Wednesday, April 30, 2014

Things People Say

Our March of Dimes March for Babies walk was this weekend, and it stirred up a lot emotions and a lot of interesting remarks.  People say interesting things to you when your baby dies.  I have friends who have lost children, and I will admit that I never knew what to say, either.  Was I helpful?  Was I unwittingly cruel?  Did I do enough?  Until you've experienced this kind of loss, it's hard to know the right things to say.  I know these words come from a place of love, but they can eat at you nonetheless.

People mean well, but it's always surprising to discover which comments bother me the most.  I don't think a day has gone by since Ramona died that I haven't had to break the news to someone.  Our family, friends, and co-workers did their best to tell as many people as possible, but both of us have had to field "How's the baby?" questions on a daily basis.  Catching someone out of the blue with our answer usually leads to responses like these.    

Don't worry,  you'll have another one. 
Yes, people say this and yes, it's awful.  First, there is no guarantee we will have another child.  We learned the hard way there are absolutely no guarantees in life.  Second, no child will ever take the place of Ramona.  Period.

You'll be a mother someday.
Yes, people say this, too.  I already am a mother, but thanks?

I'm praying for you.
I try not to get too upset with the prayers, but I prayed every day for Jessica and I to give birth to strong, healthy babies and it didn't work.  I prayed for Ramona even though I was convinced she'd come out screaming and healthy.  When people tell me they are praying for me, I think, Why?  It won't bring her back, and sometimes it feels like the implication is that god didn't care enough about our babies to let them live.  Nothing will ever convince me that prayer is helpful or that god 'has a plan.'  If god's plan was for our babies to die, that's pretty shitty. 


Nothing.  
A lot of people avoid talking about Ramona with us.  They are afraid to talk about her because they are afraid we'll be sad.  That is noble to a point, but bringing her up doesn't make us sad because we are already sad.  We will always be sad.  We have to live the rest of our lives without our daughter.  I don't 'forget' that during lunch or while watching an episode of Game of Thrones.  It sits heavy in our hearts 24/7.

The funny thing is none of the above upset me as much as the following. 

You're so strong.

I don't feel strong.  Some days I feel angry, some days I feel jealous, some days I feel hopeless, some days I feel deep, deep sorrow.  I don't view waking up in the morning and getting out of bed as strength.  It's merely survival.  This is a much discussed topic on Baby Loss Planet, strength vs. surviving.  People see us showered and dressed and at work, but the surface does not reflect what's underneath.  My hair is brushed, my clothes are clean, but below the surface my brain boils with poisonous thoughts.  I feel like Oogie Boogie from A Nightmare Before Christmas.  Plain and innocuous on the outside, but crawling with pain on the inside.  I get that it's a compliment, that people see us resuming what they assume is our normal life and are relieved and happy that we seem to be 'back to normal.'  There is no 'normal' after your child dies, there is only your New Normal.  This comment can sometimes be followed up with...

I could never...

I've heard this quite a few times.  I could never handle it, I could never go on.  I used to think the same thing, but unfortunately you don't have much of a choice.  We were asked to make decisions no parent should make, we signed paperwork and answered yes and no to so many questions, but no one ever asked if we'd like to give up.  We wanted to give up. Oh, we wanted to.  The last thing we wanted to do was leave that hospital without Ramona, but we had no choice.  When you lose choice, you realize all those cliches about life being short and precious are indeed true.  Then you start to meet people.  You meet people who have also lost their children.  These people are not ranting and raving, they have not devolved into lunacy.  They are surviving, and as much as you think you could never go on or handle it or survive, you would.

Every time someone tells us they could never handle it or go on, it's like telling us that we aren't grieving as heavily as they would if they lost their child.  That if we are getting out of bed in the morning we must be over her.  That if we aren't raging and crying and screaming, we must be okay now.  Hopefully they never have to know what this grief feels like, but until they are tested they just don't know.  It's a very romanticized notion, that you will wither away and die after all you've been through.  There are sad instances where people do, but the majority of us don't.  We can't.  We still have work to do.   



When your child dies, a part of you dies with them.  Your hopes die, your patience wanes, and the big things are so much smaller, but your love lives and grows bigger than you ever believed was possible.  You think ahead, you think about the people like you, who have no idea what is coming.  You need to be there for them so they know they aren't alone.  That's what countless people, whether they know it or not, have done for us.  That's what we intend to do for others.  I want people to know that yes, people will say things you don't want to hear.  Yes, you will want to give up, but continuing to live and living large is the best way to honor your child.  


Monday, April 14, 2014

What We Don't Imagine

I have a crazy imagination. When I was a little girl my mother's favorite thing to say to me was, "Michele, don't exaggerate."  I can take the most ordinary event on the most ordinary day and turn it into something fantastical, but never once did I imagine that after nine months of pregnancy my baby would die.  Never once did I imagine that I would deliver a baby that would never take a breath.  Never once did I imagine my husband and I would return to our new home with empty arms.  Never once did I imagine three days later I would be told my best friend's daughter Savannah had died the same day as our Ramona.  Never once did I imagine a term I had only seen in old-fashioned books, a term that seemed so dated, would apply to my daughter.  I imagined so many wonderful things about my daughter.  What she would look like, the adventures we'd have, the person she would become, but I never imagined she would die.  Never that.

The grim reality is about 1 in every 160 babies are stillborn each year in the United States alone.  That's three babies an hour, 72 babies a day, 26,000 babies a year.  Not worldwide, just in the United States.  A stillbirth is defined as any pregnancy ending after 20 weeks.  This means 26,000 women a year in the U.S. are forced to deliver a child they will never bring home.

Stillbirth :
  • is ten times more likely to occur than SIDS.
  • does not discriminate.  Socio-economic conditions, ethnicity, age, weight, previous births guarantee no immunity.
  • can be caused by infection, birth/chromosomal defects, cord accidents, placental problems, chronic health conditions in the mother, poor fetal growth, yet...
  • in one-third of stillbirths no known cause can be determined.
Our daughter Ramona is in the one-third.  We will never know why our baby died.  We will never understand why we are some of the unlucky ones.  Instead of writing this, I should be cuddling my almost-four month old.  Instead of posting fundraising links on Facebook, I should be posting adorable photos of our brown-haired, rosebud-lipped, perfect little girl like the rest of my friends and family.  Maybe one day I'll be able to do those things, but never with Ramona. 

Instead, Jessica and I would like to fuel our unending love for our daughters into something that helps other families experiencing the loss of their child.  This can be a lonely journey, but it doesn't have to be.  The death of a child is sad, uncomfortable, unbearable, but if we stay silent so many families are left without support.  We want moms and dads of lost children to have resources at hand to get them through the pain, and we want those who love these moms and dads to have the resources to support them.   

We will never get over the loss of our children, but we will get through it.  We need to break the silence. 

Sources:
http://www.scientificamerican.com/article/stillbirth-risk-factors/
http://www.hiringforhope.org/pregnancy-infant-loss-awareness.html
http://www.marchofdimes.com/loss/stillbirth.aspx#
http://americanpregnancy.org/pregnancyloss/sbtryingtounderstand.html