Wednesday, July 25, 2012

It Doesn't Go Away

We are quickly coming up on a year. I can’t even believe that. The last year has passed by in a haze of shock, anger, frustration, sadness, hopelessness, fear, anxiety, despair, and so many emotions for which there are no words. Yes, there have been happy moments, even some moments of peace. But if I have to summarize this last year of my life, I wouldn’t use many joyful terms.

In just a little over 3 weeks, my daughter will turn 1. We will have a celebration for her, but there will be no party. There will be no cake to smash, no special hat to wear, no blowing out the candle, and no “look who’s 1!” signs hanging at our house. As I searched for invitations to send to my family for the day, I was reminded of how different Vivienne’s first birthday will be. Every option on the market marked a happy celebration, the first of many birthday milestones. “Look at me, I’m 1!” they all seemed to say. We won’t get to celebrate Vivienne and her first birthday in the way that most other parents get to do. We will celebrate her life and how much she means to us, but it will be a bittersweet day.

I have known since August 19th of last year that August 19th of this year would be a very difficult day. What I wasn’t prepared for was the build up to the day. Many fellow loss Moms had warned me about it, so I knew to expect it. But there is no way to prepare for it. In some ways, this build up is easy to explain, and in many ways it isn’t.

The easy thing to explain is how it’s always on my mind. It is constantly thinking about where I was a year ago, that time before my life changed forever. It is always wondering how different things could be if I’d done just 1 thing differently. It is wondering what it’s like to prepare for your child’s first birthday with invitations, cake, and decorations that all fit a happy theme rather than wondering how they’ll react at the bakery when you ask for the cake to say “Happy Heavenly Birthday Vivienne.” It is longing to see her and hold her more than I could ever express.

The part that is difficult to explain is how the build up shadows everything else going on, without my realizing it. I feel out of sorts all of the time. There is always a sense in the back of my mind that life just isn’t quite right. It comes on without my recognition and doesn’t leave. I feel restless, like I should be doing something, but I’m not sure what that is. I feel like there is a dark cloud that surrounds me, and there is nothing I can do to lift it.

As we look to Vivienne’s first birthday in heaven, I know that the last year has irrevocably changed my life, and there is no going back. If I have learned anything, I know that the grief and sadness do not go away – they change, but they are always there. I know there are a lot of people waiting for the time when Gordon and I will be better. I hate to tell you, but don’t waste your time. It’s never going to happen. Over the course of the last year, we are learning to laugh again, to enjoy life, to appreciate the little things, and to hold tight to those you love who love you back. We are also learning to accept that there will always be sadness, we will always miss her, and we will never be whole. We are learning to live with a piece of ourselves missing, focusing on building the best life we can, and to always honor and remember our daughter. We are moving forward, yet always recognizing that the pain will never go away.

Saturday, July 21, 2012

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. 

Sunday, July 15, 2012

Getting What You Deserve

Over the past few months, as we experience loss after loss, we’ve had many people say to us “you deserve for something good to happen.” There’s certainly an element of feeling that we’ve paid our dues. At the same time, I have a hard time feeling like that entitles us to something good. We didn’t deserve the bad things that happened to us, so how does that make us deserving of good?

I've spent many, many days since losing Vivienne and the 3 babies after her asking “why us?” Lately, I’ve started asking “why not us?” I don’t think any one of us has done anything to deserve such horrible things, but I also don’t think we’ve done anything that makes us immune from tragedy. It would seem that bad things have to happen, and they can happen to any of us, and none of us would deserve them.

We’ve been through a lot that we don’t deserve. Holding our much loved, and much wanted daughter while she died. Three consequent pregnancies that brought much fear and worry, with only sadness in the end. And with our latest pregnancy requiring surgery, I’d say that’s a pretty full load of bad things we don’t deserve. But does it mean that now we've earned some good?

I’ve struggled a lot with the randomness of the universe that I believe to be behind all of our losses. I’ve seen some amazing women and families be put through hell, while seeing many people who we could call “not deserving” get everything they wish for and more.  I can only chalk that up to the universe being completely random. If good things happen to bad people and bad things happen to good people, how else can I see it?

There are many aspects of religion that teach us that God has complete control – we are living out a plan that we don’t understand and God is giving us everything we need, whether we know it or not. I’ve written before about how I don’t believe this anymore, and with each blow we take, I become more resistant at putting this all at God’s feet. I don’t blame Him, because I don’t think He’s responsible. I think God is giving me strength that I never even imagined I had (otherwise, I don’t know how I’m surviving this), but I don’t think He is DOING this to my family. The randomness in the universe has given us some very unlucky hands, and God is helping us to survive them.

I’ve had a very hard time coming to terms with this. In a sense, it feels sacriligeous because it violates some tenants of religion that are seared into my brain. Accepting that it doesn’t work the way I was taught as a child has been very hard to overcome. It’s also been hard to accept that life is, in many ways, random. You can do good things and live a good life and still draw the worst hand. So, what’s the incentive to do good?

I’ve come to accept that the reward for a well-lived life comes in the afterlife. While we may be punished on this earth for doing nothing wrong, I believe that the reward and justice comes when we get to heaven. I have to believe that this is where God does have complete control and the good people receive their just reward. Honestly, this is what gets me through the day most of the time. I’ve learned the hard way that this life isn’t fair. I have to believe that there is good coming to us down the line – it just might be farther down the line than I’d like.

Tuesday, July 10, 2012

In Between Days

I sit here today sandwiched between 2 days. Yesterday was the day that ended our 4th 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 3rd 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 2nd 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.

Tuesday, July 3, 2012

The Power of Four

This last week has been hard. I really didn’t expect it to be this bad. I guess it took some time for the realization of what was happening to sink in. Late last week, I could go through the motions. I was functioning and doing OK. In my mind, I had convinced myself that I had gotten used to this. I had losses before and survived, this was just another bump in the road. Over the weekend it really hit me, and the reality of it continues to pummel me every day.

I have lost 4 children. FOUR. There is something about that number that knocks the wind right out of me. When I stop and think about it for even a second, it literally feels like someone has hit me in the chest, and I have to concentrate on breathing. I have lost more children than most people have in their lifetime.

I know there are people who probably think I’m being dramatic about this. The last 3 were early losses – do they even count? Thankfully, no one has ever asked me that question, but I know that people think it. I have to admit that I struggle with it too. The loss of Vivienne was different, I can’t deny that. We had nearly 6 months of planning for her arrival. We felt her kick. We saw her heartbeat. We held her as she slipped away from us. We kissed her tiny face. And we have her remains well protected in our home. There is a tangible reality to Vivienne that we don’t have for the other babies.

Yes, we lost them very early. Yes, they never had a chance to survive. But each of them was real. We loved them from the moment we knew about them. We made plans for each of them immediately – calculating a due date and thinking about the time they would be with us. If you’ve ever taken a pregnancy test, you know that the dreams and planning start the very second you see a positive. You immediately feel a sense of responsibility for this growing life. The love and instinct to protect snap right into place. Those 3 babies were as loved and wanted as any child, including Vivienne.

After the first early miscarriage in January, I struggled with what to do to honor that baby. He/she doesn’t have a name or even a nickname. A fellow loss Mom suggested that I give the baby a symbol – something that represents them that I can use to remember them. Vivienne has her rainbows, so after each loss, I try to figure out a meaningful symbol for each baby. Baby #2 is a sun, as we’d just taken a trip to Florida. Baby #3 is a heart, because we found out we were expecting on Valentine’s Day. I’m still figuring out the symbol for Baby #4. I don’t want to arbitrarily pick just anything – I want it to mean something and be special for that baby. Each was special and loved, and I want them to know that.

Each loss has been heartbreaking for us, but there is something about this latest loss that feels like a heavier weight. After experiencing loss again and again, I’m feeling more and more like I’m caught up in a raging current. I’m trying to pull myself above water and fighting to take a breath, but the waves keep pushing me down. I’m doing my best to tread water, but I have to wonder how many more waves will crash in and how long the storm will last.