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?

“Healed”

Healing. It’s a word we use frequently when talking about grief and I don’t particularly like it. My therapist pointed it out when she used the word and I stiffened. My issue with the word is that it connotes an end. We use it in medicine to talk about how someone gets better, and in a way this is applicable. As we move through our grief, we function better in society, we come to terms with the unchangeable fact that our babies are dead and we begin to find enjoyment and fulfillment in the world around us. But… and it’s a big but…in my medical world we declared someone healed- their uterus is back down to normal size, their stitches have dissolved and their milk has dried up- they are healed. In grief, there is no end. There aren’t even any concrete steps. Going back to work, holding babies, getting to the one year mark- these are things we do, but it’s not clean cut. When I went back to work, I shook, I cried, I took Ativan just to get through the door. Now I move fluidly through my day, rarely crying for my own situation. But there was no discrete time point when I went from being barely able to function to now. It was gradual and I still wouldn’t say I am in a great place. I recently came across this post and loved how he used the word adjusting to loss. A more apt term.

As Mabel’s one-year mark approaches, I think people have certain expectations. One year, I should be healed. I worry that expectations at work will change, that people will think somehow getting through the anniversary of my daughter’s birth and death somehow means something huge. That somehow the difference between February 15 and 16 will be significant, when really it’s just another day in the process. I remember reading early in my grieving this post (I can’t seem to link it directly.  click on http://glowinthewoods.com/  –> at the kitchen table –> scroll down to the post entitled “Tick Tock”) and taking away the message that it can take up to two years to integrate babyloss into your life. (I like how they used the word integrate and not “healed”). Two years! I thought. How am I going to survive two years!?! I thought I wanted to be healed right away, but now I can see I really just simply wanted to stop feeling the pain so acutely. Those early days were rough, weren’t they?

I still stiffen at the word “heal.” I think when those within the babyloss community use it, there is subtext. We know we are never healed from our children’s deaths, but it signifies we are functioning in the new world, the one without our babies. When those outside of our community use it, I can’t help but feel a little resentment, believing they think there is a true endpoint in our grief.

Where are you in your loss timeline? What do you think- are you healed? How do you feel about that word?

Sick days

Sometimes I just wish I could take a sick day.

On a day when I’m feeling sad- or want to feel sad- when the idea of facing pregnant woman after pregnant woman just feels like too much, overwhelming, I wish I could call in and take a mental health day. Spend the day between the couch and the bed, looking at photos, distracting with bad tv.

In medicine, providers rarely take sick days. I’ve had colleagues work with IVs hidden under their sleeves rather than call in sick, co-workers who see one last patient before they themselves go to the emergency room. I was feeling really bad one day, a few years back (I rarely get sick). I didn’t eat anything but crackers for lunch, which was highly unusual for me. By the end of the afternoon I was severely nauseous and struggling through each patient. With two more to go, I quietly vomited in my office trashcan before heading into the next room. My sonographer caught me afterwards saying she had a patient freaking out over her ultrasound and could I talk to her. I could not say no. I stood patiently in the room as she cried over a minor finding on the sonogram (which in the end turned out to be insignificant). After consoling her best I could I left the room to finish vomiting.

If I can’t even call in sick for that, how can I justify taking a mental health day?

Of course, I could simply make the call. But the twenty-five patients on my schedule that day would have to be moved- those who need to be seen would be smooshed into my coworkers already busy days and others would be overbooked with me when I returned. So calling in sick not only burdens my colleagues, but also makes my following days in the office that much worse. I often felt like this in high school, rarely staying home because I wouldn’t want to miss the classes and have my return be a mess. It was just easier to suffer through.

So that’s what I do now when I’m having a bad day. Suffer though. I also have Wednesdays off which helps- knowing I can always use that day for my grief. I just have to postpone all my feelings. It’s hard, though, scheduling my sorrow. Sometimes I wish I could simply take a sick day.

Do you take mental health days? How do you spend them?

Sunday Synopsis

Why I don’t want my miscarriage to stay a secret- great post that brings miscarriage into the babyloss community.  Miscarriage is a different kind of loss than stillbirth or neonatal loss, but there is still so much grief that can accompany it.

How should an abortion be– WARNING.  I know I have many readers who will not like this article. I post it not to make a huge political statement, but instead I post it because it fits into my latest theme- feeling pressure to grieve the right way.  I also post it because people terminate a pregnancy for many reasons- including medical, because her health is at risk or the baby has a fatal condition.  Babyloss is a taboo subject, as is termination- so there are some similarities there.  They come with complex and nuanced feelings with pressure about how we are supposed to feel.  Many people in the babyloss community might feel complete different/separate from the abortion community and that’s OK and totally reasonable too.  I post only to show that people in different circumstances can also feel the pressure of how to grieve/not grieve appropriately, just like us.

Here are just some of the people living with an extra chromosome and rocking it– I love this.  In some ways it’s a very nice contrast to the article above this.  Yes I am pretty open minded about people’s personal decisions when choosing to continue (or not) a pregnancy- it’s their choice.  And most (up to 92% some sources say) women choose to terminate a pregnancy with a Down Syndrome diagnosis.  Getting the diagnosis means at best a lifetime of caring for a special needs child, likely a host of medical problems, and a disability of unpredictable significance (mild to severe).  At worst it means a miscarriage, a stillbirth or a dead child.  When people make their decision, I just hope they also consider the info in this video.  No one is guaranteed a perfect child and those with trisomy 21 can do so much more than we sometimes imagine.

Speaking of dead moms– I love the ending of this.  “Sometimes speaking of death isn’t necessary, and sometimes sharing it isn’t possible. We do as we do to get through. We eat the black jelly beans.” As Mabel’s birthday approaches, I’m torn between wanting to shout from the rooftop and huddling down, not speaking of her and keeping her memories to myself.  I have just ordinary days like that too.  Speaks to my recent theme- there is no right way to grieve.

Just think of the midwifery care you can provide to patients…

This post that popped up in my email reminded me very much of the conversation started on one of my Sunday Synopsis’s in the comments. I’ll be honest: I haven’t read the whole thing- and I’m not sure everything resonates with me, because of of the religious aspect.  But it falls under the “things not to say to the babylost” category. I don’t bring it up to start more conversation on the topic, but instead I wanted to share one point that hit me-

3. “Just think of the ministry you can have someday to parents who have lost children.” No. At least not the ministry you’re thinking. That would require me to say that God is somehow in this for them and I happen to know that’s not helpful. Plus, I don’t want that ministry. I’ve spent twenty years of my life trying to serve God full time.  I’ve put every major decision of my life through “God’s will” as a filter, including setting aside life dreams for myself.  All of the big things I’ve tried to do for him have been heartbreak for me.  I think I’m done with ministry at this point. – See more at: http://www.calebwilde.com/2015/01/23-spiritualized-comfort-cliches-to-avoid-when-a-child-dies-3/#sthash.q30SIzFp.dpuf

I have received similar comments that irk me just a bit. I am not religious and therefor not providing ministry, but I am a midwife and provide care. It could have easily read “Just think of the good midwifery care you can provide to patients going through loss.”

Yes. Now that I’ve experienced loss myself, I do think I provide even better care to women as they experience their own- from infertility to miscarriage to stillbirth and neonatal loss. I have learned so much and become a resource for others in my medical community. I am unafraid (less afraid?) to help support my patients through their grief.

BUT, it does not make me feel better about my own baby dying. I like to think I gave decent care before- I might even have a few patients who could vouch for me on that. And even if I didn’t, frankly, I’d rather be a crappy midwife with a living child that a super compassionate midwife with a dead one.   The comment implies that I needed my daughter to die so I could grow personally and professionally. I know plenty of other care providers who could use similar growth, but I don’t wish a dead child on them.

I can see how Mabel’s death has made me a better midwife in some ways, but I don’t really need anyone to point it out or use that to make me feel better. It invalidates some of my grief. Yes, I think I show much more compassion to my babyloss patients, but it was a crummy journey to get there. I would have preferred to avoid it, thank you.

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?

Letting myself have fun

A year ago I spent a friend’s birth trying to bowl with my very pregnant belly. It was one of the last hurrahs before going into the hospital. Chris and I joked around, standing back to back, me 32 weeks pregnant with Mabel, he with a bowling ball under his shirt. I bowled terribly, blaming the offset in my balance. Overall, I had fun.

This year that same friend’s birth rolled around and we found ourselves at the same bowling alley, reliving the same birthday celebration. With the holidays often interrupting many of our social schedules, it was nice to be among the larger group of friends again. As I sat down and put on my bowling shoes, with plates of every kind of fried food sitting before me, I decided I was going to have fun. Being in celebratory situations have often been difficult after my child died. Can I have fun? Will people think I am over Mabel? If I have fun, will I be forsaking her? As I pledged on one of babylossmamma’s posts, I am trying to let myself have fun, without too much guilt. It is a fine balance because I still worry that people will think I’m fine, I’m “healed” (I have another whole post in the making about what I think of that word), that I’ve moved on. My therapist asks me, what am I afraid will happen? The best answer I can come up with is that my support will go away. I still need lots of it. I struggle with anger, sadness, jealousy, hurt on a daily basis and need people to recognize that and cut me some slack sometimes. For the most part they have. I hope that can continue.

And of course, Mabel still came up that night amidst all the fun. A friend brought his girlfriend- someone I’ve simply met before but didn’t get to know. She was simply a ball full of pleasantness. Sweet and interested. We made lots of small talk. Since I was bowling remarkably well, I felt the need for her to understand it was a fluke- that last year, I was terrible. I blamed it on being big and pregnant, but secretly I’m usually not very good. We talked about where we were from, went to school, etc. And then she asked innocently, “so how many kids do you have?” My stomach dropped- but for such a different reason than it used to when asked this question. My baby died and I can say that now. I just felt so bad for her that I was about to drop this bomb on her, turning this lighthearted conversation into something inevitably sad.

“I had a baby last year and she died after birth. So none living at the moment.” I smile din the best way that I could- trying to show that yes, I’m sad, but I’m not going to go to pieces right at this moment.

She did all the right things, reaching out, touching my arm, saying, “Oh, I’m so sorry.”

She was then at a loss for words and so as I often do, I tried to fill the space.

“It’s ok…. Wait, no, it’s not ok that she died, but it’s ok that you asked. Thank you.”

And then it was my turn to bowl. So despite all my fun, Mabel was still there, present and with me.

Do you let yourself have fun? Without guilt? How does it turn out?

Sunday Synopsis

Acceptance in Infertility– This article is reminicent of the many articles out there about what not to say to babyloss moms and of some of the conversation started here in the comments.  A different topic (though I see infertility as babyloss too, whether it be from recurrent pregnancy loss or inability to become pregnant at all.  we who have had babyloss share a lot with our sisters who struggle with infertility).  I appreciate it for the same message we’ve all been sharing.  Words are powerful and sometimes well intention. benign seeming words can convey another whole message to the receiver.

Helping Families Cope with Perinatal Loss– I picked this one up on Wrapped Up In The Parentheses and have been slowly working my way through it.  (confession: I’m not done).  But so far, it’s been fascinating- validating, if nothing else.

Early Pregnancy Loss– a babyloss friend emailed this to me.  I like it because it I think it sums up, from a different perspective, the idea behind my post and the conversation it brought up.  Yes, loss is different depending on what kind of loss it is- early pregnancy, stillbirth, neonatal loss- BUT everyone has a right to be sad based on their loss.  Its seems we all just want validation that what we have gone through is hard and sad.  it is.

A kidney ultrasound

The cold gel on my side felt like appropriate payback for the daily cold gel torture I impose on my patients as I search for fetal heart rates. The cold gel on my side was looking for something different. The sonographer scanned my kidneys looking for cysts.

“So it says you have a family history of multicystic kidneys?” she questioned. “Who’s had them?”

“My daughter.”

“Oh, no one else? Did they trace them back to anyone else in the family?”

“Well, she had Down Syndrome, so it’s possible it could been from that. But no one else in the family.”

I had been putting off this ultrasound. Mabel had multicystic kidneys, which we generally attributed to the Down Syndrome, but in theory could have had other origins. It can also be spontaneous or have a hereditary component. Children who are diagnosed with multicystic dysplastic kidney disease (MCDK) often have a parent who turns out to have the disease as well, albeit undiagnosed. When parents have the condition, there is a chance they can pass it on to their children.

So, I was encouraged to get my kidneys checked- for my own health and to see about any risk of recurrence in future pregnancies. I hemmed and hawed about it. It was easy just to chalk Mabel’s kidneys up to the Down Syndrome (kidney issues are more common in children with DS than the general population). I wasn’t sure I wanted to know. I figured (naively) that I was healthy. I’ve never even had a UTI. And if I did have MCDK then it would be yet another thing I would worry about in future pregnancies, but something that wouldn’t be diagnosable until mid pregnancy anyways. And it wouldn’t change my management- the golden question in my field. If a test wouldn’t change the management, then why do it? Do I want the additional worry of an increased of kidney disease, oligohydramnios, poor prognosis and neonatal death, when there is nothing I could do about it?  .  Ultimately I decided it’s important to know for my own health. I want to be healthy for subsequent pregnancies.

“No cysts,” she said as she scanned my right. “And none here either,” as she finished up on my left.

I would be lying if I said I wasn’t relieved. I’m not sure whether the sonographer saw the lone tear that I let escape.

A friendly drug rep

“How was your holidays?” he asked, upbeat and friendly.  Sometimes we have pharmaceutical reps bring lunch to the office and tell us about their new drugs.  I could write a separate post about the ethics behind this, but I will spare you the details.  One thing I will say is that there are so many new drugs (so many drugs, period) out there that I can’t possibly know them all.  Having someone (so be it, biased) tell me about one while I’m eating is helpful.  Whether it’s a lunch they provide or one I bring on my own matters little to me.

Drug reps are hired to be friendly- they are sales people and want us to prescribe their drugs.  This one was representing a menopause drug and since I prescribe only a few of these kinds of drugs a year (most of my gyn patients are under age 40), he gave me his spiel and then he just made small talk.

I took a second to think about what kind of response I wanted- honest? polite? pleasant?

I went with honesty.

“Kind of sad, actually,” I said pleasantly, but without expanding.  Why lie?

“Oh, I can imagine,” he responded.  “I saw your sign.”

I looked at one of my assistants. “I thought we took those down.”  She nodded, confused as I was.

“I saw it last year.  I think it’s amazing that you’re back here.”  Honestly I think he was also a little amazed that I walked into the lunch room with a general friendly disposition too.  He was genuine and kind.

“It was a rough year.  But it’s a new year now and I’m hoping this one will be kind to me.” I recited my new standard response.

“Me too. I hope it is for you.”

He was a nice drug rep.  The company hired well.  I don’t remember the name of his drug, but the food was good.

How do you answer “How was your holidays?”