The fine line of empathy in the world of miscarriage

So, I left Facebook with my ‘real’ personality (and that’s been wonderful, btw!), but I found I really needed my miscarriage support groups so I have a new profile that only sees them.  There was a heated discussion in one group recently that got me thinking about loss and pain and how we empathize with others as we own our own stories.  Someone made a comment that her loss was ‘just as bad’ and she was in ‘just as much pain’ as someone else and that person got very hurt.  All of a sudden, other people join in and you have lots of hurt and hormones flying around trying to evaluate each other’s pain and grief and the ‘equality’ of their loss(es).

I have very mixed feelings on the topic:  Like first off, why does it even matter?  Why do people feel the need to assert that their grief is just as much or more than someone else’s?  Why try to equate things when there is so much background that needs to be considered?  Can’t we just say that it’s different and support each other?

Given the way Society often seems to minimize our losses, I understand in a way.  We hear comments about how ‘it was early, there never was a baby (just a sac), it was in your tube so it wouldn’t have survived anyway, there was something wrong with the baby anyway, etc.’  All of these are comments by people who are really ignorant as to the impact of miscarriage.  This was our BABY we lost.  We had dreams for his/her future.  It’s important to us to not have our grief minimized by hurtful people.  It makes me so angry for my fellow loss moms when I hear that people want to ignore their grief or tell them they shouldn’t be grieving.

On the other hand, it gets tough sometimes.  Do you really think it’s reasonable to equate a chemical pregnancy to a baby born still at 38 weeks? (this was the situation in the miscarriage group, where the rules read “all losses are equal”)  I’ve not lost a baby at full term, but I can’t imagine saying her experience is the same as a chemical pregnancy.  Yes, they both ultimately lost a baby, but really?  I think most people would agree that those aren’t comparable (or am I wrong on this??) From what I saw in the comments, this was just salt in the wound of the woman with a stillborn child and she ultimately left the group and didn’t get the support she needed (which makes me sad and angry on her behalf, but I digress).  A chemical pregnancy and stillbirth are polar opposites along the pregnancy spectrum, so maybe it’s easier to make that call. In the middle weeks, it just starts getting fuzzy.  I don’t think that every week more of gestation means there’s more grief when that precious baby is lost, but it does seem to be a different physical and emotional investment as you move further along.  So I know it’s not a proportional thing, but is this yet another way we are unintentionally minimizing women by just lumping everyone into the same category of ‘miscarriage/loss’?

There are so many gray areas and things that impact our experience: Is it any worse when it happens later or earlier?  Does it hurt more or less that one mom has felt her baby kick and the other hasn’t?  Is it better or worse to have never seen a heartbeat than to have seen a healthy heartbeat?  Is it better or worse to physically have to deliver a baby than to have surgery to remove it?  Is it better to have a grave site or ashes around as tangible memories of our baby or is it better to have had the loss so early that you don’t have all those reminders?

Then there’s the background and other life circumstances-  Is it any easier for the mom who didn’t know she was pregnant yet or the mom who didn’t want to be pregnant at this time or is it harder because that’s an added new element of guilt?  Does a miscarriage hurt more after a couple has struggled to conceive for many months or years?  Does it get worse yet when the baby was a result of expensive reproductive treatments and now they have thousands of dollars in debt as well as a lost baby?  Is it better or worse if you have a child (or children) already?  Better that you have had the opportunity to raise a child already or is it worse because you understand even more the little things you will miss out on since this baby died?  Is it easier because you don’t have idiotic people telling you that ‘at least you have other child(ren)’ as if they are interchangeable?  Obviously these things are not the root cause of the grief, but does it compound it or does it make it more bearable?  I’ll bet it’s different for every woman anyway– but it’s important to remember when we’re relating that we often don’t know the whole story.

And then there’s my situation- recurrent miscarriage.  Does it get worse with each subsequent miscarriage?  I don’t think its a 1:1 situation, where someone who has lost 5 pregnancies has less grief or pain than the woman who has lost 6.  But yet, I do think that someone who has lost 6, 9, 11 babies has a very different experience or perspective than a woman who has lost one.  So for me, yes, the ‘recurrent’ element that gets ignored sometimes by people has added lots of extra mindf**k to my journey and grief.

I’ve had 5 first trimester losses and one second trimester loss.  Every single one hurt, so that’s why I would never say that a miscarriage shouldn’t hurt.  From this perspective I can say that any loss is a loss, regardless of week of gestation, cause, etc.  But I can also say from my experience** that for me the earlier losses were no where near as hard as my 16 week loss.

That’s why I think it’s extra hard when people try to make all losses ‘equal’.  There is such a massive spectrum and so many additional factors that it’s not possible to call them ‘equal’ but it’s also impossible to rank or place on a scale.  But I do think we owe it to each other to acknowledge that there probably is some variation. In the effort to not minimize one woman’s loss, we should take care to not go the opposite direction and minimize those who may have lost a great deal more.  It’s hard to see while in the situation, though, but it’s always important to work on our perspective.

I would never tell anyone who has had a stillbirth that I know exactly how she feels.  I know my latest loss was still 8 full weeks away from even the point of viability and that’s got to be a very different starting level than a woman who loses a baby that could technically survived outside his mother.  Likewise, I would be lying if I said it didn’t hurt when I had a friend who has had one loss at 6 weeks pregnant that she conceived easily/naturally tell me over and over again that she knew ‘exactly how I feel’ (after my 6th miscarriage).   She already had three living children at the point when we were having this discussion-  I appreciated her attempt at empathy, but it also left me hurt and feeling more empty in her attempt to compare our situations.  There’s a level of complexity that divided our experiences.  I’m not minimizing her loss.  She lost a precious baby.  But I’ve lost 6.  How can it be exactly the same and why was she trying to make it the same?  Maybe it is and I’m just too raw right now to feel it.  It’s not a numbers thing, nor do I expect everything to  be equal to mean that people can relate to each other or empathize with each other.  It’s a fine line.

Most of the time I don’t think about this.  It’s when I see the discussion come up that I sometimes like to think it through and try to see all the sides of this.  I hope I didn’t offend or hurt anyone in exploring this topic, that would never be my intention- I am sending lots of love to ALL moms who have lost ANY pregnancy/baby.  And I’m giving myself a gentle reminder that we never know what anyone else has experienced, so maybe the best way to relate is not to directly compare lest we minimize someone unintentionally.

(**I know many other women have different experiences than this, I’m in no way declaring myself more ‘right’ or trying to hurt anyone, I’m just relaying my personal experience)

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Losing babies, losing faith

I’m just not sure where I stand right now when it comes to God and religion and my losses.  If I stand anywhere or if it’s just time to close a chapter on what I have been taught to believe.  It’s really going through my head right now, so I’m just going to put some of it out here.

I grew up in a very religious household.  We went to church morning and night on Sundays and once on Wed night, not to mention the Sunday School, Vacation Bible School every summer, and Church on every non-major holiday (yes, really- I mean, how many people go to church on New Years Eve and New Years Day, 4th of July, Thanksgiving, etc. when it’s not a Sunday?!).

We prayed before and after every meal, read devotions before dinner and at bedtime- it was a huge part of my upbringing.  I would hear stories of people being ‘born again’ and having a relationship with God, but I just wasn’t sure how that was supposed to feel, so I tried my best.  I believed all the major Dogmas of Christianity, I didn’t know what else to believe.  It was drilled into me left and right what I was ‘supposed to believe’ or ‘supposed to do’ as the correct Christian response to God.

When I lost my 59 year old mother to cancer on the day before Mother’s Day, I didn’t curse God or get angry at him.  It didn’t shake my faith-  I thought I was supposed to pray for comfort and God would ultimately provide that and help me feel better.  I know my Mother believed very deeply in God and even during her battle with cancer (albeit short, it was less than a year between her diagnosis and death), her faith never waned.  I used to think that she was up in heaven singing in a choir (she used to direct the church choir), and that was about the only thing that helped.

When I lost my first baby, I tried to imagine my mother up in heaven holding my baby.  I had brief moments of worry that I hadn’t been praying enough for a healthy pregnancy.  That God wanted to give me this trial to confirm that I was ready to be a Mom.   Overall, I didn’t feel like it was a horrible thing that God should have kept me from, I just figured this was part of life to get through and then things would turn out differently next time.

When I lost my second baby, I tried to imagine my mother holding that one, too.  I started to question what God was trying to tell me by having me lose two babies.  In theory, he would make me a mother if he wanted to, because he’s all-powerful, right?  My husband and I had a good relationship, good jobs, a home to raise a child in.  I tried to believe my doctor that this was just ‘bad luck’, but I really started to feel like I was being punished by God.  I earnestly searched for what ‘sins’ I had committed to deserve this.  I prayed harder than ever that my next baby would live or if it wasn’t meant to be, that I wouldn’t get pregnant again.

Despite all that, I lost my third baby, and hit the ground.   Hard.  I really started to get angry and challenge those Christian platitudes that had been thrown at me.  Did I really think this would keep happening because I wasn’t praying enough?  I know that I and several other people were praying for my 3rd pregnancy non-stop.  I didn’t have my ‘comforting’ vision anymore– My mom didn’t have enough arms to hold all my babies in heaven.  And she didn’t need my babies in heaven, I needed my babies here on Earth.  I’d be a good mother-  why did God keep taking these babies from me?  I started to really look at all the other women in horrible situations who can get pregnant easily or parents that abuse their children who keep procreating, and it just pissed me off beyond all reason.

My 3rd miscarriage was also the point where I shared my loss with a few people and I started getting back the responses about it being ‘God’s Plan’ and that when he wanted me to have a baby that I would get one.  And I was told that I needed to be more faithful that God would do as he had promised.  Oh, and that God was supposedly hurting with me and crying with me… but how does that make sense when he’s the one who caused it (or allowed it to happen– is there a difference when you are looking at an all-powerful being?)?  God is supposedly in control of everything, right, he knows the ‘plans he has for us, plans to prosper us and not harm us’?  He has predetermined that each of my babies would live for x days in utero then he would end their far-too-short lives, and he would do that time after time (after time again)?

Then I had my Sweetie.  She was beautiful and perfect and I loved her from the moment I saw her.  The first thing people say is ‘what a blessing she is’, ‘a gift from God’, ‘it’s by God’s grace that she’s here’ and I’m supposed to give all the thanks to God.  Um, wait-  God is supposed to get all the credit that my 4th pregnancy finally ‘worked’ and he’s not supposed to be the cause or get any of the blame that the first three pregnancies failed?  Did I not deserve the gift of the last three pregnancies, when he went to the trouble of getting me pregnant only to destroy/take back my gift?  How does that work?  Seems awfully hypocritical if you ask me.

Then there were miscarriages #4 and #5.  More dead babies and I’m told to pray harder.  There is no comfort in praying, I’ve been doing that like crazy.  Christians place so much value on ‘talking to God’ in prayer, but no one wants to admit that it’s a very one-sided conversation and there’s no tangible proof that it ever works.  I guess that doesn’t suit their goals.  You just start to feel like God was either punishing me or my husband and now he’s punishing my daughter by killing her siblings.  You want to talk about an unjust God?  I’m there.

And then miscarriage #6 on Mother’s Day.  There is no logic or plan that explains losing a perfect/normal baby at 16 weeks after 5 other losses and on Mother’s Day.  Where is God in that?  Seriously, if any person or being or the universe was the one that planned this, it could not have been more cruel.  How do you begin to reconcile this cruelty with a loving God?  Oh yeah, he’s supposed to comfort me.  He causes or allows things to happen so he can swoop in and ‘comfort’ people?  Sounds more to me like that ‘hero syndrome’ where people cause horrible situations (ie arson) and then ‘rescue’ people so they can get attention and praise.  I know, I know- we live in a sinful world and God wants to give us ‘free will’, so that’s supposed to explain everything according to most Christians.  Whatever.

So I’m obviously very confused on where I stand right now.  I have a very tough time with all the hypocrisy of Christianity and that alone causes me to think that it would be easier to just not believe in a God/god.  But it was so engrained in me from childhood I’m having a tough time reframing my thinking.  I am personally not gaining anything positive from Christianity/church/God, and it in fact seems to make things worse right now to try to believe that there is a ‘loving’ God out there (and to hear it from well-meaning friends and relatives).  (I know, I know, God didn’t promise wonderful lives free from trials and heck, look at Job.  Yeah, well, I’m not getting a Bible chapter named after me and I’m not Job)

After what I’ve been through, being continually bombarded with these messages that a wonderful God who I’m supposed to sing praises to would kill 6 babies as part of his plan just doesn’t sit well.  I don’t recall reading in the Bible that it took 6 tries before Mary conceived and carried Jesus- so God obviously controls life and conception when it suits his purpose.  I don’t see how God’s all-knowing plan is that a woman on welfare can continue to pop out children that she cannot afford, or parents that are neglectful or abusive can continue to have children.  (I know I’m not alone in these thoughts- I think every infertile women feels this at some time!)  If that’s His plan, then it doesn’t seem to show much foresight, it’s a piss-poor plan.  I find it much easier to say there is no plan- there is no God- shit is happening every day and it’s just because shit happens.  Trying to layer a bunch of Christian platitudes about God’s plan or God’s love or faithful prayer over a layer of shit just seems to make it stink all the more.

I keep coming back to this paradox that is frequently attributed to Epicurus (which may or may not be from him):

Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God?

The Christian answer is that we won’t ever understand this with our flawed, Human brains-  only God knows the answers.  Um, I guess that’s the perfect answer if your goal is to really not answer any questions.

So is it easier to believe in a God, one the has killed 6 babies when he supposedly loves life and his children, one that supposedly answers prayers, one that supposedly wants good things for us, one that has a ‘plan’ for all of this?  No, I really think that I’d feel much better if I believed this was random.  That no one is deciding that great parents remain infertile while a million women get pregnant only to abort because they didn’t want to be pregnant.  That when I pray I’m talking to no one and it’s only a practice that exists to make some people feel better, I’m just not one of them.

So I will keep learning and reading.  I don’t know where I stand yet, and it’s not really critical that I figure it out today or tomorrow.  I know that not all my arguments make sense right now, I haven’t thought it all out.  Christians probably think I sound like an un-Christian petulant child crying ‘no fair’ and atheists probably think I sound like I have no idea what I’m talking about 🙂  It’s ok, just be kind.  My head is really messed up still.  🙂

(And, if you are still reading here, you win a prize.  I recognize now that this is WAY too long for a blog post, but I’m going to publish it anyway.  Cause I’m still a novice blogger :))

How sensitive should doctors be?

I called my OB’s office today to discuss setting up a pre-conception appointment.  IF I do try again (and this is still a BIG, BIG if), I wanted to understand what medications she would support me being on and how she would manage dosing.  Some things would need to be started far before a positive beta level, so I need to know in advance that we’re ready.  I asked the receptionist if we could meet in the doctor’s office for the consultation instead of one of the pregnancy exam rooms.  I don’t think I’ll do as well concentrating if I have stirrups and an ultrasound machine sitting there when in the back of my mind I’ll be thinking that my baby should be at viability (24 weeks) instead of me sitting there discussing my 8th attempt at pregnancy.  The receptionist was pretty darned rude and said she had never heard of such a request and she didn’t see the point.  I politely asked if she could check with my OB.  Sigh….  Is it really so hard to understand that a grieving mom wouldn’t want to be in a prenatal room to have a sad conversation about trying yet again?

I think most women who have had a miscarriage can point to some moment where a doctor or doctor’s office has been hurtful or insensitive.  I’ve heard some pretty awful stories:

– Getting a call 2 weeks after her D&C to tell her she’s being charged for a missed prenatal appointment that day and reminding her how important prenatal care is for the health of her baby

– Having to sit in the waiting room full of pregnant women waiting to have a follow-up post miscarriage

– Mixing them up with a pregnant patient (asking them to pee in a cup for a protein screen) and then taking it back and saying ‘oh, you’re not pregnant anymore, we don’t care about this for you’

– Hearing some of those awful ‘things not to say to a grieving mother’ straight from your OB (Ie, you’re young, try again- you’ll be pregnant again in no time, the baby would have had a birth defect anyway and you don’t want that)

– Having a receptionist tell you that you need to reschedule your appointment after waiting for the OB for 30 minutes because ‘Your doctor has to go deliver a baby for a new mom right now.  You can wait, she can’t (insert laughter like this is some joke).’

Anyway, what responsibility do doctors have to being sensitive and training their office staff to be thoughtful and sensitive?  I guess I feel that OBs should be held to a very high standard on this.  I think if miscarriage is really as common as they say (1 in 4 women will have a miscarriage) that they should be far better at handling it.  It’s an unfortunate part of working in the field of obstetrics and if they are not regularly addressing sensitivity with their staff, they shouldn’t be practicing.  They should be recommending support groups and making it easier for patients to understand what happened and what their options are.  They should have some times set aside when their office isn’t packed with pregnant women so that those who need to follow-up post miscarriage have a place to go.  At the very least, they could put these women in an exam room right away rather than making her sit there with tons of pregnant women.

The exam rooms should not have a gajillion pictures of babies- is that too much to ask?  My OB has a lot of exam rooms, I think one could easily be dedicated to just gynecological patients (and moms who have had a miscarriage could go there).  Nope, all of them are equipped with ultrasound machines and posters of babies and ultrasounds at various developmental stages.

Another group that I think should be better-  IVF clinics.  I have been into at least 4 different IVF clinic offices that have bulletin boards packed with happy pictures of babies that are the success stories, but how does that feel to the woman who hasn’t had her success story yet?  Shouldn’t IVF professionals be the first people to be sensitive to how a grieving mother or infertile woman might feel?

Am I expecting too much?  I don’t expect the general population to screen out messages that might make a grieving mom feel awful or an infertile woman feel sad.  I know that everyone in the world cannot walk around on egg shells around me.  I don’t expect my Facebook feed to be clear of pregnancy announcements or newborn pictures (but I do try to move them off my status feed).  But I really feel like the medical professionals that work with women should take that extra step to being sensitive to all their patients.  What do you think?  Am I being unreasonable?

The worst weekend of my life

So having recurrent miscarriages, you’re never really supposed to feel ‘safe’ in pregnancy.  Except I did, that was my big mistake.

We did IVF with PGS, so we knew we had a chromosomally normal baby.  I had ultrasounds every week to check in on my little bean.  She had a perfect heartbeat every time.  We had an NT scan at 12w5d and everything was normal, low odds of issues.  I was one day shy of 16 weeks pregnant, so things are supposed to be fine now.  None of my other losses had made it this far, I thought my problem was losing babies early on.  I had made it to this point with my daughter, so I really thought I’d be ok.

I checked the heartbeat Friday night with my home doppler- everything was good.  Found it right away in the 160s.  Woke up on Saturday and we did some chores.  Headed to Home Depot to buy some flowers, planted them in the afternoon.  My husband cautioned me to take it easy, so I just stood around most of the time.  We made burgers and apple crisp for dinner, what a lovely Spring night.  The next day was Mother’s Day, so my husband and I were making plans.  We talked a little bit about baby names before heading to bed.  I had a feeling that the baby was a girl, but we could never agree on a girl name!  Boy’s names were easy.

I went up to bed while my husband finished some emails and I wanted to listen to my baby again, just really quick.  I couldn’t find the heartbeat for several minutes, which was pretty odd.  I had had that happen once before, so I took a drink of water and walked around and then tried again.  Still nothing.  My husband told me not to panic and was trying to blame the doppler, saying that maybe it needed new batteries.  I knew.  I just knew.  I remember telling him that I was 90% certain that our baby was dead.  I don’t know how I went to sleep that night, I said I would try again in the morning.  But I knew.

Sunday morning was Mother’s Day.  I woke up at 430 and knew I wanted to check again with the doppler.  Hoping against hope that she was just hiding.  Nothing.  I went into the ER later that morning and it was confirmed.  My baby didn’t have a heartbeat anymore.  I am still haunted by the view of that ultrasound-  her not moving and no heartbeat.  I wish I hadn’t looked at the screen, it’s the worst image I’ve ever seen and it’s caused nightmares.  She measured right on- 16w, so I was given the choice to deliver her or have a D&C.  In the moment, I couldn’t imagine being induced.  I just wanted the horror of this all to be over.  I wanted my heart to stop beating, too, and it felt like it had.  How many times can one person handle their heart being ripped out?  And on Mother’s Day.  I don’t know what you believe in, God or the Universe or whatever, but that just seems extra cruel.

I want my baby.  My sweet little girl who was so wanted, who we tried so hard to have.  My daughter’s little sister that she’ll never get to meet.  I hate my body for not keeping her alive so I could meet her.

Why a blog?

I’m not a typical blogger.  I’ve found many blogs that I like to check into every now and again, but I’m not a writer.  I like to ramble and don’t want to have to edit my stream of thoughts.

But I’ve found myself feeling so completely alone after my last miscarriage, miscarriage #6.  The one that happened after a dozen ultrasounds assured me that my baby was healthy, growing on track, perfect.  There are groups on Facebook that talk about recurrent miscarriage and groups on BabyCenter to talk about losses in the 2nd/3rd trimester, and then there’s supposed to be my friends in real life.  Oh and my husband (who truly is a wonderful man, btw).  And yet it still feels like there’s no one there.  No one who understands, no one who wants to understand.  Hell, if it wasn’t my life that I was dealing with, *I* wouldn’t want to understand.  I don’t want to be around myself so why should I expect that anyone else wants to be around me?

So I’m putting it out here.  Maybe someday I can look back and see how far I’ve come.  Maybe I’ll read my ramblings and make sense of it all.