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.

Open season

Fall unofficially begins today.  The trees outside my window are starting to show signs of it.  Leaves are touched with yellow.  The morning is crisp and cool.  The new season is here, and with its arrival, I shake off the heaviness of summer.

Fall leaves

Photo by: hirekatsu

Fall has always been my favorite season, but since our loss, it is also the easiest one.  The only one that doesn’t carry with it some anniversary of our babies’ birth or diagnosis or death or burial.  It’s the arms-in-the-air, weightless downhill part of the crazy roller coaster spiral that is grief. The other seasons weigh me down.

Winter is the time we found out we were having identical twins, two days after Christmas.  We were giddy with excitement as we looked at our stockings hung by the stairs and imagined that the following year there would be two more hanging there.  We’ll need a new place to hang them, we thought.  The railing is already full.  Seeing the stockings each year makes my heart ache.  We don’t have a space where theirs are missing, but I know what could have been.  Now, we just have angel ornaments with the names Brigid and Fiona on them.  Treasures in their own right, but not what we had anticipated.  Winter feels bleak.

Spring was the time we were diagnosed with TTTS, the terrible disease that eventually would claim both of our girls.  It was a time of fear and panic attacks.  Bed rest and hospitalizations and preterm labor.  It was when we had in utero surgery in hopes of saving our girls and watched the doctor’s face fall the next day as he told us that Fiona had no heartbeat.  It was when strangers came to our rescue and family abandoned us.  It was when our babies were born silently – one dead and one twelve weeks early – after a traumatic labor and delivery, and we were happy and sad.  Hopeful and terrified.  It was a time of extreme ups and downs, and each year, spring feels so heavy as I remember how impossibly difficult it was for our family and relive those experiences, wondering how we made it through.   Spring comes in like a lion and goes out like a lion, and any lambs that show up are quickly devoured.

Summer was when we buried our stillborn daughter while making daily trips to the NICU to see our preemie.  It was learning that caskets could be so very, very tiny.  And pink.  It was balancing family life and three young boys at home, desperate for a return to normalcy, with the ups and downs of NICU life and a baby who was struggling to survive.   And then it was watching her die, picking out another little pink casket, and burying her, too.  Summer takes the heaviness of spring and then drops an enormous boulder on top of it, completely crushing me.  Summer makes me want to stay in bed and not come out.  To hide out from the world and not have to talk to anyone.  To sit and stare and remember.  The hardest thing about summer is that the kids are all home and looking to me to entertain them.  And I’m feeling like a wet blanket.  It is a huge effort to have fun in the summer, and it is exhausting.  I hope that it won’t always be like that.  But it’s hard to imagine that time.   Summer is sweltering and stagnant and oppressive.

But fall – fall is light and crisp and airy.  Nothing weighs it down.  It is brightly colored leaves dancing through the air.  So today, I’m shaking off the heaviness of summer, crawling out from under my boulder – which, admittedly, has eroded a bit over the past two years – and welcoming the fall with open arms.

However, I know that for some of you, fall is the heavy time.  So if this season carries the weight of loss with it, rest assured that your open season is coming.  As surely as the sun rises and sets each day, this time will pass and a lighter time will follow.   Until then, just put one foot in front of the other and be gentle with yourself.

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?

Car rides and rainbows

I’ve been thinking about my last post – the one about the What Ifs – and realizing that while I do think that asking those questions is a part of the grieving and healing process, they do also reflect a lack of faith.

And that’s okay.  I think our faith waxes and wanes sometimes.  Especially in the wake of tragedy.  It’s where the rubber of our faith meets the road of life.  And sometimes we skid a little.  We get flat tires.  We want a little more evidence of things not seen.

That had me thinking about this post that I wrote on our family blog in the midst of the NICU time immediately following Brigid’s premature birth.  I’ve copied and pasted it below:

We’ve had a week of rapidly changing weather, and as Patrick and I are driving back and forth to Hershey each day, it will often alternate between downpours and sunshine, and occasionally it will do both things at the same time. It’s been prime rainbow weather every day.

Only I haven’t seen one.

I’d find myself making little deals in my head with God in the car. “Okay,” I’d think. “If I see a rainbow, that means Brigid’s going to be fine.” And then I’d crane my neck all over looking for one, all the while reasoning with myself that even if I don’t see a rainbow, she could still be fine and realizing that I could see one and she could die tomorrow. I’m testing God, I’d think, and then I’d feel ashamed of my silliness. He doesn’t owe me a sign. He’s told me enough about himself for me to have faith in this situation, whether or not I see a rainbow.

It’s not faith that Brigid will be okay that I’m called to have. If that were the case, and she died, my faith would be shattered.

Rather, it’s faith in God’s goodness. It’s faith in the fact that His ways are not our ways. That all things work together for the good of those who love Him. It’s faith that God is sovereign and knows us and loves us and sees our situation. Faith that we’re still in the palm of His hand. It’s faith that if it’s His will for her to heal and grow, she will. And if it’s not, we’ll still be okay. It’s faith that He knows more than we do. Faith that He is trustworthy and that He loves our baby girl even more than we do.

This is the faith that we are called to have. This is the faith that I have to exercise each day, as surely as an athlete exercises his heart and muscles for an endurance trial. God is so good to give us our daily bread – the strength to get through each day, even when we don’t know what is at the end of the road.

I’ll still crane my neck to look for the rainbows.

But not because they have anything to do with Brigid.

I was looking for signs then, too.  But the same principles are as true today, more than two years after her death, as they were then, a few days after her birth.  God is good.  He loves us.  He works all things together for our good.

I’m not sure why I felt it so strongly then and now I struggle sometimes.  I have to keep telling it to myself, I think.  Over and over until I am facing my own death.  Sometimes I just read the words of Brigid’s eulogy over again to myself.  They bring me so much comfort.

I am working on posting our story, though it is so incredibly long.  March to June – the time from our diagnosis until the second one of our twins died – was only four months, but brought a lifetime of ups and downs, hopes and fears, joy and sorrow.  In an effort to keep faraway friends and family up to date on each twist and turn, and to process my emotions myself, I wrote about the experience on our family blog.  There are so many posts, though, that it is hard to condense them and still give the whole story.  Suffice it to say, you are welcome to peruse the posts starting in February of 2011 and continuing until…well, until today, I guess.  Our loss is threaded into our lives since then and there is not really any separating ourselves from it, even as we keep living.  We never move on from it, we just move on with it.

absence