The Terrible Two's

Today is Vivienne’s 2^nd birthday. In so many ways, I’m not really sure what to say about it. To think about what should have been breaks my heart every day, but today, it weighs heavily.

I should have a toddler wreaking havoc on my house. She should be talking and walking. Instead, the silence of her absence screams at me. We moved into a new house recently, and I didn’t have to think about little hands reaching for things they could break or would be dangerous for them. It’s a thought that crossed my mind with every object I put away. I would say to myself over and over again, it’s not supposed to be like this.

What I can’t stop thinking about is that my baby isn’t supposed to be a baby anymore. I can’t help but wonder whether she’s still a baby in heaven or if she is 2 years old. I can’t picture her as a 2 year old. I’ll only ever see her as a baby – the one and only time I got to hold her and soak in everything about her. We are “celebrating” (a word that does not fit, but there isn’t another one that does) her 2^nd birthday, and yet she is and will always be a baby to us.

It adds another level of grief to our journey. We will “celebrate” these milestones for our daughter, but she will always stay a baby. On her 5^th birthday, I will mourn not sending her off to kindergarten, but also try to reconcile that I cannot picture my 5 year old daughter. She will always be a baby, and each year will be a reminder that she will not grow up to match the number of candles on her cake. I’ll think about where she should be that year, but not be able to generate an image of her in my head. She’ll be a baby until the day I die.

I think of Vivienne every day, and I miss her every minute of the day. Some times, I can smile about the great privilege it is to be her Mother. And some times, she sends me signs that give me a big smile at my thoughtful and amazing daughter. But today, I feel profoundly sad about all that we are missing with her.

Missing her like this is painful to the very core of my being. And on days like today, I have to recognize that there will always be days like this. Days where her absence causes me an emotional and physical pain that I could never describe. And all I can do is tell myself to breathe, put one foot in front of the other, and hope that tomorrow will be easier. But, I live with the knowledge that even though there will be happy days, there will forever be days like today that bring me to my knees.

We do things to honor our daughter, but it’s never enough. We have decided to do a volunteer project for her birthday every year, and we ask our friends and family to do a random act of kindness in Vivienne’s memory on her birthday. While there is some comfort in knowing that good things are being done in her name, I still can’t shake the overwhelming sense of guilt. It’s never enough. Because I can never actually do anything for Vivienne, it will never be enough.

Vivienne’s birthday feels very different for me this year. I’m still sorting through how I’m feeling. I thought it would be easier this year – not easy, by any means, but easier than the first birthday – but it’s equally hard. For some of the same reasons as last year, but with some new reasons added in. But at the end of the day, it is a milestone for our daughter like it is for anyone else’s child. The difference is that it’s a milestone reminding us of what we don’t get to share with her.

I just miss her. So much that I don’t know what to do with myself.

How Are You?

I have been asked this question several times over the past week. For the strangers and acquaintances who don’t know what I’m going through, I can usually answer with “I’m fine.” But for my friends and support system, the question has been a little heavier. It’s a genuine question of wanting to know how I’m doing, how I’m absorbing the news we got last Friday, and if I really am fine. I’ve been answering them with a shrug of the shoulders and tears, because I can’t say that I’m fine. And I have so many emotions going through my head that it’s hard to pick 1 or even 2 to be able to answer the question. So for those of you who are wondering, here are the ways I would answer.

“I am relieved.” In a lot of ways, the doctor finally telling us that we shouldn’t get our hopes up and that my chances of carrying another child are not good frees me. I am relieved that there will be no more procedures, no more poking and prodding, no more medicines. I am relieved that I can start some things that had been put off while trying for another child (like working off the 10-15 pound infertility gain). And most of all, I am relieved that I do not need to spend another month setting myself up for failure. I feel a bit of a weight lifted off of me, and like maybe I’ll get the chance to breathe again. But the second I start feeling this weight lift, it is replaced with another one.

“I am wracked with guilt.” There are still things that we could try. And while the doctors don’t have much confidence that any of them would work, they are still hanging out there. In my heart, I know it’s time to stop. But, the truth is I could still try. When people tell me that I did all that I could, it doesn’t feel right to me. I am not exhausting every possible option, and I feel like I should.

“I feel alone.” I should probably say that “we” feel alone, but I don’t want to presume to speak for Gordon. But this feeling of loneliness doesn’t come from any problems in my marriage. It comes from being in a place that so few people understand or know how to handle. I feel like the pitiful person that everyone feels sorry for, but no one knows what to say to, and so most say nothing at all.

“I am lost.” Having a child has been my primary goal for nearly 3 years. Our life has been largely built around it, because it had to be – I had medications and doctor’s appointments. Just last week, I was taking multiple pills and 1 shot every day and had 4 doctor’s appointments to navigate around. And just like that, they are all gone. My nightly ritual of taking a prenatal vitamin, which I have been doing every day for 3+ years, is no long necessary. I still reach for the vitamin bottle every night, and feel that stab in the heart when I remember that I’m not taking them anymore. This week, I didn’t need to think about assembling my meetings around a doctor’s appointment. When a potential work trip came up, I didn’t need to think about how that fit in with my cycle. The thing that I organized my life around is over, and I’m feeling pretty lost on how to go about my day without it.

“I am profoundly sad.” Hearing that news last Friday really represents yet another loss for Gordon and I. People will say how there are still ways to build our family, and that is true. But the fact is I will never carry our children. I will never feel my baby kick for the first time, I won’t feel them grow, and I won’t get that early physical attachment. And while it’s the destination (having a child) that matters most, there is still grieving when another path to that destination closes.

“I have never felt worse about myself.” I have answered the question this way for only 2 people – my husband and a dear friend who I knew wouldn’t judge me for it. But, here it is. My feelings of self-worth are at an all time low. To feel so damaged, both physically and emotionally, is a feeling I wouldn’t wish on anyone. You start to think that God just thinks you’d be a horrible parent, and so He finds every way to stop you from violating the plan. You see pregnant women and parents with children everywhere and wonder why you are so unworthy of that experience.  Infertility already does a number on the self-esteem. Getting the “probably never going to happen” speech from your doctor sends the self-esteem to record lows.

“Mostly, my head is swirling all day, every day.” All of the emotions I described above, I feel simultaneously all day long. I’m finding that it’s hard for my brain to process all of this when it feels relieved, guilty, alone, lost, sad, self-loathing and other-emotions-I-have-yet-to-identify all at the same time. I try to move forward with something to take steps to move on, and I become paralyzed by sadness. When I even start to think about getting rid of my maternity clothes, I get so overcome that I can’t even breathe.

It’s only been a week since we’ve had to let our dream go. I know there is still much healing to be done, and time will do what it always does – make things more manageable. In the meantime, I sort through all of these complicated emotions and attempt to figure out a way to answer “how are you?” in a way that is more easily understood, but still honest. It will be a while before that answer can be “I’m fine.”

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.

I Must Be Doing Something Wrong

Recently, I wrote about how I’ve stopped asking myself “why me?” I have to admit, I was pretty proud of myself for getting to that point – to a place where I stopped asking why bad things kept happening to me. Lately, I’ve been consumed with another question, and it was disheartening to realize that the question is just a variation on the “why me?” theme. I can’t seem to escape it, and it’s always running through my head.

What am I doing wrong?

It happens every time I see a pregnant woman or a baby. Every time a friend or acquaintance announces her pregnancy. And every time I see happy baby pictures. What am I doing wrong that having a living child constantly slips away from me? What am I doing wrong that I don’t get these happy moments that everyone else does and that I want more than anything?

I should state that, logically, I know that I’m not doing anything wrong. I get great medical care. I research and read. I continue to do everything I know to do to get a happy outcome. And yet, it still does not seem to be enough.

I recently returned from a work trip to Chicago. I flew into Midway and took the el to/from my hotel downtown. For any of you that have taken the orange line in Chicago, you know that it is inevitable that you will see many teenage mothers or very young women with multiple children. I had a physical reaction each time I saw one. It took a few instances before I recognized what it was. It wasn’t anger, jealousy, or sadness (although, I did feel all of these things). What I felt was shame. I wondered how a 16 year old with little means could have a healthy pregnancy and child and I couldn’t. What was I doing that was so wrong?

There must be something I can’t see or recognize that makes this keeps happening, right? I must be doing something wrong and just can’t figure it out. I’ve received lots of unsolicited advice on this topic. Stop trying so hard (I’m pretty sure that not trying will not result in a pregnancy, just saying). Stop stressing and just relax (my personal favorite – this one really does tell me that I am responsible, and if I could just calm down, everything would turn out differently).  Even well intentioned people tell me what they think I’m doing wrong in an effort to help. They must ask themselves the same question “what is she doing wrong?” We all want a solid, logical explanation that doesn’t exist.

My doctors, who are among the best in the state, are kind of stumped. All of the tests (and I’ve had MANY, MANY tests) indicate there is nothing that should cause any problems. For the most part, my losses are completely unrelated. “Unfortunately, you just come out on the bad side of the odds” our doctor recently told us. From a medical perspective, we are doing all of the right things. And still, here we are.

I’m at a loss on what to do with this question. I certainly don’t want to feel ashamed for doing nothing wrong, but I really can’t escape it. Much like everyone else, I want to fix what’s wrong. And in order to fix it, you need to find out what to fix. So when doctors tell you that there’s nothing wrong, how do you not believe that it must be something that you’re doing? It’s not intentional, but it’s there nonetheless. I must be doing something wrong. I don’t know how else to explain it. 

I’m not asking for any of you to answer this question of what I’m doing wrong – trust me, I have thought long and hard about it. I don’t have any answers, but I still keep torturing myself with the question. 

In Between Days

I sit here today sandwiched between 2 days. Yesterday was the day that ended our 4^th pregnancy, in a way we weren’t expecting. And tomorrow will be 1 year since we found out we were having a girl. I have so many emotions swirling through my head that it’s hard to sort through them all.

Just 2 weeks ago, I wrote about our latest pregnancy ending in miscarriage. That process did not go as the doctors had hoped, and we found out last Friday that with increasing levels (that were supposed to be going down to 0) the doctors were “concerned” and the pregnancy could still be tubal/ectopic. We rushed to the doctor’s office that day for more (rather painful) tests that were still inconclusive. We were sent home with the warning signs of ectopic, once again.

 We’d been through this terror before, but it is still horrific every time. Each pain, each possibility of a symptom making you wonder whether you should go to the hospital, wondering whether there is internal bleeding, and ultimately wondering if it will kill you. Every pang made me wonder whether I was ignoring something important – will I regret not going to the hospital? Is this it? I counted down the hours til my appointment on Monday, when I knew I was, at the very least, safely with doctors.

Monday morning finally came, after what felt like a weekend that went on forever (which normally, I’d be happy about). We anxiously waited for the results and got the call we both expected and dreaded. “Your levels went up. We’re scheduling you for surgery this afternoon.” As we counted down the hours til surgery, I was still very much on edge. I was convinced that my tube would rupture while I waited for surgery.

I’d been fasting since the night before, and my surgery wasn’t scheduled until 3:00. I was exhausted (you can imagine that we didn’t get much sleep over the weekend), I was hungry, and I was terrified. I reached my breaking point while they tried to put in my IV. Because I was so dehydrated, it took 3 very painful attempts to get an IV into my “tiny disappearing veins.” On the 3^rd attempt, I burst into tears and could not stop. It had built up for days and burst in front of the anesthesiologist and nurses.

The surgery was successful, and we were very lucky. They found a pregnancy in my right tube, and it was causing the tube to bulge. For them, that makes it easy to find. For me, it makes me realize how close we were to a tragedy. They were able to remove the pregnancy and save my tube, which is the best outcome we could hope for.

In the end, all I can feel is relief. I’m relieved that the days of every pain terrorizing me are over. This results in guilt, of course, because it still means a baby lost. I should be sad and mourning this child, and instead all I can feel is the ability to breathe returning.

And now I focus on tomorrow, where 1 year ago, in an unexpected ultrasound, our doctor proclaimed “your daughter is perfect!” When that day started, we had no idea the turn of events that would take place.

The day began with a call from the doctor with the results from my 2^nd trimester quad screen, where they check for chromosomal issues. Most of the results were good, but I could only hear 1 thing, “we have a positive for Down’s Syndrome.” It immediately knocked the wind out of me. To the doctor, this meant that the odds of our baby having Down’s were higher than my age would predict (and my age already gives us bad odds). They wanted me in for an ultrasound that same day to look for any physical markers. As we drove to the doctor’s office, I wondered to Gordon whether they’d tell us boy/girl, and he said “don’t be greedy, Tracey.” He was right, healthy baby was most important.

The doctor looked for all physical markers and found nothing of concern. At the end of the appointment, he told us our daughter was perfect. We could not have been happier – our baby was healthy, and we could now plan for our baby girl.

And so here I sit – sandwiched between a very bad day with an outcome of relief and guilt and a day with a beautiful memory that in hindsight is so bittersweet. I’m juggling a lot of emotions between these 2 days. I feel pulled in 2 directions trying to remember and honor 2 children lost under very different circumstances.

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.

A Mother's Guilt

I doubt that there is anyone who would ever insinuate that I’m to blame for losing my daughter. Of course I always think that people must think I did something—otherwise, how could they believe it could never happen to them? The guilt over losing a child washes over you often, and sometimes in unexpected ways.

Let me explain that logically I know that I did nothing to cause Vivienne’s death and that there is nothing I could have done to prevent it. But, the heart and the mind often don’t agree, and this is one of those situations where the heart often wins. It is my job as her Mother to protect her, and especially while she was growing inside of my body, it was my job alone.

It’s impossible not to feel as though I’ve failed her. My counselor would always correct me when I said this and tell me that my body failed her, not me. But how do I separate the two? I was carrying a perfect and healthy little girl, and my body forced her out before she was ready, and she died. When your doctor tells you that the loss is a “maternal issue, not a fetal issue” (ouch), it is a constant challenge not to believe I am the one to blame.

I have learned in counseling that when I have these feelings of guilt, I have to counter them with the truth. So each time I start to blame myself for what happened, I repeat to myself “I did everything I knew to do to keep her safe, and I would never have done anything to hurt her.” It’s true, and when I say it enough, I start to believe it again.

I approached pregnancy like I do most things in my life—with lots of research and a mission to do it the “right way” (whatever that is). I read books, I researched online, and I removed every product from my diet and regimen that anyone even thought could do her harm. I changed my face soap and toner because they contained ingredients that could cause miscarriage or low birth weight (and let me tell you, my complexion was not happy with this decision). I gave up caffeine and alcohol months before Vivienne was even a possibility and had 1 sip of a Coke while I was pregnant—that was it. I avoided every food that could cause a problem—no tuna, no soft cheese, no deli meats. I had my meat cooked well done to avoid any possibility of something bad. I took my prenatal vitamins every day, went to see my doctor regularly, ate my fruits and vegetables, and drank my milk (and I HATE milk). I even cut way back on chocolate, which for me is like learning to breathe a new way. So when I say that I did everything I knew to do to keep her safe, I know that I did. But that doesn’t change the outcome.

Even after doing everything I knew to do to keep her safe, I still carry the guilt of the “what if.” What if I had recognized the symptoms as labor and gotten to the doctor or hospital sooner. What if I had been stronger and demanded that the doctors and nurses examine me sooner. What if I had taken it easier and not gone to book club, to work, for that walk and rested instead. What if I had done a thousand things differently and she would be here now.

The grief also comes with guilt. There is guilt that you’re not grieving enough or that you’re grieving too much. When there are moments of normalcy or even laughter, there is guilt over the feeling that I’m not remembering her. I recently had a day where I didn’t cry—my first since Vivienne died. What should be felt as progress instead feels like guilt—that I’ve somehow pushed her aside in my life. It’s not true, but there’s an element that feels like if I don’t think of her and recognize her every second of every day, then I’m not honoring her. She is never far from my thoughts, but when my thoughts focus on other things, I feel bad that she’s not at the center. And when she consumes my thoughts and my grief is so strong, I feel guilt that this is not how she would want me to live and honoring her through sadness isn’t honoring her either.

And there’s guilt when my grief becomes more about me than about her.  Months ago, I made it my personal mission to wake up every morning and ask myself “how will I honor my daughter today?” It can be small things like trying to be more understanding of people and kinder. This helps me put the focus back on Vivienne and off of me. But, there are times every day where all I can see is my own sadness and the piece of our family that isn’t here. When listening to other Mothers complain about midnight feedings or misbehaving children makes me want to scream. Or listening to women complain about the pains of pregnancy makes me want to explode. The bitterness, anger, and jealousy are hard to contain. And when they come out, then I’m not honoring Vivienne, and the guilt piles on again.

So that’s me these days, a walking, living piece of guilt. I’m sure that with time, I will figure out how to reconcile and manage these feelings. I’m also sure that I’ll find new things to feel bad about. I guess that’s part of being a Mom, whether your child is here or not.