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?

 

 

 

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May I be so lucky

Heard a newborn today for the first time during my stay.  I’m on the Maternal Special Care floor of my hospital- it houses people like me, still pregnant and high risk in some way.  It is also home to high risk patients that just delivered who need special attention for a medical issue.  And there are a number of rooms to one side of mine that are postpartum rooms, used mostly for overflow (there is another whole floor for postpartum patients).  So newborns on this floor are a possibility.

 

In all this uncertainty, babies, especially newborns have been the hardest part of reality to adjust to.  While I was seeing patients, the only restriction I asked for was to not see postpartum patients.  It’s just so hard to coo over someone else’s baby when I’m unsure if I’ll have one to take to my 6 week postpartum visit.  It’s especially hard to coo when people have even greater expectations for me to coo- expected because I’m a midwife and expected because I’m expecting!

 

I don’t think this part of reality will get any easier to deal with after the baby’s born.  If I lose the baby, I know it will be hard to be around other’s young children.  If my baby lives and is very sick, I anticipate it being hard in a different way.  It’s jealousy, I know.  I want what they have.  I have no bad feelings towards new moms and their babies, it’s just a reminder of what I am not expecting.  I actually hate this part of me right now.  I want to be happy for others.  Some place deep inside me is happy, but I am having trouble expressing it.  I’ve had to hide those with babies on facebook (sorry, friends).  It’s longing- for whatever normalcy they have.  I know everyone has their own battles, and this is mine.  We do what we need to in order to survive.  Even being around pregnant women is a mixed blessing- we can totally share some experiences (discomforts- though I have had very little), but not others (shopping for baby stuff).    I feel the same may be true after I labor- I wonder how I’ll feel bonding over labor experiences, because mine will not be at all how I pictured.

 

I recently read a fascinatingly moving book, deserving of another entire blog post.  “An Exact Replica of a Figment of my Imagination” by Elizabeth McCracken.  It’s a memoir of a woman who had a full term stillbirth and then went on to have another living child.  A different scenario from mine, but so many shared experiences and feelings.  She puts it well:  “If human reproduction has to carry on, I want it to work out for other people I like…. Still I wouldn’t mind a pause in the whole business. A sudden harmless moratorium on babies being born.”

 

Since a moratorium is impossible, I’ve been learning to deal with others who don’t know the struggles I face.  I remember one day, two people said “just wait, you’ll see.”  Kind, well intended words, meaning to create a bond with me, but did nothing but make me feel more distant.  There was a woman at bootcamp who I knew was postpartum. I had forgotten her name, so I reintroduced myself to her. “ I can’t remember anything” I remarked.  “Just wait, after the baby, with kids it worse!.” She said with some camaraderie.  If I could be so lucky.

 

Later that day, a patient had her annual exam with me and brought her two year old, who as most two year olds are, was into everything. Couldn’t sit still.  I tried to entertain her with a balloon made out of a glove, some scopettes (aka giant q-tips), purrell, all while taking mom’s history.    “Just wait, you’ll be doing this in two years.”  This time I said quickly “may I be so lucky” before changing the subject.

 

Just wait….Just wait…. I hope I can share the experiences of having a child that saps my memory and of chasing a two year old around.  May I be so lucky to have the opportunity to deal with such everyday struggles.  But these are uncertain and hopeful images- not the sure thing these women pictured for me.

 

Responding to these kinds of comments and interacting in general with pregnant women and women with babies, has helped me develop some skills so I don’t appear rude or uncaring.  There is a part of me that is hopeful I won’t need them anymore because maybe the baby will be fine (“fine” defined in a whole new way- “fine” meaning I take the baby home and s/he lives for years and years and is happy).  There is part of me that knows that I’ll need these skills no matter what.  For now I’ll consider it all as good practice.

How do I bond with this baby?

How do I bond with this baby?  I’ve talked about how I want others to see this baby as a real person and maybe part of that is so I can feel like this baby is real.  I’ve felt a lot of movement in the past few days and movement is something I am so very thankful for.  Mostly because I know the baby is alive and nothing has changed.  It helps a little to think the baby is interacting with me and my body too. But it’s still so unreal.  It was unreal when I discovered I was pregnant.  At that time, I felt pretty much ok and certainly didn’t look pregnant.  It was unreal when we found out the baby has Down Syndrome.  I hadn’t even adjusted to the pregnancy yet and then I had another hurdle to adjust to.  It got a little more real when we went to the CT Congress on Downs Syndrome’s conference- meeting parents with children with Down Syndrome.  But now this.  I need another conference full of people who’s babies kidneys weren’t working and had lung issues. AND have Down Syndrome.  I just don’t know what life will be like if the baby lives.  I have no role models, no scenarios, no nothing.

 

I can’t picture what my baby will look like.  I used to have trouble just trying to morph Chris’s and my baby pictures in my head to come up with some vision of our baby.  Adding features of Down Syndrome made it more difficult to imagine the face of our baby.  And now with the low fluid, the baby may have Potter’s syndrome too- with no swimming pool to stretch out in, the baby’s limbs could be contracted and some of the facial features smooshed. Plus the baby has clubbed feet.  I worry that my baby will look funny.  I know it will be my baby, but I just can’t picture him/her.

 

I think about if we have to have a funeral- I don’t know if I’d display a photo- especially if it were a stillbirth- mostly because people are uncomfortable with seeing a photo of a dead baby.  I would keep those photos for me to remember and reflect.  So my next thought would be to display a picture of the baby’s feet, because that’s a sweet, classic, usually “safe” image.  But my baby’s feet might be rotated and contracted.  It makes me so sad that there might not be photos of my baby that people would want to see.

 

So how do I bond with this baby?  I know that this may be a typical first time mom experience.  It’s hard to envision yourself as a mother until you’ve been one, right?  But the act of breastfeeding, changing diapers, holding your baby are all things that help first time moms really get adjusted to the idea that they are really mothers.  I might not get that.  I know people will say I’m still a mom even if my baby doesn’t survive.  But how will I feel like a mom?  If my baby is in the neonatal ICU, I don’t get to do those initial mom things.  I don’t even get the first step- holding my baby skin to skin.

 

How do I bond with this baby?

 

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On another note, I came across this on one of my Down Syndrome message boards.  I can’t explain the part of my brain and heart that this touched.  I read this as not just as someone who is pregnant, but who faces pregnant women every day.

http://liferearranged.com/2014/01/why-it-matters-when-we-rub-our-bellies-and-say-so-long-as-its-healthy/

My response when people ask if its a boy or a girl. “I don’t know.  But I’m pretty sure its a baby.”  It’s a baby.