo" topic of late term stillbirth. PLEASE WATCH! This is a much-needed film. And don't forget to keep an eye out for Elias's name in the credits "in loving memory". 
Mark your calendars!!!
And if you are outside of the U.S. please read the article to catch the viewing time and availability per your location.

This is so fantastic!

Saturday, March 8, 2014

Unapologetically Authentically Me.

It seems that in the grief community, there are a lot of expressions going around about there "not being one right way" of grieving.  That you have to do "what's best for you at that time" without worry about others' feelings.  Because, well, losing a child kills a piece of you, if it doesn't kill you completely, and some would argue that the YOU is actually gone at the point of child loss.  And a new you emerges.  So any way you slice it, well, the grieving are in "survival mode".  So not much room for concern over whether others understand it or not.

I for one still am all about spreading awareness.  And so I do continue to share things on Facebook, such as in October for Pregnancy and Infant Loss Awareness Month.  I participated in Carly Marie's capture your grief project.  It was incredible and inspiring.  I received so much feedback from people that I never expected.    People shared with me their own losses.  Babies they miscarried.  Siblings that had died before delivery.  Siblings that had died during infancy that hadn't been previously mentioned.  Infertility woes.
Cards were sent in the mail, letters written, ornaments purchased in Elias's memory and given to me with little notes about how my words "inspired" and "helped" others.
I welcomed all of this sharing with open arms and felt so much comfort that my participation in the project helped others to find their own voices and sense of community.

Family members who had never said anything to me about Elias suddenly opened up and told me that they felt horrible about our loss, that they were truly sorry, that they were inspired by my words.  A cousin whose brother was stillborn really opened up to me about growing up knowing he had lost his brother and his feelings about that.  He told me his mother never openly grieved this loss, that it still impacted her forty years later, that in those days they shuffled the baby out of the room without a word.  He said he really admired my strength in being vulnerable enough to share.  This is a cousin I've rarely spoken to, and yet because of this Facebook project, we had a really meaningful conversation, opening a dialogue about a topic so vital to me.

Then came the phone call to my husband.  The one where someone who will remain nameless said that due to my Facebook posts in October, they were concerned with my mental health.

This person is not even ON Facebook.  So they heard this through someone else obviously.  This someone else didn't even understand the concept of Carly Marie's project or grief work or its purpose.  So basically this person just thought I was suddenly spiraling out of control and felt compelled to call someone who then called my husband.  They saw my daily posts and somehow interpreted them as evidence of madness, of insanity, of self-indulgent pity-seeking crazy catlady grief.

And I swear, it takes fifteen positive comments to make up for one negative one. 

The scales just don't seem balanced.

Why do relationships have to be strained on account of my losing my son? My losing my son is not a reflection of ME.  It's not my identity.  But losing him IS PART of me, just as each of my children are a PART of me.  And Elias's legacy through me is to help others who have suffered loss whenever I can.

Participating in Carly Marie's project was magical.  It was beautiful, "healing", and inspiring. 
I felt I reconnected with my grief in such a healthy way.  (I say "reconnected" because I totally "disconnected" during my rainbow pregnancy.  I couldn't handle grieving AND carrying a subsequent child...)  So for me, it was HEALTHY to do a daily post as a part of this greater whole, this moving project that promoted awareness, sharing, and grieving in a constructive manner.  It helped me feel less isolated and re-established my place in this incredible global group of people who have been dealt a horrible hand yet have made the most of it through art, writing, photography, and community.

But I guess that's "mentally unstable".

Just lock me in a padded room and toss the key.

It's been a few months since this phone call was made.  But it still bothers me when I think about it.  I really resent that my husband had to explain this project to this person, to JUSTIFY my behavior to them, to say ANYTHING to them about WHY I do what I do.

It's not something that he should have had to do.  It's not something he should have FELT like he had to do.

And yet, if he hadn't gone to bat for me and explained it all, I would have been angry about that, too.

It's just a no win situation.  I feel like no matter what I do, it's wrong. 

I guess this just proves that Carly Marie's project NEEDS TO EXIST that much more - because there is SO MUCH MISINFORMATION in our society about grief and especially stillbirth / infant loss. 

I know some might read this post (if anyone still reads, which I don't blame them if they don't because I rarely blog) and think, "Yup, that's why I don't have a Facebook!"

Take from this what you will.  I stand by my decision to be on Facebook 100%.  I feel I have maintained some very strong and amazing connections with women (and a few men) from the loss community, some who have "moved on" from blogging yet have remained on Facebook.  It's a place where we can maintain connections and share about all aspects of our lives, not just our losses.  It's a place where I can share ALL of my children and different aspects of my life and identity. 

And yes, during October, you can expect several posts, if not daily posts, about pregnancy and infant loss.
I stand by that as well.

I have deleted over 300 people this past year though and apparently need to do more "friendscaping", because there are some really ignorant people out there.

Then again, maybe those are the very people who NEED to read the posts I share.

I keep on keepin' on.  In the name of Elias.  In the name of awareness. 

And for the sake of being authentically myself, unapologetically.

Monday, January 27, 2014

I Ache for Balance.

Well, whenever I decide to just let the blog go for a while, it always seems something comes up and I need to write.  And I'd rather do it here than in some notebook thrown in a drawer somewhere.  It feels safer here, which is really dumb, because this is the internet.  But there's an intimacy to blogging I can't quite articulate.

So yeah, here I am.  This is what this space is for and why I haven't shut it down quite yet.  I know some people who keep blogs open even if they only post once a year so who knows, I have to stop pressuring myself to make a decision about it and just blog when I feel the need without concern with how often or how seldom that turns out to be.

Decided to clean my room.  It needed done.  Like, really needed done.

My life hasn't been "normal" ever since my first pregnancy back in 2009 that I miscarried.  Ever since that trauma, it's been a roller coaster of TTC, high risk pregnancy, stillbirth, raising a surviving twin, grieving the babies I lost, trying to piece my life back together, subsequent pregnancy after loss which carries its own bag of crazy, and now this past year adjusting to a major job switch and having a new baby at home / raising a toddler / grieving my first boy. 

*wipes brow*

The dust is finally, finally, finally KIND OF starting to "settle".

Of course that doesn't mean much, does it?  Typing it out like that, it makes perfect sense to me and almost feels...Good?  But that doesn't mean I just picked up this shattered life and pushed the pieces back together like some haphazard puzzle.

It just, it is what it is.  Our family has been redefined by our rainbow, obviously, but we still miss our first son.  Some days more than others.  It ebbs and flows. 
But I haven't had an ugly cry for a while.

I'm starting to kind of pin some recipes on Pinterest and even watch some mindless garbage on TV and laugh about it, all good indicators of progress with my grief.  So I figure, I gotta get back on the cleaning thing.  Especially with two kids at home, I need to be a better role model.

I figured that I might come across a thing or two that would trigger my grief and/or flashbacks while cleaning, which is why I probably put it off for so long. (Although my husband mistakenly believes I'm just lazy.  He can be really bad at connecting dots.)

I did come across some tokens of remembrance.  Most of the items were cards and little pins and trinkets people have given me over the past two years, stuff that should have gone into Elias's remembrance bin but never made it there for one reason or another.  Items from the first year of ugly raw grief had been put away but nothing after that point basically.

So there they were, and I was okay with that.  I glanced briefly at the items but mostly just felt like, "Yup, there's that thing.  And that thing.  Gotta start a pile for the box."

Then I saw the papers.

Charts.  And charts.  And charts.

With numbers, graphs, and way too much information.

Where I used to track my basal body temperature and any signs that I thought might indicate a pregnancy.  Dating back to my pregnancy with the twins. 

And that pretty much gutted me.

I saw the "PREGNANT!" scrawled out on one of the charts, and the subsequent month where I continued charting simply because I had suffered a previous miscarriage and knew that dropping temps could indicate something being off.

Ever the cautious one.

Ever the cautious one, for thirty seven achingly long weeks, only to lose my son anyway, because those are the cards the Universe dealt me.

Three years out, I realize the Universe wasn't targeting me, so maybe I shouldn't sound so angry at It.  But being angry at Statistics doesn't feel right either.  I suppose I have worked through most of my anger, so much that I don't need a target for it anymore, but those papers.  Those stupid meticulously kept records of my body's rhythms.  They seemed to mock me tonight.  Seemed to be laughing at me and my ever believing that anything could possibly be truly within my control.

I just tried so damn hard.

I tried harder at having those babies than I've ever tried at anything.

Bringing my twins home meant more to me than anything in the world.  To this day, losing my first born son feels to me like the biggest failure of my life.  I wonder if I will ever not feel that way.

Mentally I know it's not my *fault*.  But because fetal-maternal hemorrhage is so rare and not very well understood, it's extremely difficult for me to put to rest some of those questions, doubts, and feelings of guilt that still, to this day, creep in.

And I just didn't really need to see those meticulously kept basal body temperature charts.

Don't get me wrong, I am well aware that I am lucky to have been able to conceive on my own.  Well aware.  But those papers were painful reminders of my former self, the self that took pregnancy on like it was simply going to be an exciting journey ending in pure joy.

I don't like to be a jealous person.  But sometimes I am so damn jealous of people who don't know this pain.  People who get to take those charts and put them in a scrapbook lovingly, giggling at the silly notations about feeling gassy or moody or whatever other clues they had to their pregnancy in advance. 

I will never ever understand why some people get to skate through pregnancy, childbirth, and mothering their children without any losses while others endure multiple losses and traumas. 

I miss my son so damn much. 
I miss what could have been.
I'm sorry for everything I could have been to him.  I ache for all that we lost, the years we should have been able to spend loving one another.  The bond he may have had with his sister.  The experience of raising twins.

I guess I am far enough out from having my rainbow that I am allowing myself a bit of a grief resurgence of sorts.  I don't know grief's "place".  I hate how coming across some pieces of paper sends me to ugly cry territory. 

I ache for balance.  And, dare I say, integration.

Tuesday, January 7, 2014

His Third Birthday: Acts of Kindness

I have to be completely honest.  This was the gentlest birthday so far of them all.  I'm not sure if it's because this is year three, which logically should be easier than years one and two, or if it was more circumstantial.

Evy and Will have had a rough time with getting sick a lot this winter season.  And they were sick AGAIN the week of Evy and Elias's birthday.  So I was mostly just worried so much about the kiddos that I didn't really have time to dwell, relive things in my mind, or pore over Elias's photos like I perhaps would have otherwise.

The love I feel for my children may be equal, but the time I devote to them certainly isn't, and that's just life.  The living are much more demanding than the dead, after all.

Once the children were feeling better (had to reschedule Evy's party and all), it was my turn to get sick.  And sick I was.  Sinus and ear infections, tonsillitis, and the flu.  All at once.  On Evy and Elias's third birthday.  At the time I felt like the Universe was just hating on me again (oh, the ego in such thoughts!).  Then of course I came to my senses and realized people get sick.  And it was simply my turn.

To be fair, we did things in remembrance the day before, on December 8th, because as a family we've decided he should have his own day and Evy her own day as well.  This may not make sense to anyone else, but I don't care, because even if they were both here I would want them to both feel special, as individuals, and I would downplay the twin thing surely.  The happy and the sad have their places, and they intermingle with one another every day, but compartmentalization still helps us feel like we are more properly celebrating Evy and grieving Elias and not "cheating" either of them of those things.

So on Dec. 8th we purchased a toy to donate to Toys for Tots in Elias's honor.  We decorated a tree with ornaments given to us in his memory.  My husband gave me a gorgeous Precious Moments figurine.  We went to the remembrance park where his name and butterfly are engraved, and we said a prayer, letting three baby blue balloons go into the sky for our first born son who would (should?) be turning three.

It felt about as "right" as any of those things can feel, because none of them ever really feels "right".  Your child dying never feels "right".  But what helped was knowing we were honoring him, that he still had his day. 

The best part of Elias's day was that, for the first time, I decided to hold an "Act of Kindness" Facebook event in Elias's memory.  I almost didn't want to mention it here, because words fail to express how incredible it really was.  There's nothing I can type here to communicate that to anyone who might read this blog. 
Here are just a few of the countless things people through Facebook did in honor of Elias on or before his birthday:
Cash donations were made to St. Jude’s, toys were donated to children’s hospitals and Toys for Tots, gifts and cash donations were given to women in shelters, jewelry was purchased and given to newly bereaved mothers,  students “adopted” two needy children to shop for for Christmas, elderly were visited at nursing homes, food banks were donated to, lunches and goodies were made for children at school, money was given toward grocery bills for elderly, donations to March of Dimes were made, a family with a NICU baby was sponsored, and cards were made and given to hospice patients and families.
I wasn't sure if anyone outside of the loss community would participate, but they did.  And it was wonderful.  It brought my heart so much peace to know that good was being done in Elias's name, that he would never be forgotten, that his legacy would be so much more than pain and sadness in the hearts of those who loved him.  I don't have pictures of it all obviously, but here are a few pictures that were shared on his event page that touched my heart:


And his ornament this year:

Loving you for three years, baby boy.  For the son who taught us the true meaning of unconditional love.

Saturday, November 30, 2013

Nine more days.

In nine more days, Elias will have been gone for three years.  I don't even know what to say.  Most of the world thinks I should "be over it" already.  But what I've found is that there are a handful of really incredible people, loss AND non-loss people, who fully support my continued need to remember and honor my first born son.  The rest?  Well, there's just no room for them in my life anymore.  I've filled it with supportive, loving, and inspirational people.

I miss this space - blogging and keeping up with others' blogs.  But some of my favorite loss bloggers have gone on to shutting their blogs down as their journeys have evolved.  (Or they aren't blogging about loss anymore but about rainbow babies or crafts or recipes, etc. etc.) 
I see myself following suit eventually (not blogging about rainbows and crafts but just shutting it down, as I share plenty on other social media outlets anyway!). 

But I do have to say I will miss some of the connections I've made here where people aren't on Facebook for me to stay connected with.

At any rate.

I don't think I'm ready to process three years yet. 

How do I get there?

I've been so slammed at work and with trying to keep everything in balance between family, kids, marriage, friendships, hobbies.  I just hope Elias knows how much I love him, that even if I'm not here in this space writing and reading that I AM thinking about him, every single day. 

My forever baby.

My first born son.

I still want to find more to do in his honor.

Wednesday, October 30, 2013

Day 30: Growth

After experiencing such unimaginable heartbreak and trauma, I feel that I more intensely feel sadness. I feel more connected to the pain of the world. I've felt for others and have been genuinely moved by their stories in ways I never imagined would be possible. Inversely, I also feel like I am able to more fully experience joy, laughter, and fulfillment in ways I never was able to before this grief broke me wide open. It's like there's this emotional spectrum, and now that I've traveled so far down the dark end, I'm able to travel just as far in the direction of lightness.

Tuesday, October 29, 2013

Day 29: Healing

I've been at this grief thing for nearly three years, and it's a journey that I don't think ever completely goes away. However, that doesn't mean that healing doesn't exist. I am still discovering what is most healing for me along this path. My incredible children have been so healing for me in many ways. My family, my friends, my career, they've all been healing in different ways. Photography has been healing. Writing has been healing. Reading others' stories, one by one, has been healing. I can't possibly capture all of these things with a photograph, so I'm sharing a collection of cards, jewelry, ornaments, and statues I've received from women in this community (mostly through the mail but some given in person). Not everything I've been given by others in the community fits on this shelf (so if you've sent me a gift you don't see here, please don't be offended!), but these tokens of friendship and support remind me of what has been most healing for me.