Worst-case scenarios

I didn’t realize it at the time, but after Zoe was born, I developed postpartem anxiety, the lesser-known cousin to postpartem depression. When you become entirely responsible for another person’s life, you suddenly become hyper-aware of everything that can go wrong.

Car accidents were my worst fear. Every time Zack and/or Zoe would leave the house, I wondered whether I would ever see them again. I spent a lot of time thinking about how Zack and I will die. Will we develop cancer in our 40s, or earlier? I remember one week where I kept thinking how, if Zoe lives the long and prosperous life that I want for her, I won’t ever know how she dies, won’t be there at her deathbed. Really morbid stuff.

The anxiety eventually subsided, though it always lingered in the background. Events in the news might trigger a flare-up, like the time that a plane crashed into a house in a local suburban neighborhood. They found the mother in the bathtub, clutching her newborn and her 3-year-old son. Or the time four children and their grandparents died when the grandparents’ desiccated Christmas tree caught fire and burned their house to the ground. Before I became a mother, I would have lamented these tragedies but moved on. Today, they are etched in my mind and I think of them often.

In 2014, Zack and I both totaled our cars within three months of each other. No one was injured, but that didn’t help matters.

Now the stillbirth, and the anxiety is full-bore again. Nothing seems safe anymore. After all, the womb should be the safest place of all, but it couldn’t keep my full-term baby alive. And so I find myself shaken by stories of people, particularly kids, suffering from severe conditions, such as cerebral palsy or round-the-clock epilepsy. I used to be able to look at the likelihood of such developments and take comfort that they are incredibly rare and probably wouldn’t happen to me. But when you’ve had something incredibly rare happen to you—stillbirths occur in 1 of 160 pregnancies, or a little over half a percent—the numbers no longer comfort you. It happened to me before. It can happen again.

I don’t know much about panic attacks; I purposely haven’t read up on them so as not to induce more anxiety. I don’t know what they typically look like, other than that some people become unable to breathe. Mine aren’t like that; they happen when a morbid thought becomes lodged in my brain and I become convinced that something specific is going to happen. A sense of panic and dread will crest into a full crescendo if I don’t squash the thought the second it forms.

One night I was giving Zoe a bath and getting her ready for bed. Zack was at kung fu and wouldn’t be home for hours. Suddenly, I became consumed by the thought that I was going to die of an aneurysm, right there by the bathtub. Zoe would be terrified and would climb out of the bathtub and somehow become seriously injured or killed. Or she’d somehow get out of the house.

Another time, I was reading an essay by a woman with stage IV metastatic breast cancer. I started thinking I was going to die of breast cancer at age 45; Zoe would be only 13. The morbid thoughts are that specific; I don’t know why.

How to arrest these thoughts in their tracks? I suppose I could stop reading the stories of breast cancer, round-the-clock epilepsy, and cerebral palsy. But like a bad car accident, I can’t look away. And I feel if I know about these things, I can plan for them, let them play out in my mind and figure out how I would handle them, and that brings me back down to earth.

My grief counselor says I shouldn’t do that—because I could make a detailed plan for a worst-case scenario, and then things wouldn’t turn out the way I’d planned because things rarely do. My 37-week pregnancy certainly didn’t.

Ultimately it’s about coming to terms with your own mortality and that of those you love. We don’t know how long we have on this earth. Every single day is a gift. Cliches, I know, but they’re what I hold onto in the dark hours.

Schrodinger’s cat

There’s a thought experiment in quantum physics called Schrodinger’s cat. It goes something like this: Imagine there is a cat in a box with a radioactive source and a poison. If radiation is emitted, the poison is released and the cat dies. If it’s not emitted, the poison is not released and the cat lives. Until the box is opened, the cat is considered simultaneously dead and alive.

I don’t pretend to understand this by half. I don’t get why Schrodinger came up with this thought experiment, and why it’s so specific. (And as a cat lover, I wish he would have found another analogy!) But in my interpretation, it’s an explanation of alternate realities—the idea of parallel universes and how they are all simultaneously real. Like that Star Trek: Next Generation episode in which all the Enterprises from different universes converge on the same place.

Maybe there’s another reality in which I am also schlepping around in glasses and sweats, half-disheviled and slightly out of my mind, but not because I Delivered a Dead Baby. Because I delivered a live baby, and my world has become about my weeks-old newborn and nothing else. I’m surviving on little sleep, not because I lie awake at night consumed by thoughts of what might have been, but because I’ve been feeding my baby around the clock.

In this other reality—the one I’d been planning for so many months—I have two kids in diapers and am complaining about how much laundry I have to do. I’m struggling to figure out how to get two kids ready to go and into the car. Give two kids baths, hold two kids in my arms while I read a bedtime story. How to devote energy and attention and love to my 2-year-old while making sure my newborn is fed and safe and clean.

The other me is probably complaining about all of this. Or maybe she senses this me, and she holds her tongue. Realizes that she is the lucky one. Is grateful that they made it out alive.

Guinea pigs (AKA Effin’ Doctors)

In 2009, I contracted Lyme disease. I don’t even know how, as we were living in urban Frederick at the time. I had a fever and some muscle aches and then noticed a bull’s-eye rash on my back.

I found a specialist, and thus was my rude introduction to the controversial, little understood world of Lyme disease. It often goes undiagnosed because titers can yield false negatives, and some doctors don’t believe it remains in the body long-term. The medical community is split down the middle on how to diagnose and treat it.

I recovered quickly; I was one of the fortunate ones. Some people suffer debilitating symptoms for the rest of their lives (if you believe the Lyme activists).

In 2013, Zoe was born. Right away, I had problems with breastfeeding. It was excruciating, even though it’s not supposed to be, and it soon became clear that Zoe wasn’t getting enough to eat. The lactation consultants at my hospital weren’t much help. The pediatrician was no help; she just told me to supplement with formula. The pain eventually got better but for months I struggled with low supply. I fell into a mild depression. All I wanted to do was feed my baby like so many other moms could seemingly do effortlessly.

After about six months I was doing some research online and stumbled upon my tribe: a whole host of other mothers, also struggling with low supply. And for all kinds of reasons: thyroid disease, PCOS, hormonal imbalances, something called insufficient glandular tissue. These sisters had taken it upon themselves to educate and help each other because here again, the medical community is not much help. Many lactation consultants dismiss low supply; they just tell new moms that as long as you’re feeding baby often enough, you won’t have a supply problem. (Yeah, tell that to the moms who are taking fenugreek until they smell like maple sugar, feeding baby around the clock, pumping after every feed, drinking lactation tea and a gallon of water every day, eating oatmeal at every breakfast, and still not producing enough.) As far as doctors go, it’s hard to find ones who will do the tests to help you figure out which underlying medical issue you might have. And pediatricians are the worst; most of them don’t lift a finger to help mom figure out what might be the problem and instead just push formula.

With the help of my newfound community, I located a new lactation consultant. She came  to our house, heard my story, watched Zoe nurse, and sent us to a pediatric dentist to have her tongue and lip ties revised. Yes, it turns out that a tongue tie is actually a thing. And tongue and lip ties can interfere with breastfeeding, make it painful, and cause milk supply to never be fully established because the baby cannot feed properly.

Guess what? Tongue and lip ties are not fully understood or recognized by the medical community, and there’s disagreement and confusion about diagnosis and treatment. Many doctors and lactation consultants will look in the mouth of a clearly compromised baby and declare there to be no ties. I belong to tongue tie support groups and have seen some of the pictures and just shake my head at how the diagnosis could be missed. Then these poor moms have to drive around to all these different dentists and ENTs before they find one who will actually listen to them.

How to treat tongue ties is a whole other question. Some do it with laser and some surgically. Some recommend chiropractic and cranial sac therapy as aftercare while others just send moms home with instructions for some simple stretches.

We had Zoe’s ties revised and nursing got better but I think they grew back, and by then it was way too late to do anything about my supply. Zoe had started solids at that point anyway and it mattered less and less as time went by. I ended up nursing her for 20 months, which I was really proud of because it was so, so hard for a long time.

Now, we come to Luke’s stillbirth. It turns out that stillbirths are—wait for it—poorly understood by the medical community. Apparently your full-term baby can just up and die inside of you after an otherwise normal pregnancy, and the doctors have absolutely no clue as to why. And kick counts, one of the few things that could actually possibly prevent a stillbirth, are—you guessed it!—controversial. Are you sensing a theme here? In the U.S., the Count the Kicks campaign says that third trimester babies should kick or move at least 10 times every two hours. Over in the U.K., the Count the Kicks campaign says frequency and pattern of movement is unique to each baby and as long as your baby is doing what is “normal” for her, you should be fine. Meanwhile, my eight-month-pregnant friend’s doctor told her, “We don’t really tell people to do kick counts anymore.”

By this point I’ve pretty much given up on the medical community. You have to work so hard to seek out professionals you can really trust, who a) you’re confident they know what they’re doing; b) if they don’t, will go to the ends of the earth to look for an answer; and c) will listen to you and not roll their eyes when you show them something you found online or in a book.

My grief counselor told me that Luke’s life is not meaningless because he taught us things, brought us gifts. The gift of empathy, of living in the moment. And for me, the gift of learning to speak up for myself. Through all of these experiences I was never really a self-advocate. I just listened to what the professionals had to say and took it at face value, often without really understanding. This tragedy has changed all that. I will speak and speak until they listen and if they don’t listen, I will go somewhere else and find someone who does. That’s Luke’s gift to me.

Autopsy report, part 2

I talked to the state’s social worker on Monday about finding out the status of Luke’s autopsy report and whether we could get a written copy instead of just a phone call. I hadn’t heard back, so I emailed her for an update. She called back and said that an autopsy had been declined because my daughter’s death at 38 weeks had been considered natural.

Zack and I lost it.

We requested an autopsy, I told her. I signed paperwork authorizing it. I had a son, not a daughter. And I was 37 weeks, not 38. Are you sure you even pulled the right case, I asked her? I’m freaking out right now, I said.

She apologized and said I should speak directly to her organization’s executive director. She gave me the phone number. I called right away and left a message explaining the situation and telling her that I was highly distraught. Within a few minutes, the woman called back. She asked me a few questions and then explained that it was the state medical examiner’s office that didn’t do an autopsy, that they defer to local hospitals in such cases, and that the hospital would have conducted the autopsy. She said the hospital is probably still waiting for lab tests to come back and that is the likely reason for the delay.

Well, Jesus. I wish the social worker had been better informed of how these things work. Isn’t that her job? She could have bypassed the medical examiner’s office and gone straight to the hospital to begin with—preventing us all this heartache in the meantime.

The executive director then offered to make some calls on Monday and try to find out more about the status. She kept getting the name of the hospital wrong, but we finally squared it away. (Franklin Square Hospital? Frederick Square Hospital? Oh, Frederick Memorial Hospital? Got it).

So, that’s where we are now.

I want my brain back

There are times these days when I barely recognize myself. Before stillbirth, I was a planner, an organizer, a multitasker with a sharp memory and a to do list. After stillbirth, I can often barely focus on one thing at a time, and for mere minutes at that. I’m consumed by thoughts of what happened, enveloped in a mental fog.

Here are some examples.

I walk into the kitchen to make lunch. Somehow I manage to get that started without setting anything on fire The cats are trailing me, meowing. They want to be fed. Suddenly I remember I needed to return a text. I pick up my phone and spend a minute or two typing. I check a comment on Facebook. I look up how long brown rice is supposed to cook for. I put the phone down. The cats are still staring at me and hanging out by their dishes. I have no idea whether I just fed them or not. (You can’t put any stock in what the cats say. I can’t tell you how many times Zack and I have had this conversation: You fed the cats? But I just fed them!) I feel the opened can of cat food in the fridge. It feels cold so I figure it’s been in there for a while, and I feed them—but I have this nagging feeling they just tricked me into feeding them twice.

I’m leaving to drive somewhere and I catch myself getting into the passenger side.

I get my phone and sit down at the table to make some calls. One of the calls requires my credit card. I go over to my purse to get it and read off the number. I finish the call and walk away to do something else. Later I suddenly remember I’m expecting a return phone call about something. I look for my phone on the charger but it’s not there. I stand befuddled in the kitchen for several minutes. I can’t form even a single thought as to where it might be. I walk around the house for a little bit in a state of confusion. Eventually I am able to retrace my steps: I was making phone calls and had it at the table; oh yeah, then I went to my purse. And there it is, in my purse. Why did I put it in my purse?

I miss my brain. I hope someday I get it back.

Tightrope

Right now my grief is about trying to find balance. If I let myself, I could easily lie in bed all day and cry. But I know that’s a hole I would never climb out of, so I force myself to do other things. On the other hand, not crying at all wouldn’t be healthy either. So what amount of crying is the right amount of crying? When do you stifle the tears, and when do you let them flow? On Planet I Delivered a Dead Baby, what is the right balance between feeling shitty and going through the motions?

It’s like this with a lot of things. On Facebook (which I have hated a little bit for a long time, and for which my loathing grows every day), there are many, many support groups for pregnancy and infant loss. Way, way too many. There’s S.O.B.B.S. (Stories of Babies Born Still). October 15 Pregnancy and Infant Loss Support Awareness Day. Pregnancy and Infancy Loss Support, October 15. Postpartum Depression, Anxiety or PTSD after Pregnancy/Baby Loss. Stillbirth Babies – Forever in Our Hearts. Trying to Conceive after Pregnancy or Infancy Loss. Those are just a few. Sometimes that’s great; it normalizes the loss, makes you realize how many other people this happens to and that maybe this isn’t your fault after all. And you can post about something you’re experiencing, and other people who have been right there can tell you how it played out for them. I made a new friend in one of these support groups; we text almost every day. Her baby was stillborn two years ago, so she can give me some insight into where this journey might be headed. And you can offer that same kind of support to other people, pay it forward, and you feel a tiny bit better.

But then other times, you’re innocently scrolling through your news feed—maybe you just looked at a stupid Buzzfeed list or a funny Scary Mommy post—and then bam, there it is, and you’re like, shit. I Delivered a Dead Baby. And before you know it you’re grieving all over again.

Then there’s stillbirth awareness resources, information about why this happens and how to prevent it. I want to know, need to know, why Luke died. Not just for him and me, but for (God willing) our next baby. I downloaded a book called Silent Risk by Dr. Jason Collins, apparently the only doctor in the world who knows very much about stillbirths. The book is about all the things that can go wrong with the umbilical cord, how little the cord is understood, and how, because of that, there’s really not much anyone can do to prevent these things (e.g., home monitor he invented for pregnant moms who’d had previous stillborns is no longer on the market). After downloading the book, I read 32 pages. That night I had a panic attack. I haven’t picked it up since.

I am teetering on the bridge between raw, fresh grief and “normal” life. I have to keep my balance so I don’t plunge into the oblivion.

Playlist

It’s a love-hate thing with music these days. It’s hard not to hear something in every song that reminds you of your situation. You’ll be driving somewhere, thinking you’re OK, you’re going to beat this, and then a lyric comes along and drives you into the ground.

Other times, those songs take you deep into your grief and that somehow brings you solace. I have a playlist for Luke. It’s filled with songs of loss and redemption. Some of them excerpted below.

What songs help you get through hard times? Post your favorites in the comments.

Silent Lucidity (Queensryche)

Hush now, don’t you cry
Wipe away the teardrop from your eye
You’re lying safe in bed
It was all a bad dream
Spinning in your head
Your mind tricked you to feel the pain
Of someone close to you leaving the game of life
So here it is, another chance
Wide awake you face the day
Your dream is over… or has it just begun?

Landslide (Fleetwood Mac)

I took my love and took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow-covered hills
Till the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Anthem (Leonard Cohen)

The birds they sang
at the break of day
Start again
I heard them say
Don’t dwell on what
has passed away
or what is yet to be.
Ah the wars they will
be fought again
The holy dove
She will be caught again
bought and sold
and bought again
the dove is never free.

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

I Am a Rock (Simon & Garfunkel)

Don’t talk of love,
But I’ve heard the words before;
It’s sleeping in my memory.
I won’t disturb the slumber of feelings that have died.
If I never loved I never would have cried.
I am a rock,
I am an island.

I have my books
And my poetry to protect me;
I am shielded in my armor,
Hiding in my room, safe within my womb.
I touch no one and no one touches me.
I am a rock,
I am an island.

And a rock feels no pain;
And an island never cries.

Rhino Skin (Tom Petty)

You need eagles wings
To get over the things
That make no sense
In this world

You need rhino skin
If you’re gonna pretend
You’re not hurt by this world

If you listen long enough
You can hear my skin grow tough
Love is painful to the touch
You must be made of stronger stuff

Bittersweet Symphony (The Verve)

No change, I can change
I can change, I can change
But I’m here in my mold
I am here in my mold
But I’m a million different people
from one day to the next
I can’t change my mold
No, no, no, no, no

Well I never pray
But tonight I’m on my knees yeah
I need to hear some sounds that recognize the pain in me, yeah
I let the melody shine, let it cleanse my mind, I feel free now
But the airways are clean and there’s nobody singing to me now

And So It Goes (Billy Joel)

But if my silence made you leave
Then that would be my worst mistake
So I will share this room with you
And you can have this heart to break

And this is why my eyes are closed
It’s just as well for all I’ve seen
And so it goes, and so it goes
And you’re the only one who knows

Human Touch (Bruce Springsteen)

I ain’t lookin’ for prayers or pity
I ain’t comin’ ’round searchin’ for a crutch
I just want someone to talk to
And a little of that human touch
Just a little of that human touch

Ain’t no mercy on the streets of this town
Ain’t no bread from heavenly skies
Ain’t nobody drawin’ wine from this blood
It’s just you and me tonight

Wake Up Time (Tom Petty)

You follow your feelings, you follow your dreams
You follow the leader into the trees
And what’s in there waiting, neither one of us knows
You gotta keep one eye open the further you go
You never dreamed you’d go down on one knee, but now
Who could have seen, you’d be so hard to please somehow
You feel like a poor boy, a long way from home
You’re just a poor boy, a long way from home

And it’s wake up time
Time to open your eyes
And rise and shine

Learning to Fly (Tom Petty)

Well some say life will beat you down
Break your heart, steal your crown
So I’ve started out for God knows where
I guess I’ll know when I get there

I’m learning to fly, but I ain’t got wings
Coming down is the hardest thing

Let It Be

And when the brokenhearted people
Living in the world agree
There will be an answer, let it be
For though they may be parted
There is still a chance that they will see
There will be an answer, let it be

Somewhere Over the Rainbow/What a Wonderful World (Iz)

Someday I’ll wish upon a star
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney top
That’s where you’ll find me

Time to Move On (Tom Petty)

Broken skyline, which way to love land
Which way to something better
Which way to forgiveness
Which way do I go

Time to move on, time to get going
What lies ahead, I have no way of knowing
But under my feet, baby, grass is growing
It’s time to move on, it’s time to get going

Wildflowers (Tom Petty)

You belong among the wildflowers
You belong in a boat out at sea
Sail away, kill off the hours
You belong somewhere you feel free

Run away, find you a lover
Go away somewhere all bright and new
I have seen no other
Who compares with you

You belong among the wildflowers
You belong in a boat out at sea
You belong with your love on your arm
You belong somewhere you feel free

Run away, go find a lover
Run away, let your heart be your guide
You deserve the deepest of cover
You belong in that home by and by

You belong among the wildflowers
You belong somewhere close to me
Far away from your trouble and worry
You belong somewhere you feel free
You belong somewhere you feel free