October 15th – Babyloss Remembrance Day

I will admit, before my miscarriage, I had no idea what October 15th stood for.  I had no idea because it didn’t affect me, it didn’t affect my friends or family members and no one had mentioned this day. How naive of me to think that. This day now means something to me and many people who I do know.  October 15th stands for Babyloss Remembrance Day. This is a time to spread awareness and recognize everyone who has lost a child to miscarriage, ectopic pregnancy, stillbirth, SIDS and other causes.

Since my miscarriage people have come to me and shared their stories from when they lost their own child too soon.  A story that they have kept buried deep, something that isn’t brought up amongst friends.  A story that their own family may not know about.  Imagine my shock when my own maid of honor stood in front of me and told me she had an 8 week miscarriage.  Something she never even told her own mother until years after the fact.

I can understand why people hold this secret close and don’t talk about it.  My extended family doesn’t know about our loss.  We hadn’t yet made phone calls to tell them I was pregnant, so I didn’t want to make the phone call to explain our loss.  Part of me didn’t want to tell the same story over and over but there is a part of me that wishes they knew.  I want them to know our butterfly baby existed, that she meant something to us, and that we hold this in our hearts.

The other reason we don’t share our news, like it seems many others don’t, is the lack of understanding from others.  We have had a lot of tough comments made to us regarding the situation.  We have been made to feel that we were not grieving correctly, that we were making to “big of a deal” out of the situation, that we should have known the chances of this occurring, that this wasn’t a real loss or real baby.  I don’t believe people made these comments to hurt us but people are misinformed about the subject.  People want to be able to measure and quantify your loss, more so they can find a way to better understand it, there is no way to do this though.  Sometimes people say the words to fill the silence, when just the silence is better.

With a miscarriage people will say it is sad but they don’t understand everything else that comes with it.  The stuff that isn’t in a pamphlet or isn’t cured with an ibuprofen.  The nightmares, the sadness that will creep in out of no where, the inability to sleep, the hatefulness towards other pregnant women, the separation anxiety that you will have with your living child, husband or even dog.  This is followed with a fear of getting pregnant again, the feeling of being robbed of any happiness for future pregnancies, the lack of faith in my own body and the challenge of a feeling like I am on a never-ending journey that I don’t want to define my life.

I now live in a before baby and after baby life.  I can tell you I bought those pudding cups when I was pregnant because they tasted great.  I bought that wine before I realized I was pregnant.  I ordered those decorations after my baby’s heart stopped but I didn’t know it yet. I knew the oil needed changed in the truck when I knew my baby was dead and it was changed after my surgery.  This is how time in my life is currently being measured.  It is my own way of dealing and separating.  My own way of measuring my loss and what it has done to affect us.

I am not the only one.  We are not the only couple.  There are 1 in 4 women out there that understand.  People that have lived this, are living this, and have yet to live it but unfortunately will.

This October 15th will mean something to me and my Husband.  I will think of my own Butterfly baby and so many others that never took their first breath.  I will think of all the Mom’s and Dad’s, who will never be able to hold the baby they were praying for, in their arms.  The wombs that feel empty, the rooms void of what the future may hold, the faith that is broken, the tears that may fall without notice.  I understand now.  I feel your pain now. I hold my own secret now but I don’t want to bury it and I urge others not to bury it.  We eventually find the way to move forward in our lives but that does not mean we forget the child we lost.  They are apart of us, our story, our family and in our hearts forever.

“When a child loses his parent, they are called an orphan. When a spouse loses his or her partner, they are called a widow or widower.  When parents lose their child, there isn’t a word to describe them.” President Ronald Reagan

 

Baby Loss Day Butterfly

And where do we go from here

I was ready to vomit in the parking lot of the hospital Friday.  My nerves were getting the best of me when we were merely there for a last appointment with my OB/GYN.  As my Husband reminded me, what could she possibly say that was worse than what we had already been through?  True, just the thought of walking in there was making me crazy though.  I clung to his hand the whole way in, fighting back tears, the recent memories flooding my brain.

The doc declared me back to “normal” down south.  I was free to go back to sex and working out, two of my favorite things, after wine of course.  We went back over the conversation of the chromosomal testing, that we had two days prior.  I fought back more tears.  It seemed so technical at this point. She asked if we wanted a form of birth control, wanted to go right back to trying or were we just going to be careful?  I laughed.  We aren’t the couple that CAN get accidentally pregnant.  I mean, we could, if the stars were fucking aligned all wonky.  (It’s a word, I swear.)  We explained where we felt like we were at, well more me, than my Husband.  Not that his feelings don’t count but I’m the one that is a hormonal mess right now.  We feel like we have had enough for one year so we are just going to take the baby topic off the table till after the Holidays.  If we feel ready at that time then she said we just call back up the fertility specialist and start all over.

All over.  From the beginning. 

That was enough for one appointment for me.

The doctor left and we sat in the exam room in silence.  That was it.  It was over.

I held back more tears as we walked out of the hospital.  We walked by happy pregnant women, people carrying their babies, one couple complaining how they only got three ultrasound pictures -the horror.

22 months of trying, all the fertility appointments, tracking, tears, joy of a positive pregnancy test, wishing, praying, hope, miscarriage, surgery, and everything in between, we walked away with absolutely nothing.  I felt so empty and it all felt so final.  I have nothing tangible.  Only the nightmares and separation anxiety that follow me around.

It is a strange journey to be on.  We may not look like parents but somewhere we have a little girl, that for a moment, was truly with us.  We may not have anything to show for her but three ultrasound pictures and some outfits we couldn’t help but buy, but she has changed us.  My file may be closed at the doctors office for now and everyone else has moved on from it but us and that is okay.  It takes time.

I went back to yoga and I think I took my first deep breaths in weeks.  I cleared my head and there were times I thought the emotions were going to take over but I was able to get control again.  I was able to move in my body for the first time in weeks and feel comfortable, know where I was going, sink into a safe place.  It felt good.  Slowly there are more good days gained.

Chromosomal Testing

The day we found out our baby’s heart ceased to beat, we sat talking to my doctor.  She quietly spoke about options and other things that all seem a bit blurry now.  In the midst of that she did mention chromosomal testing for our butterfly baby.  I remember at the time I just nodded my head and didn’t think about it much until the actual day of my surgery and she had brought it up again.  My wonderful doctor had spoken with my insurance company about this testing and got them to agree to cover the expenses.  We were told the results would be couple of weeks out but basically it could tell us if there had been something wrong with our baby or if there was nothing wrong.  We had about a 50% chance of learning something.

I can tell you, for the past couple of weeks, I have gone back and forth over what I thought I might want her to tell me.  There is nothing that can bring our baby back but you can over think this.  If we knew what was wrong, then I can point my finger at chromosome this or that and place blame. But what if it was a result that said this could happen again and again? Or what if the results came back with nothing? Then I felt like there was nothing and no one to point my finger at but myself.  What if that meant it was something I did?

What if?

What if…..

This was a big ass mixed bag of emotions and I didn’t know if I was ready to hear the answer.  I had an appointment scheduled and would hear then.

Although that didn’t happen.  I didn’t have to wait quite as long and my Doc called me with the results when I wasn’t ready.  I wasn’t mentally prepared.  I was prepared to be nervous and sick to my stomach at my appointment later in the week, not here in a busy restaurant, at lunch, while talking on the phone.

We got our pleasantries out of the way and she informed me that the test came back showing nothing.  No abnormalities in our little girl.  And that yes, it was most likely a girl.

I ordered a glass of wine.

And I just kind of felt numb.

Doc told me she understood how the emotions can be all over on this one.  You want there to be something, yet you don’t.  I know that honestly, it is good news.  I can’t let my brain go anywhere but that.  There is just some reason, that we will never know, that this baby wasn’t meant to stay with us.  We will go to our appointment on Friday and discuss all of our options and how we plan to move forward from this here.  There is nothing more we can do at this point.

One Week and Some Days Post Surgery

Life, as we all know, continues.  We get up, we stop at Starbucks, we go to work, we answer emails, we go home and make dinner.  Our household is still going and we are attempting to do just that.  Some friends and family no longer bring up the subject and have resumed talking to us as though nothing has happened.  Others offer support and encouraging words when it seems we need them the most.

Unfortunately, my body gives me daily reminders to not move on so quickly.  Yesterday, I pushed myself too far and I was hurting by the evening, enough to call my doctor this morning for her opinion.  I can’t work out, I can’t walk long distances, and cleaning the house even feels like such an exhausting chore.  My body still hasn’t fully accepted the fact I’m not pregnant which is a whole other treat in itself.

Mentally, I’m still a mess.  Life doesn’t actually move on so quickly and this isn’t something I can rush.  I haven’t made it through a day yet where I don’t cry uncontrollably.  The reminders seem to be everywhere and anywhere.  The triggers, I can’t avoid.  I am not good at putting on a fake smile and just saying I’m fine, because I’m not.  I dread going to sleep at night because I feel overwhelming guilt.  I lay there and wonder if I did something wrong, if I should have done something different, if it will happen again, and where my baby is.  I worry about time passing and dates coming and going.  What would have been second trimester, third trimester, baby shower time, and the dreaded due date.

When I sleep the nightmares come, empty cribs, cries coming from somewhere I can’t decipher, dead babies, empty arms, people stealing my baby and me not being able to get there in time.  They seem never-ending.  I wake up wanting to smack my Husband because how the fuck can he just go to sleep?

Then there is this other worry, something that seems so strange.  I worry every time my Husband walks out the door that he isn’t going to come back.  I worry that he is going to die and won’t make it back home.  I’m sure it is the obvious, lose one and you think you are going to lose it all.  This additional fear in the wake of everything else.

People comment on our marriage, how losing this baby will strain it, how we will handle it differently, how he won’t understand.  These people are wrong and don’t know my marriage.  If anything this has strengthened my marriage, brought us closer together, forced us to lean on one another more than ever for support and comfort.

People make a lot of other assumptions about our life.  They comment on future children, how we should act, how we should mourn, why you don’t do one thing but you do another.  Some comments that are meant to encourage you are actually the worst words that can be echoed.  The most random people will offer you the most amazing words to lift you up and that is when you can see it in their eyes, they have suffered the same pain, they know, they truly understand.

I try to be there for my friends, one complaining about how she doesn’t have privacy in the ICU with her newborn baby girl.  I want to scream at her how nice it must be to hold her baby because I will never hold mine.  But my friend deserves to have her own feelings in her own situation.  So I go with her and we spend a Saturday purchasing everything for the baby shower, the one I promised her.  I sat with a bottle of wine that night making diaper cakes and wrapping baby gifts, my Husband helping me in silence.  The obvious words hanging in the air.

Other times we say no.  We ignore phone calls, offers for dinner, and we even cancel plans at the last-minute.  Some people I can’t entertain, I can’t host, I can’t re-tell my story for them because for some reason they want private details.  Sometimes I just need silence and they can’t offer that.

On another side each day does somehow get slightly easier, I don’t know how to explain.  The weight of it all lightens a bit with each passing minute, hour, day, chance at laughing, smiling and enjoying the little moments.  We grieve daily in our own way, together and separately.  We don’t censor ourselves, we voice what needs to be voiced and we discuss the future.  We talk about how we are going to move forward and what this means for us.

No one can tell you how to go through this.  There isn’t a timeline, a book, or a blog that will give you an answer.  You have to follow your heart, stay true to yourself and always remember to breathe.

Butterfly Baby

Today was my first day back to work.  A week from the day we heard the news.  I made it until 2pm and then excused myself to go. My body was aching and I was mentally exhausted.  I gave it a good go.  I gathered the wine bottles people had dropped at my desk, the flowers and the cards and shoved them in my truck.  I sat for a moment in the silence of my truck, letting the heat roll over me, thinking how exhausting that was.  I was ready to crawl in my bed.

Instead I came home, poured a healthy glass of wine and went to my back deck.  It is an unusually warm September day, not a cloud in the sky.  This is a day I would have normally loved to come home and taken Fenway for a long walk, followed with yoga.  Instead, I can’t leave the deck, I take large sips of the wine and watch the butterflies dance in the yard.

This should have been the last day of my first trimester, a day to be celebrated.

I took another sip.

Fucking butterflies.

I have never been a butterfly person.  Sure, I notice them but they weren’t my thing like starfish have been.  Until I was pregnant.

The day I found out I was pregnant, I sat out back and an orange butterfly landed on my leg.  It refused to move and slowly moved its wings back and forth tickling my leg.  It was strange.  The next day it was a huge yellow butterfly on our garage….and it went from there.  Every walk I took with the dog we were surrounded.  Fenway would chase them in the yard or they would hang on us as we did yard work.  They would even hitch rides on Fenway into the house.  I swear they were never around like this until I was pregnant.

We took notice and started calling this our butterfly baby.  I fully believe in signs, as does my husband, and it seemed this baby liked butterflies.

Now it just seems our butterfly baby is gone and our yard is even more full of the creatures of all colors. Even at my Mom’s this past weekend, they followed us and everyone noticed, they commented, look at all the butterflies, isn’t it strange?

I originally sat on my back deck to read a book this afternoon, with my wine, but instead a caterpillar has landed on said book and the butterflies are on parade.  I can’t quit staring at them.

I feel empty.

How do you explain this to someone?

How do you put it into words?

How do you explain about a baby you never met, yet knew so well?

How do you explain what this does to your family, your friends, your spouse?

How do you explain the fear of the leaves falling, the snow coming, and all the butterflies going away?

 

The Monday of Nightmares

When you find out you are pregnant you give thought to when that baby will come into this world.  I can tell you that most don’t think about their baby coming into this world already dead.  Coming into a world where you will never see it.  Where a doctor will, thankfully, sedate you and take your dead baby away.  A funeral home will take the baby away with other babies just like it.

No, you don’t want to think about this moment but your brain will go there when you enter those hospital doors.  I walked in on a bright Monday afternoon, ready to get this day over with.  I walked by the woman with her new baby tucked in a car seat, ready for its first ride home.  Couldn’t there be a separate door for us and them?  I sat at the registration desk where a lady took my information and snapped bracelets on me.

We were directed to the elevator.  I was to go to the second floor.  If I hit the button to the fourth floor that would be the baby NICU.  My friend sat there in that moment with her baby that came nine weeks early.  Her baby that came into the world too early in the same week my babies heart stopped.  I just didn’t know my babies heart stopped that week.  Her baby was living and thriving.  The doors opened on the second floor.  Marilyn was right there to great us like we were told.  She was to direct us to our room.  She gave us her apologies.  I was getting sick of everyone’s apologies, mainly because there was nothing but silence to fill after that.

We were left to our room where I undressed and was settled into a bed.  My Husband asked what I wanted to watch on TV because we had to fill the silence.  There had been silence all day because we had talked about everything else inside and out.  There was nothing left to say.

Nurses filtered in and out.  Explained what their job would be, gave their apologies, inserted IV, asked questions and more questions.  I was so fucking hungry and itchy.  We were left alone for long periods of time.  The clock slowed down.  We were in a corner room where it felt like I had the plague, that is what it had come to feel like.  Like everyone knew, it was written on my face and everyone just stared-the lady with the dead baby-what happened?

My Husband held my hand.  We watched HGTV.  More nurses, more paperwork.  We were told about some paperwork that would be coming and there it was; what to do with the remains of our child.  The nurse handed the clip board to my Husband when I was done with it and said Dad, you need to sign off on this as well.  That was the first time he had been called Dad in reference to this child by someone other than me.  Not what you think will happen the day you find out you are pregnant.  His first child and now he was signing off on what to do with the remains.

They finally came to get me.  I was ready, I wanted it over with.  They finally put the stuff in my IV that would help me go away from it all for a bit.  Even if it was for a short time.  I woke up in recovery where they quickly took me to my Husband and that was it.  45 minutes later I was loaded with medication, instructions, papers, prescriptions and wheeled in a wheelchair downstairs.  I sat with a nurse while my Husband went to get the truck.  Another Mom was waiting with her baby for her Husband.  Seriously, could they get a separate door for those of us who just had a dead baby?  I realized I said this out loud by the horror on the woman’s face and my nurse patted my back.

There wasn’t much to say by the time we were home.  I felt empty, I still do as I sit here today, the day after, stuck resting on the couch.  I can’t sleep.  I’m up at all hours.  I had ordered some free baby items at the baby fair before this and they showed up today.  I couldn’t open them, just stuffed them in a closet.  In the closet where I stuffed other items that had been purchased along with a baby book that said what day we found out we were pregnant. I had to delete the app and emails on my phone from expectant websites that send daily reminders that I no longer need. I still had baby shower invites to address and get out for a friend.  I robotically did that this morning.  I go back to work tomorrow.  We need groceries.  Laundry needs done.  I ignored it and called my travel agent, we need to get away, I explained.

We need to move forward and are ready to but this is something that can’t be rushed.  My body won’t allow it, nor my brain.  I have to refocus my mind.  Our plans have changed and our lives have changed, never to be the same again.  We have both been through bad things in our lives, I have been at rock bottom before, I have had my life changed in the blink of an eye before, I know how to get up, learn from life’s ass kickin’s and move on.  I know we are tough.  Life will move forward but now we just have a butterfly baby.

The Weekend In-Between

We woke up on Friday as people who were barely human, lacking sleep, puffy eyes, blank expressions, and still numb. Thankfully with a dog who didn’t understand bad days but still needed to be fed, be let outside and demanded we take her new monster toy and play with her.

We also had decisions to make.  We had a few hours before we had to pick up Rebecca and we were suppose to go back to my parent’s for the weekend.  What did we want to do?  We decided sitting around for the weekend was going to get us no where.  Monday would come one way or another and I couldn’t stare at a wall till then. We might as well go back, make it easier on Rebecca and then I could drink with my sister.  The Husband and I could say the words out loud to someone else besides one another.  We could say those words to my sister without her flinching or judging.

We didn’t want to deal with the world but we couldn’t make ourselves crazy.  We needed a bit of normal.

A few hours later we picked up Rebecca and put on our best “everything is normal faces” even though I looked like hell.  Absolute hell.  We started down the highway for our long drive and she told me all about her over night field trip.  I could tell she stayed up late with her friends talking, telling the stories you tell when you are 12 and staying in a cabin.  In a world before you have to be an adult.

I was twisted around in the front seat to make eye contact with her in the back while she talked.  Finally she said, “I forget how many weeks the baby is today?”

This was it.

This kid and I, we have had a lot of life happen in trucks, driving down the highway, miles going by and I was going to add to it.

I explained that the baby died and how the ultrasound went and that on Monday I would have surgery.  She nodded and asked a few questions and the truck grew silent.  I didn’t want to push her and I knew she was thinking.

Later that weekend she would ask if the baby was still just dead, in me, and she would touch my belly.  She would ask how the doctor would get it out and where the baby’s body would go, if it’s soul was already in heaven like the movie Heaven is for Real?  Because in that movie the lady had a miscarriage and that was Rebecca’s first time hearing about such things.  I answered as best I could, we have always been open and honest with her, no lies, and no half truths.

We joined my family that weekend and tried to keep it normal.  We invited my maid of honor over with her boyfriend and started a large fire outside.  We sat, we talked about it, we talked about life, we talked about normal things, we joked, we drank, the kids ran and played with the dog and glow sticks, and under the blanket on the swing I would occasionally squeeze my Husband’s hand, knowing where our minds truly were.

For the weekend we could take a step back, regroup, talk more logically about decisions to be made, and take a few deep breaths before Monday.  Texts and emails trickled in from friends with kind words that meant more than we would have ever say.  We vented to my sister, said words out loud that some don’t want to think.  We ignored other obligations and just did what we needed to do.

We drove back on Sunday night with a better frame of mind.  Not perfect.  Life wasn’t normal, life wasn’t fixed, I couldn’t sleep through the nights and I was a bit snappy, I lacked compassion for anyone else but us.  I need to be selfish.  But we were better than we had been on Thursday. One step forward, we were going to make it through this one way or another.