What Could Have Been

My girls’ birthday is in two days, and I have had a pit in my stomach since the weekend.

They would be three years old this year.  We should be having a party with pretty dresses and streamers and balloons and bubbles, and they should be giggling and twirling and blowing out three candles on two birthday cakes.  Or one.   (I tend to imagine myself being overly ambitious in these daydreams.)

I was listening to NPR on Saturday afternoon as I was organizing our boys’ bedroom.  All three of our boys share a room right now and the mess can get out of hand rather quickly.  As I worked, the TED radio hour came on and they were talking about languages.  I heard this talk by a Vietnamese teacher of Greek and Latin named Phuc Tran. In it, he talks about how our language affects our perceptions.  Specifically, he talked about the subjunctive mood, which is present in English and several other languages, but is not found in his native Vietnamese.  The subjunctive is a verb tense that deals in the hypothetical.  In wishing, in hoping, in possibilities.  Phuc talks about a near miss that his family had when he was a child in Saigon.  They made a last-minute change that saved their lives, as a bus that they were going to take pulled away from the station, was hit by artillery, and exploded.  He implies that because of the subjunctive mood in English, he was able to spend time thinking about what could have happened while his Vietnamese-speaking family, with their indicative mood, could not.  The former French teacher in me was intrigued.  Le subjonctif and I have a love-hate relationship.

Whether or not the lack of the subjunctive in Asian languages prohibits them from being able to contemplate what could have been, this got me thinking about grief and loss and the subjunctive.  When a person lives a full life, grows old and dies, we are not usually left wondering what could have been.  It was.  They were.  They lived their lives and then they died.  But when a child dies, there are so many possibilities that are taken away, from their appearance to their personality to what they would have done with their lives and how our lives would be different with them living in it.  There are an infinite number of possible outcomes, each with its own subtle nuances,  and we will never get to experience any of them.  We are left with this void and wondering what would have filled it.

But is that a good thing?

That is the question that Phuc brings up in his talk.  The “dark side” of the subjunctive is that we spend time thinking about what could have been when the reality is that it just wasn’t.  But I can’t imagine that there are mothers out there, even without the subjunctive mood, who aren’t wondering what life would be like with their children.  Is that just my cultural – or linguistical – bias? It’s hard to imagine life without the subjunctive.  It’s the basis for so much of our film and literature.  Imagine reading an O. Henry story without wondering what would have been if something had not happened.

A particularly trying day with my kids on Sunday left me thinking a lot about those things.  The two hours spent getting everyone dressed and out the door for, and then sitting through, church leave me feeling steamrolled, and maybe it was because of the girls’ upcoming birthday, but on that particular day, I spent a lot of time wondering if I could have managed if my twins were with us. And if they were, would we still have our sweet youngest daughter?  If things are difficult and I feel overwhelmed with four, am I glad that I don’t have two more?  Did God know I couldn’t handle it?

You can imagine that running that loop of questions through your mind for a day is futile and defeating, and doing it while meeting the needs of four little ones is quite exhausting.  It was indeed a dark side and my mood matched it. So it got me thinking about what it would be like to live in the indicative.

Our twins died.  They are not with us.  I don’t spend time dwelling on possibilities because that is a waste of time and effort.

I have to admit that it was a bit refreshing, but I couldn’t maintain it long before the  thought of “Yes, but…” crept in.

So what do you think?  I’d love to hear from someone whose native tongue does not include the subjunctive mood.  How does one grieve the loss of a child without the subjunctive?  And for the rest of us, is the subjunctive why we “dwell?”  Does its usage reflect a lack of contentment or faith?  Does it help our healing or hinder it?

I think that on Thursday, we will be celebrating their birthday the way we always do: by releasing some balloons, having some cake, and imagining what life in our home would be like if Fiona and Brigid were with us.

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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.

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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? 

or

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

or

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.

Awareness

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.

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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.

About your photographs

Some of you may be worried that your photographs aren’t good enough to send me. That you didn’t have a professional organization like Now I Lay Me Down To Sleep come in and photograph your baby, and so your pictures might be too raw or too shocking or too hard for me to see.  A few people have mentioned this to me, or seemed apologetic when they send me their photographs.

I just wanted to take a moment to reassure you that none of the sketches I have done so far have been from professional photos. And none of the photos anyone has sent has shocked me.

My own stillborn baby died eight weeks before she was born.  She shared my womb with her growing sister and had no amniotic fluid to cushion her.  She was so flattened and pressed into my placenta when I delivered them that the doctors did not want to let me see her.  It was only after I reassured them that I knew she was going to be flat and not look normal, and said that if they could not remove her from the placenta I would like to please just see the placenta so that I could look at her, that they finally agreed to try to remove her.  She had no facial features.  She was pale and fragile and her head looked like a little Pac Man with no eyes and a tiny open mouth.  But she was my Fiona.  She fought so hard to stay alive in there against such great obstacles, and she was absolutely beautiful to me.  I loved her with all my heart, and my husband and I were so thankful that we had the opportunity to hold her and talk to her and say our goodbyes.

Our Brigid died while she was hemorrhaging and intubated, so that afterward, when we got to hold her and finally see her with no tubes or tape on her face, she had cotton gauze in her nose from the bleeding.  Her little lip was sticking out from where the ventilator tube had been taped to it. But she was the most beautiful baby girl I had ever seen in my life.

So when you send me your photographs, please know that I am not surprised by them.  Rather, I am in awe of the beauty and detail of these precious little ones, no matter how small.  And because a photograph does not always depict them the way you remember them, I will work closely with you to fine tune your sketch so that it feels like your baby when you see it.  If it is a little out of focus or far away, or difficult to see exactly how something looks, I do my best to interpret it from the picture and then I send a photograph of the sketch to you for feedback.  Is it like this? Is the face rounder, or thinner, is the nose smaller or narrower? Your input is so important because you were there. You have that face etched in your memory. You know it like one else does.

I never share your photograph with anyone else, except, occasionally, my amazing husband, who often sits with me while I sketch.  And I delete the the message with your photograph, whether it was sent through Etsy or through email, after your sketch is complete.  I know how precious these photographs are.  I do not take them lightly, and I feel privileged to do what I do.

Please don’t worry that your photo is not good enough.  It is.

Grieving other losses – Part 2

Some of the other losses we grieve after our child dies have to do with the relationships we had before their death.

People that we imagined would be there supporting us in our darkest hour were nowhere to be found.

No phone calls asking how we were or how they could help.  Nothing.

Some of them were making demands of us, wanting us to accommodate them or comfort them.  Making things more difficult instead of helping.

I read this op-ed piece a few months ago about how not to say the wrong thing to someone during a crisis situation and thought it was so good.  So many people said the wrong thing.  They talk about putting concentric circles around the person or people going through the crisis, labeling the larger ones with those people farther away from the epicenter of the situation.  The closer the person is to the crisis, the smaller their circle.  They encourage people to offer comfort and help to anyone in a smaller circle than their own, and to lament or complain or vent only to people in bigger circles.  Comfort in, dump out.

Silk Ring Theory

Saying the wrong thing can be forgivable.  Sometimes we all put our foot in our mouth, especially when we don’t know what to say.   But at the end, the author points out that almost everyone knows not to dump in on the person in the middle circle.  The point is that that is self-evident.  It’s the other smaller circles that the author is making people aware of.  Not dumping on the center circle is a “duh” thing.

But some people dumped.  Even on us, in the center.

Sometimes they didn’t like how we were handling things and complained.  Sometimes they would tell us about their own troubles and wanted our sympathy or comfort.   Sometimes, we asked them to come and they stayed away, or we asked them to stay away and they came.  They did what they wanted and not what we needed them to do.  That’s dumping, too, in a way.  They were using us to meet their own needs, but not ours.

And as we were struggling to keep our heads above water, more than we ever have before in our lives, those people were like dead weight pulling us under.  Sometimes, we had to let them go.

If we’re honest, we might acknowledge that some of those relationships were troubled to begin with.  In my case, there were a few that were always off.  Always strained or unhealthy.  But this crisis situation caused them to become gangrenous.  We needed to cut them off before they killed us.

Some of those relationships no longer exist.  Some will never be the same again.

And we have to grieve that, too.

We grieve the fact that the people we thought would be there for us were not.

We grieve the damaged or broken relationships that our tragedy left in its wake.  It’s hard to look past the dumping in.  Past the absence of help or phone calls. We wanted to scream, Do you have any idea what I am going through here?!  Their lack of empathy was staggering, and we realized that if they couldn’t have it then, they are likely never going to have it.  And we just don’t have time or energy for that kind of relationship now.

We are different people.

Sometimes those broken relationships are with people in very small circles – parents, siblings, close friends.  And now we grieve the void that is left there.  Holidays, birthdays, times when we would see them or want to call and talk to them, we just don’t now.  We can’t.

But out of that tragedy, we have made new friendships.  We may have fellow bereaved parents – a community of them or even just one – who helped us through because they understood our pain.

We may have had strangers or people we hardly knew stepping up to help us in ways we couldn’t have imagined and now our friendships with them are stronger, filling in the void left by those who abandoned us.  Closing in the circles.

We have those friends and family who stood by us and supported us, and our friendships with them are strengthened.

And finally, because of our losses, we can forge friendships with other newly bereaved parents.  Who else understands the agony they are feeling?  Who else knows the depth of their loss if not us?  Offering them comfort gives our losses a purpose, since we can help them and speak to them and listen to them in a way that many others can not.

So we do have to grieve those relationships.  And the pain of them comes up again and again throughout the year as we remember what things were like before our loss.

But after we grieve them, we might need to take a good look at ourselves and realize that because of our losses and possibly even because of them, our compassion and empathy has been supercharged and our tolerance of insensitivity and unkindness from others has been greatly reduced.

And maybe that is a good thing.

Grieving other losses

Yesterday’s post about, among other things, the first day of school had me thinking about the other losses that we grieve when we lose a baby.

We don’t just grieve our baby who died.  Which seems unfathomable because that loss is enormous – how can we possibly add more to it?  But we do.  We add so much more.

Many of us grieve the loss of bringing a baby home from the hospital.

We grieve the loss of flowers and cards that people get when they bring home a new baby.

We grieve the loss of “Congratulations!

We grieve the loss of decorating the nursery (or possibly worse, we grieve the loss of a baby to enjoy in our beautifully decorated and lovingly prepared nursery).

We grieve the loss of late night feedings and diaper changes.

We grieve the loss of trips to the park and the zoo and Disney World with them.

We grieve the loss of siblings for our children.

We grieve the loss of brushing their hair and dressing them in cute outfits and giving them baths and reading them stories.

At holidays, we grieve the empty spaces where their stockings or Easter baskets or gifts or presence would be.  Should be.

We grieve the loss of first words, first steps, first teeth, and first days of school.

Some of us, like me, grieve the loss of having multiples when one or both of them is gone – it is such a rare thing that everyone loves to comment on.  Oh wow, twins!  Triplets!

There are so many facets to our losses that it is no wonder that our grief can spiral back and catch us off guard sometimes, rearing its ugly head and reducing us to tears at different times throughout the year.  Years.  Not just on their birthdays or on anniversaries.  Maybe that’s why it seems unending and bottomless.

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Knowing that this is a normal part of grief and loss is helpful, but those things still hurt.  Sometimes, people don’t understand.  How are you still grieving like this is new? It’s been years.  But every one of these is a new loss.  A loss of something else that we didn’t even realize that we’d be missing, reminding us of the ultimate sadness which was seeing our baby die.

What other losses do you grieve with the death of your little one?