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.

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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.

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Are you angry? How do you cope?

 

 

 

Bravery

Sometimes I need to be reminded that I’ve done some hard things. I have survived. I am brave. I am brave because….

I hung up the phone, the news of a Down Syndrome diagnosis for my baby still ringing fresh in my ears. I took a deep breath, basked in a moment of acceptance and relief, and then continued on my day, keeping my personal life and professional life separate. I continued seeing my patients that day, all pregnant with healthy babies, all while holding my news secret.

I said yes.  Yes to a baby with special needs.

I walked into the CT Down Syndrome Congress annual conference, scared but trying to keep an open mind to learn all I could about what life is like parenting a child with Down Syndrome.

I left the hospital with a likely life limiting diagnosis for my baby, choosing minimal fetal monitoring until the baby had any hope of survival, knowing that I was choosing to preserve my fertility over heroic measures for a baby that would likely die, knowing that I might forever struggle with guilt if she was stillborn before the set date we were willing to intervene.

I told the doctors to take out the vent and held my baby as she died.

I held my lifeless baby.

I handed my baby to the nurse, never to hold her again.

I left the hospital empty handed.

I continued to live life.

I went to my first support group, though I cried tears of fear in the hallway before going in.

I went back to work and told hundreds of people, “my baby died,” and continued to care for them with a smile.

I chose a new career path.

I talk about my baby to strangers, to try to break the silence.

I try to ask for what I need.

I had had another baby despite crippling anxiety that I might lose him too.

I’ve been to baby showers.

I’ve held babies.

I write about my feelings here, for all to see.

Why are you brave?

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.

 

Mattresses

I was listening to a podcast while I walked the dog this morning (yes, I know, I’m a nerd and I own it).  The podcast was about mattresses… why there are so many mattress stores and why they are always clustered together.  (#nerdentertainment) At one point it described a mattress ad explaining how buying the wrong mattress can be an 8 year mistake because it’s recommended you replace your mattress every 8 years (by whom? I don’t know).  Made me think about when we bought our mattress.

I remember the day in early december.  Chris and I were at the mattress store buying two for a trundle bed we purchased for the nursery.  The nursery seemed too big for just one baby so we figured a trundle for guests (and kids when older) would fill the space nicely.  I was 26 weeks pregnant, though it might have been hard to tell behind a big winter coat.  After picking out the mattresses we came for, Chris asked me if I wanted to test out some king-sized ones.  He knew I had been wanting one for a long time and now we had the space for it.  I jumped at the chance.  We literally lay on one that was too hard, then too soft and the middle one was just right. Our family was growing and I thought it was the perfect chance to expand our bed. When the salesman rung us up, we added a bed frame and mattress cover. He said the cover protects against all things- spills included.  “What about water-breaking” I half-joked.

A week later, I learned just how not-funny my line had been.  A week later, we learned my water would likely never break, or at least I wouldn’t know when it did because there was such little fluid around my baby.  A week later we were in the hospital, on a snowy weekend, learning the sad fate of our baby.  A week later we had to call on some friends to go snowblow our driveway and wait for the delivery guys to come deliver the mattress meant for a grwoing family.  A week later I arrived home to that mattress, the one bought for Mabel that she didn’t get to use.

The podcast made me realize I will easily know when my 8 years are up for my mattress.  The mattress is as old as Mabel would have been.

again with the birth story?

Can I tell you my birth story? Oh, I already did? Are you sick of hearing it? Can I tell it again?

I love telling my birth story with Felix. As a midwife, I enjoy birth stories in general and know how important they are to women. Shortly after graduating midwifery school, I took a weekend retreat to a place called Omega. I had just been broken up with and my life was in transition from student to real world. I needed a weekend to regroup. I signed up for a Kabalistic Healing workshop at the retreat center, quickly found it silly and ditched the workshop for yoga and tai chi sessions and general R&R. I was nervous for the meals because they were communal and I knew no one, but I found that conversation flowed easily once people learned I was a midwife. Everyone had a birth story- they told me the stories of the birth of their children, of their sister of their nieces and nephews, of their friends and neighbors. I was a hit in telling some of the birth stories of my patients (no identifying info revealed, of course)

So you can imagine my excitement and sense of fulfillment when I finally had one of my own to share. But I both did and didn’t have one to share. I love my birth story with Mabel- how I was in denial about labor, how I held her in as long as I could, how I pushed her out in just three pushes. But it’s not one I get to share often, because telling the story involves sharing that I got an epidural- something I would have otherwise hoped to avoid, but when I was in so much labor pain without the reward or incentive of a take home baby, I caved easily. I would love to share how I got the epidural when I was in transition but didn’t know it, that once I lay down after placement, I was fully dilated, that I didn’t feel a darn thing until her head was practically peeking out. But these are all details that I only want to share in the right context- that I was giving birth to a baby that would likely die. I want to be able to share my birth story with Mabel easily, but since her birth is wrapped up in her death, there isn’t a happy ending. All that pain for what? I feel like if I were to tell that story I would garner sympathy- and that’s not what I want. I simply want to be part of the club, the mother’s club, where we share our birth stories, laughing, bragging and bemoaning every detail. People don’t laugh or ask details when your baby dies.

Felix let me into that club. I was in labor for 15 min. I delivered him myself. At home. Over the toilet. Isn’t amazing?

So you may get sick of hearing me tell my birth story with Felix, because it’s two birth stories. He came fast- very fast- because he was my second. His sister paved the way so he could literally fly out. I get to tell it over and over because I don’t get to tell Mabel’s story as much.

Mother’s Day, take two

A long overdue post, but one still on my mind.

This Mother’s Day was different- gentler perhaps. I won’t deny that the growing life inside me has helped ease it, but truthfully, this Mother’s Day was still all about Mabel in my mind. She is the only child I have born, the one that has concretely, if not silently, made me a mother. Time too has eased the pain. Last year, Mother’s Day was still so fresh, less than three months after Mabel’s death, I wanted the freedom to sit and sulk all day. I was so afraid it would hurt. And last year it did hurt, but there was also a lot of beauty in it. I received a lot of love from so many people that the build up to the day was worse than the actual day itself.

This year, perhaps because of such a surprisingly good day last year, there was less build up. I panicked a bit thinking that no one would quite remember, but also knew it wouldn’t be as bad as if they hadn’t remembered the first year. My standing as a mother was no longer debatable in my mind. I think I was worried that Chris would forget.

Hah! I woke to him calling my name. At first I was a little annoyed- why was he waking me up on a day to sleep in? “What?” I croaked groggily, not hiding my grumpiness. I rolled over to see that he placed a tray next to me- breakfast in bed!

 

And later he surprised me with an even better gift- he hired our wedding photographer to come take photos during our shower the next week, with a quick sneak away maternity photo shoot.

The gift might seem all about the baby I’m currently carrying, but it was all about Mabel, really. When we learned she had Down Syndrome, I was stricken by the fear that I would lose her through miscarriage or stillbirth, a 12-20% chance. I was terrified that photos of me pregnant would cause me pain later on. The fear deepened when we learned of her likely life limiting birth defects. I rarely let myself in front of a camera. It wasn’t until I had her and then lost her, that I realized how much I valued the few photos that showed my belly pregnant with Mabel. Those photos were part of the proof that she existed. That she was here. So a maternity photo shoot- something I might have thought was too cheesy for my liking otherwise- was actually the most thoughtful gift and tribute to Mabel. That man, my husband. ❤

I spent the day a bit like any other- happy to have a free day to clean, run errands and get my life together. An important part of the day was visiting Mabel- that little sweet thing that gave the day meaning. When we arrived at her tombstone, I was surprised to see that someone had planted some flowers for her.

Mabel’s flowers

Oddly, I think it was a random act of kindness. There were some freshly planted flowers of the same variety and color along a grave one row up.

The grave with the same flowers

Unless someone I know takes claim for such a lovely deed, I envision the caregiver of that other adorned grave, looking over at Mabel’s stone, reading her name, her solitary date and seeing the engraving of her tiny footprints and deciding that she too needed a little special gift on that day. Maybe they even thought of the mother of that baby and how hard Mother’s Day must be for any woman who has had to bury her child.

How was this Mother’s Day for you?

March of Dimes

I was a bit nervous as I approached the park. Chris was called into work last minute on a Sunday, so it was just me and Muppet. I had never done the March of Dimes before. Strange, I suppose, when you think of my line of work. One would think that I might be a yearly walker, especially because the labor and birth unit at my hospital puts together a team annually. Honestly I probably wouldn’t have gone this year either, with my walk attention and fundraising efforts elsewhere, but the L&B team decided to walk this year in memory of Mabel. I was so touched. They had shirts made- orange for my karate carrot- with her name and a little carrot on the back.

Even though it was an honor to have my daughter the focus of their team efforts, I was still nervous because it was the March of Dimes. My first thought is of all the preemies who make it out of the NICU- the success stories.   The “sung” heroes- the poster children for why giving to the March of Dimes matters. See what your money can do, it saved this baby’s life. My baby was one of the unsung heroes- one who never saw outside the wires and beeping of a NICU room. But she was her own success. We knew she might not (likely not) graduate from the NICU, but we got what we had hoped for. When we were told our baby had a likely life limiting diagnosis, my hopes for her changed. Once hoping she would simply be a high functioning child with Down Syndrome who needed no surgery, the preterm oligohydramnios diagnosis changed my hopes- I hoped that she would survive pregnancy so I could meet her in person; I hoped she wouldn’t suffer; I hoped her case would be clear, so we wouldn’t have to make any extremely difficult decisions; I hoped she wouldn’t die alone. My hopes were met- she lived, which was her own making! Mabel’s NICU team helped with the other hopes- giving her pain medication so she wouldn’t suffer and keeping us informed about her prognosis so we could make those “simple” difficult decisions. The NICU couldn’t save her- her body wasn’t meant for this world with its current technology- but it gave us control, comfort and memories. Though Mabel didn’t survive, she is still a poster child for the NICU- exactly why people should donate to the March of Dimes, so that some day, a baby like Mabel would have a chance.

Did any of you participate in the March of Dimes? Or other walks/fundraisers/awareness events?

Sunday Synopsis

What to expect during your first postpartum doctor appointment after loss–  I appreciated this article (though I wish she used “provider” rather than “doctor” but that’s just the midwife in me.)  She mentions how she wishes her doctor had given more emotional support.  I bet many of us feel that way (though I do have to give a shout out to my midwives, who might just be the exception). From the provider perspective, I bet many are at a loss as far how to help those who have lost.  I think it speaks that providers need more guidance on just how to provide that emotional support.  Any concrete suggestions?

Unexpected lives– A fascinating read. These five stories of families given difficult diagnoses for their children.  I of course could relate in a way and it also helps me visualize a little what my life might have been life had Mabel lived.  Gripping.

The Sacred Project– Have you seen this?  Are you in this?  I signed up for this project but never got around to submitting (or taking) a photo.  A little regret that I never did, because it’s so beautiful.  Props.

We’re Having a Baby Together- For Short Lives– I know this is not applicable to most, but I am just so impressed that this video exists.

Remembering a sad sad day two years ago- the Sandy Hook shooting, a tragedy that is close to home- both physically and emotionally now that I too am part of the child lost community in CT.  Thinking of those parents, the families and the children today, especially.

 

Has any article really spoken to you this week?  Please share.