Sharing your story

Our little Brigid died in the summer time.

After the dust settled a bit and the numbness wore off, the heaviness of grief came crashing down on top of me and I found myself  pinned under its weight.

Everything was a struggle.

Getting up in the morning was difficult.

Caring for the children all day was difficult.

Making decisions – about groceries or meals or outings or finances – was difficult.

Watching other people just moving on with their everyday lives, whether or not they knew what had happened to us, was difficult.

That fall, I joined a group called Grief Share at a local church.  I found it so helpful to learn that a lot of the things I was feeling were normal, but I also had a hard time relating to that particular group of people in their grieving.  There was one other mother who lost her older son in an accident.  Everyone else was a widow who’d lost her husband.  They were all so very kind and understanding, but no one else had lost a baby.  The grief process was similar, but our experience wasn’t the same.


Photo by CathyK

Then I found a group online of people whose babies had also died from TTTS.  That was where I felt understood.  That was where I could say things like

Am I the only one who keeps wanting to claw the ground and dig them up and hold them? 


Now that it’s getting cold outside, I can’t stop thinking of lying on top of their graves to keep them warm.


Why, when I go into my other children’s rooms to kiss them before I go to bed, do I see their sleeping faces and think, “This is what they will look like when they are dead”?

Those feelings scared me.  I thought I was crazy for having them.  It was so helpful to know that I was not the only one feeling those things.  I was not creepy or morbid for having those thoughts, and I wasn’t alone in any of them.

I was a mother who had seen her babies die and was desperately missing them.  I was longing with all my heart to mother them in some tiny way – by holding them or keeping them warm – and I couldn’t do either of those things.  My brain was trying to make sense of that fact.  The experience of seeing my children dead was part of who I was now, and I kept thinking about it.  I couldn’t shake it, even with my living children.

Being able to verbalize those things, share them with others, and know that they had felt them, too helped me to process my feelings and move past them.

I don’t still think those things.  I can kiss my sleeping children without picturing them in their caskets now.

Part of healing from our grief is talking about it.  Talking about our precious babies.  Telling our story and their story and knowing that there are others out there who understand.  Who have been right where you are.

I think it is also helpful for people who have not lost their babies to know that we have been through these things.  To know that when they say something like, “Oh my gosh, there is nothing worse than opening a bag of slimy baby carrots” in your presence, you kind of just want to grab them by the shoulders and scream, “YES – YES THERE IS SOMETHING MUCH MUCH WORSE THAN THAT!!”

Because you used to live in Slimy Carrots Are The Worst Land, too, you don’t say that.  You remember when that was a problem you used to have.  But now it will never be “the worst” again.  Not ever.  And they probably won’t understand that there might be a time when you need to be away from them for a little while, because something picked you up and dropped you smack dab into the middle of Dead Baby Land. It feels like a you’re on a completely different planet with no map, you don’t know how to navigate it, and you can’t really relate to people living in Slimy Carrot Land or Stuck in Traffic Land or The Newest iOS Upgrade Is Annoying Land anymore.   At least not for a long time.  It’s like they speak a foreign language now.

Photo by andrewatla

I think it’s important for people, in knowing how to care for you or what to expect from you after your baby dies, to know that you might need to withdraw from friends and family for a little while, because it’s almost like you can’t communicate with them now.  Even though you used to understand each other.

You feel so alone.

But you are not alone.

When other people tell their stories, you see that there is someone else who has felt what you feel.  When you tell your story, it not only helps other people, but it also helps you to process what you’re feeling and validates it.  It feels cathartic, putting it out there in words.  Saying it out loud or writing it down helps your heart to heal – even if just a little bit – from the pain.

This blog is not just about my own experience with grief.  It has helped me to work through some of my thoughts and feelings, but it’s not just about me.  It’s about sharing some of my experience so that other people can know they’re not alone.  And so that people who have not lost a baby can know what kinds of things someone who has lost one is feeling.  And it also helps me to heal.

And you can do that, too.  Whether it’s here on this blog, or on another blog, in a support group,  or with a trusted friend, telling the story of what happened to you and sharing the brief lives of your precious little ones helps with the healing.  It doesn’t mean you won’t still hurt.  But it does help.

If you would like to share a little bit of your story here, please feel free to do so in the comments.   It doesn’t have to be long.  You can tell us about your baby or babies and what happened to them.  Tell us how long ago it was and what it feels like at this stage in your grief.  You can do it anonymously, with a pseudonym, or your full name – it’s completely up to you.  If you have a hard time writing, and want to tell your story a different way, consider participating in something like this project that is a guided way to capture your grief in photographs.  Or do both.  Or you can find some other way to share with others that you have experienced the loss of a baby.

I know October can be difficult, especially if it’s around the time that you lost your baby.  Last year I was weeks away from delivering my rainbow baby in October, and I didn’t want anything to do with it.  I was already terrified.  I didn’t want to think about stillbirth or infant death.  If that’s the place you find yourself, then forget about increasing awareness.  Do whatever you need to do to get through.

But this year, I feel differently.  I think increasing awareness is all about having the freedom to share an experience that societal norms tell us we should to keep to ourselves, it’s about honoring our babies, and it’s about bringing healing to our hearts by knowing that we are not alone.

Would you consider sharing your story somewhere?  It doesn’t have to be in October.  Anytime will do.


October is Pregnancy and Infant Loss Awareness Month.

I’ve been thinking a lot about what this means.  What does it mean to have awareness that some babies die – a lot of babies die, actually?  What are we supposed to do with that awareness?

I think that awareness means different things to different people, depending on which side of the baby loss coin you happen to land.


Photo by BeverlyLR

For those of us who have lost a baby, October is a nice time to have a memorial event or to participate in a walk or to light a candle or to release balloons.  A time to remember our precious little ones and to speak their names that we love so much and long to say more.

But it is so much more than this.

All of these things are generally done with other baby loss parents – other people who know the extreme, unspeakable pain of losing a child.  And that is wonderful, and helpful and healing, because there is a community of support.

But we aren’t the ones who need awareness, per se.   We already know babies die.  We know how frequently it happens.  We know the statistics involved for the situation under which our babies died, the heartache of leaving the hospital without our little ones, the grief that follows us around.  We know picking up the pieces and trying to move on with a great weight crushing us.  We know living every day feeling like part of you is missing, the price of headstones, the cost of digging a grave.

Believe me, we know way more than we ever wanted to know.

For the parents and siblings of the baby that died, awareness might mean knowing that they are not alone.  Being aware that other people understand what they are feeling and can walk with them through their dark valley.  It could be connecting with others a little farther along in their grief so that they can be assured that the pain they are feeling is not going to swallow them whole because sometimes, it feels like it might.  It could mean knowing about organizations like The Compassionate Friends, and The MISS Foundation that can help them, books they can read, places they can go for support, and things they can do to honor their babies.  We all long to make our little ones a bigger part of our every day.  We want to talk about them.  We imagined spending the rest of our lives with them.  And now, for us, awareness means figuring out the answer to the question: where do we go from here?

But really, the people who need the awareness about baby loss are the people who have not gone through it.

For those people fortunate enough not to have lost a baby of their own, it means awareness that babies die.  But not in the sense of some vague, occasional tragedy, like sometimes volcanoes erupt, or great white sharks attack, or sometimes meteors hit the earth.  It happens in such a real and frequent way that it is very likely that they know at least one person who has delivered or held their own dead child. It’s not nearly as rare as they might think it is.

And yet, sometimes it feels like no one wants to hear about it.  It’s too sad.  They might not say it, but sometimes it feels like, I’m sorry, that’s too upsetting and I have enough going on in my own life right now.  I just don’t want to think about babies dying.  And that’s okay.  Sort of.  I do get it.  But it’s curious that folks would probably be more understanding and sympathetic toward someone who is missing their dead pet than they are about a child.  It’s easier to hear about missing your dog.  Oh yes, I had a dog die once; I know how upsetting it is.  They don’t know what to do with baby loss.  It’s too tragic.

Somewhere, somehow, people need more awareness that lots of people have lost their babies.  And they need to know what to do with that fact.  They need to know how to handle it.

They need to be aware that there are things that they can do or say that can help. Little things, that don’t require a big investment of time or emotions.  They can ask us about our child.  Say their name.  Remember their birthday and know that that will be a hard time for us.  They can ask how we are doing, and not take “Fine” for an answer.  (The real answer will probably never be “Fine” again, though it will be the one that we give when we don’t think people want to hear the truth.)  They can count the babies we lost among our children, and not act like it’s weird or morbid to do so.

I think part of increasing this awareness is letting people know that we are the faces of baby loss.  It’s not something that just happens to other people. Whether it’s through miscarriage, stillbirth, or infant death, we had a baby that we wanted and that baby died.  It happened to us.  There are a lot of us, and our lives are still going on.  It doesn’t necessarily mean that we are going to be completely needy – just an emotional drain on you – so you need to keep your distance because you’re just really busy with the PTA and soccer practice and stuff.  But it means there is something significant and traumatic that happened to us and please don’t ignore it.  We are not always going to collapse on you in tears or ask you to run errands for us because we can’t handle it.  But please do know that we are struggling.  Every day.  Some days may be easier than others, but it’s always there.  And talking about it doesn’t make us worse.  It makes us better!  Talking about our experience validates it and helps us to process it.  It is healing.  People need to know that I can say Brigid and Fiona’s names and talk about the trauma surrounding their brief lives and their deaths without bursting into tears.  I’m dying to say their names more, actually, and would love to hear them say them, too.

So this October, we can light candles for our sweet little ones.  We can release balloons and gather with other people who get it because that is so very helpful and important, and it feels wonderful to do.  It is nice to have one specific time when all of us who have painful anniversaries all throughout the year can come together and remember together.  But we can also increase awareness by letting other people know that we have a little one that we loved who is not with us.  It might be hard to talk about them, because that’s the way things are right now, and people don’t always want to hear it.  But that’s just it.  We need to increase the awareness.  Help them know what to do with it.  Whether we have a sketch of our baby hanging in our homes, we wear a piece of jewelry with their name on it, or we just find a way to work them into the conversation, it’s only by talking about them more often that we can make people more comfortable with it and help them learn how to handle it.

And that, I think, is the whole point.