Remembering to Breathe

I’ve commented before that a big part of my new normal is that I have to remember to breathe. Even nearly a year and a half later, there are still moments where I have to sit and tell myself “just breathe.” Some days, that seems like the only thing that I can do. Just keep breathing, and hopefully that horribly difficult moment will pass.

I haven’t breathed deeply in a very long time. I try, in those moments where I remind myself to breathe, but I can’t. When I attempt to take in a deep breath, I can feel something inside of me that stops it short. It’s like I can feel the wall in my lungs and heart that just won’t let it happen.

Yesterday was a big reminder to me in my quest to just breathe. We had a big doctor’s appointment. I kept calling it our “do or die” test because it was. This was the test that would determine whether our surgery in November was successful, and if we could move forward with IVF. If the test showed the scar tissue and adhesions had returned, it would mean that I was unable to carry a child. I probably sound dramatic, but it was the big one as far as tests go. We have come to not expect much in the way of good news from our doctors anymore, so much to our surprise, we got it. Adhesion free and cleared to continue. 

Every time I think about getting that good news, I exhale deeply. It happened all day yesterday, and it’s still happening today (I just did it again as I typed that). Yesterday, I was struck by how odd this deep exhale felt. It was then that I realized that I’ve been holding my breath for months. It hasn’t been a conscious act – just the anxiety of not knowing how things would turn out. Yesterday, I breathed a little lighter and a little fuller. It felt good, but it also felt very strange.

I am, once again, very aware of my breathing. I have my deep exhale in knowing that my dream to carry and bring another child into this world (one we get to raise, please) is still alive. I still can’t take that full breath in that I’d like, but I’m making progress. Little by little, the ability to breathe without telling myself to breathe is coming back.

But I know not to get too comfortable in this state. There will be something that will knock the wind out of me again. It doesn’t have to be more tragedy – it’s as simple as a day when I’m missing my children more than I know what to do with. That day will come again and again over the course of my lifetime. And I will have to remind myself to breathe again. But at least I know I can work my way back.

When I started writing this blog, the topic of breathing was on my mind. But as I finish writing the blog now, I realize that it is January 18. One year ago today, I miscarried our second child. It was a very different experience than losing Vivienne. We got very little time to be hopeful and make plans for this little one. But this child was just as wanted, loved, and wished for as any child, and a part of our family. We gave this baby the symbol of a sun, as we'd just taken a vacation to Florida. So it's no coincidence that the sun was shining strongly all day today.As I looked out into the sunshine, I know that it's our Baby Sunshine telling us hello.

And there’s that deep exhale again, but for a very different reason.

Waiting

I feel like the last year and a half of my life has been a series of waiting. It seems that we’re always waiting on something – a test to be done, test results, the green light to try again. I have to say that over the 52 weeks of 2012, I spent each one of them waiting on something. I’m tired of waiting, but it seems I have no choice.

Have you ever been forced to wait for something you wanted? I mean something you really, really wanted? I’ve had to do that every day, and there isn’t anything I can do about it. Timing is everything when it comes to my situation – tests and procedures can only be done at certain points in my cycle. Even on fertility medication, you only get 1 chance a month to try to make a baby. And it seems like every time we get that once a month shot, we have to wait on something else.

I think a lot about all of those quotes to “seize the day” or “make today count.” I recognize that our time in this life is short, and we’re here to make the most of it. And I have to admit, I feel really conflicted about that. In one sense, I am making the most of my life by organizing it around the thing I want most in the world. In another sense, I’m waiting for something that may never come. Will I look back someday on this time as wasted time – time and effort that I should have put towards something else?

Gordon and I have, in my ways, put our lives at a standstill over the past year. Big decisions get put off or pushed to the side because we have to focus on this 1 big goal in front of us – to have another child. We can’t move, change jobs, or even plan a big vacation 6 months down the line. It’s important that we are here, with our doctors who know us, and that we’re available and ready when our once a month shot comes up.

We talk a lot about how that can make us feel stuck. We can’t move forward on other things we want to do, because this is our primary #1 goal. And goals 2, 3, and 4 fall WAY behind this one. And so we stand still, and we wait. We don’t often feel progress or forward momentum. Every time we do, it seems like there is a “wait and see” right behind it.

And so here we are again, waiting. My hope is that a year from now, we have the living child we have wanted and worked so hard for. I hope that this year is spent on waiting out the 40 weeks of pregnancy, and not on more procedures, tests, or my worst case scenario, giving up the dream. As much as I hate the waiting, I guess I’ll take it as long as it comes with the possibility that this can still happen for our family. But I can’t help but constantly feel like I want to be doing something to move us toward our goal. But that’s not my reality. My reality is that I wait. And then I wait some more.

Weak and Strong

It has been 14 months since Vivienne died. As I look at that number, and think about where I am, I am struck by how that number seems like such a long and short period of time, all at once. In one way, it feels like forever since I knew what it was like to carry and hold my daughter. And in another way, I wonder how it’s possible for a life to change so much in only 14 months. Time stands still and soldiers on all at once.

Over these past 14 months, I have had many people tell me how strong I am. I struggle with that label a lot. Partly, it's because I haven't had any choice about this strength. It was never an option to crawl into a ball and completely withdraw from the world. Trust me, on many occasions, I wanted to, and often, I still do. But, the world keeps on turning whether I want it to or not, and so I have been forced to figure out how to jump back onto this spinning world.

I also know that I’m not doing anything particularly special here. It’s been largely about survival for me, not strength, and the things I do and choices I make are only because that is what I need to do to work my way through this. It has nothing to do with strength – it’s all about necessity. And I know that if any of you were faced with this tragedy, you would do the same (and for many of you reading this, you have done the same).  I know that no one likes to imagine losing their child. A friend once told me that she tries to think about what it’s like for me, and that her brain just won’t let her go there. It is impossible to imagine, but I feel confident in saying that any of you would survive it – you would figure out your own necessities and how to navigate it. It isn’t strength, it’s just surviving.

Recently, someone said the opposite to me. They told me that didn’t know what to say to me because I’m fragile, and they didn’t want to say or do anything that would add to the hurt. Initially, I felt a little defensive at the label of “fragile.” But, as I thought about it, it is appropriate. It is an understatement to say that I’ve been through a lot over the past 14 months, and it would be expected for one to come out of that emotionally frail. No one ever likes to think of themselves as weak, but I would have to say that it’s how I feel most of the time.

And so, as I think about this, I have realized that it is possible to be completely weak and broken, while also being completely strong and tough at the same time. There are certainly times where I feel more strong than weak, and others where I feel more weak than strong, but as I sit writing this, I feel both equally. I feel emotionally battered and weathered, but I also know that tomorrow, I will wake up, get dressed, and go about my day. I will see the baby announcements, ultrasound pictures, and baby photos on Facebook and feel the wind knocked out of me again. But I will still keep going. Both fragile and strong – another part of my new normal.

The New Normal . . . So Far

It’s been a year. I’ve been writing for 9 months about this “new normal” of mine, and trying to figure out what it is. The short answer is that I don’t know yet. I’m still very much a work in progress. I’ve learned a lot over the past year, but I know that I’m still nowhere near level ground. It will likely take a lifetime to figure out my new normal, but here is what I can say it is so far.

My new normal is:

Being able to cry, hard, in a split second. It doesn’t take much to take me there, and I’ve learned that I can cry freely in front of anyone (friends, coworkers, strangers, even my boss).

Spending large amounts of time focusing on just breathing. Breathing is often a very conscious act for me.

Extreme introversion. I’ve never been terribly social or out-going, and I’ve only gotten more introverted over the last year. Part of it is that I recognize who really matters, and part of it is self-protection.

Recognizing that there are 4 types of people in my life:

·                            People that truly understand

·                            People that genuinely try to understand and actually empathize

·                            People that pretend to try to understand, but judge instead

·                            People who just don’t care

I’m learning to emphasize the first 2 and get rid of the latter 2.

Getting advice from anyone and everyone. Everyone has an opinion about how to manage my grief, how to cope with infertility, and what I need to do now. In the end, only my opinion counts for me.

Coping with changed friendships. I’ve had many close friendships change over the past year – some got stronger, some just changed, and some went away. There is more loss that comes with loss than most people recognize.

Living broken, but living. (Sarah, that one’s for you!)

A stronger, but changed faith. I've had my bouts of serious anger and questioning with God over the past year, and I know I'm not done. But today, I can say that my faith is stronger, but different in many ways from the faith I had before.

Experiencing multiple contrasting moods in a 5 second span – happy changes to guilt which changes to sadness which changes to bitterness in seconds flat.

Knowing what it’s like to miss someone so much that it physically hurts to the very core of your soul.

Feeling such bitterness and jealousy when I see or hear of someone who is pregnant or a small baby. I hate this ugly side of grief, but I can’t deny that it’s part of my normal now.

A stab in the heart every time someone asks “do you have any children?” And the moment where my heart stops as I know what will come next when I answer the question openly.

Balancing between not wanting people to forget my daughter, but not being defined solely by my loss. It is an impossible tightrope to walk.

Being able to count on 1 hand the people I really need in life and knowing they’ll be there in a hot second if I needed them.

Knowing that when life gets bad, there’s only 1 person I want to see, and fortunately, I married him.

Back to the Beginning

Yesterday was my birthday. This Sunday is Vivienne’s. I’ve been saying since last year that my birthday would be cancelled this year. It’s not because of any vanity I have about turning 40. It just doesn’t feel like an occasion to celebrate. My focus is firmly on Vivienne’s birthday on Sunday and figuring out how I will survive this next milestone.

I’ve written before about how the build up to milestones is more difficult than the actual event. That has been true for me with nearly every one. I was prepared for it with her birthday, and I thought I was managing it OK, or at least as well as I could. Today, it is hitting me with full force, and I feel like I’m back at the beginning.

I got to be distracted by my birthday with a whirlwind of travel and meetings. In my mind, I thought it was working out great because I could act like my birthday just wasn’t happening. I couldn’t be on Facebook for all of the lovely birthday messages. My coworkers knew not to make any announcements or have cake at the meeting, because it wasn’t what I wanted. So, I was able to go through the day with little acknowledgement of my birthday and have it exactly as I wanted. I even managed to make it home in time to have dinner with my husband, which was pretty much the only thing I wanted to do in acknowledgement of my birthday.

This morning, I realized that all this did was distract me from what was really on my mind. Now that my birthday has passed, I have no more distractions. There is nothing powerful enough to pull my attention away from what I have been dancing around for weeks. The time is almost here, and right now, you’d think by looking at me that it happened yesterday.

I’ve often said that one of my most used crying spots is my car. There is something about being alone with my thoughts that just makes it the place I cry most often. I often talk to her in the car, but I was getting better about the crying lately. This morning, as I started my drive to work, and seemingly out of nowhere, I started crying, and I couldn’t stop. As I pulled into the parking lot at work, I tried as hard as I could to pull myself together so I could get to my office, and I couldn’t even manage that (fortunately, I come into work really early, and there’s no one to see me cry my way into the office). As I sat in my office, it was all I could think about. And the tears just kept coming. People came to ask me questions, and I would look up at them with bloodshot eyes, telling them I’m having a hard day. It felt just like my first days back at work.

In every way, I feel very much back at square one right now. Much like the early days, I don’t know how I’m going to manage the next few days. I’m not sure how I’ll get myself out of bed tomorrow. I don’t think I’ll be able to stop the tears. And I don’t know how anything will ever feel OK again.

I’m back to my old routine that I exercised faithfully in the weeks after Vivienne died. I sit in my office with the door closed for the day, and turn my computer away from the door so no one can see me cry. I move as many meetings as I can, so I don’t have to show my puffy eyes. I go to the cafeteria and grab my lunch early, so I don’t have to be faced with the pregnant women or people asking questions. I race home so that I can be with the only person I want to be with when this happens. And tonight, I will go and cry freely with my tribe at my support group. I’ve figured out how to navigate through it, but I’m still not sure I know how to survive it.

I can now say from experience that I know this feeling won’t last forever. Eventually, I will feel better, and someday, I will laugh again. But as I sit here feeling almost exactly as I did in the days immediately after losing Vivienne, I am finding it very hard to believe. 

Guilt, Failures, and (eventually) Forgiveness

It’s been over 10 months, and I have to admit, I thought I would be working towards a better place by now. In some ways, I am. But in other ways, the guilt and feelings of failure are still pretty strong – it doesn’t take much to bring them back in full force.

I still to this day, and probably will to some extent for the rest of my life, feel guilt for the things I could/would/should have done. I still feel deep in my heart that I could have stopped it, that there is something I could have done or said to the doctors to stop the labor so she could stay inside and develop more. I still kick myself for what I didn’t know – about symptoms I should have recognized and questions I should have asked. It was my job to protect her, and I failed.

In failing Vivienne, I failed so many people, including my family and friends. My counselor would stop me right now to tell me to remind myself that my body failed them, not me. But, my body is mine, and even though I can’t completely control it, I am ultimately responsible for it. When my body succeeds in doing something great (like my 3 day walks), I take credit for that. When it fails, I take ownership of that too.

Let’s face it, having a baby is a miracle that most people consider to be easy. The majority of the population doesn’t have difficulty getting pregnant (I do), the majority of the population doesn’t have any difficulty carrying a pregnancy (I do), and the majority of the population has trauma free deliveries (not me). It’s a difficult position to be in to struggle with something that goes so easily for others. When you fail at multiple things that other people consider to be easy, the self esteem takes a beating. It’s a constant battle not to think of myself as a failure.

I think part of it is evolution. Women are designed for this purpose – to carry and produce offspring. Whether you want children or not, it is a big part of how we are defined, by scientists and by society. To fail at something that is so fundamental to your being, that is ingrained into your DNA and how your body is designed, is unlike any failure I’ve ever known. It is harder than I can say to try and pick yourself back up from that level of failure.

I try to not let these feelings of guilt and failure eat away at me. But there are times when those feelings are stronger than any logic to counter them. And I know I will wrestle with those feelings for the rest of my life. I’ve heard people mention needing to forgive ourselves for the things we think we did wrong or the failures we’ve had.  I’m trying. I’m hopeful that with more time, I’ll find that place of forgiveness. That I’ll be able to forgive myself for what I didn’t know and didn’t do. That I’ll be able to forgive myself for failing Vivienne and my family so horribly. That the feelings of knowing I did everything I knew to do will outweigh the guilt of not having done enough.

It’s hard to find that kind of forgiveness for myself. If someone did something of this magnitude to me, I wouldn’t want to let them off the hook easily. Forgiving myself is another part of losing a child that may take a lifetime to accomplish.

Making a Choice

Since Vivienne died, I’ve read many books about loss. I guess when you’re on a quest to find meaning and answers, you look everywhere in the hopes that you’ll find a glimmer of something. A few months ago, I read a book called Choosing to See. I remember finishing it and my husband asking me “did it help?” As with most books I’ve read, there are parts that are helpful and there are parts that aren’t. What I didn’t realize then is that maybe these messages stick with me and become important when they need to be.

The book deals with the author losing her daughter in a tragic accident. She mentions several times throughout the book about “choosing to see”—seeing messages and meaning from her daughter everywhere if she just opened herself up and chose to see them. I chalked it up to the fact that her daughter was a little older when she died (she was 5), so she had more memories to draw from. I’m learning now that I just wasn’t ready for that message when I read her book. Lately, I’ve been opening my eyes more and choosing to see, and I’m finding that Vivienne is everywhere.

I told the story of the butterfly who visited me on Mother’s Day. That was really my first moment of feeling a strong message from Vivienne. It gave me such peace and hope. Since then, I’ve been keeping my eyes and ears open to feel that again.

I see her everywhere now. I’ll look up to the sky and see one particular cloud, and I can feel her peering over the side to look down and say hello. She’s in a ray of sunshine, a flower, and the birds chirping. I read in another loss Mom’s blog about how a breeze feels like a hug from her lost child. And now, I close my eyes and feel my daughter hug me every time a breeze goes by. I still cry because I wish the hug were real, but it’s something, and I’ll take whatever I can get.

A friend and fellow loss Mom told me a couple of weeks ago about hearing her daughter’s name. After she lost her daughter, whenever she heard a child called by the same name or saw her name somewhere, she smiled because she knew it was a message from Reese. Vivienne isn’t the most common name, so it’s not one I hear very often. Shortly after she died, we heard it once, and I don’t think I’ll ever forget it. We were watching the Emmy’s, and Melissa McCarthy was accepting her award. At the end of her speech, she looked at the camera and said “go to bed now Vivi” to her daughter. We both cried. Since then, I haven’t heard her name very much. But since this Mom told me how she hears her daughter’s name as messages, and since I’ve been choosing to see, I’ve seen and heard Vivienne’s name multiple times. I read it in People magazine where some semi-famous person had a daughter she named Vivienne, and I heard it on a TV show, where they said it over and over again. Each time, it made me smile.

I’ve written before about how the rainbow is Vivienne’s symbol, and how I look for rainbows everywhere. I still do, and I still hear them in songs and see pictures of them and think of Vivienne. But, I also think I was so focused on finding this rainbow to have some grand message from my daughter that I missed all of the everyday messages she was sending. But now, my eyes and ears are open, and she is sending me messages all of the time. I know that some day, she’ll send me a rainbow. I also now know that every day, she’ll send me a hug in the breeze and countless other little messages of love.  And I hope that I see each one, and she feels my love right back.

Loss Parent Parenting

I’ve written and talked a lot about how unbearably difficult it is to lose a child. Lately, I’ve been coming to terms with how difficult it is to parent a child you’ve lost. I know that must sound strange. People may recognize that I have a daughter, but they don’t see how I still want to be her Mom. I don’t struggle with a child not sleeping through the night or late night feedings (I can tell you that I’d give anything to have those). I’m not trying to discipline or teach my child right from wrong. But I still want to feel like her Mother and like I’m doing something for her. That is so hard when she’s not here.

This weekend, I got to feel like Vivienne’s Mother. It made for the best weekend I’ve had since we lost her. From start to finish, this weekend was about Vivienne and being her Mom.

Saturday, I spent with my “tribe.” It was me and my fellow Loss Moms all day long. First, coffee with a friend where we talked about our children and our struggles. That’s what Moms do, right? Not that often when your child is in heaven. After that, I went to a Mother’s Day Tea at Cornerstone of Hope (a local bereavement center where we did an Infant Loss support group/workshop for 10 weeks). It was an occasion to recognize all of us as Mothers, the special bond we share, and to remember the children we miss so much. Again, it was women at a luncheon talking about their children and their struggles. It gave me the opportunity to talk about Vivienne like any Mom would talk about her child. Later in the afternoon, I got together with a couple of other Loss Moms to have some food and watch some Friends. It sounds so simple, but it’s kind of like a playgroup of sorts, only your children get together to play in heaven while their Moms watch their shows. These are all of the things that Moms with living children do all of the time. But when your child is gone, you don’t quite fit into these Mom gatherings, unless they are with your tribe of Loss Moms. There, you’re a Mom just like everyone else.

Sunday, we did the March for Babies Walk for the March of Dimes. It was like a big event just for Vivienne. When people have a baby, there is usually a series of events for her—meeting the Grandparents, coming home from the hospital, meeting the friends, a baptism, and all of those events leading up to the first birthday. We’ve had 1 for Vivienne—her memorial. Sunday, we got to celebrate her. We all wore her special t-shirts, and took pictures of her special star. Sunday was Vivienne’s big event—a celebration of what she’s meant to all of us. And seeing how her life has touched so many people—there could be no prouder Mom moment.

Sunday afternoon, we planted her garden. We’ve been preparing for it for a while—Gordon digging up a place for it in the yard, and getting it ready to plant. Picking out the flowers and plants and deciding how we’d lay them out. And with a nice afternoon out, we decided that yesterday was the time to plant. So out we went to dig the holes, plant the flowers, then mulch and water the garden. Getting on our knees and doing the dirty work of parenting. We don’t get many chances to do that, but yesterday, we got into the mess of it and did something together for our daughter.

And now I’m struggling with how to keep that feeling. Not every weekend will have a tea, a walk, or a garden to plant. We’ll have a garden to tend to for the summer, and I can imagine it will be the most weed-free, well watered garden I’ve ever had. These are the things you have to find to be a parent to your child when your child isn’t here.

Support

It sounds strange for me to write here that I feel like we’re lucky. We’ve had the worst thing I can imagine happen, so it’s hard to feel like we come out on the good side of the lucky equation, but in this way we do. Over the past 8 months, we’ve really seen what an amazing support system we have, and that makes us pretty lucky.

Let’s start with family. I’ve heard some pretty bad horror stories at how families have handled the loss of a baby. From parents who don’t count those lost children as part of their grandchildren (they say they have no grandchildren when they should say they have 1) to not recognizing important days throughout the year like holidays and their birthdays. We’ve had none of this. Vivienne has Grandparents who count her, who all have candles, photos, and a framed poem for her in their homes. On Christmas, she had a tree covered in ornaments given to her by relatives and stockings with her name on them. In my Mom’s frame of all of her grandchildren, there is a picture of Vivienne front and center. My Father in Law made a special frame for a poem that hangs in our house and theirs. And my nephew sent me a note once about how my great nieces talk about their cousin Vivienne who is an angel in heaven. She is a member of our family, and everybody sees that, which makes us pretty lucky.

Then there are our friends. Again, I’ve heard the horror stories of “friends” telling people who have lost a child that they should be over it, that their grieving is inappropriate or even gruesome, and friends who disappear because it’s just too sad, and they can’t handle it. We’ve had a little bit of that, but not very much. For the most part, people check in to see how we’re doing, tell us that they think of us and Vivienne, and that they are doing what they can to understand what we’re going through. No one has ever told me it’s time to move on or that they think how I’m managing through losing Vivienne is wrong (I’m sure there are some who think it, but they’re kind enough not to say anything). Again, that makes us pretty lucky.

And then there are the long lost friends we only see on Facebook or email. They don’t know much about our lives these days, but they still send us nice thoughts, and many have made generous donations to our March of Dimes Walk in Vivienne’s memory. It feels good to know that she’s touched the hearts of so many people.

And I can’t forget the people who came with “support” in their job description, all of the people in our support groups, both online and in person. They are the ones who understand, tell me what I’m feeling is normal, and give me hope that there are some good days ahead. When I am having a bad day (which happens more often than I like to admit), they are the ones I reach out to, and they are ALWAYS there to listen, send their good thoughts, and let me know I’m not alone. I’ve been lucky to find some really amazing women through these groups who have helped show me the way through the darkness.

But most of all, there’s my husband, who is my main source of support. You might be surprised to hear that I’ve heard horror stories about the husbands too. The ones who won’t talk about the baby or the loss, who don’t know what to do when we’re crying, or who just want to move on and leave the past in the past. Nothing could be further from the truth for us. I know he’d do anything to change what’s happened and fix my sadness, but he also respects that it can’t be fixed. He shows what an amazing Father he is everyday—protecting his daughter and her memory. He listens to me talk, holds me when I cry, listens when I get mad and vent, and understands more than anyone else can what it’s like to walk our path.

Losing Vivienne is without question the hardest thing I’ve ever been through, and I’ll continue to work my way through this for the rest of my life. But I am lucky that there are so many people around to support me in that journey. All of the kind, supportive words have meant more than I could possibly say and help me to get up every day, put one foot in front of the other, and try to move forward as best I can. And when I fall down, which I do, I know that one or more of these people will be there to help pick me back up.

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If you're interested in donating to the March of Dimes March for Babies in memory of Vivienne,  you can donate at www.marchforbabies.org/forvivienne

Rainbows

I remember hearing a friend talk about losing her Mom, and the significance she saw in fireflies. Whenever she saw them, it made her feel like her Mom was close to her. After Vivienne died, I longed to have something, some symbol, that would make me feel a connection to her, like she’s sending me a message from heaven.

I thought about this a lot in the days and weeks after we lost her. Often when I did, a song that was popular at the time would come on the radio. It took me some time, but I finally took the message from the first verse.

Lord, make me a rainbow, I'll shine down on my mother

She’ll know I’m safe with You

When she stands under my colors.

Oh, and life ain’t always what you think it ought to be, no,

Ain’t even grey, but she buries her baby.

The sharp knife of a short life.

It’s from the song “If I Die Young” by the band Perry. It was a pretty popular song around the time that Vivienne died, so I heard it a lot. I took my sign that this was the symbol I was looking for—that rainbows would be a message from my daughter.

I didn’t know it then, but there is special significance to the rainbow in the loss community. Children that come after loss are commonly called our “rainbows.” Someone once told me that, in mythology, rainbows represent a bridge from heaven to earth (I looked it up and it’s true). Everything I saw and heard reinforced the sign that the rainbow is a connection to my daughter.

And so it’s a symbol that I hold dear. Our Vivienne Bear (www.mollybears.com) has a rainbow on its chest. My ringtone is “Somewhere Over the Rainbow.” It is Vivienne’s special symbol, and one that helps me feel close to her.

When I have a tough day, I’ll say “Lord, send me a rainbow,” and I have to say, He usually does. Not always in the traditional ways we would expect, but I keep my eyes and ears open for it, and I find it. Often, it’s a picture of a rainbow that someone posts on Facebook—they don’t know that it’s the sign I’m always looking for, but there it is. Sometimes, I hear it in a song. And sometimes, it just shows up somewhere unexpected. I remember being in the doctor’s office once—laying on the table for yet another exam. As I looked at the ceiling, I saw that the light made a rainbow for me to focus on—a special message from my daughter. I love each of these unexpected ways that God and Vivienne send me rainbows. My response is always the same—message received baby girl, thank you.

While I love every one of these messages from my daughter, I have to admit, I’m longing for a real rainbow. Every day, I search the sky. I know that rainbows aren’t an everyday kind of thing, which is another reason I love it. When I see them, they are special messages from Vivienne and mean so much more. Some day soon, I’ll get that real rainbow (hopefully many times over the coming years). Until then, I’ll take my messages from Vivienne however she wants to send them. Each unexpected message lets me know she’s with us. Message received baby girl, thank you!

Out of Control

I’m a pretty Type A person. I like to be organized and to feel in control. I make lists and cross things off to feel accomplished. I don’t like to lose things or forget them. I am almost never late for anything. Everything goes on my calendar—work, personal, and fun plans (I actually have 3 calendars).  For the past 6 and a half months, I have never felt more out of control of my life.

Pregnancy was a huge test for me in my ability to control anything, but I seized control of as much as I could. I read books, and I researched everything I should and could do to ensure a healthy pregnancy. I went to my doctor’s appointments like clockwork with a list of questions for her to answer. I actually went into my very first doctor’s appointment at 8 weeks with a list of questions that started with fetal monitoring and c-sections. The nurses laughed at me for how long I had before I'd need those answers, but I wanted to be prepared. Deep down inside, I know this came from trying to control the uncontrollable. I wanted to feel like I had a hand in a positive outcome.

Any illusion of control that I had was taken away on August 19^th. I don’t feel like I can control much of anything anymore, which is really hard for me to deal with. I can read and research all I want, but at the end of the day, my entire life feels very much out of my hands. I cannot control my sadness, or sometimes any of my emotions. I can’t control whether I get another shot to have a living child or not.

My husband and I have talked about how this is maybe one of the lessons that we’re supposed to take from losing Vivienne—that we’ll never have the kind of control over things that we’d like. But, what am I supposed to do with that lesson? Just put everything out for the fates or God to decide and wait for the outcome to happen? That feels a lot like letting someone else live my life.

So how do you let go and still feel like you’re taking charge of your life? How do I release control and not feel like I’m just letting life happen to me? I know that there’s got to be a happy medium in there somewhere, but hard as I try, this control freak just can’t find it.

Acceptance

In a few days, Vivienne will have been gone for 6 months. Considering that I was blessed enough to carry her for 22 weeks and 1 day, this time marks that we’ve been without her longer than we had her with us. As I look back on the last 6 months, I know that I’ve learned a lot, but that I also still have a lot to learn. What I’m working on the most these days is acceptance.

I’ve accepted that she’s gone. I’m certainly not walking around in denial that my daughter isn’t really dead. Although, I do have to admit there are still moments where it all feels like a bad dream, and I wonder whether I was ever really pregnant. But most days, I am fully aware that she is gone and never coming back.

What I need to accept is that things are different. It will probably always be difficult for me to be around pregnant women, to see newborn babies, and to see any little girls who would be about Vivienne’s age. I need to accept that there is a bitterness that comes with losing a child—the envy of other’s happy ever after—that may never fully go away. I need to stop making myself feel bad for not being able to bask in the glow of other people’s happy baby times. I don’t deny them their happiness, but I also don’t have to torture myself with it. It feels selfish, which I guess it is. Accepting that survival tactics are OK, even if they are inherently selfish, is actually harder than it sounds.

I’m learning to accept that missing her is part of loving her. Those days where I miss her so much that I don’t know how to move forward shows the depth of my love for her. Attempting to shut that down or turn it off would be equivalent to stopping my heart. I miss her every second of every day because I love her every second of every day. And it will be that way for the rest of my life.

The acceptance that I’m working on most of all is that, for better or for worse, this is my life. This is the hand I was dealt, and I need to live with that. Accepting that my family will never be whole, that I will never see my daughter grow up, and that I will be a loss Mommy for the rest of my life is harder than I can describe. This acceptance is going to take some time, and I guess I should accept that I might never fully get there.

The Early Days

I was pretty much a hermit in the early days after Vivienne’s death, and I didn’t start this blog until a few months after losing her. I haven’t told a lot of people what those early days were like. I feel a bit of an obligation for people to understand those days—mostly because in all likelihood, you will know someone who will have a loss (1 in 4 do, an unfortunate statistic). And maybe understanding what those days are like will help you to bring comfort to a friend some day.

The initial hours and days were complete shock. There were big decisions that needed to be made, and we were in no shape to make them, but had no choice. We were asked if we wanted to name our daughter, which was an easy one for us. She is still our daughter, and she deserves a name. We were asked if we wanted an autopsy, and we were asked what we wanted to do with her remains. We were given the names of funeral homes. We were not asked if we wanted pictures of her, which in hindsight was the thing we missed. Fortunately, the nurses took pictures of her without our knowledge, so we have those to remember her. But, we don’t have any pictures of us with her, which I know is a big regret for both of us.

We threw away the clothes we wore that night—another reminder that we didn’t need. As we left the hospital, achingly aware of how empty our arms were without our baby, the nurse commented that it was a sunny day, but felt like it should be a rainy one. We went home and shut the curtains—darkness seemed the only appropriate environment. We spent the next few days in a random rotation of crying, sleeping, and feeling numb to the world.

On Sunday, the flowers started to arrive. Over the days after Vivienne’s death, we received countless cards, flowers, and gifts from friends. We joked that our house looked like a funeral home, but it brought us so much comfort to know that people recognized the depth of our loss. We kept every card we received, and pressed a flower from every arrangement to put with Vivienne’s things.

Sunday night, I woke up around 1 am completely overwhelmed by the loss. I was crying so hard that I could not breath, and I wasn’t sure how I would ever survive this. I got up and wrote the words I would say at Vivienne’s memorial service. Then I sat on the couch, rocking back and forth, and crying like a mental patient until my husband came to get me.

That week, we met with the funeral director, signed paperwork to have our daughter cremated, and picked out a box for her remains. We bought a hope chest (ironic) to put all of Vivienne’s things in. It wasn’t an option to give them away, and we could never use them for another baby—those are her things, and they stay with her.

My husband and I made an agreement, as we each worried about the other one falling into a pit they couldn’t climb out of. Our agreement was that we get up every day and take a shower. That was it. Some days, that was harder to do than it sounds.

Gordon and I were inseparable during those weeks. We did everything together, and couldn’t be alone. Our first trip out to the grocery store, we split up to get it done faster. I showed up at the cash register with cupcakes in my hand. He gave me a look, and I said “I saw a pregnant woman, so I grabbed cupcakes.” That was an acceptable answer.

We tried to leave the house once a day, coming up with random errands to run to force ourselves out into fresh air. But do you know what’s everywhere during the day on weekdays? Babies. Lots of them. It seemed like we couldn’t go anywhere without seeing someone with a baby, and me feeling like I had a flashing sign over my head that said “my baby died.” Part of me wanted to go up and tell these new Moms to appreciate what they had, but I knew enough to know that this would only make me look crazier.

There are all sorts of the things you never consider in the aftermath of losing a child. Did you know that your milk still comes in? My body delivered a baby, it didn’t know she died. So about a week after Vivienne died, I got a very painful physical reminder that I had no child to parent. That lasted for about a week. Then there are the kicks. Technically, they are spasms in the uterus as it shrinks back to normal size. But what they felt like were Vivienne’s kicks. I thought I was officially losing it that I could still feel her move and kick inside of me.

The mail, email distribution lists, and the nurses at the doctor’s office also don’t know she died. So, the fliers for cord donation, maternity wear, and formula keep coming. To this day, we still get flyers offering coupons on our child’s first photos. I had to physically remove myself from every email distribution list I could (and there’s no box to check for “I don’t want to receive your emails because my baby died.”), and I still get emails from maternity stores. There were trips to the doctor’s office where the nurses would ask “how’s the baby?” because they didn’t read my file in advance. It seemed like the hits just kept on coming one after another.

Two weeks after Vivienne died, we had her memorial service. It was just family at our home, and I think it was perfect. We played music for her, read poems or words we wanted to say, and cried with our family. It gave us some peace to know we had honored our daughter. It’s one of the only “proud parent” moments that we get.

I went back to work 2 weeks after Vivienne died. In hindsight, I can say without hesitation that it was way too soon. At the time, I needed something to do—something to occupy my time and my thoughts. I cried at the office A LOT during those first couple of weeks. I still do sometimes, but I try harder to hide it now than I did before.

I can still remember how raw the pain was in those first few weeks. I know that I have healed a lot over the past 6 months, but I also know that I still have a lot of healing to do. There are days when that time feels so far in the past. And then there are days like today, when I wake up missing her so deeply and profoundly that I don’t know if the tears will stop.  I guess that’s how grief goes—some days, you feel like you’re making real progress. And other days, you feel right back in the midst of it.

A little understanding

In the days and weeks after Vivienne’s death, we got a lot of offers for “anything you need.” At the time, I couldn’t articulate what I needed. Now, with tomorrow being 5 months since she died, I think I’m finally figuring it out. What I need is understanding.

It’s a tough one to deliver on, because I know that people who have not walked this path cannot truly understand what it’s like. They can’t understand what it feels like to have all of your hopes and dreams crushed in a matter of hours. What it’s like to go through every part of giving birth knowing you won’t have a baby to take home when it’s done. What it’s like to wonder if there will ever be a time when you feel normal again. What it’s like to spend time with your daughter by sitting with her ashes and looking at the only pictures you will ever have. It’s hard to ask for people to understand what losing a child is like, and I don’t expect that kind of understanding.

The understanding that I need is to recognize that my daughter is real and that she matters. That just because I didn’t carry her full term, and she lived no longer than 8 minutes that she’s somehow less of a person. She cannot be replaced, in my heart or with another child.

The understanding that I need is that my grief is powerful, and that grieving is something that I need to do. I know that grief and sadness are uncomfortable for a lot of people. It’s something we’re supposed to help people out of, not sit with them while they’re in it. When someone is sad, it’s our job to cheer them up and let them know that everything will be OK. But here, that’s just not the case.

The understanding that I need is that I will grieve, in one way or another, for the rest of my life.  This doesn’t mean that I won’t laugh, have good times, or enjoy life. But, there will always be something missing from my life because my daughter isn’t here with me. I know that with time, the grief will change. It won’t always be the sharp and constant pain that I’ve felt these last few months. But it will always be with me because she is a part of me.

The understanding that I need most of all is to know that what I’m feeling is OK. It’s not a process with clear and consistent instructions for how to get through, and it’s not a linear path. Some days, I’ll move forward, some I’ll move backward, and some days, I may not move at all. There will be a day where I feel I’ve made a lot of progress in working through my grief, and the next day might feel like August 19^th all over again. There isn’t a “right way” to get through losing a child. For me, there’s only my way.

I’ve had some amazingly supportive people around me over the last 5 months. And the one consistent theme about their support is that it’s just support, not judgment and not attempts to fix things. No words of “it’s time to move on” or “you need to focus on something else” or “everything will be OK.” Just words of “I’m sorry” or “I’m here for you” and even “this sucks.” And I want to say thank you to those people. Thank you for taking this journey with me and supporting me through it. I know it isn’t easy, but I also know that I can’t do it alone.

A Parallel Universe

I had a friend in graduate school who used to talk about this girl he liked. He’d always say “in some other universe, we have a smoking hot relationship.” I don’t know why, but this keeps popping into my head these days. It has me thinking (hoping, maybe) that there is some parallel universe where things worked out differently.

I like to think that there’s another world out there where my husband and I are home enjoying time with our newborn daughter right now. I’m sure we’re complaining about the lack of sleep or the crying and changing of diapers. But, I hope we’re appreciating how special it is and are grateful for what we have.

I have this vision of walking through my house, holding my baby girl and singing to her. Visions of watching her Dad hold her and rock her to sleep. All play like dreams in my head, but so strong that I kind of hope they are a window into another world. It’s weird—in these visions, I can see us so clearly, but I can’t see her. She’s always swaddled in a blanket or blocked by a person so I can’t see her face. It’s like another reminder of getting so close to what could have been. And then the vision slips away.

I hope these parallel universe parents understand how lucky they are. Getting to hold that baby girl is something I got to do for such a short period of time, but now the emptiness is so strong. They’ll get to watch her take her first steps, teach her how to ride a bike, and send her off to her first day of school. They know what color her eyes are and what her laugh sounds like. They’ll know her favorite foods and the signs that she’s tired or hungry. They get to hug and kiss her and celebrate her birthdays and Christmas with her. They’re the luckiest parents in the world, because I have no doubt that she’s an amazing kid.

And then it hits me. Even though there may be this parallel world where we get to raise Vivienne, I don’t get to be in that world. I’m in this one. The one where we mourn not getting to do all of those things with her. The one where her loss is so much bigger than I can explain. The one where I cry tears of sadness rather than tears of joy. The one where I have to try and make sense of it all. Even though I want to be in that other world, I have to be in this one, and I have to figure out how to make my way through it.