Why We Need Awareness

October is Pregnancy and Infant Loss Awareness Month.   You know this because you know me.  You know this because I am vocal about loss and grief.   Because you are my friend, you know that children lost to miscarriage or stillbirth are wanted and loved and missed daily.   You know that grief never fades, it only changes, and that pain can be sharp or dull depending on the day.   You know that talking about loss is important, as is sharing personal stories, images, and emotions.   You know that a mother is a mother regardless of whether her children are in her arms or not.  You know all these things because you are educated, whether through me, someone else, or yourself.   I want you to know you are not the norm.  

Recently, a friend of mine shared a beautiful post about her daughter in response to this year's Capture Your Grief.   One of her friends shared it on her own timeline.  And then this happend...

                                     

Infant Loss is too sad and personal to talk about.  It is worthy of prayers, but not of a month of awareness.  Because having breast cancer isn't personal at all.  Because women are so excited to talk about their battle with a deadly disease.   Both are important, but most people don't understand why.     To be fair, my friend constructed a fantastic reply and this person apologized.  However, you have to think about why that happened   She apologized because she was educated.   She learned why October is not just for breast cancer.  She learned why infant loss is important to talk about, why mothers want to share their children, why a personal journey can also have a public platform.  Awareness!

If you asked any adult in our country what the pink ribbon stands for, odds are pretty good they would be able to tell you breast cancer.   They could probably also tell you ways to prevent breast cancer.  They may even be able to name a few women in their lives who have been affected.  It's highly possible their office had a "Dress Down for Breast Cancer" day.  Breast cancer awareness has the power it has because it is comprised of an active community that people aren't afraid to be a part of.  The same cannot be said for Infant Loss.   When the profile pic app became available last week and my Facebook feed became a sweeping sea of pink and blue, I noticed many of my friends were getting comments like "What's the pink and the blue for?"  and "Pink is for breast cancer.  What's up with the blue?"    People had no idea.  Because it's not talked about enough.   It's swept under the rug.  Mothers are told to "get over it", to "stop bringing everyone down", to "just be happy for others."  Who says that to a woman with breast cancer?  Monsters, maybe.   Fellow humans, though, tell her she's strong and a fighter.  When she's having a hard day, they rally behind her.   Inspirational facebook posts go viral of women who have tattooed their chests or who are fighting for their lives and not giving up hope.  (They are beautiful and wonderful, indeed.  I am in no way knocking breast cancer awareness.  I am just pointing out the differences in the movements.)  The most recent Facebook post that went viral outside of the loss community was a heartfelt essay written by a mother who had recently lost her daughter.  The post included very moving photos by Now I Lay Me Down to Sleep.   I read multiple comments on multiple posts where these pictures were called "repugnant", "disgusting", and "gross".  Where people said the story was "too sad to read" and that she should keep things like this to herself.  The ignorance made my blood boil.  And, yes, while I know internet trolls exist (remember the guy who said babies should be burned in the trash instead of placed in a cuddle cot?), most people are just uneducated.    The span of awareness hasn't reached them yet.  And there's only so many internet comments I can respond to.   We need MORE.  We need the month of October.  We need advocates outside of our community to stand up for us and say, "Hey...this is not right."  Or, "Hey, this happens more than you think."   Or, "Hey, give her a break.  She's having a tough day missing her kid."   

My friend's post got me thinking about just how much people don't know about Pregnancy and Infant Loss.  To help illustrate how uneducated the general population is about our not-so-tiny community, I asked the ladies in my loss group to provide a few memes that they felt were hurtful, ignorant, trivializing of loss, or just plain horrible.  Here is what they shared:  

Please be advised, some of these have graphic images or language.

(This one translates to:  When you're in the uterus and you listen that your parents are naming you Brayan)

Look, I can take a joke.   I am sacrastic and witty.  I appreciate dark humor every now and then. The issue isn't whether or not these are just jokes.  I know they are.   The point is not whether or not they are offensive, the point is that there are people who don't understand WHY.   

In my two and a half years in the infant loss community, I have been witness to countless heartless or thoughtless comments or jokes.   As I have found my place within this community, and have become less crumpled in grief, I am able to take most of them far less personally than I may have in the beginning.  However, many of them still hurt and offend.  Many of them cut deeply.  Often, when loss moms cry in outrage over some of these things, they are met with "They don't mean anything by it."  or, "Geez, it's just a joke." or "I can't help it if everything offends you.  It's not my job to protect your feelings."    We live in a world where no one is ever allowed to be upset about anything because everyone is upset about something.   How does that even make sense?   When did the attitude, "I don't care if you're offended" become the norm...and why?   Why does no one care if they cause another person pain?   If someone says, "Hey, that hurt my feelings," why is it commonplace to respond with "Oh well...it's not my fault you're easily offended."   When I say something that is hurtful to another person, I feel bad.  I apologize.  I try not to do it again.   What's that saying... "when we know better, we do better"

                                    

October is Pregnancy Infant Loss Awareness month.  It is just as important as any other cause attached to this month (and there are many).   We need this month of awareness because there are still people who aren't aware - and our community grows by over 100 women each day.  Women who will have to face a world that no longer understands them.    This is a problem.   Help me fix it.   Be an advocate.   Share our stories - share your story.   Correct misconceptions.   Spread awareness.   #gopinkandblue

My Empty Space

I see you running through the corridors of my mind. Quick flashes of a dark pigtail turning the corner, a swish of a green dress, an infectious giggle that echoes and fades into the emptiness before it registers. You're both there and not there. I've learned the hard way not to chase you. You're too fast, unencumbered by body. I can't keep up and I often just end up missing you more. My darling girl who only grows inside my mind, I can merely imagine who you would be. A spunky toddler quick on her feet with a wide, toothy smile and hair as sleek as a raven's wing. I try to imagine more, but every missing piece serves only to slice my heart. I want to give you a life full of detail, but I can't. You are a ghost running through the abandoned places of my mind. You are my empty space.
Loving you is like trying to hold smoke. I feel your heat in the absence of fire. You fill my lungs. And I am sometimes so filled with you, I can't breathe. My hands are rough and gritty from soot, but you are not here. Only remnants of you. Only flashes of what should have been - flickering through my thoughts like a broken filmstrip. I hear you whisper my name and I lean in, searching my brain for traces of you. For your entire life, we shared the same space in the universe, and sometimes my heart forgets to beat without you. And in that skip, that jump of irregularity, I feel you. That is your home - that pause between beats - miniscule and infinite at the same time. That gap where you grow up in flickers and flashes. You are my empty space.
You are the hesitation between the question "Is she your first?" and my response. You are my moment of readjustment when I see two sisters walking together, the brief shimmering of a tear I don't let go. You are the seconds of darkness before I fall asleep and the fuzzy grayness of the world as I am waking up. You are the rise between inhale and exhale, and the dip between the reverse. You are the moments before the moments. Always and forever. You are my empty space.

St Augustine

Our nation's oldest city holds a special place in my heart.  When Mike and I first started dating, we visited often.   He loves the history.    I love Luli's Cupcakes...and sure, the history too.  We got engaged in St Augustine.  On top of the lighthouse at moonrise on the Winter Solstice, thankyouverymuch.   We took our engagement photos around the city.   We got married in a garden across the street from the Oldest House.   It's come to be a city that represents who we are as a couple.   

With Mike working nights lately and Piper taking up a great deal of our free time, there hasn't been a lot of time for Us.   Because of this, and unbeknownst to the other, both of us planned a trip to St. Augustine.  I gave Mike a night in the Bed and Breakfast we stayed in when we got engaged for Father's Day, and he gave me a weekend there during the 450th Birthday Celebration in September for our anniversary.   Both of us recognized we needed some couple time and both of us had a similar solution.   I think that's kind of hilarious.  

I tried to make it a surprise.   So he wouldn't make any plans, he knew we were going somewhere, but not the exact location.  I arranged for my mom to come that afternoon to watch Piper for the night, stashed an overnight bag in the car, and headed out when he was up for the day.  Of course, as soon as I veered onto 95 North, he knew exactly where we were going.   

My trip for Mike was as close as I could get it to the trip we took when he proposed.  I stayed in the same Bed and Breakfast and we went to the Floridian for dinner.  Granted, we always go to the Floridian, but whatever...it's delicious!   I wanted to try to book a trip to the Lighthouse, but it so happened they didn't have any night time events going on and MIke only really has about 1 1/2 days off because of how night shift is scheduled.  I also wanted to keep our options open because his schedule doesn't always allow him to be home right after his shift and I wasn't sure how much sleep he would have received that day.    

That night, after a delicious dinner of shrimp and grits for me and steak and potatoes for Mike, we walked through the cobblestoned streets, holding hands and people watching.  The summer air was thick and heavy with warmth, and the walking ghost tours were just gearing up for the night.   We had no plans and nowhere to be.   It was then that I realized just why I needed to come back to this city.  Why I needed to plan a trip here as opposed to date night anywhere else.  

St. Augustine represents who we were.  Before life turned cruel.  Before we knew what was in store for us.   When I think of St. Augustine, I think of the carefree couple getting engaged on top of a lighthouse, bundled up in warm coats for the Winter Solstice.   I think of the soft, green shirt I wore for our engagement shoots.  The "Save the Date" sign I made. The cannon we sat on.  The smiles we gave each other.   I think of our wedding day.  Seeing his face as I turned the corner of the garden to walk down the aisle.  Binding our hands with ribbons.  Dancing the night away with my friends, my family, and my love.   I think of the me I used to be...the "we" we used to be.   I miss her.  I miss them.   

Everyone's life changes.   Everyone goes through stages where parts of their own life seem like another timeline completely.   Everyone used to be someone they might never be again.   But, I think there is something in child loss that makes that line more pronounced, more definite, and more severe. Mike and I have talked often about how different we are than we were.   We are lucky we haven't let those changes divide us.   

As I walked through the night with my husband, I told him I knew we would never be those people again.  We are so far removed from them, they often seem like strangers.  But, every so often, we can visit them.  We can remind ourselves of a different time, when our hearts were whole and our hopes intact.   That is what St. Augustine is to me.   It is a reminder of the light and innocence I used to know, of days before heartbreak.   I think everyone needs a place like that.  A place where you can go to feel a little like who you used to be.   A place that makes you think of joy and love and happiness, untarnished by life's experiences.   

No matter where life takes us, we will always find our way back to the Ancient City.   To remember what it felt like to not be so heavy.    To reconnect as a couple in love, and to remind ourselves that we are more than a parent, more than a bereaved parent, more than a griever and a diaper changer and a trash taker-outer.  (That's a word, I swear)   We are so much more than life has pigeon-holed us to be.  All of us are.  

Sometimes, I just need to go back and remember the person I used to be.  To say hello.  To tell her I miss her.   To let her know I'm still doing the best I can.

The city of St. Augustine is full of ghosts, including mine.