Friday, January 30, 2015

Rant of the Day

A couple of days ago, my first perinatologist called to tell me he'd been speaking to a few of his colleagues about me and he'd like to book me in for a second opinion with one of them.  (It's very strange to think about multiple very important, very educated doctors having conversations about me.  It's also strange that the very important, highly educated doctor calls me himself.   A couple times.  And takes the time to talk to me and answer my questions.  And asks how I am doing emotionally.  I am clearly no longer a regular patient. )  A second opinion?  Yes please.  He made the appointment, called me the next day to tell me about it. 

Here's where my rant begins.

Someone (the receptionist?) just calls me from this new doctor's office, to confirm my appointment, and the first thing she says to me is, "Are you having a baby?"

No.  No, I am not having a baby.  I was having a baby, but now I don't have a baby because my baby died.  Which is why I am being referred to this office.  Perhaps you could look at my file?

But it's the language that gets me here.  She didn't ask, "Are you pregnant?"  She asked, "Are you having a baby?"  I now know that pregnancy does not equal baby. She works in Maternal Fetal Medicine, so I am thinking she should probably know that too.  So fix your fucking language.  Start using medical terms.   If and when I get pregnant again, I will still pause at the question, "are you having a baby?" because the truth is, I don't know and neither do you.  I sure hope so.  But let's stop making promises and let's stop perpetuating the lie that a pregnancy ensures a live baby at the end of 9 months.

End rant.

Thursday, January 29, 2015

When Bad Things Happen to Good People

I have a bone to pick with Harold Kushner.
This book is pretty famous.  It's been recommended to me often since Lydie died.
The whole premise is that God doesn't cause bad things to happen to good people.  He doesn't even let it happen.  God doesn't have this kind of control.  God cries with us.  God is in the people who love us who lift us up and carry us.
I can agree with that.  I don't believe that Lydie's death was part of God's plan.  I don't think she's in a better place.  I think the best place for her is home with her dad, her brother, and me.  I think bad things happen to good people.

But here's what I can't agree with:
    Consider the following sequence of events.  In the delivery room, a baby is born with a congenital heart defect or some other serious ailment hidden from his parents' genetic background which threatens his survival.  If he were to die shortly after birth, his parents would go home, saddened and depressed, wondering about what might have been.  But then they would begin to make the effort to put the loss behind them and look to the future. 
     But the child does not die.  Through the miracles of modern medicine and heroic devotion of nurses and doctors, he survives.  He grows up, too frail to take part in spots, but bright and cheerful and popular.  He becomes a doctor, or a teacher, or a poet.  He marries and has children.  He is respected in his profession and well-liked in his neighbor.  His family loves him; people learn to depend on him.  Then, at age thirty-five or forty, his frail health catches up with him.  His congenitally weak heart, which nearly failed him at birth, gives out and he dies.  Now his death causes more than a few days of sadness. It is a shattering tragedy for his wife and children, and a profoundly saddening event for all the other people in his life. 

So let me get this straight, Kushner thinks 0 years is better than 35 years?

And Kushner thinks that a baby's death causes "a few days of sadness"?

That a baby's death is not a "shattering tragedy," the way a 35-year-old's death is?

That having the opportunity to become a doctor, or a teacher, or a poet is worse than not having the opportunity to become anything at all?

Tell me I am misunderstanding this. 

Wednesday, January 28, 2015

I can't imagine

This is what I used to say to people, when their grief was hard for me to even contemplate.  "I can't imagine."  This is what people say to me all the time now.

At first, it didn't bother me.  "You don't want to," I would respond.

Now, it bothers me.  The comment has been irking me for weeks.
I have been trying to figure out why, and when I read Brooke's blog and she pinpointed it exactly.
These people are saying that my life has become an incomprehensible nightmare that they can't even bear to think about. 

You can't imagine because you don't want to.
I don't want to either, except I'm living this life.

Or, you could try to imagine.
You could stop and wonder what it would feel like to hear only silence while looking for your baby's heartbeat at your routine, 34 week appointment.

You can stop for a minute and think, "What if one of my children died?"

It's horrific, right?

I'm jealous that you can't imagine.  That you get to choose not to imagine.  That you can stop your mind from thinking such horrific thoughts.  
What you can't imagine is my life.

I know I'm being sensitive.
I know I need to cut other people some slack.
I am trying, like when a faculty member just told me about how she had a scare with one of her babies... but she turned out to be fine.
I stood there and nodded my head as she went on about how scary that moment was, but thank God it she turned out okay.  All the while thinking, please stop talking now

My scary moment didn't turn out to be okay.  My scary moment turned out to be your worst nightmare, the one you don't want to imagine.

Maybe I should be careful here.  Because I hate even more when people don't acknowledge - to my face - the loss of my daughter.  I hate when a meeting starts without anyone acknowledging that I haven't been at those meetings in 12 weeks, because my daughter died.

But I think I'd just prefer if they stuck with, "I've been thinking about you."  

Monday, January 26, 2015

A Ski Weekend

For four years in my twenties, I lived in Colorado.  My sister called me "a ski bum with a real job."    Taught middle school punks during the week, skied all weekend.  And missed my family, a lot. Which is why I eventually came back to Ohio.  Because even though I love those mountains,  I love my family more. 

Fast forward 8 years.

Soon after Lydie died, I proposed a weekend ski trip to New York to my family.
"You want to go skiing?" they asked.
They'd pretty much give me anything I asked for at that point.  Not that they could ever give me what I really want.

I wasn't sure if I wanted to go skiing.
That's the thing about my grief.  It feels right to be sad.  I don't particularly want to try to have fun.
But I also know that holing up all weekend, every weekend, can't be too healthy.  
And fresh air is healthy, right?

Last week, I told our grief counselor that I am consumed with thoughts of my daughter.  I do not think about anything else.   I cannot think about anything else.  (Would I want to if I could?)  Even when I'm with Ben, even when I'm working.  Hell, even when I'm sleeping, all my dreams are about my dead daughter.  It is exhausting.

So, this weekend, I took my grief and my all-consuming thoughts of my daughter to a different state.

When I was skiing, losing my daughter didn't hurt any less.  It just gave me a different view to look at in the meantime.

I did okay overall.  Besides hours of skiing, I felt the sunshine, drank some wine, had some normal conversations, watched my son run around laughing with his cousins.

Other moments, it was hard to breathe.

My family tries so hard.  I hear stories of other families, ones who won't acknowledge the loss or speak the baby's name... and that just makes a tough situation tougher.
Still, my sister has the older brother, younger sister combination.  She had it first, but I was supposed to have it too.  I was so close to having it, and then it was snatched away from me.
And so being around my own nephew and niece can be really hard.
It can continue that "why me?" mentality that eats me up inside.
It's easy to get angry at my family right now.  If for no other reason than, I'm angry.  And I can't take that out at work, and I can't take that out on Ben, and if I took that out on my husband, I'd be risking my marriage too.  And let's face it, I really need my husband and my marriage.  So sometimes, I unleash that anger on my mom or my sister, like on Saturday, when we got separated and I started skiing alone, watching the rest of them ski together and ride the chair lift up together.  I felt rejected.  I felt like my life just completely sucks and I am miserable to be around.  I got unreasonably mad about the given situation.  I felt 15-years-old and unable to handle my emotions, unable to be reasonable.   But the truth is, I'm just really angry.

Later, when I wasn't so visibly pissed, my sister wanted to take a picture of us and I said, no, I still don't do pictures.  I wonder how long I can get away with not doing pictures.  And part of me is a little sad about that, like I can't even have a nice photo from our ski weekend, because being in photos makes me too sad.  When should I force myself to buck up, fake a smile?  How long should I keep punishing myself?

And on Saturday afternoon, as the lodge was bursting with people living such seemingly normal lives and the chair lift line full of ten-year-old girls, I thought I was going to lose it.  Now, I know one could argue that I have no idea what grief all those seemingly normal people are experiencing.  And for all I know, one of those girls could be a rainbow baby.  But I needed to get away.  And that made me be done skiing for the day, to head back to the security of my family and our condo.  There's the anxiety, the creeping feeling that I may lose my shit at any given time.  And crowds and packs of 10-year-old girls seem to be triggers.  Well, girls of any age really.  All these girls, none of them Lydie.

Between the hard moments and the rising anxiety, while always missing Lydie, I had a pretty okay time.  And maybe that's the best I can hope for right now, pretty okay.

Wednesday, January 21, 2015

My Tante

I'm not that big of a person.  Tante Gonda was pretty small.

My maternal grandfather - my Opa - was one of seventeen children.  Two who died in infancy.  That's right, my Great-Oma had 17 babies.  17 pregnancies.  No twins.

We always joke that we are related to half of Holland.

My Oma and Opa immigrated from Holland to Canada at the end of World War II. They wanted to farm and there was no farm land in Holland.  They said goodbye to their families, never knowing if they would see them again.  (They did).

One of those 17 babies was my Tante Gonda.
One of the most amazing women I've ever known.
A nun who spent most of her life living with the poor in Malawi.

When my brother, sister, and I were kids she'd write us each an individual note on a card that was hand-stitched by the Malawian girls.  It was always pretty exciting to get mail from Africa.

When she turned 80, the diocese forced her to move back to Holland, where she hadn't lived since she was a young girl.  She didn't quite fit in there anymore and she missed Malawi, but I am pretty sure she didn't complain.

My mom and I flew to Holland a couple years ago.  My first time there, though I had met my tante (aunt) on many different occasions when she came to Canada.  This trip, in which I visited Germany, Austria, and England as well, was my big hoorah before trying to have babies with my husband.  But that's right, I took that trip with my mother.  I wanted to see the place my grandparents grew up.  I wanted to meet a few of those hundred second cousins that live there in Holland.  And luckily, I got to spend some time with my dear Tante Gonda.

She died today.  My Tante Gonda died today.  At 87 years old.

Certainly not a tragedy.  She lived a good, long, purposeful life.  She was a Mother Teresa, taking care of the poor, and giving everything to other people.

But the news hit me hard.  She was a good woman.  One of the best women.  My great-aunt.

I'm glad she got 87 good years.  I wish Lydie got 87 years.

I wonder if she's meeting her great-great-niece Lydia in heaven.  I wonder if she's looking down on us, looking down on her Malawian children, looking down on all our family in Holland.   I want to believe that - that she's with Lydie now.

But we all know I struggle with that.

I know Tante Gonda had no doubt about heaven,  that she didn't doubt the way that I do.  She believed in God and gave her life purpose by serving others. 

Tonight, we lit two candles, one for Lydie and one for Tante Gonda.

"How's the baby?"

Well, it finally happened, the moment I have been dreading for 11 weeks now.

A student came in to meet with me and he asked, "How's the baby?"
I didn't even know that he knew I was pregnant.
"The baby died," I responded.  "She was stillborn."

"Oh my God," he stammered.  "I'm so sorry."
"It's okay," I responded.  And in my head, I'm screaming, IT'S SO NOT OKAY!
"I mean, it's not okay.  It's very hard.  But it's okay that you asked.   You didn't know," I continued.

And then we discussed if he could possibly get a foreign language exemption because of his disability.

And when he finally left my office, I cried.
I'd like to go home now, and the day has just started.

Monday, January 19, 2015

Who I used to be

When my mom was staying at our house right after Lydie died, a coworker dropped off a meal.  This coworker and I don't know each other particularly well, but she told my mom how when she had seen me just the day before, I had a big smile on my face.  She seemed shocked that tragedy could befall someone who had just seemed so happy.

I think most people would say that about me, that I smile a lot, laugh a lot. That I'm pretty optimistic and positive.  Outgoing.  A people-person.

And also, that I'm motivated and a hard worker.   The anti-procrastinator.  A do-er.  I like to make plans and follow them.  I did make plans and then follow them.

Until my daughter died.

I keep hearing how something like this changes you.
And I know I'm different now.
In some ways, I mourn not just for my daughter but also for the woman I was before.
I liked that woman.  I worked hard to become that woman.
That woman died the day her daughter died.

I'm not yet sure who she is now.

Right now, I can barely make eye contact with people much less smile at them.  Small talk is torturous. The only people I want to be around are my husband and my son.  And my mom.  I don't laugh a whole lot (although today, I laughed at a fellow Baby-Loss Mama who commented that she can't wait to get to the pearly gates so she can ask "Dude, what the FUCK?" ) I can't concentrate on anything (except maybe research on cord accidents).  I spend more time on the couch than I ever have.  It's a struggle to get out of bed in the morning...  getting out of the bed is hard work in itself.  I get up and I dread the day.  I have never been so unmotivated for life.

Because, no amount of motivation or hard work can change what happened to my daughter.  I have never felt so helpless in my life.  I loathe this helplessness.

So... how much of this is just fresh grief versus a complete change in personality?
I'd like to think this is very fresh grief, and when the dust settles, I'll see what's left.

But I'm not sure I will ever return to the optimistic person that I once was.  How could I, when I know that no matter how hard you work, no matter how motivated you are, your world can be completely shattered by something you have no control over?  That you can do everything right and things can still go so horribly wrong?  I will never again be the innocent, naive person who believed that things usually just work out.  The invincibility complex that I have been hanging on to since I was a teenager has officially been shattered, and anger and anxiety are standing in its place. 

I know my grief is raw and fresh.  I know I won't always be this way, that healing takes time.   I know that I'll begin to integrate the grief into my life, but that it won't ever go away.  I know I won't always feel this shitty.

But I can't help but wonder who I will be on the other side.

Saturday, January 17, 2015

MFM = Maternal Fetal Medicine, or things I didn't know before.

The other day, driving home, I heard one of my old favorites on the radio, Bob Seger, singing, "I wish I didn't know now what I didn't know then."

That could be the thesis statement of this post.
Since Lydia died, Justin and I have done A LOT of research, about stillbirth and cord accidents specifically.  It is still so hard to believe that my perfect little baby girl just cut off her supply line.  I'm not sure I've ever even heard of it before it happened to us.  (One thing I know now that I didn't know then: the odds are .15%.)

For the record, I am not pregnant.
But we are proactive people.
Before we even think about that, we want to have a plan in place.
We want to know what will be done to prevent what happened to Lydie from happening again.
I can't bear the thought of it happening again.
I'm not sure I could survive that.

So, besides all our reading, Justin and I have also spoken with Dr. Jason Collins, the only doctor in the US who studies umbilical cord accidents.  Not a conversation that brought us reassurance, as he claims that umbilical cord accidents are not a fluke, not sporadic - which is what most other obstetricians claim.  And at this point, I've had two pregnancies and two "cord incidents," one resulting in the death of my daughter.  He puts the risk at 1 in 7 in a subsequent pregnancy also having a cord incident.  Scary, right?  So freaking scary, as if a subsequent pregnancy wouldn't be terrifying enough without hearing this statistic.

Dr. Collins used to monitor women who had had a previous stillbirth due to a cord accident in their subsequent pregnancy.  He used a fetal home monitoring system, where every evening the women hooked themselves up to a monitor and he was able to see the results from Louisiana, where he lives.  I've talked with one woman, who did this.  One evening, he told her to go to the hospital and refuse to leave.  Her baby's heartrate was monitored at the hospital and they told her everything looked fine and tried to send her home.  She refused, and her daughter was born, healthy and alive, in the middle of the night after emergency c-section.

So of course, I'm thinking, sign me up.  Until I learned that Collins is no longer able to offer the home monitoring system because the company no longer makes the monitors.  I'm sorry -- what??  Are we completely moving backwards?  This research is being done, proven that it's effective, and then the company stops making the freaking machines???

So instead, Dr. Collins advised Justin and me on what kind of care I should receive in a subsequent pregnancy.  It's a detailed plan, including an in-depth ultrasound scan at 20 weeks examining the cord in various ways, including measurements of the cord and measurements of both attachment sites.  It also includes non-stress tests twice a week (of which Dr. Collins wants to look at the results) and ultrasounds once a week beginning at 20 weeks.  Non-stress tests monitor movement, heart rate, and reactivity of the heart rate.  Collins thinks that Lydie's heart rate would have shown decelerations indicating that her cord was being compressed.  I never had an NST when I was pregnant with Lydie.

Dr. Collins believes that NSTs should be done with every low-risk pregnancy.  He makes the point that listening to the heartbeat only tells an OB that the baby's heart is beating right now.  He thinks that the placenta and the cord should receive just as much attention as the baby, because if anything is wrong with the placenta or the cord, it will harm the baby.  He thinks pregnant women should always be advised to count kicks, and taught how to do so.  I didn't count kicks in either one of my pregnancies; my doctor never even mentioned it to me.  She'd just ask, "Lots of movement?" 

But Dr. Collins' research isn't well-known within the medical community.  My OB had never heard of him.

Yesterday, my mom, Justin, and I went to meet with a perinatologist, or an MFM, maternal fetal medicine specialist.  Basically a high-risk doctor.  His office is in the hospital where I delivered both my children, and my anxiety was sky-high just walking in the door.  Hello, PTSD.

My own OB was supposed to meet us there.
I had a dream that she wouldn't show.
She didn't show.
 (Apparently, her daughter was sick.  But I just can't get over how many times she has disappointed me.  She makes all these promises, but in these big, important moments, the birth of BOTH my children and now this wildly important meeting, she doesn't even show up.)

The MFM called Lydie's cord accident "sporadic."  He won't do the kind of care that Dr. Collins recommends.  He said even if he took measurements of the cord, he wouldn't know what to do with them because the American Congress of Obstetrics and Gynecology has no published standards.  He said he could not be responsible for collecting data that he wouldn't be able to use to make decisions.  There's no accepted chart, no norms for cord length, no suggestions of what diameter of the cord indicates a problem.  He suggested that Dr. Collins be my primary care OB instead (um, he's located in Louisiana so that is not so feasible for our family.)  And we are realizing it's all about being worried about being held liable and litigation and his insurance covering him.   He won't take measurements and then follow Dr. Collins' suggestions, because I could sue him if something goes wrong.

The MFM's plan was to watch blood flow through the cord at 20 weeks, then start regular ultrasounds.  At 30 to 32 weeks (and possibly as early as 28), we'd start NSTs and biophysical profiles, which check movement, heart rate, breathing patterns, and amniotic fluid.  And we'd plan a c-section for 37 weeks.  That's three weeks later than Lydie died, so doesn't offer me a lot of comfort.

He said he'd talk to his colleagues at other hospitals in the area, see if anyone would recommend anything different, see if anyone else has had more experience with cord accidents or Dr. Collins.

The people I've been talking to at Star Legacy Foundation have reminded me that I'm the consumer here.  If a doctor won't give me the kind of care I want, then I find another doctor.  But the truth is. I don't think any doctor - in Columbus anyway - will give me that kind of care.  Dr. Collins's research is not accepted yet, it's considered controversial at best.  So instead, doctors just hope it won't happen again. No doctor is going to do anything that is not endorsed by their Congress. And it's so frustrating that doctors are going to be more concerned about being sued than making sure I have a healthy, and living, baby.

So I'm not sure where we go from here.
In some ways, I wish Justin and I could be like so many other people I've met, who just hear that it was a fluke and accept that, without doing additional research.  Sometimes I wish I didn't know so much.
Sometimes the more I learn, the more freaked out I get.

But there are mothers who have had more than one stillbirth.  Dr. Collins sent me an article about a mother who had THREE stillborn babies, all due to torsion of the cord.  I'm really not sure I could survive that.

If you are my fellow Baby Loss Mamas who have rainbow babies, I'd love to hear what you think here.  I realize it's a leap of faith and a HUGE risk regardless, but what kind of medical care did you receive in that subsequent pregnancy?  Was it enough?  Did it help with your anxiety and feel safer?  How much research did you do to lower the risk that it would happen again?  Did you find that different perinatologists are willing to offer different levels of care?  Any and all suggestions appreciated.

Thursday, January 15, 2015

A good mom

I really try to be a good mom.
My son often tests that.

Yesterday was more of the same.  Ben wanted to go outside so I bundled both of us up, grabbed the dog's leash and off we went.  We got close to a mile away from home when Ben jumped out of the stroller to walk.  Of course, he wanted not just to walk but also to push the stroller with one hand and hold the dog's leash with the other hand.  Let me just say that the cops have come to our house not once but twice about Ozzie.  Allowing a not-even-two-year-old walk him by himself is not a good idea.  So my son and I undergo a battle of the wills, which finally, after much effort and testing of my patience, is resolved with him sitting back in the stroller.  Then when we finally return home, he freaks out again.  Apparently a two mile walk in 20 degree weather is not far enough for my son.  He screams, legs kicking, as I literally tuck him under my arm to carry him back into the house.  At which point, he stands at the garage door screaming for another 15 minutes about how he wants to go back outside.  Pleading with me.

I tried to rationalize with him, told him it was cold out and we spent enough time outside.
I tried to distract him.  "Hey, Benji, do you want a snack?"

I told him I was going upstairs to change my clothes, asked him if he wanted to come.
He just wanted to stand there screaming.

So I let him.
For 15 minutes.
Until he finally realized we were not going back outside and started to play with his toys instead.

When your daughter dies inside of you and you don't even know it and your son throws temper-tantrums that last for 15 minutes at a time and you are so deep into your grief that you're not really present, it's really hard to feel like a good mom. 

It's actually quite easy to feel like an incredibly shitty mom.

Tuesday, January 13, 2015

And it begins...

I feared this from the beginning.  Justin quickly started talking about how Benjamin will understand Lydie.  That it's bullshit that we have to talk to our one-year-old about death.  How soon he'll ask, "Why does everyone else's sister live with them?"

I thought we had a little more time, but it came to fruition tonight, when I picked up Ben from daycare and his teacher handed me this:

Innocent enough right?  Oh, except for that siblings question.

That's supposed to be a clear-cut question.  Not something you have to stop and think about how to answer.  But it's not.  Not for us. Afterall, they didn't clarify whether they meant living or dead siblings.

How should I handle this?  I am tempted just to write "Lydia" in that space and leave it at that.  No more, no less.  I cannot NOT fill something in the blank there.  I can't pretend that she never existed.  I can't pretend my son is an only child, even though he sure looks like that from the outside.

But I don't have any photos of Ben and his sister together for that bulletin board- there have never been and there will never be photos that include both of them, and that hurts my heart.  And shakes me to my core.

Advice from the more seasoned baby-loss mamas?  This is uncharted territory for me.

(And dammit, daycare teachers, don't you think you might have been able to use your brains for a second and realized that maybe it would be hard for us to have our child as the fucking student of the month?  Can't we just get a pass?)

Done and done

Another conversation that haunts me:

I was in Albuquerque, about 30 weeks pregnant with Lydie.
At a conference.
In the public bathroom.

"Do you know what you're having?" some stranger asks me.
"A girl!" I respond.
"Is this your first?" 
"No, my second," I respond.  "I have a son at home."
"Done and done!" she exclaims.

I laughed.  And I thought, you might just be right.

Monday, January 12, 2015


Yesterday, I didn't cry.  Well, not until turning off the light when Justin told me that not crying for a day doesn't mean that I don't love my daughter.  I teared up then.  But in general, yesterday I was able to stock up on cheap wine at Trader Joe's and even make a short bit of small talk with the check out girl (no, we're not having a party.  Yes, this is all for us) and go to the library to check out more books on grief for me and more books about trucks, tractors, and Elmo for Ben and sit and talk with a good friend about my daughter.  I felt lighter and more hopeful than I do many days.  Yesterday, I felt like I had a handle on my grief.

But today?  Today, I am making up for yesterday.  Today, my grief feels like too big of a burden to bear. 

I'm not sure exactly why.

Maybe because last week, my always thoughtful best friend sent a potted flower to my office. Before I left on Friday, it looked like this:  
Thank you, Kate!

And walking in today, I find this:

I'm sorry Kate!  I watered it before I left on Friday, but now that it is dead, I realize that I had put the plant above a heating vent.  My mom says maybe it will come back to life, but I don't feel very hopeful about that.

That fucking dead plant set me off.   And I haven't stopped since.

I saw that dead plant and I thought, you can't even keep a plant alive, much less your baby.  My head knows that it's not my fault that my daughter died.  But sometimes my heart still holds on to the guilt.  And sometimes my heart says mean things. 
Or maybe it's the article my sister is writing about Lydie and stillbirth for the Washington Post.  She said she wants to raise awareness about stillbirth, wants to save other babies.  Today, I don't want to save other babies.  Today, I just want to save my baby.  Today, I can't even read the draft she emailed me much less imagine it in print in national syndication.  Today, I don't want to share Lydie with the world, I want to keep her to myself.

Or maybe it's because today, if this world wasn't so fucked up, Lydie would be one month old.

Today, two coworkers stopped to talk to me and I could barely make eye contact with them.  Today, a completely well-intentioned coworker who happens to have a pregnant wife asked if I'd like to talk more, and I responded no.  I think it's the first time I have turned down the opportunity to talk about Lydie.  Today, I couldn't wait to be alone and I couldn't bear the possibility of him mentioning that pregnant wife.

Today, it's been 9 weeks and 5 days since that haunting moment of the silent Doppler.  Today, it's been 9 weeks and 4 days since I held my daughter's perfect little still body in my arms.

Today, I tried to run on the track during my lunch break but found it hard to run through the tears.

Today, I feel more alone and more isolated than I have in a long time.

Today, I want to climb into a hole and come out when the hardest part of this grief work is over.

Sunday, January 11, 2015

My best distraction and my most painful reminder

I can't imagine losing my first child to stillbirth.  I can't imagine coming home from the hospital with empty arms to such a quiet house.  I walked in from the hospital and the first thing I heard was "Mama!" and I've never been so grateful for that word.

Benjamin is our best distraction right now.  He is our best chance to feel any semblance of joy.

Still, with that joy comes the sorrow.   I never realized how intertwined those feelings could be.  Every new milestone Ben reaches is a reminder that Lydie never will.  Every happy moment I share with Ben, I am thinking how his sister should be part of these moments.

Benjamin is a constant reminder of all that we've lost.  

When I was pregnant with Lydia, I asked Justin, "Do you think we'll appreciate all the little moments with Lydie, stay a little more patient through the hard moments, because we know how quickly they will go by?"  When Ben was a colicky newborn who had to be held at all times, my mom told me colic usually passes by 3 months. "Three months?!" I responded as if it was inconceivable that I could hold out that long.  And now?  Those three months are an eternity ago.  I wondered if the second time around, I'd understand how quickly my child would grow up.... how soon all the tough moments would feel like distant memories.  Now we've had 21 months of moments with Ben, and so I know exactly what we should be experiencing with Lydie right now.

I remember the moment Ben was placed in my arms.  The overwhelming love I felt for him.  Like no love I'd ever felt before.

And I felt that way with Lydie too.  The overwhelming love.  Except it was mixed with horror and disbelief and pain, pain, pain. 

Last week at work, I ran into a colleague for the first time since Lydie died.  He told me he'd been thinking about me, that he was so sorry, all the usual things I hear when I see someone for the first time.  Then he asked about Ben.  His son is a month younger than Ben.  I think he thought that this would be a pleasant subject to talk about.  You know, how much does he talk?   Isn't it crazy how much they understand?  Isn't it hard to believe how grown up they are?  But instead, it just made me so damn sad.  It made me wonder what Lydie's first word would have been.  What she'd be like at 21 months old.  Who she would have become.  I'll never have these conversations about her, because she'll always remain a baby.  Would she have have the same giggle as him?  Would she always push the limits, like him, or would she be more laidback, more lowkey?    Would she like to joke around the way he does?  Would she be a cuddler too?

Because I'm not a first time mother, I truly understand how much I lost when I lost Lydie.

Friday, January 9, 2015

A sure thing

Something that still shakes me to my very core is how I never once, not once, thought that my daughter could be completely healthy, and yet die inside of me.  Not when I was doing everything right - taking my prenatal vitamins, sleeping on my side, exercising but not too much, attending every doctor's appointment faithfully, not drinking, not smoking.  Just counting down the days until she'd be here.

How I held my breath the whole first trimester.  Then, past the dangerous zones for miscarriage, phew!  How I held my breath again during that 20 week scan to make sure there were no abnormalities.  And how she was perfect, phew!   How I said to Justin around 28 weeks, "she could live outside the womb now and be okay!"  Phew!  We were home free.

She just always seemed like a sure thing.  I had no doubt in mind that she would be arriving soon.  I had no doubt that she'd be alive.

And all the people who perpetuated this lie.  All the random strangers who asked my due date.   All my friends who bought her clothes.  My colleagues, as we planned my maternity leave.  My doctor, who talked endlessly about our scheduled c-section but never once said, "If her heart continues to beat until then..."

I believed that because I was healthy and low-risk, my baby would be alive when she was born.

Some people have asked about trying for a healthy child, and that irks me.  Because my daughter was completely healthy, she was just dead.  Perhaps they mean I should try for an alive child?

Thursday, January 8, 2015

The new normal

I keep hearing that Justin, Benji, and I need to find our "new normal."   What does life look for us now that our daughter and sister has died? 

My problem right now is that the new normal is looking a lot like the old normal.  And don't get me wrong, the old normal was great.  I'd even venture to say I was pretty happy and content.

But now? 
Now I have flashbacks and PTSD.  Now I have trouble concentrating.  Now I cry a lot.  Now I can't get out of bed in the morning.  Now I have no appetite and not much motivation for life.  Now I can barely talk with my own friends and hate seeing pregnant women and babies.
How's that for the new normal?

But to the outside world, we're right back where we were.  As I wrote before, the new normal seems to be the old normal with a giant fucking hole in the middle of it.

Is it possible that my daughter died and my life doesn't change? 

Wednesday, January 7, 2015


Whenever I hear anyone say the word "daughter," a knife stabs my heart.

It's like what just happened right outside my office.  This is what I heard, "yada yada yada yada yada MY DAUGHTER yada yada yada."

Or when my dad said to my sister, "Laura!  Your daughter needs you!"

The word alone hurts my heart.

I am well-aware that people are not throwing the word daughter casually around just to hurt me.  I am well-aware this is just a common word used in our society.

Maybe it's those heightened senses, catching that word "daughter" even when I don't hear anything else.

I think it would have been different if Lydie was a boy; afterall, I have a living son.  I can't imagine the word son ever being so painful.

Sometimes it's the little things that hurt my heart the most.  Because I'm not always prepared for them.  Because no one else even notices that word, so no one knows how painful that moment is for me. 

What I didn't know about grief

All senses are heightened.
Voices are loud.  They hurt my head.
Crowds are a big blur. I feel like I am drowning in them.
Lights - especially flashing ones- make me feel like I'm tripping.  Or sometimes, like I can't breathe.

I wonder if this is how people with autism feel.

I've been a bit protected by these heightened senses in the last two months as I've mostly hunkered down in my Fortress of Solitude.  Now, as I slowly start to integrate myself back into society (I am turning down lunch invitations but I have to go to work everyday), I find this part of grief makes it hard to function normally.

I can tell my sister she's talking too loud.  I can't exactly tell my coworker.

Tuesday, January 6, 2015

Dear Lydie, Today it's been two months.

Dear Lydie,
Today, it’s been two months.  Two months since we held you, kissed you, read to you, told you that we love you.  Two months since you were in our arms.   Two months since I held your perfect little hand, desperately wishing you would squeeze back.  Two months since you were born still into this world.  This beautiful, cruel world. 

If you were here with us now, you might be starting to smile.  You’d probably always be hungry and I’d be juggling breastfeeding you and stopping your brother from climbing on things he shouldn’t (which is just about everything).  It’s cold today, so I’d be dressing you in one of those warm fleece outfits I bought you.  You might finally be fitting into your 3 month clothes at this point.  We’d be setting you up next to the chalkboard that says “2 months” and we’d marvel at how big you’d gotten, how much you had changed already.   

We might be thinking about moving you from the pack n play in our room to your own crib in own bedroom.  I’d start throwing on an extra layer to get out of bed to come to your room in the middle of the night.  I’d probably be reminding myself to enjoy those quiet moments with you, while everyone else was sleeping, reminding myself that this too shall pass and I’ll miss the moments when it was just you and me in the dark and the quiet.  I’d be reminding myself of that because I’d be so sleep-deprived, and your mama has always liked her sleep.  But you’d be worth it.

I often find myself still completely shocked that this is my life.  That this is my life without you.  That you’re not here, no matter how much I wish you were.  That you’re not here no matter how much research I do, no matter how much I try to figure out where we went wrong.    That you’re never coming back, no matter how much I dream of that.

Instead, we light a candle for you every night at dinner.  And while Ben starts throwing his food, your dad and I stare at that candle.  And miss you like crazy.  And wish, wish, wish, wish that things were different.

This morning while dropping Ben off in his room, a baby was screaming in the infant room.  “Baby?”  Ben said and pointed at the door.  I keep thinking my heart can’t be any more broken.   But these moments hurt my broken heart more than I could ever imagine.

I don’t know where to go from here.  I don’t know how to continue living.  I don’t know how to leave your brother at daycare when he’s crying.  I don’t know how to go to work and do my job.  I don’t know how to think about anything but you.

I don’t know how to think ahead, about trying again, when it’s the scariest thing I could possibly imagine but also perhaps the most hopeful. 

I don’t know where to go from here.

I remind myself one day at a time, one moment at a time.  I miss you like crazy.  I wish you were here.  And I’m so, so sorry.

I love you,

Monday, January 5, 2015

The Rabbit Hole

An experience like this is completely isolating.

And yet, there are so many women who have had similar experiences.  And who are open about it.
Who blog about it, just like me.

I spend a lot of time on these blogs.  I click and read, click and read.  Digging myself deeper into the rabbit hole.

I ignore my own life for hours, reading their stories.   Sometimes it makes me feel worse.  I read one story about her daughter's stillbirth and thought it sounded just so horrific, so unimaginable.  And then I realized: this sounds just like our story.   I cried for her.  And I cried for myself.

I've read about women who have had TWO stillborn babies.  Holy shit. 

Often times, it makes me feel better.  Less isolated.  Less crazy.  More hopeful (especially the stories about their rainbow babies.  I love all their rainbow babies.  It's like I just wrote about how I can't stand to see babies or pregnant women... but what I mean is that I can't stand to see babies or pregnant women... unless they've already had a loss.  And then I find it hopeful.  I understand this is not rational).

It's hard to emerge from the rabbit hole.  There are hundreds of more stories I want to read, women I want to connect with.  It's hard to come up for air.

But at what point is it unhealthy?

I asked Justin this question.  He noted that I seem to be in the rabbit hole quite a bit.  And if he's noticing, that means I'm choosing to be in the rabbit hole rather than spend time with him and Ben.

Why is it easier to be in the rabbit hole than present for my own my husband and son?

Two months

Two months ago, my daughter died.
Actually, that's not true.
I don't actually know when she died.
But two months ago, I found out she was dead.

Two months ago, my husband and I drove to the hospital so I could deliver our baby girl.  We drove to the hospital without the baby seat in the back.   We didn't pack the Boppy that was set aside for our hospital visit.  We did pack the little sister onesie I bought for Lydie the happy day that we found out she was a girl, but she never got to wear it.

Two months ago, my labor was induced.

Two months ago, I was waiting to give birth to death.
To my perfect, dead daughter.

Two months ago, I was still in absolute shock.

The worst day of my life.

Sunday, January 4, 2015

A note to my friends

It's occurring to me that I'm probably sending mixed messages to my friends.  Or maybe it's not that - maybe I'm actually sending the wrong message to my friends. 

Most of my friends have been amazing.  Take one of my college roommates, who has written me a message every single day since Lydie died.  She has not missed a day.  She just keeps telling me she's thinking about me and she loves me.

I usually don't respond.
And that's giving the wrong message.
Because I so appreciate her efforts.
I am grateful each and every time one of my friends checks in with me.

But I often find it hard to respond.
I just don't know what to say.

The phone rings and I feel paralyzed.  I don't pick up.
I don't know what to say.

She's still dead.  And I'm still struggling.
But I appreciate you thinking about us.

And in these friendships, I know I am take, take, taking right now.  I know friendships are all about give and take, and I am grateful for the friends who seem to innately understand that I have nothing to give right now.  The ones who are sticking with me through this hellhole, even though it is so freaking uncomfortable.  The ones who don't talk about God or a bigger plan but just continue to tell me they love me and they're there.

So friends, thank you for continuing to reach out even though I may not respond.  It means more to me than you'll ever know.

And by the way, I also really like when people comment on this blog.  It's so strange to talk to people and have no idea if they are following our story or not.

(And I just heard that my 12th grade English teacher is reading regularly.  She told my mom that I am a really good writer.  I'm like, "well, she taught me how to write!"  So thanks, Mrs. Fouser).

Our grief mentors

My aunt and uncle came to visit this weekend, driving 6 or 7 hours to see us.  Even though out of all my many aunts and uncles, they are the ones I am closest to, it wasn't your typical visit.  Their son, Michael, died when he was 5 days old.  16 years ago.  And no, they're not over it.  Losing a child is not something you get over.  It's something you learn to live with, something you might become resigned to even if you never quite "accept" it, something that settles deep in your soul and changes who you are and how you see the world. 

And since Lydia died, they have been a kind of mentors to us in our grief. 

They tell us we're doing all the right things.  We're seeking out support in the form of groups and counseling.  We're communicating with each other.  We're writing and talking, talking, talking about Lydia.  We're framing photos of her, lighting a candle every night at dinner, finding our rituals that will help include her in our family.

We spent all weekend talking about our children and our experiences.  We did not run out of things to say.  And even though our stories are different, the grief is so very similar.

This morning when saying goodbye, they told me we are doing great.
This is what great looks like?

We are muddling through.

Friday, January 2, 2015

I am here.

I cried the whole way to work.  And I have a long commute.  But the sky looked like this, and I pictured Lydie up there:

I listened to Ingrid Michaelson's "All I can do is keep breathing..." and reminded myself this is true.  

And in my office, many signs that the world stopped turning: my wall calendar still on November, the desk calendar still on November 4th. 

This didn't help stop the tears.

My folder marked "maternity leave" with all my detailed plans.  The insurance paperwork with "Lydia J " written by the person I was before, to add my girl to my insurance.  My detailed timeline to train tutors and complete it all by December 10th, my last day in the office before my baby girl was to be born.

One sign that the world is, in fact, still spinning?
The moldy leftovers in my mini-fridge.
Don't worry, I'll spare you the photo of that one.

Thursday, January 1, 2015

I miss her.

I really miss her.

It's strange, how I can desperately miss someone I never even got to meet.

I miss her in her bouncer next to us when Justin, Ben, and I are eating dinner.
I miss her in her pack n play next to us while we sleep.
I miss her cry.
I miss being sleep-deprived after waking up multiple times in the night to feed her.
I miss dressing her in one of those cute outfits I bought for her.   I miss her spitting up all over herself and dressing her again.  

I wonder if she would have been a baby who demanded all our attention, the way her brother was.  Or if she would be, like I was hoping, easy.

I wonder what color her eyes were.  I wonder if they would have changed.

I miss who she would have been, could have been, should have been.
I miss the girl I thought she would become.
I miss the first day of school and soccer practices and summers at the pool and cottage and her fighting with her brother.

In this video, Kai's mom talks about losing her son.  She explains that when someone close to you dies, it's often about finding your way without him, like picking up the phone to call him and realizing he won't, he can't, answer.  But losing a baby?  It's going back to the way things were before.  And that's the most hurtful part of it, when you're so ready for your life to change to welcome this little one.
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