Lost in a Legacy

Yesterday, I presented at the First Coast Neonatal Symposium.   This was my third time speaking in front of a group regarding stillbirth education.   Each time I speak, the presentation goes well.  People pay attention.  No one is on their phone.  I don't fumble for words.  I just talk about each slide and show the video at the end.   I have received a standing ovation every time.   There are always people who approach me afterwards to thank me for speaking and to tell me how important this message is.  I love feeling like I made a difference.   There's a tiny little bit of healing that takes place on these presentation days - a little piece of my heart's gaping wound that seals with some scar tissue. 

But, the few days leading up to the presentations and the mornings of are an emotional mess.  I don't really have difficulty speaking in front of large crowds - that's actually not a big deal for me. As a teacher, I have a lot of experience talking to people in big groups.   I do get nervous that I'm presenting in front of medical professionals.   I have no background in medicine and I feel very out of place trying to tell this community how to do their job.   I realize that my perspective and experience are what make my presentation so important, but I still struggle with feeling worthy of being listened to.  I am guessing that will come with time and more presentations.   As I do this more and get more positive feedback, I will probably start feeling more confident in the importance and validity of my message. 

What I don't think will ever get better, though, is how my heart feels as I prepare to present.  The hardest part of these presentations is the reason why I am doing them.   I organize my slides and I think of those days in the hospital.  I think of all the things I was able to do and all the things I missed out on.   I think of the living baby I didn't get to have and the silent one I didn't get to bring home.  I write out notes on what I am going to say, and I miss her so much it physically hurts.  Honest to goodness pain in my chest - an empty ache that radiates from the hollows of my heart.   The morning of the last presentation, I was given breakfast before the symposium began.   I sat there, alone at a big round table for ten, trying to will my hand to bring the fork to my mouth.   I couldn't do it.  The few bites I got in sat in my stomach like rocks.   I could only think about how broken I felt.  How absolutely empty.   I was about to speak about stillbirth because my daughter was stillborn.  The death of my first daughter brought me to that point in my life.  It took everything in me to keep the tears clouding my vision from running down my cheeks.  It took all of my strength to hold myself together and not crumble to pieces right there in Banquet Hall 2.   As much as I love to bring a voice to our children, it takes a lot out of me.

It is hard feeling proud of something you do in direct relation to the death of your child.  It's a really tough concept to come to terms with.  Every speech, every email, every Facebook message related to the Letter to My Doctor Snowball, is both a stab and a salve, a paradox of pain and passion.  People often tell me how strong I am to do this.  To write about this journey.  To speak about it so openly and publicly.   And, maybe I am.  But, it sure doesn't feel like it sometimes.  Putting myself out there like I do, I just feel cracked open.  An egg on the sidewalk trying to ooze myself back into my shattered shell while everyone stands around and watches.  

The reality of loss is draining.   I often feel like the only way I can do her justice is to give this blog and the loss community everything I have, but then I have nothing left for anyone else.  Today is Piper's birthday.   I have nothing planned because I spent the last week and a half organizing myself for my presentation yesterday.   We will have her birthday party Saturday, but today is just another day.   She's only two - she doesn't know.   But, I just couldn't get it together because the symposium took everything I had.   It's hard living in two worlds - shouting for my child who can't speak for herself while still giving my full love and attention to the daughter here beside me.  The middle ground is thin and shaky and so hard to balance, and I am really tired.   

I don't really have a point anymore to this post other than to just tell you that what I am doing is equal parts rewarding and painful.  I guess I just wanted you to know.

       

           

We are ALL Mothers

Mother's Day is right around the corner.   Three years ago was my first Mother's Day.   Two years ago was the first Mother's Day most people actually recognized me as a mother.  Around this time every year, articles and blog posts circle the internet regarding honoring "all types" of mothers.   Posts about single mothers, kids with two mothers, mothers who are veterans, mothers with disabilities, adoptive mothers, foster mothers...basically, all types of mothers are talked about and celebrated.   Except one.   The Heartbroken Mother.  Of course, people like Carly Marie, Angela Miller, and Lindsey Henke write beautiful articles celebrating mothers who have lost their children.  They are moving and inspiring and we share them with the members of our community in solidarity.  Right now, the "I See You" movement is swirling through our ranks, lifting us up and helping us feel a little less broken.  We even have an International Bereaved Mother's Day the first Sunday in May, which began in 2010.  All of us work so hard to heal, to feel like a whole person.   We strengthen the bonds in our community with ways to recognize the mother in all of us, regardless of whether our children are in our arms or in our heart.   To a Heartbroken Mother, being recognized as a mother of all of her children is so important.   The Loss Community does a stellar job in doing that.   The Mainstream Community?   Not so much. 

All of the things I just mentioned only exist in the Loss Community.   I didn't know about any of these things before I lost Kenley.   When I became a Heartbroken Mother, an entire world of sorrow and support opened up to me.   And while I am beyond grateful for the undeniable validation and voice this community gives me, I still wish this could translate into the world beyond it. 

I have the luxury of a Rainbow.   Because she was born alive, I get wished Happy Mother's Day.   I am included in the celebration of motherhood, even though it will always be bittersweet.  But, what about those mothers who are still waiting for their Rainbow?   Or those who never get one?   Are they not Mothers?  I know too many women who are completely ignored on the second Sunday in May year after year.   Too many women who never get wished Happy Mother's Day because they have no living children.   They want someone to remember their babies....and usually it's another Heartbroken Mother.   Every once in a while, it's a kindhearted friend or family member, but more often than not their only recognition is within our own community, and while that doesn't make it less meaningful, it still stings.   

International Bereaved Mother's Day is great.   It's a wonderful way to include the mothers who don't have all of their children with them.  It's a way for them to have a day of healing and recognition.  But, it's not the same.   We don't always want to be "Bereaved".   We don't always want to have to turn to the Loss Community to feel like our children matter - that we matter as a mother.   It shouldn't be too much to ask to be included in a standard holiday for mothers when we ARE mothers.   

This Mother's Day, take a minute to think about the mothers who may be living that day in silence - who are spending that day hyper-focused on what should be happening but isn't.   Take a minute to recognize that mother for who she is.   Remember her children with her.  Wish her a Happy Mother's Day.   Here....I'll even give you the words:

"Happy Mother's Day to a wonderful mother.  I am thinking of you and your children today."

Second to the fear that our child will be forgotten is the fear that our motherhood will be fragmented to only include our living children, or will be ignored altogether. 

Regardless of Rainbows, every mother deserves to be recognized.  Every mother deserves to be included in Mother's Day.   It's hard work living with pieces of your heart scattered across the stars. 

Rainbow Road

If your formative years were in the later part of the last millennium, you are familiar with Mario Kart, a video game that pits players against each other on a split screen as they race their character's car over a racetrack.  While there are several tracks, often racing over lava or under water, the final course of most games is Rainbow Road.  Typically, Rainbow Roads appear beneath a starry sky and contain few, if any, railings.   Because of this, and other obstacles unique to the course, Rainbow Road is often considered one of the most difficult tracks.   It's also usually one of the longest.   Rainbow Road is a hard course to master.

Someone watching a player nagivate Rainbow Road may think, "Oh...that doesn't look that hard. I could do that."  In the same way, many people seem to think that Rainbows make life after loss all better - that they are the magical fix to a broken heart.   While Piper has indeed been very healing to me, her existence doesn't make the difficulty of living without Kenley just go away.   Like the colored turtle shells that send Mario's race car careening off course, there are a multitude of unexpected issues that arise when parenting a Rainbow.   Some that even send us over the edge.  

Turtle Shell: When you're holding your infant on a park bench, how to you answer the kind little old lady who asks you "Is this your first?".   Do you lie?   Do you say yes and sit there while she goes on and on about the joys of parenthood you should be experiencing for the second time?  Do you carry on a conversation while your heart is screaming out in betrayal?  Do you vaguely tell the truth, give a short "No", and hope the conversation doesn't go from there?  Or, do you tell this well-meaning stranger about your first baby - the one who died?   Do you sit there and watch her warm eyes shrink into her skull with uncomfortableness as she wishes she'd never asked?  No matter what plan you have, it will never go the way you want in that moment, and more often than not, it's a sure-fire day ruiner. 

Turtle Shell: You buy your Rainbow "Little Sister" t-shirts because she is one - and you feel that it's a nice tribute to your firstborn.   But, you only dress her in them when you're not going out - or when you're headed to a remembrance event because you're scared of the conversations that might occur otherwise.   "Where's your big sister?"  And you feel terrible because you can't bring yourself to be comfortable with being so "in the world" about the fact you have more children.   In the morning when you're dressing your Rainbow, you see that Little Sister t-shirt sitting in the drawer.  You want to put it on her, but you don't because you know you have errands to run that day and you're just not in the mood for what might happen.

Turtle Shell: You see siblings at the mall.  A big sister holding her little sister's hand.   Their age difference is similar to that of your two and you instantly wonder what that would be like.   What a wonderful relationship they would have had.   Of course, they would have fought - all sisters do - but they would have loved and cared for each other like no one else.   They would have made mud-pies in the backyard and constructed blanket forts in the living room.  They would have been each other's partner in crime.   You can hear their giggles now, coming from the back of the house, as they pull each other in to their hilarious private jokes.   Every time you see siblings, you think of this.   You think about all the things your Rainbow is missing out on - and all of the things your firstborn never got to have.  The sadness over this missed relationship eats at you like acid, creating more holes in your already falling apart heart.

Turtle Shell:  You watch your Rainbow grow.   Every day, you are amazed by her more and more.   From her first breath to her first step to her first day at school, you celebrate each milestone full of so much love.   You are constantly thrown off guard by how much you love her - by how your heart skips a beat when you see her smile.   You hold her in your arms, nuzzle her hair, wrap her little hand around your fingers, and you can't believe how lucky you are to have such a wonderful child.   And then you remember why you do - and it rips you in half.   This beautiful and fantastic little human would never have existed had her big sister lived.   Every song she sings, every word she says, every picture she draws is because her sister died.  

Turtle Shell with Spikes:  The dichotomy is torture - and it's unavoidable.   You can't simply forget this reality.   This life exists because another does not.   It is hands-down the hardest part about parenting a rainbow.   Every. Single. Moment. is a reminder of what will never get to be.  And, how do you find peace in being grateful for your rainbow when you know the price you had to pay?  Even though you know in your heart of hearts you love your children equally, the only way to verbalize this struggle is to paint one life more visible than the other, which is so unfair.   You know your Rainbow deserves more than to live in her sister's shadow.  You are determined to keep her free of that - yet the shadow exists because only one of your children is still alive.  And your firstborn deserves to be remembered and honored, but a memory is hard to hold when it's coated in grief.  Some days, this duality seems impossible to maintain.  

Rainbow Road is a hard course to navigate.  On top of "regular" parenting challenges, you also have the challenge of finding that balance between two worlds.   You have grief complicated with joy.  Sadness mixed in with excitement.  Pain swirled with hope.    You are a walking contradiction, and no one would ever really know unless you told them.   You do the best you can every day.  You change diapers.  You potty train.  You cook vegetables.  You wipe vegetables off the floor.  You strap her into her car seat.  You lay her down for her nap.   Then, you look at her sister's urn.  You touch the necklace with her initial.  You lean into the ache she left behind and you wonder how you've managed to get through another day without both of your children. 

Parenting is never easy.   Clearly, parents who have never lost a child don't have it easy by any means, but there is an added level of difficulty that comes with parenting after loss.  It's a track with the railings removed - where a slight spin out of control can send us straight over the edge and back into the darkness.  A glance over at two girls laughing can be enough to shoot me into a cloud of grief for the rest of the day.   A flickering thought of whether or not Kenley would also be able to sing her ABC's before she was two like her little sister will spin me around in circles of sorrow for hours.   

There are some days when I think to myself, "I just can't do this."   I can't be a parent to both of them.   It hurts.  It hurts.  It hurts.   I am tired of hitting those shells every day.  I am tired of feeling I am leaving out Kenley while parenting Piper.  I write blog posts and raise awareness and admin Facebook groups just so I can feel like her life means something, and then, I get caught up in the world of loss instead.   I can't be in two places at once, and yet I am - I have to be.   And I feel so very unbalanced all the time.

There are more cars than people realize on Rainbow Road.   Not everyone will tell you the child you see is a Rainbow.   Not all loss is as visible and vocal as mine.   We all zoom around this track the best we can.  Sometimes we see those turtle shells in time to avoid them - and sometimes we don't.  Sometimes we can keep ourselves from plummeting over the edge, and sometimes we can't.  There's really no solution.  Having a Rainbow is hard.  I don't say this for sympathy, but for understanding.   I want you to know what a difficult daily struggle it really is - how it's not as cut and dry as some may want it to be.  

Life completely and irrevocably changes after loss.  Nothing is the same.  Especially parenting. 

Safe Travels to all my fellow drivers on Rainbow Road.   May your day today be free of shells...or at least the next few minutes. 

 

Don't Judge the Path

There is a phenomenon present in social media that spans almost every public page.   It is the need to assert one's own opinion.  (I realize I am writing this on my very own blog that expresses my very own opinion, but bear with me for a moment.)  Some posts call for an opinion.  An example being People Magazine asking their followers who they think should be the Sexiest Man of the Year.   All the people commenting would have experience thinking someone is sexy and base their answer on that experience.  That's an appropriate use of an opinion.   Sadly, opinions are not always used that way.  Most often, they are not.   The more common use is that of "hey, I know nothing about this topic, but I am going to assert my own thoughts about it because, you know, it's my opinion, man!"

This is everywhere.   From men commenting on women's health issues to people without kids telling others how to parent.   It's obnoxious.   Jef Rouner wrote a really good article about this called "No, it's not just your opinion.  You're just wrong."   Yeah, it's your opinion.   Yeah, you are certainly entitled to it.  But, you have to realize that your opinion - and your reasoning behind it - can be wrong.   "It's just what I think" isn't a good defense when you are talking about something you haven't experienced.   

To be clear, I am not talking about what type of pizza topping is the best or what television show deserves the Emmy.   I'm talking about actual issues and experiences of other people.   If you haven't been there, you cannot tell those who are how to handle it.  Period.

I see this all the time in relation to the Loss Community.   I am elbow deep in that community, both by fate and by choice, and I know the women who live there with me.   I know their lives because I live it too.   We are all a part of an unwilling sisterhood - a sisterhood that understands the deepest, darkest depths of each other's hearts.   We remember what it was like before loss - and we live each day in the after.  Not a week goes by where someone I know isn't told how they should be feeling by someone who has never lost a child.   Not a week goes by where I don't see someone with 100% living children make an assumption about what it is like to lose a child.   In the past few days, this has happened excessively - which is what prompted this post.  

You know, I've never dismantled a nuclear bomb, but....I think I'd probably cut the red wire first.

That sounds like a pretty stupid statement, now doesn't it?   That's because it is.   That's because there is no validity when there is no experience.  

There is nothing more frustrating in the loss community than an "outsider" telling us how to feel or how they think a situation should be handled.   This happens a great deal on articles regarding memorial photos.   People call them "creepy" or "morbid".   People say things like, "If I lost a child, I'd never do that." Or, "This mother just needs to let go and move on."   Almost always, their comment is prefaced with "I've never lost a child, but..."    A recently written article, which I won't reference here because I don't want to give it traffic, included a statement from the author (who has only had healthy, full term pregnancies) that said she thought taking pictures and holding onto keepsakes from a pregnancy that ended in miscarriage would be a "painful reminder" and she wouldn't do it.  The community raged against her and she didn't understand why.   Here is why.

You don't know how this feels.  You don't know how it feels to break into a million pieces of pain and attempt to put yourself back together.  You don't know what it takes to heal from a loss.   It takes more than anyone could ever explain - and the only way you would ever know what this is like is if you had experienced it.   To make a claim about how you would act after losing a baby when all of your babies are alive and well is an insult to all of the mothers who are living every day with one or more of their children in an urn - or simply in their memory.   It's like sitting on top of a pristine white horse and telling the people trudging through the mud what you would do if you slid off.   You're on the freaking horse.  You're riding around all comfy and clean.   You don't know how this mud feels.   You don't know how it coats your skin and weighs you down.  You don't know how it dries inside your ears and between your fingers - how it seals your eyelashes together and tastes like death.   You don't know what it is like to wake up every day without your child and get through each moment with that hole in your heart.   You don't know. 

I am all for discussing babyloss.  I am an advocate for awareness and education - clearly.   I love it when people outside of the community want to open up a dialogue and discuss miscarriage or stillbirth.  I appreciate the desire to educate and inform.    But - educate, don't speculate.   Don't decide for Loss Moms how they should feel.   Don't presume how you think you'd feel or what you think you'd do or want in that situation - because you don't.   (When my nurse asked to take photos of Kenley, I gave her a horrified No.   What in the world?  Why would I want those?   Today, they are the most treasured keepsake I have because now I know just how important they are.)  When a Loss Mom comments about how maybe - just maybe - your opinion is wrong - believe her.   She has been where you have not.   She has been where you truly never want to go.    She has taken the pictures of her dead child.   She has baked a cake on their first, second, or twentieth birthday.  She has created an alcove for their ashes.  She has made a shadow box of the outfit they should have come home in.   She has done all the things you want to say you'd never do.  And yet,  the one thing many people say they'd most definitely do - she has not at all - because she is still alive.  She has fought to live in the face of grief - and she has done that by doing all those things she is constantly judged for.   

So, when it comes to judgement calls regarding how to handle loss, if you've never had to do it, take a seat.   Take a seat and listen to the voices of those who have.   Don't try to shut us down and tell us who you think we are and how you think we should feel.  This is not your life.   And if you simply can't refrain from offering your opinion about how we choose to grieve, wipe your brow with relief that you don't have to make these choices, get back on your damn horse, and walk away.