The Wreath

At Christmas time, near where I live, there is a giant wreath.  It’s made from neon lights on the frame of a ferris wheel.  With the exception of a year or maybe two, it has perched up on top of a river bluff during the holiday season for longer than I can remember.  They used to put it up the Saturday before Thanksgiving, and must do it earlier now, because it’s already been shining up there for a little while this year (not too surprising, since Christmas encroaches earlier into autumn every year, it seems).

When I was a small child, I viewed it with such innocent wonder and delight.  It was so big and so beautiful.  Reflected in my young eyes it just seemed so magical.  The wreath would show up, and other Christmas lights and decorations followed close behind, and Christmas itself could not be far off.

On the Saturday before Thanksgiving, the year I was sixteen, a man that I had a crush on took me to see it up close.  He drove us up the narrow, steeply slanted bridge, high above the ground to get to it.  I was dizzy, and not just from the height.  Then he took me back to his apartment and raped me.

I hated Thanksgiving after that.  It’s still not my favorite day, if I’m honest, but there’s a lot of food, and I like food.  I hated everything I had seen that day, every building I’d seen out of the car window, and every road I’d been driven on.  But most of all, I hated that wreath.  That damn wreath, shining like a beacon of holiday merriment from it’s lofty perch atop its bluff.  It was a symbol for everything I couldn’t feel anymore.  Joy, innocence, wonder, warmth, safety.

I couldn’t look at it.  When I went to college, and then moved away afterward, I would drive miles out of my way when coming home, just so I wouldn’t have to look at it.  As the years passed, I wanted to try to take the shorter path home.  My heart would race as I approached the fork where the bypass separated from the interstate, and my palms would sweat.  Still, I kept choosing the bypass.  Eventually, that path lost any solace for me as well, and I would have panic attacks, because I knew I was only on the bypass to avoid driving past my trigger.

Eventually I moved back to the area, and as more years flowed through the river of my life, I came to an uneasy truce with the wreath.  I could look at it, and driving past it no longer caused me to white knuckle my steering wheel.  After the passage of still more time, I even grew fond of it again.  The child like innocence and magic of it had been stolen away, never to return again, but it was pretty, especially if there was snow on the ground.

Then I tried to have children.  The holidays are incredibly hard for many struggling with infertility and loss.  First there’s thanksgiving, which is all about family.  Like the family you’re trying to have.  I imagine it’s even worse for people who are keeping the infertility private.  I’m sure there are a lot of, “so when are you going to have a baby?’ questions from nosy grandmas at dinner tables all around the world.  And then Christmas.

Lets start with the fact that Christmas is undeniably a holiday about the birth of a baby.  To a virgin.  The virgin Mary could get pregnant and carry to term, but I couldn’t.  Not for a long time.  Also, Christmas is a time of year when everyone expects you to be happy.  Nothing is quite as depressing as forced merriment.  O Come All Ye Faithful makes me burst into tears whenever I hear it.  Why that one?  I have no idea.

Then I had my daughter and I learned the hard lesson that the intense joy I feel for her doesn’t make all of the bad feelings go away.  But now there’s a heaping spoonful of guilt to go along with it.  I’m happy, but am I happy enough?  I get upset, and pressure myself to cheer up.  I really struggled to get into the Christmas spirit last year, just a few short months after another miscarriage, and I hated that.  I knew things would be exciting for my living child, and I wanted to be excited for it too.  I only get a few Christmases with her while she’s little enough for it to be magical.  I’m supposed to soak those all up.  I worry that I’m not present enough.  Not enjoying the moment enough.

I was walking out to the parking deck after work last night, and I could see it.  The wreath.  That fucking wreath.  Mocking me.  Deck the halls, you sad asshole.  Tra la la la la, la fucking la.  Be cheerful.  Don’t have that dead expression on your face.  You know, the one that makes your toddler say to you, “Mommy, don’t be sad.”  Get into the holiday spirit!  Go Shopping!  Sing some carols!  Don’t think about tomorrow being both yet another due date that never came to pass, and the dreaded Saturday before Thanksgiving.  Don’t think about the fact that you are supposed to be seventeen weeks pregnant right now, and exactly twenty three weeks on Christmas Day.  Fuck you, wreath.  Fuck you.

And you know what?  That wreath is both beautiful, and painful to look at now.  Like a lot of things about life after you’ve had to walk your path in darkness for a time.  The joy and the pain exist side by side.  Sometimes they even hold hands.  I wish more people understood that, but I’m glad for them that they don’t.

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Grieving the End

I lost another baby this week.  I was twelve weeks pregnant.  I thought I was in the clear.  I had a great sono at nine weeks, during which I saw a beautiful, strong heartbeat.  That’s only happened in one other pregnancy–the successful one.  So, as scary as it was, I ordered a “big sis” tee shirt for my daughter, and put her in it to finally announce to family last week.  I started telling friends and coworkers.  After years of lurking, I finally joined baby center and put that damn app on my phone.  I dug my maternity clothes back out because my regular clothes had gotten uncomfortable.  Little did I know, my precious baby had died about two days after that nine week sono.

I’d had a little spotting over the weekend, so I went in on Monday for a sono to check on the subchorionic hemorrhage we knew I had.  I hadn’t had any pain, so while I was a little nervous, I really thought everything was going to be okay.  Then I saw my little one on the screen, and the little flicker was gone.  I knew before they told me, there was no heartbeat.  After I went home, the pain finally came.  I’m not going to call them cramps.  I’m going to call them what they were.  Contractions.  It’s as if my body needed to be told that the baby was gone, before it could recognize it.

After my miscarriage last year, Kevin and I decided that should there be a next pregnancy, it would be my last, no matter the outcome.  I struggled with that decision through the last year.  I had been fine with only having one child, until I had another one taken from me.  Then I wanted another baby.  Badly.  When we discovered I was pregnant again, I knew our decision was the right one.  And now, in my fresh grief, it is still the right decision.  I can’t do this ever again.  It has already destroyed me.  It is the right decision.  I know that.  But oh, it hurts.

Not only am I grieving another child, another baby I was so in love with already, I am grieving that I will never have another baby.  I will never have another warm baby I have just birthed placed on my chest.  Instead, I knelt on the floor in front of my toilet, and held the last baby I will ever deliver in the palm of my hand.  My baby was so tiny, but had hands and feet and eyes.  He or she looked just like they should have, for their developmental age.  Later, I handed a plastic container containing my last baby to a lab tech at St. Francis, for burial.  I know they’ll treat my baby with love and respect, but it’s possibly the hardest thing I’ve ever had to do.

My last trip to Labor and Delivery was to receive a rhogam injection.  So I won’t risk developing antibodies to positive blood types, which could be dangerous to a future baby during pregnancy.  A future baby that will never exist.  A pregnancy that will never happen.

Earlier this evening, I watched my husband and my daughter chase each other around the backyard, squealing.  I was such a beautiful sight.  It filled my heart with love.  And sadness.  I tried to hold it back, but I couldn’t.  I cried.  I sat there with tears rolling down my face, because my daughter will never have a sibling to play tag with in the back yard.  Never.  Never is such a cold reality.

Every first my daughter has will be my last first as a mother.  There will only be one first day of preschool (though I will always know when all of the other first days of preschool should have happened).  There will only be one first lost tooth, one first dance, one graduation from high school, and on and on and on forever.  And I am lucky to get those.  But this time, I really thought I was going to get my dream come true.  And it’s such a hard dream to let go of.

 

On The Day You Weren’t Born

On The Day You Weren’t Born

 

On the day you weren’t born

There were no flowers or balloons

It was Cold

I went to work

I smiled woodenly at people

Didn’t think it looked real

But seemed to fool them

People asked how I was

I told them, “Good”

I wasn’t good

On the day you weren’t born

 

On the day you weren’t born

The sun didn’t shine all day

So the sun, at least, was respectful

I toiled through my workday

It was an ordinary day

How dare it be such an ordinary day!

Didn’t the universe know?

It was supposed to be world altering

It was supposed to be your Birthday

At the very least, it could have been not so boring

On the day you weren’t born

 

On the day you weren’t born

I excused myself to the ladies room more often

Cried alone in the stall

Why is this so hard?

I’ve done it before

Pretended my world wasn’t crashing down

Continued to function like a normal person

I should have known it would be this hard

After all, I’ve done this before

I should have taken vacation

On the day you weren’t born

 

On the day you weren’t born

It rained all the way home

The flags were at half-mast

“That’s more like it,” I sobbed

Finally I could let it out

This pain I’d held all day

But only for half an hour

I raged

I screamed alone in the car

But only until I got home

On the day you weren’t born

 

On the day you weren’t born

I got home and kissed your daddy

I hugged your sister extra tight

We ate dinner

We nursed and Daddy read a story

I held her warm, sleeping body close

A few extra minutes to feel her breathe

Before I placed her in her crib

I thought about the empty bassinet

Tucked away upstairs

On the day you weren’t born

 

Another Love Letter

Sweet Baby,

You were a surprise.  Your big sister was about 13 months old when Mommy didn’t feel very good.  My hands shook holding the test as I looked at that beautiful second blue line.  You were my first baby I found out about on a home test, instead of a blood test, so it was the first time I’d ever gotten to see two lines.  I was so shocked that it took me a while to register happiness.  I was very happy, though.  Just so very confused.  Daddy was happy right away.

Spontaneous pregnancy was a new thing for us, and we reveled in feeling like a normal couple.  I started progesterone and heparin the next day, which made me feel a little less normal, but I’d do anything for you, my little love.  Still, the early days of pregnancy were mostly relaxed and happy.  Of course I worried some.  With my history it’s hard not to.

At my nine week sono, I got to hear your heartbeat.  It was faint, irregular and slow.  Just 97 beats per minute.  And I knew that you would not live.  Your shaky little heartbeat was beautiful and heartbreaking in the same instant.  You were so tiny, more the size of a 6 week embryo than a 9 weeker.  I knew, that like all but one of your siblings, I would never hold you outside of my body.

I understood our time was limited, so I did my best to let go of the worry.  For the next week, I focused on loving you.  I stroked my belly, which was already rounded.  I talked to you.  I sang to you.  I loved you.  I tried to pour a lifetime of love into you.

I don’t know when you died, but a week later you were gone.  It was the first really clear look we got at you on the sono.  So still.  No flickering heartbeat anymore.  Still tiny.  I have a picture.  I’d rather have you.

Maybe those feeble little heartbeats I heard were among your last, and you were already gone by the time I got to the car.  Maybe the womb I sang to all week was already a coffin.  I’ll never know.  But that week…  I loved you with every fiber of my battered heart.  I’ll love you forever.

 

Love,

Mommy

The Long Road

I’ve been on vacation the last couple of weeks.  I intended to write a lot, but I didn’t.  I’d love to tell you that it’s because I was busy, doing exciting things out of the home, but I wasn’t.  The truth is, I’ve been binge watching The X-Files, and playing a lot of World of Warcraft.  Not terribly exciting, but they’ve been excellent distractions, for the most part.  I did forget how often fertility treatments are mentioned in The X-Files.

So, last spring, Kevin and I decided that we could, just barely, afford IVF.  It would wipe out most of our savings, but who wants a house, or vacations, or security anyway?  We decided to move forward with it, and put it to rest, one way or the other.  As I’ve mentioned previously, facing the end of the road is terrifying, but I had a tiny glimmer of relief that my four year long nightmare was almost over.  Come July, we’d be done, one way or the other.  Or so I thought.

The prep for IVF in July started in May.  After my May period, I was put on birth control to suppress my hormones until it was time for ovary stimulation.  In late June, they took me back off birth control, and did a baseline sono and labs a few days later.  The sono looked fine, apart from me already having a 14mm follicle on one ovary, but my estradiol ( a form of estrogen) level came back at 104.  It needed to be under 50 to start stimulating meds.  High estrogen might seem like a good thing, but bear in mind that birth control is estrogen.  So basically, I was making my own.  My R/E’s office told me not to worry, we’d check it again in 2 days, and it would probably have gone down.  Rather than having dropped, two days later it was over 200.  My R/E’s office told me we’d check it in another 2 days, but if it hadn’t dropped below 50 by then, we’d have missed the window for IVF.  I also hadn’t started a period yet.  On the day of my 3rd draw, it was 250.  Do not pass go. Do not spend $10,000.  Go directly to infertility purgatory.  I failed at IVF before I could even start it  A few days later, I finally started my period.  My R/E gave me a cycle off of birth control, and then put me back on it after my 2nd period, to get me ready for an attempt in September.  We chalked my estradiol levels in July up as a fluke.

It wasn’t.  When I came off birth control in late August, I had these sky high estradiol levels again.  However, this time, they had built more time in to my schedule, and we were confident it would come down in time.  Well, my body was not to be outfoxed, and my levels stayed high for even longer.  Two weeks after I came off birth control, I was given a shot of progesterone in oil (I’ve had a lot of shots, so I’m no sissy about them, but Damn, that Hurt), to kickstart my period.  It didn’t work.  We missed the window again.  Another two weeks after the shot, I finally had my damn period.

By this point I started googling.  I wasn’t actually looking for answers.  I trust my R/E, and I knew he was looking for answers for me.  I was looking for other women this happened to.  I needed to know that I was not alone.  As it turned out, I was alone.  Every time I thought I had found something, the story would turn out like this:  Woman has high estadiol, and is unable to start IVF.  On the next cycle, her R/E puts her on birth control the month beforehand, and it clears the problem right up.  I dug, and dug, and dug, and came up with nothing.  It’s lonely not to find anyone else with the same problem as you in the vastness of the internet.

I had a consultation with my R/E to come up with a new plan.  He was quite perplexed.  As I had been scouring google, he had been scouring medical literature.  He also came up with nothing.  I just have to be one of a kind, you know?  Anyway, he did have one idea, based on the only patient he had ever treated with similar estradiol levels to mine.  We would check my estadiol levels now, since I was on day 3 of my cycle (ironically long awaited for), and if they still came back high, we’d draw more blood, and send it to a reference lab, as he’d done with the prior patient.  That was how he figured out that her high estradiol levels were false results.  She turned out to have an antibody to mouse cells, and the test at her local lab used mouse cells in their test.  You want to know how you get antibodies to mice?  From eating cereal.  Because cereal is allowed to have a certain level of mouse feces in it.  I don’t know about you, but I’m having eggs for breakfast tomorrow.

My estradiol level came back appropriately low.  No need to send it to a reference lab.  My levels were not false.  In any case, the new plan was not to put me back on birth control.  It obviously was not producing the results we wanted.  Instead, we’d do some mid-late cycle blood work.  If that blood work showed I hadn’t ovulated (the expected result, since I’m anovulatory), they’d started me on Lupron injections to trick my body into thinking I had so I would start a period at the appropriate time.  It’s a strange feeling to switch from wanting your period to stay away, to needing it to start.

When I received the call about that blood work, I was actually sitting in Occupational Health, as I had fallen down a flight of stairs at work, on my way to get the labs drawn, so obviously I was having a pretty good day.  Oddly, the labs showed that I had ovulated.  What the Fuck, ovaries?  So the good piece of news there was that I would probably have a period soon.  It also explained why I spent a week thinking of nothing but sex…  No, that’s too polite a word…  Fucking.  Seriously.  I couldn’t focus on anything.

About a week later, I started my period.  We did a baseline sono, and labs.  Again, the sono looked great, even better than my previous ones.  this time, my estradiol was below 30.  I was go for IVF.  I’d made the November window.  I felt like I’d already run a marathon before the race whose starting gate I stood in.  I was supposed to be done with all of this back in July, one way or the other.  I am so fucking tired.

Is That the Light at the End of the Tunnel? Or is it a Train?

So, I mentioned a few posts back that I would talk about something that has been hard for me to talk about.  That thing is IVF.  This past spring, after the failure of my 15th IUI, my R/E told me that it was time to move on to IVF.  “We have to stop doing this to you,” he said, “It’s exhausting, I can tell you’re exhausted, and I can’t stand here and not do something for you.”  He’s a wonderful man, and he vowed to find some way to make IVF financially attainable for Kevin and I.  I asked if we could continue to do IUI’s while we worked out a plan, and he agreed to do so.  As it turned out, we only did one more IUI before attempting to prep for IVF.  So I’ve spent most of this wretched year trying to do IVF.  The details of that journey are for other entries.

The transition for IUI to IVF has made blogging really hard for me.  I was comfortable in the world of IUI.  I did 16 of them.  I was a veteran.  I am a small, scared child in the world of IVF.  Technically speaking, there are minimal differences.  The course of medication is very similar, and the transfer of embryos back into my body at the end of it all is remarkably similar to the transfer of semen into my uterus during an IUI.  The differences for me are one additional injection a day, much closer monitoring, and of course the harvesting of eggs.  Not so much more, technically speaking.

The reason IVF has been so hard for me to write about is that it is the end of the road.  It’s not the end of all roads, but it is the end of this one.  IVF is the big gun.  There are no other treatments after this.  This is our last shot in the dark at children that are biologically Kevin’s and mine.  Even with our R/E’s generosity (and the generosity of a couple of beautiful ladies who donated medication to me),  IVF is very expensive, so this will probably be a one shot deal for us.  So we are very close to the end of treatment.  It’s terrifying to be able to see the end of the road, but not know what is waiting there.

When I’ve told people about moving forward with IVF, for the most part they express excitement for me.  It’s okay to do so.  I understand that this is an offer of moral support, and I desperately need support.  Sometimes it’s just hard for me to explain to people why I don’t seem to be excited.  I’m cautiously optimistic, but I can’t jump up and down for joy.  This is the scariest thing that I’ve ever done in my life.  All of my most precious hopes and dreams are riding on this gamble (and make no mistake, IVF is a gamble) paying off.   I’m spending most of my energy trying not to wet my pants in terror.  So be excited for me, just be gentle with me if I seem prickly.  Resist the urge to tell me to think positive when I come off as the Dark Queen of Depression.  I do think positively, it’s just that thinking positive looks a lot different when someone in my position gathers up the courage to do it.  And it does take courage.  It takes courage to get up everyday, brush my teeth and put clothes on.  Sometimes I forget that.  Maybe I need to be gentler with myself too.  I know it’s not the easiest thing to support someone who is so raw.  That takes courage too.  I really appreciate all of you who have supported me, even when there is little reward.  I promise you, I will remember.

All of the Darkness in the World Can’t Overcome the Light of a Single Candle

I promise this entry is less painful than the last.  Today’s entry is about observing October 15th.  I say observing, because celebrating isn’t really the right word.  We’re remembering lost babies, and while some of us may have some happy memories associated with these lost little ones as well as the sad ones, it’s a solemn occasion.  One to be carried out with reverence.

So first lets talk about why we observe October 15th, and then we’ll get into how we observe it.  We observe it, because infant & pregnancy loss isn’t something we talk about much.  And yet, it happens with shocking frequency.  While there are different forms of infant and pregnancy loss, my primary focus is miscarriage.  Unfortunately I have a lot of experience with it.  One in four pregnancies will end in miscarriage.  There’s a meme which says, “One in four is not just a statistic, it’s me.”  I’d post it, but it’s not me.  With three consecutive miscarriages in the space of ten months, I’m at a whopping 100% of pregnancies ending in miscarriage,  In any case, one in four pregnancies ending in miscarriage means there are a whole lot of couples out there grieving, many of them suffering in silence.  October 15th is a day for us to break the silence.  It’s a day for us to remember our babies, and a day for others to stand in solidarity with us.  A night to light some of the darkness.

To observe October 15th, we participate in a wave of light.  At seven pm, we light a candle (Kevin and I will light three–one for each of our children), and leave it burning for at least an hour.  We leave it burning at least a few minutes longer than an hour, so that the next timezone’s candles will be lit before ours are extinguished.  With the light passing from timezone to timezone this way, candles should be lit around the world for 24 hours.

So tomorrow (today, for some of you), think about recognizing the lost babies.  If you know someone who has experienced loss, tell them that you are thinking of them today.  Some places do remembrance walks.  Participate in one if you are inclined, or just go to support the walkers.  Or simply light a candle.  Because all of the darkness in the world can’t overcome the light of a single candle.

It is Not My Job to Make You Comfortable With My Tragedy

I will not sit quietly in the corner anymore because what happened to ME makes YOU sad.  I won’t stay silent because you are afraid that I am somehow contagious.  I refuse to hide MY grief because YOU don’t know how to cope with it.  Do not ask me to.

You might not want to believe this, but I actually have been directly asked to do just those things.  An old friend told me it would be great to catch up with me, and that we could talk about anything but the contents of this blog.  I don’t even know how to respond to that (though I suppose this is a response).  If you don’t want to hear about this, then you don’t really want to catch up with me.  I can’t even respond to the statement without talking about infertility and the loss of my children.  If that sounds like infertility is running my life, that’s because IT IS!  It’s not because I want it to, believe you me.  The fact of the matter is that infertility touches everything in my life.  I don’t get to not think about it.  For example:  What have you been up to lately?  Mostly fertility treatments.  Hey are you guys going anywhere on vacation this year?  No.  We were going to, but then we found out we have to do IVF, so we can’t afford to go on vacation.  Are you guys thinking about buying a house?  We would love to, but it’s hard to scrape up a down payment when IVF costs tens of thousands of dollars, and adoption costs even more.  Do you want to <<random event/activity>> on <<future date/time>>?  I don’t know.  I might be in the middle of IVF (if my stupid, broken body will ever cooperate and let me start the process).  What did you do over the weekend?  We went to the cemetery to put flowers on our daughter’s grave.

I repeat, we went to the cemetery to put flowers on our daughter’s grave.  Our daughter, who will be dead for the rest of our lives.  Her grave, which will be there long after we are dead.  If that doesn’t make it real for you, I don’t know what will.  You could go to the cemetery with me, and see the grave of my daughter, and the other miscarried babies buried in the same plot with her.  You could see ALL of the plots that St. Francis Medical Center has done a mass burial in, four times a year, EVERY YEAR.  You could see the graves all of the later term losses, and infants who had bitterly short lives.  In short, you could visit THOUSANDS of dead babies in one cemetery alone.  Does that make you uncomfortable?  Good.  It should.  Babies die.  No one is immune.  Closing your ears and heart to me will not protect you.  Now imagine (as best as you can) the pain of all of those babies’ parents.  You won’t even be able to come close, and I don’t want you to be able to, but try.  That should make your discomfort with the subject feel pretty small and insignificant.  Remember that, when you try to brush me off.

Very few people have outright asked me to stifle myself like that, but most people have asked me to shut up in a less direct way.  I’d imagine most of them would deny that they had done that.  Most of them don’t even realize they effectively taped my mouth shut.  But every time you uncomfortably change the subject, you are telling me I cannot talk about what is happening to me.  Every time you can’t look me in the eye, or you avoid me altogether, you are begging me to pretend to be someone that I am not anymore.  Every time you hand me a platitude, or unsolicited advice, you are screaming at me, “For the love of god, woman, shut the fuck up!”  Well I am tired of shutting the fuck up.  And frankly, I don’t have the energy to worry about everybody else’s feelings anymore.

Stop trying to fix me.  Nothing you can say to me will cause me to respond, “Gee, I never thought about it like that before.  I feel swell now.  Thanks!”  Don’t tell me about this couple you know who tried for a thousand years to get pregnant, and then, poof, got pregnant (with twins, no less) the moment they stopped trying/adopted.  They have nothing to do with my husband and I.  You only hear about these stories because they are the amazing ones.  No one talks about the 95% of people who did not get pregnant after they stopped.  Oh, and there’s nothing magical about adoption that gets you pregnant.  The numbers are the same there.  But mostly, don’t say it because there is a judgment in that statement.  That statement says that this is my own fault, whether that is what you intended to say or not.

Don’t tell me that some people have it worse then me.  I know that.  What if I told you that you shouldn’t be happy because other people have it better than you?  That’s absurd, right?  Your happiness is still valid.  So is my pain.  And frankly, you wouldn’t tell someone who’s DOG died that they weren’t allowed to be sad about it because other people have it worse, so why would you tell someone who has lost a child, or is facing infertility, that?  Because it makes you feel better, that’s why.

Oh, and yes I’ve heard of adoption, and unless you have adopted, are in the process of doing it, or are seriously researching it, I know more about it than you do.  I know that they actually don’t sell babies at Babies ‘R’ Us…  Not even online.  I know that it’s complex, expensive, time consuming and potentially filled with more loss.  I know that if one day we manage to afford it and are lucky enough to successfully adopt, it will be wonderful and I will love them as if they came out of my vagina.  I know that it will not fix me, like you think it will.  I will still be infertile.  I know that it is an extremely personal decision.  I know that whether or not my husband and I ever decide to do so is none of your damn business.  I know that they kill little baby girls in parts of the world where women are not valued.  That does not change jack shit about my situation.  It doesn’t make it any easier to adopt.  It certainly doesn’t make my children any less dead.  What it does make me painfully aware of is that while I’m struggling to have a child, people who have no problem doing that are killing their babies.  Gee, thanks!  I feel swell now!

I know that certain aspects of child rearing are not exactly fun.  Poop is messy and stinky and I would cut my right arm off to be cleaning up my child’s diaper blowout up right now.  I know that sleepless nights upon sleepless nights can be a living hell.  I am living in my own hell right now.  I know that morning sickness can be terrible.  I’ve had it, and it was especially terrible when I was still throwing up after we already knew our precious baby was dead inside of me.  It took my body a while to get that memo.  I know that it hurts when your milk comes in.  It certainly hurt when mine came in, and I had no baby to nurse.  I know that raising a child is very expensive.  I don’t get out of any of that, just because I’ve already spent thousands of dollars, and will spend tens of thousands more for no guarantee that I will ever be a parent.  I know that if I ever am lucky enough to have a child, that I too will complain about all the things that suck about parenthood.  And you know what?  I’ll have every right to do that.  Just not to people who are still struggling to have a child.

Don’t get me started on platitudes.  I have heard them all.  “Everything happens for a reason.”  “It just wasn’t meant to be.”  “It was part of God’s Plan.”  Just don’t say these things.  Not to me.  Not to anyone else.  I know you’re going to come at me with, “everybody grieves differently, and some people might be comforted by that.”  That is true, but overall, people do not find these statements to be comforting.  You can google it.  The internet is full of articles telling people not to say these things, and just as full of comments sections where people defend their actions.  See http://tertia.typepad.com/so_close/2004/05/how_to_be_good_.html for one example. What you need to understand is that this type of thing can make even people with strong religious beliefs (which I do not have) experience a crisis of faith.  The thought of a god who required the deaths of my babies for some enigmatic plan actually makes me feel one hell of a lot worse than living in a random world where there are no reasons.  Don’t say, “but that’s what I believe.”  It doesn’t matter what you believe.  If you’re trying to comfort someone else, it matters what they believe.  Everything happens for a reason is just a secular way to say the same thing.  The reason that these throwaway statements are painful is that they suggest to the bereaved that we shouldn’t be sad.  That our grief is something to be ashamed of.  I know what you’re thinking.  You’re thinking, “but I mean well,” and possibly, “it’s not my fault she’s so damned oversensitive.”  I’ll let you in on a little secret about meaning well…  If someone tells you that your well intentioned statement was painful to them, and your immediate reaction is to be offended and get defensive, then you don’t really mean well.  And of course I’m sensitive.  My heart has been torn to shreds.  I’m not overly sensitive, though.  My feelings are valid, whether you think they are or not.  I’ll let you in on another secret.  When someone tells you that you have hurt them, you don’t get to decide that you didn’t.  Some of you are probably wondering why I can’t just accept that you mean well, and meekly thank you for your kind words.  Look, there’s a reason I’m pointing all of this out, and it’s really not to make you feel like a jackass.  The stark truth is that if you say something painful to me, and I don’t have the courage to tell you that it hurt, then you’re going to go on being well meaning, and accidently hurt more people.  I know you don’t want to do that.  But if you continue to say these things because being right is more important to you than being sensitive to other people’s feelings, then I guess I do want to make you feel like a jackass.

Another thing I don’t want is for you to tell me that there was probably something wrong with the baby.  I happen to know definitively, in the case of my 2nd pregnancy, that there was something wrong with the baby.  My daughter had a fatal chromosomal abnormality.  That doesn’t make me feel any better that she died.  In fact it’s all the more frustrating that I lost a daughter to random chance.  My stupid body might actually have worked that time around, but it didn’t matter, because she had a fatal abnormality.  It’s all so fucking UNFAIR.  I know that life is not fair, but this is fucking ridiculous.

“So what does that leave me with?” you ask, “Cuz frankly it sounds like I can’t say anything to you.”  I’m sorry to say that I don’t have much to offer you here.  There’s just not much you can say to make me feel better.  And that’s okay.  I’m actually allowed to feel shitty.  But it’s possible that you can maybe make me feel less shitty.  You can do that with a simple, “I’m so sorry that this happened to you.”  You can even say, “I don’t know what to say.”  I know you don’t.  That’s okay.  What’s not okay is to hurt me so you can feel better.  So, don’t do the things I’ve talked about here, but don’t ignore me either.  Don’t think that it’s been too long to tell me that you’re sorry my babies are dead, and that you’re just going to bring up something I’ve managed to put behind me.  I haven’t.  It’s never too late.  I haven’t forgotten.  How could I?

I know it’s hard to think about what has happened to me, let alone talk about it out loud.  Acknowledging that things like this happen is scary, because it means it could happen to you.  It makes you uncomfortable, and I don’t have the energy to fix that for you.  As terrible as it feels for you to think about these things, it feels worse for me to live them.  The fact that you can’t fix me makes you feel helpless.  I can’t pretend to be fixed just to make you feel better.  I’m drowning in an ocean of grief.  Keeping my head above water is a full time job, and I’m managing, but I just don’t have anything left over to help you weather the waves.

This blog entry makes me sound angry, because I am.  I. AM. ANGRY. DAMMIT!  And I’m tired of that not being okay.  I’m tired of swallowing back my anger and my pain, so that I don’t make anybody feel uncomfortable.  And if I can’t talk about how this really feels during Infant and Pregnancy Loss Awareness Month, when can I?  My feelings are valid.  I am angry, and you would be too.  You would be angry that none of your babies survived the 1st trimester.  You would be angry that you were expected to go to work function like a normal person while you knew you were carrying your dead children within the coffin that is your womb.  You would be angry that you found out your child was daughter from a pathology report, instead of a much anticipated gender scan.  You would be angry that no one told you that you could attend a service when the hospital buried her.  You would be angry that the world at large does not seem to understand you, and seems to wish you would just go away.  You would be angry that everyone expects you to be fine just days after a miscarriage.  You would be angry that people get cards when their pets die, but you didn’t receive any when your babies died.  You would be angry that people expect you to be the same person you were before something so completely life altering happened to you.  You would be angry that you can’t be the same person you were.  You would be angry (and frightened) that you don’t even know who that person in the mirror is anymore.  You would be angry that you have to explain these things to people.  You would be angry that sometimes you don’t have the strength to do that.  You would be angry that the littlest things hurt, and you can’t help it.  You would be angry that you can’t stop being angry.

Another Facebook re-post

This one was written just a few short months after the last one.  Almost two years ago.  Re-reading it, the emotions come back as fresh as if it happened last week.

The second time around…

October 11, 2013 at 2:54pm

…things were different.

I knew before the phone call.  When I spotted, I knew it was implantation spotting.  I knew why my breasts were sore.  I knew why my bras were getting tight again.  I pretended not to know, purely for self preservation.  I must not get excited, especially now.

The day of my blood test, I casually said to Kevin, “I will be very surprised if this test comes back negative.”

“Oh?” he asked, “Why is that?”

“Because I can’t shove this pizza in my mouth fast enough.”

So the following day, when my phone rang at work, I was somewhat calmer than usual as I stepped into the hallway to take it.  I was relatively certain I would not be forcing back tears when I returned to my desk.  I still had some nerves, but they were for the next test that I was pretty sure would be coming.  I wasn’t surprised to be told:

“We did it again.  Your result was 114”

I was a little pleasantly surprised at the number.  114 sounded much better that 33.  I wasn’t as ecstatic this time.  I was still happy, and there was the same rush of fierce love.  However this time it was tinged with dread and worry.  All my hopes and dreams hung on the second draw.  114 was a good number, but the initial number means nothing.  It has to double.  Please, please let is double this time.

Two days later, the news wasn’t what I had hoped for.  My hcg had risen to 193.  I expressed my worry that it hadn’t doubled, but my doctor’s office assured me that it was within the normal range.  After all, it’s supposed to double in 48 to 72 hours.  At the rate my level was going, it would be doubled by 72 hours.  I couldn’t relax, though.  I knew I wouldn’t be able to until I made it to that first ultrasound.

My 3rd blood draw still felt like a milestone, though.  That was further than I had made it last time.  It was on a Friday, so I had the whole weekend to stress about it, since I wouldn’t get results back until Monday.  On that Monday, there wasn’t anybody in my doctor’s Peoria office, and the Rockford office was really busy, so I didn’t get my results back until mid afternoon.

“It was 250.  I’m so sorry.”

Oh my God.  This is not happening to me again.  It can’t be.  It’s what I’ve been preparing myself for all along, but…  It just cannot fucking be.

The nurse told me wanted me to go to St. Francis right away and have a repeat hcg drawn stat.  She sent them an order and also emailed it to me to make sure it got there.  The email contained those three little words again.  “I’m so sorry.”  Luckily my sister was there.  I was in no shape to drive.  I called Kevin to tell him what had happened, and that I was on my way to the hospital.  I called my mom on the way back home.

A couple of hours later found me back on the phone with the nurse.  Shockingly, my hcg level was now at 584.  I think the nurse was just as surprised as I was.  She arranged for another stat lab to be drawn at St. Francis on Wednesday.  Thank heaven.  I don’t know if I could have retained my sanity if I had to wait a day for those results.  I told Kevin that I hoped this pregnancy wasn’t just going to limp along for a while before ultimately failing.  I didn’t know if I could take that.

That Wednesday’s results were a whopping 1495.  Way to go, Baby!  Still, I knew our little one wasn’t out of the woods yet.  Since my level had passed 1000, it was time to schedule an ultrasound.  The nurse scheduled it for the following Friday (6 weeks, 5 days), and Kevin and I spent a tense week and a half waiting to see if everything would be alright.

Dr. G. started the ultrasound by looking at my ovaries, which were so enlarged and covered in cysts that it was hard to tell where one ended and the other began.  I wanted to scream at him, “Just look at my uterus already!  Tell me there is a baby in there and that it is okay!”  After what felt like an eternity, but I’m sure was mere minutes, he finally gave up trying to count the cysts and moved on to my uterus.

I knew almost immediately that everything was not okay.  The sac just looked so tiny, and there sure didn’t seem to be anything in it.  Dr. G explained, as he moved the ultrasound wand into terribly uncomfortable positions (Early ultrasounds are done with a transvaginal probe, by the way), that he was having trouble seeing the pregnancy sac clearly due to where it was implanted and the position of my uterus.  Evidently, it is tipped backward.  After a second eternity, he told me, “I cannot tell if there is a heartbeat.  You need more time.  We will do another ultrasound next week.”  I raised my concerns about the size of the sac, and he confirmed for me, “It is very small.  It should be bigger.  We can only wait and see.”

Wait and see.  I think if I ever write an autobiography, the title will be “Wait and See.”  It definitely became our motto over the next few weeks.  Wait and See.  At 7 weeks, 3 days, the sac was not very much bigger, but I had developed a yolk sac.  It took up one whole side of the pregnancy sac.  It’s not supposed to.  The fetal pole could not be seen.  Dr. G. told me, “It doesn’t look good, but it still could be okay.  Stranger thing things have happened.”

“No,” I replied, “I’ve seen this scenario play out before.  I know how it ends.”

He reached over and patted me on the knee.  “I know.  I’m so sorry.”

I burst into tears.  I think that’s the most vulnerable I have ever been in my life.  Crying while still in stirrups, naked from the waist down, in front of Dr. G. and a resident.  After I got dressed, Kevin and I numbly walked out to the desk to make our appointment for the following week.  Come to think of it, “I’m So Sorry” might make a good title for my memoirs, too.  I don’t mean that I don’t want people to tell me that they’re sorry.  It means the world to me.  I just don’t want there to be a reason for people to be sorry.

At 8 weeks, 3 days Dr G. prepared me before the ultrasound by telling me that if things have not improved, we will have to give up on this pregnancy.  I nodded.  I had already been preparing myself for that since the first ultrasound, or since the first bad hcg result, really.  We were all shocked to see that there had been a huge leap in growth since the previous week.  The pregnancy sac is much larger, and Dr G. said that he couldn’t ask for a more perfect yolk sac.  There was even a tiny tiny fetal pole.  Still, there was no visible heartbeat.  It may have just been too small to see just yet.  At that point, Dr G. said to be “cautiously optimistic.”  By that, he meant cautiously optimistic about the pregnancy, not necessarily the health of the baby.  I was 2 weeks behind developmentally and that is a very serious thing indeed.  He explained that if the pregnancy was to continue, I would have to be monitored very carefully, and have a lot of testing done.

I had thought I’d been numb the week before.  I walked out of the appointment shell shocked.  I had really already given the pregnancy up for lost.  Now it wasn’t over, but there was, in all likelihood, something seriously wrong with the baby.  People kept telling me to think positive.  That everything was probably fine.  I know that they meant well, but it just angered me.  Everything was not fine.  You just can’t be 2 weeks behind that early and everything turn out okay.  I wasn’t just being negative.  I was being realistic.

At 9 weeks, 3 days Kevin couldn’t go to my appointment with me, so my mom did.  I didn’t think I could face it alone.  Thankfully, I didn’t try to.  The news was the worst.  Growth had stopped.  There was no cardiac activity.  My mom hugged me and said, “I’m so sorry.”  Dr G. said we should try to let my body miscarry on it’s own but to call them on Monday if I hadn’t had any bleeding.

I hadn’t started bleeding by the following Monday.  They did a D&C on Tuesday.  The procedure itself was quick and painless.  The worst part was knowing what they were doing.  In the surgical consents, there was a page I had to fill out regarding what to do with the remains.  I wasn’t prepared for that.  I cried.  I opted to let the hospital take care of it.  I know St. Francis will treat my baby with reverence.  The good part about having a D&C is that they can run tests, and maybe I will find out what went wrong with my precious baby.

About a week after my D&C, I looked down and noticed a wet spot on my shirt.  At first I didn’t think anything of it.  I thought I must have splashed it while washing my hands.  However, a couple of hours later I looked in the mirror and saw that there were several spots and drips down the right side of my shirt.  The dried ones were stiff and sticky.  As I looked, the one at the tip of my breast spread.

I can’t begin to express the horror I felt.  I was lactating.  As if my lack of a baby hadn’t been driven home enough by that point.  I sat in the tub that evening with leaking breasts and bawled.  It was so painful.  In addition to the emotional pain, it was among the worst physical pain I have felt in my life.  And I could do nothing about it.  I grew angry with my breasts.  Show offs!  Assholes!

That went on for about 4 days.  It stopped, and though I’m still having occasional twinges of pain, thankfully I’m having no leaking at this point.  My prolactin level is still elevated, so I’m starting medicine today to bring that down.  My hcg is also still elevated (it’s at 109).  It’s ironic that 2 and 1/2 weeks after my D&C, I would test positive on a home pregnancy test if I took one.  Cruel of my body, really.

In 3 weeks I’ll have both those hormone levels tested again.  Hopefully they will have dropped.  We can’t move on with any other testing until they do.  And in the meantime, I am anxiously awaiting the pathology report on our baby.  He or she was surely a fighter, if nothing else.  Our baby fought so hard to live, and I am so proud of the little thing.

October is Infant and Pregnancy Loss Awareness Month

So I thought I should post more this month.  I’ll start with some old posts from Facebook, and then I’ll try to talk about the things that have made it really hard for me to write for months, now.  This first post is a note I wrote on Facebook shortly after my first loss.

For just one moment…

June 24, 2013 at 3:50pm

…everything was perfect.

On June 6th, I anxiously awaited a very important phone call.  I was waiting for my doctor’s office to call me with the results of the previous day’s blood work.  “It will be negative,” I told myself, despite my sore, swollen breasts, “they are always negative.  Don’t get hopeful.  It will only hurt worse.”  After two years, it’s hard to hope for a positive test.  I was growing more nervous by the minute.  It was almost 11:00.  The dreaded phone call is never that late.  Finally the phone rang.  My doctor’s number showed on the caller ID.

“Hello?” I answered cautiously, bracing myself for the disappointment and tears to follow.

“Autumn?  How are you?”

“I guess I’ll know in a few seconds how I am.”

“Well you had a positive result at 33.”

“Oh My God!”  I screamed loud enough for the receptionist to hear me through the phone.  I could hear her cheering for me in the background.  We set up an appointment for the following day to draw some more blood to make sure the number doubled like it should.

When I got off the phone I was shaking.  I did cry, but out of blissful happiness.  I was instantly in love.  The sore breasts had not been in my head.  The very light spotting I had noticed a few days prior had been implantation spotting.  It was surreal, and would take a while to sink in.  I was by turns ecstatic, and scared shitless.  I ran some errands, suddenly very aware of the seat belt resting on my pelvis.  The world became a scary place I needed to protect another from.  I wanted to buy a home test, but knew 33 was too low to show on most of them.  Besides, I already knew.  Still, I wanted so badly to see those two lines I have been denied for so long.  I would wait until the number got higher.  I could wait til the next week.

Thirty-three was awfully low…  I’d feel better if was a little higher.  I reminded myself that the initial number does not matter.  Only the doubling matters.  I resolved not to google it.  I would not make myself paranoid about all the things that could go wrong.  I had no reason to believe anything would go wrong.  I calculated my EDD.  February 12th.  My cousin’s birthday.  Two days before Valentine’s Day.

I tried to decide how to tell Kevin.  It couldn’t be anything very elaborate.  After all, he knew I was getting the call that day, and would be expecting an answer when he walked through the door.  So, no creative surprise announcement.  Yet another thing we have been robbed of.  I settled for simple.  When he walked through the door, I looked up at him and said, “Welcome home, Dad.”

“Really?”  he responded.  I will never forget the way his face lit up.

“Really,” I confirmed with a smile, as he took his glasses off to wipe his eyes.

“Well come here,” He said, and I went to him.  We held each other and cried for a little while.  Then he said, “Well I think this is something to celebrate.  Where do you want to go for dinner?”

I chose One World.  It’s where we told his parents we were getting married.  It’s where we had our rehearsal dinner.  We have had so many wonderful, happy times there.  We added another.  Our first dinner as a family.  One day we would tell our children about it.  After we got home, Kevin fretted about how small the apartment is, and I secretly fell more in love with him for it.  We told ourselves we would spend the next four days until I got the results of the 2nd test back not getting too excited yet, but also not being paranoid.  We decided if the numbers looked good, we would tell our families on Father’s Day.

“I love you,” I told him as we were going to sleep.

“I love you too,” he responded, “Both of you.”  It was the most beautiful thing I ever heard…  More beautiful than the first time he told me he loved me.  “Or however many of you there are,” he amended.

We spent the most glorious weekend dreaming about our baby.  We told my sister and brother-in-law, who took us out for a celebratory dinner.  Kevin didn’t think I was silly for wanting to take a test so I could see two lines, and suggested that I take a photo of it, to put in our big multiple opening frame.  Then we could document my whole pregnancy with photos and put them in that frame.  I went to work on Saturday and Sunday with the most wonderful secret.  On Sunday, though I told myself it was far too early to do so, I looked at Nursery wall decals.  I even found the perfect one.

“Golden Slumbers fill your eyes.

Smiles awake you when you rise.

Sleep pretty darling, do not cry,

And I will sing a lullaby.”

I was awakened Monday morning by my phone ringing.  My doctor’s number showed on the caller ID.  But it was so early.  They never call with test results so early.

The numbers didn’t double.  They didn’t even rise.  Friday’s level was 28.  Twenty Eight.  Our moment was over.  I made arrangements to come in for a confirmatory level, knowing there was no hope.  Only hoping for the number to continue to drop, so I would know it was a miscarriage and not an ectopic.  I called Kevin at work for the first time.  I called my mother, sobbing, to tell her the pregnancy I hadn’t even told her about yet was already over.  She started sobbing and immediately left work to be with me.  Kevin was home soon after that, having stopped on the way home to tell his mother.

It took almost a week for the miscarriage to start.  It was hell.  I spent a week knowing that our baby was dead inside me.  Inside the defective body that couldn’t keep him or her alive.  It may only have been the size of a poppy seed, but it was our poppy and we loved it fiercely.  Still do.  Always will.

It’s been two weeks.  Sometimes I think I’ll be okay eventually, and other days…  I feel like the sun will never shine again.  I live from day to day.  Being in public take so much out of me.  Normal, basic interaction with people is exhausting.  Appearing normal takes everything that I have.  Acting like I don’t have this black depth of despair eating my soul.  Hopefully writing this down will help me drain some of the poison from the wound.  That’s not why I wrote it though.  I wrote it to help me remember.  I don’t ever want to forget.