Trauma…anger…understanding…acceptance

I am grateful. Grateful for the many gifts life has given me- health, family, work, financial stability, friends, freedom. It’s how I get through my days.  But every now and then I need to process some uglier feelings. I think it’s important to show that grief has many faces- that the instagram and pinterest-worthy grateful griever is an unrealistic ideal.  Yes- I am grateful, but I am also sad and angry and jealous and frustrated. I hate that I feel the need to preface this post- but I want people to know I”m not angry all the time…it’s just one of my feelings, perhaps the most difficult of them all.

***

PTSD is common after perinatal loss. I haven’t been diagnosed with PTSD but my therapist and I talk a lot a bout how the trauma of my pregnancy with Mabel and losing her after birth still affects my daily life.  I’ve struggled with framing my daughter’s death as a trauma- I feel this immense pressure (self imposed) that since I had so much notice- months- to prepare for my baby’s likely death, I should have handled and still be handling it all better.

But the tentacles of trauma reach long and far, in ways that surprise and frustrate me. I still cannot react to pregnancy news in the way I once was able, in the way that I wish I could.  I recently learned that many of my close friends were pregnant- life events that are wonderful.  But instead of being able to share in their joy, I retreated because I found the only feelings I could express were jealousy and even anger- reactions my friends did not deserve at all.  Even though I’ve sat with these pregnancy announcements for months I still feel angry. It’s a misplaced emotion, I know.  Of course I’m not angry at my friends for being pregnant. I’m angry that my daughter died and all that came with her death. I’m still angry.

• I’m angry that I had such a traumatic pregnancy- one emotional blow after another
• I’m angry that I lost the blissful ignorance right away, never allowed to think “oh everything will be fine” with her pregnancy or my subsequent pregnancy- and watching others with their well deserved bliss brings up that anger.
• I’m angry that my daughter didn’t get a baby shower. I’m angry that I cancelled the shower. I’m angry that I didn’t celebrate her more. I’m angry that I didn’t know how to, because there is no handbook on how to do what I did. Baby showers are still hard- a reminder of what I lost.  Sometimes I go, sometimes I don’t.
• I’m angry that making mom friends is hard because bringing up my dead daughter always makes the get-to-know-you small talk awkward.
• I’m angry that others don’t have to struggle with these issues, making me feel even more alone.

And as I grapple with this anger, I struggle with the need to rely on my friends to help me process it all and dealing with their misunderstanding.  No one has said to me straight up “waiting for and then watching your daughter die is not a traumatic event.” However people have said to me “Really? You still feel that way? Even three years later? Even after Felix?” When I hear those sentiments, I am reminded that those who have not lost a child will never understand- how could they? I’m slowly realizing I can’t expect others to understand my trauma, my reactions, my anger and my grief, as foreign and weird as they may seem. But I hope that they can accept it, as part of who I am.

****

Are you angry? How do you cope?

 

 

 

G3

In the OBGYN world we describe a woman’s pregnancy history in terms of G’s and P’s.  There is an alpha numeric code that tells the story- “GTPAL.”

G stands for gravida. It’s the number of times a woman has physically been pregnant.

T is for term- the number of term pregnancies a woman has had.  Any baby born at 37weeks or after counts here.

P is for preterm births, those babies born after 20 weeks but before 37 weeks.

A is for abortion. This is a medical term, not a political one.  Medically we call any end of pregnancy before 20 weeks an abortion.  It may be spontaneous, aka a miscarriage. It may be elective, aka a termination.  A also includes ectopic pregnancies.

L is for living children.  No further explanation needed.

To make it even more confusing we shorten the the GTPAL to G_P_ _ _ _.  In this instance G still stands for gravida and P stands for para- para meaning the number of births (term or preterm). It might be better to explain by example:

A woman who has had one term living child with no other pregnancies would be a G1P1001 versus a woman who has had one living preterm child would be a G1P0101 versus a woman who has had one miscarriage and no other pregnancies would be a G1P0010.

It can be used to describe a pregnant woman too.  My friend who is pregnant for the first time is expecting twins.  She is currently a G1P0000.  When she has the babies, if she has them at term (fingers crossed) she would be a G1P1002.

Make sense?

So why does this matter?

As of late, I have recently added a new G to my history.

After Mabel I became a G1P0100.

After Felix I became a G2P1101.

I am now a G3P1111.

My loss story continues.  I’m having a very early miscarriage.  So early I barely became attached. But it has still stolen the breath out of me.  Did I take five pregnancy tests just to be sure? Did I figure out my due date? Sure did. Think about maternity leave? Toss around baby names in my mind? Imagine telling Felix he’d be a big brother? Dream of a living sibling for me son? Did I get excited? You bet. So when it turned out to be just a shadow of a pregnancy, a whisper of something I’ve been wanting and trying for since Felix was born, I grieved. I am still grieving. I feel broken in so many ways, untrusting of my body, unsure of my ability to be happy.  I know I will find my way out of this darkness- I have crawled out of deeper holes.  But in the meantime, I will mourn my little whisper…

 

 

My three P’s of grief survival

This week I had the honor of being the guest speaker at a local hospital’s night of remembrance- an event they put on for those who lost babies. It was a beautiful ceremony, with music, poetry and a touching sand ceremony. Here is my speech:

____

Meghanol is Program Director for Hope After Loss, the Connecticut based non profit that supports the pregnancy and infant loss community. She is also a practicing nurse midwife in the greater New Haven area. But today she is here as Mabel’s mom.

____

I was 27 weeks pregnant with my first child when the doctors told me my baby was going to die. I was thrown into a state of shock and disbelief. I had already had my share of grieving this pregnancy- I survived a threatened miscarriage early on and at 13 weeks an unexpected Down Syndrome diagnosis caused me to grieve the loss of the child I thought I would have and work on accepting the child I was given.

And then at 27 weeks, my baby had no fluid, meaning her kidneys were damaged and lungs would be severely underdeveloped. I was told my baby would be unlikely to survive after birth, let alone pregnancy. Two months later, I gave birth to my daughter, Mabel, a 5 pound 5 ounce feisty little girl, who gifted us six sweet hours with her.
Though I can speak her story now, with a smile of pride, I struggled hard with sorrow and grief from the moment we learned she would be very sick. I was constantly looking for answers on how to do this- how to simply go on. I eventually found my way, and now two and half years later, I want to share three things I have learned help me with my grief. These are my three “P”s of grief survival.

Patience.

Practicing gratitude.

Perspective.

 

Patience

“Do you have kids?” was a question I dreaded from the time I learned my daughter would not survive. I tried out many different responses and I had to be PATIENT with myself as I learned which ones worked.

None living.

I had a daughter.

I had a daughter who died after birth.

Some answers produced a look of horror on the askers face, others were too subtle, resulting in awkward follow up questions and others still shut the conversation down completely.

Finally I settled on:

“I had a daughter but she died.” And following the requisite “I’m so sorry” I learned to say. “Thank you. And thank you for asking. I really like talking about her.”

This response took years of trial and error. Be PATIENT, Meghan. I had to figure out what felt best for me- what made me feel like I was being honest, but also protecting my daughter’s memory and keeping the conversation alive. It was arduous work at times. And just like with my grief, I had to be PATIENT with myself. Sometimes my responses were clumsy and ugly, leaving everyone feeling awkward. But with time I got better. You too will learn how and when and if you share your children with the outside world. The answer might change over time or with your audience. Just be PATIENT.

Practicing Gratitude

Not long after learning about Mabel’s prognosis, I was struck by a quote I saw floating around on facebook.

“The things you take for granted, someone else is praying for.”

I had been wallowing in a state of “life is unfair” and couldn’t figure out how to move forward. This phrase gave me some guidance. Instead of focusing on the things others took for granted- healthy pregnancies, being among pregnant women without jealousy, assumption that they would be taking a baby home and I tried to remind myself of the things I was GRATEFUL for- the opportunity to simply be pregnant, my own good health, an amazing OB team, an active baby. It was my first shot at the PRACTICE OF GRATITUDE during an extremely hard time. It didn’t take away the hurt of carrying a dying child, but it helped me find something to cling to while I felt like I was drowning in grief.

Later, after my daughter died, when the sadness started getting overwhelming, I participated in a challenge, forcing myself to find 3 good things every day and sharing my GRATITUDE about them on facebook.

I was even able to take other people’s comments and reframe them under that GRATITUDE lens. Shortly after Mabel died, a very good friend told me of his grandmother’s stillbirth experience- how the baby was rushed away before she could even see him. “At least you got to hold her,” he said to me meant as words of comfort. This was the first of many “at leasts” I heard. It took time, but I was eventually able to reframe such comments. “I’m GRATEFUL you got to hold her,” was what he meant. And I am GRATEFUL.

Perspective

After my daughter died, I felt like there were pregnant women and babies everywhere. I was in Ikea, trying my hardest to be a normal person, when I saw a woman I knew. She had a baby in a carrier on her chest and held a toddler by the hand. It hurt to see someone with everything I ever wanted right in front of me and I felt mad and jealous that other people have it so easy. I could only see her from the PERSPECTIVE of a baby loss mom.

A few months later, I attended my first walk to remember with Hope After Loss. As I worked my way through the crowd, I saw that same woman with her two young children. We were in the same club. I was there to remember my Mabel, and she was there to remember her firstborn, a daughter she lost to stillbirth. I gained greater PERSPECTIVE in that moment. Just like me, many others carry invisible burdens.

So my dear friends, I present to you what I have learned. Be PATIENT with yourself as you learn how to navigate your new normal. The path is not easy, nor one would have chosen, but it belongs to you and your baby. PRACTICE GRATITUDE- of the little things and of the great things. Find what’s good, and it will be a lifeline in your sorrow. Gain PERSPECTIVE. Remember, you are the one in four. Though you are now a member of a club your never wanted to be in, you’ll find the fellow baby loss, once they reveal themselves, among the most compassionate and supportive people you have ever met.

There is nothing that will take away the pain of losing a baby, nothing that will fix your grief… and there shouldn’t be. But there are ways to make the path we walk a little gentler. It is not moving on, leaving grief behind. It is moving forward, learning how to walk side by side with grief. Because we can never forget our babies. They are etched on our hearts, burned in our memory, our constant companions- silent but speaking volumes.

A rogue wave

As a midwife, my colleagues and I usually meet once a month to discuss protocols, clinical issues and patient care.  I enjoy these meetings because it’s rare that we actually see each other in person.  I’m in an office with maybe one or two other midwives or docs on any given day, but even then we are all busy seeing patients, often working through our lunch hour.  It’s a pleasure to spend some time face to face with my coworkers- even if it’s entirely work focused.

Recently our monthly meeting has been cancelled or rescheduled for all sorts of logistical reasons, so when we had our first one in several months earlier this week, I was looking forward to it…even though it’s at 7am.  The hour long meeting flew by and I was leaving the hospital, where our meeting is held, in a good mood.

Until I walked out the main entrance.

Sitting there as I was leaving was a woman with a newborn carrier waiting for her ride home.  My heart clenched and I was thrown backward in time. Here I was, leaving the hospital, empty handed once again.

So much has happened since that first time I left the hospital without my baby.  I returned many times- for meetings, to visit staff and friends. I even finally had the chance to leave the hospital with an actual living breathing newborn. But it had been a while since I’d been back at the hospital and it’s amazing how even though it’s been two and a half years since I said goodbye to my Mabel, like a rogue wave in a quiet sea, the grief can still hit hard out of nowhere.

I don’t spend much time actively grieving these days. I often feel that my other job- working for Hope After Loss, the non profit that supports the pregnancy and infant loss community, is my way of grieving. I get to speak of my daughter often and empathize deeply when I’m speaking new a new loss mom or dad.  What I realized earlier this week at the hospital is that though I may be honoring Mabel in my role at Hope, I still compartmentalize my feelings.  It’s protective.  Grief is hard work.

Seeing this mom and her newborn, I was reminded I still have work to do.

I miss her, my baby Mabel.

Wouldn’t it be great if it did

I finished ” When Breath Becomes Air” not too long ago. The book is memoir by my friend Paul.  Paul was sick- diagnosed with terminal lung cancer at age 36.  He and his wife Lucy were debating whether or not to have a child, knowing that his time with her might be brief. Paul wanted to leave Lucy with a piece of him- a child they had always planned on having.  Lucy worried that having a child would make his death more painful.

“Wouldn’t it be great if it did?” replied Paul.

******

There was a time when I wished none of it had ever happened.  The joy of becoming pregnant followed by shock of learning our baby had Down Syndrome and then the high risk of loss.  The gradual acceptance and even excitement that followed only to have that taken away, when we were learned she would likely die due to birth defects.  The magnitude of grief I felt after she died was overwhelming. I thought I was protecting myself by trying not to bond too much while pregnant with a baby with a life limiting diagnosis. I thought my grief would be manageable because I knew ahead of time.  I felt like there was an expectation (self imposed?) that I shouldn’t be that sad because I knew ahead of time.

When I was in my darkest times, I sometimes wished it never had happened. I would have never felt the pain. I would have just continued to live my life, innocent of such sadness, happily married, practicing midwifery.

But then there would have been no Mabel.

Now that my baby has been gone for over two years, I can see things a bit differently.  Oh yes, it hurt to lose my child- one that I had hoped for, one that I had said “yes” to under difficult circumstances.  But that pain was evidence to the great love I had.  Yes, Lord Tennyson, it is  better to have loved and lost than to have never loved at all.

 

Mabel came to dinner

I made a grand entrance, practically somersaulting onto the patio as I lost my balance and landed on my side. I cradled Felix in my arms and ended up underneath him, cushioning the fall. He cried, startled from the sudden loss of balance but was easily soothed.  We were at a friend’s birthday party at a restaurant that hosts kid friendly happy hours on the patio on Sundays, picked so that it could be a family friendly event. The weather was beautiful as we sipped cocktails and let the kids roam by the planters.  I sat with Chris and Felix and made small talk with some of the other party guests- including the birthday girl’s parents. We knew a couple people well, but most of the guests were new to us, including the parents.  As I held a squirmy baby in my lap, the common question came up- “Is he your first?” the father of the birthday girl asked.

My husband was the first to respond.  I’ve answered the question many times but I haven’t had the chances to witness my husband answer.

“He’s our second.  We had a daughter, but she died after birth.”

“I am so sorry,” the father responded, easily. “I know what it’s like to lose a child and it’s never easy. I’m so sorry.”

It was perfect.  But of course it was- he was a bereaved parent. I had known he lost his son.  When Mabel died, his daughter and I shared some moments of understanding. We talked about how even simple small talk can be daunting when someone close to you dies.  I had to get used to the “do you have kids” and “is he your first?”  She had to get used to “do you have siblings?”  These questions can make it hard to make friends or even date easily.  Or perhaps they are great screening questions- a litmus test to see if people would be comfortable cavorting with the bereaved.

Later at the party, as the food came, I heard my cousin’s voice from across the table.

“Meghan, look! Carrots!” She offered up a small plate for me to see two carrots accompanying someone’s meal.

“Awww, look. Mabel came to dinner,” I said, easily, happily.  Smiling I took one of the carrots offered and crunched.

“How did carrots become her symbol?” asked another party goer- the birthday girl’s sister. After I told her the story, she saw my necklace and pointed it out. “Oh wow! Your necklace is a carrot too.” Though I didn’t know her well, she had known about Mabel through her sister.  And she asked easily, bringing Mabel into the conversation without hesitation. Because she knows too what it’s like to be bereaved.

And just like that, my baby was at the party.  She was the center of attention, she wasn’t ignored.  She was just there.  May all my social outings be so easy.

Things I learned from Mabel’s second birthday

Don’t be afraid to ask for the support you need or want.  I dreaded last year’s birthday and was quite sad. This year I tried to think of something that would help me anticipate the day in better spirits. Throughout the year, people often send me photos of things they find with carrots, reminding me that they’re thinking of my baby. These little sentiments mean so very much to me, so I thought I’d see if I could concentrate them all in one day.

I am still vulnerable.  So. Very. Vulnerable. Yes, I may talk a lot about babyloss. In fact, I’ve made somewhat of a career out of it, with my nonprofit work and my midwifery interest in it.  However, I am still a grieving mom and a relatively new one at that. Two years is just a drop in the bucket. So I sam still sensitive to people’s remarks, or lack thereof. After some unanticipated and unwelcome commentary, I had a breakdown and found myself in a very dark place, thrown back to those early grieving days. It took some time to crawl out of that hole and even though I did, I was scarred.  The day was the slightest bit tainted.

I’m still figuring things out. Last year I encouraged random acts of kindness and had a little birthday party with cake. This year I asked for Carrot selfies and spent the day mostly by myself and had cake with just my husband.  I’m not sure what I’ll do in future years. But as I try things on, I’ll find what I like.

I miss my forever baby. Despite those early wishes, the world did not stop turning when my Mabel died. My life move forward too-my once empty arms are now filled and the constant ache has softened. But I still miss all five pounds, five ounces of my firstborn, chunky cheeks and all.

People are awesome. I asked and boy did I ever receive.  Dozens of people posted on facebook, on instagram, via email and text.  Others donated to Hope After Loss or St. Jude in her name. I was overwhelmed by the response.

Thank you- so very much.

Damned if I do….

October 2013- that was the last I had seen her.  I knew because that was the date on the last note I had written.

You had a baby! Congratulations!

Thank you, I smiled warmly.

So much has happened since I was here last!

Yes- a lot has happened. The emphasis in my words hinted at a hidden story…

Well now you really know what it’s like, huh? she jested, referencing my my former life as a midwife who hadn’t given birth, who didn’t have kids yet.

My heart beat a little faster and my head spun a little- it was the shadow of a feeling I used to know very well, in the early days.  I used to tense up- heart racing, palms sweating, chest tightening- when someone would ask “How’s the baby?” or “Do you have kids?” It’s a feeling of fear, grief, sadness, anger all mixed up, when asked a question I wasn’t quite sure how to answer.  It was a feeling of anticipation- wondering how the other person would react, how to tell of my daughter without making the situation overly awkward.

Now the situation has changed. The tense feeling has softened.  She didn’t ask if he was my first.  There was no question to respond to.  It was all assumption.  The only way she could know the whole story was if I volunteered the information, something I have yet to master in a way that feels good. I wanted to say. I sure do! Two kids since I’ve seen you last! But doing so would only lead to follow up questions- how old is your first... I’d share that she had died and the requisite polite words or unhelpful platitudes would come. And it would feel like I’m fishing for sympathy.

I chose the path of least resistance-maybe not an outright lie but a lie of omission almost. It didn’t feel great.

Not telling the whole story felt wrong, telling the whole story felt wrong.  Damned if I do, damned if I don’t.

what do you do?

 

Holiday Season Grieving

This is my third holiday season that I will be grieving my daughter, but my first without her.

Two years ago in mid December I was 27 weeks pregnant with my first child, when the doctors told me my baby would probably die.  She was found to have low fluid, a result of non functioning kidneys, which would cause underdeveloped lungs. It was just a week or so away from Christmas and we had all sorts of plans to celebrate happily pregnant with our very wanted baby. I was numb, in a haze of anticipatory grief, and so we just powered through- continuing our plans.  We got a tree, saw family, went to church.  These holiday activities were so very painful.  I tried to put on a happy face, but many of the festivities ended in tears. It was a very dark holiday.

Last year, my first holiday after my daughter died, I opted out.  It felt too painful to go through the motions again with a false smile. We did not put up a tree, we did not see family, we did not go to church.  We instead chose a small holiday- me, my husband and our puppy.  Mabel was there too.  We hung three stockings, Mommy, Daddy and Mabel.  We received many carrot ornaments from friends and family, which felt good. It was still a dark holiday but I was learning how to find some light in it.

This year, we are opting in.  We are seeing family. Four stockings are hung- Mommy, Daddy, Mabel and Felix.  We got a tree. This year we will cut a branch off the tree- a very noticeable one.  I want people to look at the tree and think, something’s missing.  It’s not right. Not complete. Because someone is missing.  My family is not complete. We will take that branch and bring it to her grave, so that Mabel can have a little bit of our Christmas too.  This holiday will still be dark, but this year I am trying to find the light.

I couldn’t do it.

I couldn’t do it.

We were out to brunch at our local spot.  I had Felix dressed in one of my favorite outfits. “Little brother” the onesie read.  I have three shirts that say this telling phrase.  One from a long distance friend who hold Mabel close in her heart.  Another from a kind patient. A third I bought, unable to resist.  He’s outgrown two of them and the third he practically busting the seams, but I’m reluctant to let it go.  I proudly dressed him in it that morning.

The waitress cooed at him and he flirted back.  “Little brother!” she read his shirt. “Where’s your sister?” she continued and looked at me.

I sat with a dumb smile plastered to my face- mouth partially open, waiting for the words to come.

I couldn’t do it.

She’s dead. She died. She’s gone.  I couldn’t find the right words.  I’ve said it dozen of times; I’ve gotten quite good at it, actually.  But in the bustle and noise of the restaurant, with the smiling waitress making fast chit chat, I just couldn’t do it.

Whether she sensed my hesitation or assumed I didn’t hear, she moved on to the next bit of chatter.

I couldn’t do it.  I’m sorry, my baby, I didn’t know how to tell her about you.  I’m sorry, Mabel.