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?

 

 

 

World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

***

In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

Mabel

 

Grieving parenthood

As I slowly continue to work my way through this article, I keep finding little points, where I’m nodding my head. “Yes, yes.” I say in my head as I read. It’s incredibly validating. One section keeps reverberating through my head. For some of us, we lost our first pregnancies, which in addition to mourning the loss of our child, we are also mourning the loss of transition into parenthood. Into a new stage of life.

 Especially when it is the first pregnancy or when there are multiple pregnancy losses, there may be developmental interference rather than progression. Internal stagnation is common. Women and their partners experiencing pregnancy loss often talk of not getting on with their life goals, plans, and dreams. They feel stuck, off track, as if they are running in place as life is passing them by. Erikson’s landmark delineation of the eight stages of human development emphasizes the crucial role of generativity, serving as mentor to the next generation, which is typically, though not inevitably, realized in parenthoood.104 A qualitative study of the elderly suggested that lingering grief for their pregnancies of decades ago, and perinatal losses, may be related to their not having any grandchildren, failing to take one’s place in the generational hierarchy.

And that grief is real too.

Many of the usual responses to perinatal loss, such as visualizing or hearing a baby, wishing to have another baby as soon as possible, and feeling intense pain and envy when exposed to other babies, may sometimes be based less on grieving the death of their particular child than on confronting the painful frustration of not being able to parent.

This last line especially speaks to me. I don’t have to justify how sad I am about losing Mabel- losing her as a person. But I want to scream that I am also so sad … SO SAD… that I lost the opportunity to parent. Just like the article says, it hurts watching others with babies, not just because the babies make me think of Mabel, but also watching others parent their children in a way I don’t get to do! I’m so angry about the unfairness of that. I don’t get to see if I can comfort my crying baby, if I’ll struggle with breastfeeding, if I’ll be miserable and sleep deprived. I don’t get to see if I even enjoy parenting. I simply want the opportunity to do so and I have such little control over it.

I know I’m still a mother, a parent- I don’t need reassurance with that. I just wish I could have the chance to be a more traditional mother and parent in an active may, not simply tending a grave and making sure my baby’s name is not forgotten. I am not only grieving my daughter, but I am also grieving the loss of parenthood.

Do you feel this loss as well?

Gracious in Grief

I am not gracious.

There is an ideal bereaved mother image I have in my mind- she is gracious through her grief. Yes, she is sad and angry, but her feelings are directed in productive ways. Her anger is anger at the world in general, that circumstance would let her baby die. She is not angry at other people for having babies after her, for getting pregnant easily, for being joyful instead of scared in their own pregnancies. She is sad, but her sadness is pretty- the kind that makes people want to wrap their arms around her for comfort, not avoid because they don’t know what to do with such ugly sorrow. She understands how hard it is for others to understand babyloss and so gives them leeway when they do avoid. She is easy to forgive, understanding in others reactions and expressive of her grief in socially acceptable ways. She holds other babies easily, not thinking of how they remind her of her dead daughter. She can be genuinely happy for others in their family announcements, rather than cringing, cursing the world and letting her deep jealousy show. She is able to separate her loss from others gains- she does not see the face of her dead baby in those born around the same time as hers, she is able to return to work, full fledged caring for other women in their joys, while she suffers her sadness at home. She is like that bible verse, recited at weddings “She is patient, she is kind. She does not envy…” She is gracious in her grief.

I am not gracious.

Do you ever wish you could grieve differently?

The anger-sadness balance

On New Year’s day I sat on my couch, scrolling through my old facebook posts. I was looking for my New Years post from the previous year as a comparison to how I felt this year. A year ago I thought I had been through the biggest rollercoaster of my life- finding out I was pregnant, learning about Mabel’s Down Syndrome, embracing and preparing to raise a child with special needs and then learning my baby’s birth defects might not be compatible with life. It was, at the time, the worst year of my life. I was unsure how 2014 would turn out and low and behold it turned out to be worse. Some beautiful moments- the birth of my daughter followed by the darkest, her death and the grieving that came with.

In my scrolling, I came up across the posting about her birth and death. In reading the words I had written and gazing at the photos above them, I was struck by sadness. I couldn’t believe that it all had actually happened. That I actually had a baby. That she actually lived. That there was a moment when she had been placed, warm and goopy on my belly just seconds after birth. That she lay quite still on a warmer, struggling to breathe despite numerous tubes and interventions. That we actually had to tell the doctors that we were ready- ready to let her die. That she actually died. That we actually buried her.

Tears ran down my cheeks. Wanting to really let myself really feel the sadness, I then pulled up the video I had made:

I cried and I cried. I also cried because I realized how long it had been since I cried like that. I have just been so angry, there hasn’t been any room in me for sad. I know more sad is needed, but I can’t seem to force it. So how do I do it? How do I balance anger and sadness? How do you?

New Year, New Necklace

 

My cousin asked me “Do you have any New Years Resolutions?”

I quickly answered, “No.”

But I’ve been thinking about this more as the days pass. I was never much one for resolutions. I do remember making some in college- one of which was to be nicer, which several of my friends are adopting this year (though I find it a little humorous, because they are my friends. I think they are nice anyways). A lot of people put exercise on their resolution list, and as much as I support good exercise, I sometimes get a little annoyed because, as a regular gym goer regardless of the season, my familiar territory becomes super crowded. As this article suggests, priorities change after trauma and loss and they can be reflected in our resolutions. Yes, I may vow to eat more vegetables, but I’ve been doing that everyday- New Year’s doesn’t change that for me. Instead, despite my quick response to my cousin, I might have a few resolutions.

 

When I first lost Mabel I was so hungry for support, especially from people who had been through something similar. I joined lots of facebook groups-Down Syndrome Bereavement Group, Grieve Beautifully, Loss Parents Walking Alternative Paths, All That Love Can Do <3, Remembering Our Babies After Stillbirth/Neonatal Loss and Life After Loss of your Baby/ Surviving Stillbirth/Neonatal Loss. These groups helped me immensely in the beginning, but I’ve found they bring me down lately- a lot of people in stages of grief that are painful for me to observe. So I’ve stopped following them.

 

I’m taking down Mabel’s sign at work. I originally put it up to help ease the burden of people asking about the baby and saying painful platitudes in response to the answer. Plus, I’m not sure people are reading it anymore. I still get an occasional “How’s the baby?” and I can now easily say, “I have sad news…” I can do it without being tearful and can redirect the conversation back to the patient. Oddly, I don’t always want to talk about her in the exam room anymore. I still have one month of overlap- last January I was heavily pregnant and so I may still see some patients who saw me last with child and they may ask, but now I’m readier.

 

I’m going to work on my anger. I find it’s turned me into a bitter, jealous person. Recently at my December babyloss support group, my anger was evident and there were new people at the group. Though it’s a safe space to be able to express our feelings, I fear that my anger scared some of the new people who are far earlier in their grief. I also heard of someone I know who not long ago had a miscarriage- and my thoughts about it were horrific. I, who supports loss is loss, had trouble finding sympathy because this person had a living child. I was angry that she had even tried for two children when I’m still waiting for one living one. What kind of mean, bitterness is that? It’s not who I want to be.

 

I’m going find some peace at work. I constant fear, especially as the one year anniversary approaches, that my job will pressure me to go back to doing call. All I can say is I’m not ready right now (will I ever be?). I need to address this fear so I can continue my job peacefully.

 

I’m wearing a new necklace. I have been so kindly gifted many necklaces for Mabel. The first one I received I immediately put on and wore every day since, despite the little carrot charm falling off every now and then.

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So I received a new one- very similar with the carrot, but this one with color.

FullSizeRender (12)

I think it reflects how I want to feel this year- adding a little more color into my life. Embracing gratitude, be less angry, finding some peace.

 

So my resolutions? New year, new necklace.

Do you have any resolutions?

A kick in the face reminder

When I was pregnant with Mabel, we learned she had Down Syndrome at 13 weeks. From that point forward, Chris and I tried to be positive. We started making connections, reading books, attending conferences . There was certainly adjustment to be had, but we were accepting. Not long after the news, I was connected with another woman a few weeks behind me with the same Down Syndrome diagnosis. We corresponded a bit through email but we were in different places– I was moving forward with the diagnosis; she was praying for a miracle. We were cordial, but did not stay in touch.

Until now.

I received an email from her hoping to reconnect, now that we both had babies with Down Syndrome. It was a very sweet email, complete with photos, from a mom who clearly loves her child. It was well intentioned and in another world would have been welcome.

But it in this world, the one where my baby died, it hurt. It felt like a kick in the face. Just when I thought I was moving forward in my grief, learning how to live with the loss of my baby, I am reminded how cruel and unfair the world can be.

I am angry. So. Very. Angry.

I am not angry at this woman- I feel relieved that she had a living baby and that child is clearly loved to pieces. I am angry that mine never had the chance. I am angry that I said yes, accepted a difficult diagnosis and my baby still died. I am angry that I wanted to be a parent, that my pregnancy was planned and that I was ready, but my baby still died. I could go on about my anger- about how people seem to get pregnant easily, multiple times! How people think they are invincible in pregnancy, how people don’t recognize the gift that pregnancy and living children are. I could go on and on, but what’s the point?

I’m just angry that my baby died. And I didn’t need any reminders.