Days Like This

I’ve been writing this blog for a little over a year now. As I think back on what I’ve written about, it’s clear that this has not been a linear journey. You can’t start reading the blog a year ago and see me steadily get “better” over the course of the year. There have been times when I felt like I was getting there, and times when I felt like I was slipping back. And that journey continues.

Today is one of those slipping back days. Tomorrow was my scheduled due date – the date when my daughter should be turning 1. Christmas is right around the corner. And New Year’s and the hope of a new and kinder year is just a little over a week away. And here I sit, mired in a funk that I probably won’t come out of for days and that, despite a year of practice, I’m still not sure how to navigate.

I do a lot of thinking and introspection on my drive to and from work. This morning, all I could think was “will it ever really get any better?” Sixteen months have passed since Vivienne died, and today is one of those days where I feel like it will never get easier. 

I feel frustrated because I’ve done everything I can to walk through the grief. I haven’t avoided it – I’ve confronted it at every stage. I have been to counseling, workshops, and support groups (in person and online). I have written (even more than in this blog) to get my feelings out. I have been honest and open about my grief, and I only plaster on the smile when I need to (mostly for social occasions and work). I have cried and screamed. I have been through bargaining, anger, acceptance, and all of the stages of grief multiple times. I have done what I’m supposed to do to get through this. And here I sit, 16 months later, unable to stop crying.

I’ve been told many times that losing a child takes a lifetime to get over – which is to say that it never actually happens. I knew this is what I was in for and set my expectations accordingly. And I don’t want to ever “get over” losing any of my children. What I do want is for it to stop hurting so bad. 

This grief journey is like climbing the tallest mountain you can imagine. You make some progress on the climb, and even though you know you may never make it to the top, you still feel good about any progress that you’ve made. But then, sometimes out of nowhere and sometimes expected and anticipated, something comes along and knocks you back down to the base of the mountain. You feel all of your progress washed away and are forced to look at how much of a climb there is ahead. It’s overwhelming, daunting, and completely debilitating. You know you have to start the climb again, and you know that at some point, you will be knocked back to base camp. There is no real hope of making it to the top, but you climb anyway.

On days like this, I am at the base of the mountain again. At some point, I will have to take that first step and attempt the climb towards progress. But today all I can think is how tall this mountain is and how I know that I’ll never reach the top. I have no choice but to climb, but when you know that something will come along to knock you back, it’s hard to think about starting that climb again.

It Will All Work Out

I can’t tell you the number of times someone has told me “everything will work out” or “you will have a child someday.” I so appreciate the good intentions behind those words – it tells me how very much people want Gordon and I to become parents again, and this time with a child we get to raise. But, I have to admit, I really struggle with this sentiment.

It’s visible on my face when someone says it to me – I’m not projecting the hope and optimism that I’m supposed to. If only I could think more positively about it and see that this was in my future! But in the end, I don’t know that this is in my future. I never would have guessed 2 years ago that I would be sitting in the position I’m in now – 4 pregnancies, 4 losses. That makes it very difficult to see a future with a living child, hard as I may want to.

I know it’s hard for people to respond to me when I seem so hopeless. I wish that people could see that it isn’t lack of hope that causes my reaction to be the way it is – it’s hard doses of reality. I live in a world where I know first hand that a positive pregnancy test means nothing. That getting to a certain point in a pregnancy means nothing. That just because I have been through devastating losses does not mean that I am immune from more loss. It may seem like pessimism that I don’t whole heartedly nod and agree when I’m told that I’ll have another child, but it’s really just knowledge based on the education I have received.

I want to believe that you are right more than I could ever tell you. I want to believe in a world where the universe deems that some people have paid their dues and been through enough and now things can work out like they hope. But I can’t. I haven’t deserved a single one of my losses, so I know that there is no great scale of justice in the sky that will attempt to balance those out with the blessings of a successful pregnancy and healthy, living child. It’s not pessimism – it’s reality. Life isn’t fair. Babies die. Runners die of heart attacks. Non-smokers get lung cancer. It doesn’t all balance out, and it doesn’t always work out.

I know that it must sound harsh to say all of this, and I understand that it’s hard for people to accept. We want to be positive, believe that if you want something enough to work at it, that it will be yours, and that life gives us all what we so richly deserve. I want to believe that too, but I can see countless examples of how this isn’t the case. I know it’s hard to accept, because if we are forced to accept that life isn’t fair, then we are forced to accept that these tragedies can happen to any one of us. Hard work, diligence, hope, and optimism don’t make us immune from tragedy. Nothing does.

For some people, life just doesn’t work out like we’d hoped. There is no rhyme or reason why this happens and who it happens to – as my therapist likes to tell me “it’s just dumb luck.” Sometimes luck isn’t on our side. Sometimes that luck turns around, and sometimes it doesn’t. Just know that as much as I want to believe it, it's hard for me to get on board with the idea that things will work out for Gordon and I, and we will get our happy ending. Being dealt a year and a half of the worst possible luck will do that to a person. It’s not negativity – it’s learned response.

It's the Little Things

In the months after Vivienne died, I found myself constantly thinking of the big milestones we would miss having with her – first birthdays, seeing her take her first steps, or going to her first day of school. I still have those moments, but they have been overtaken by thinking of all of the little things we will never get to experience with our little girl or our other children. Every day, there are thousands of things that remind me of what we are missing with them. Small, inconsequential, mundane moments that most people probably don’t notice with their kids – I’m aching for them.

I drive to work and think about what it would be like to have her in the back seat, babbling or fussing, as I drive her to Grandma’s house. I come home and think about what it would be like to see her face smiling back at me. I eat dinner and wonder what foods she would like and not like. I have a day off and I think about what it would be like to spend the day with her – doing some shopping, going to the zoo, hanging out and playing at home. Every day, a thousand little things cross my mind that I’m missing with my children.

I even have dreams about these everyday activities. Recently, I woke up in the middle of the night feeling sad and empty because of a dream I’d had. In it, I was buying baby clothes for Vivienne. That was it. I have dreams about the incredibly simple act of buying clothes for my daughter, and they wreck me.

We recently took a vacation, and while it was nice to get away, it also came with the thousands of reminders of what we will miss. We’ll never see our children light up with excitement at the prospect of swimming every day. We’ll never take them to the beach and build sandcastles. We’ll never see them get over-excited over an ordinary hotel room. We’ll never get to calm them during a meltdown over having to leave the pool. I know that those of you with kids cringe at that last one. I’d give anything for it.

The holidays come with this overwhelming mixture of big and little things.

For Halloween, I not only thought about how I would never take my kids trick or treating or take pictures of them in costume to show to everyone. I also thought about how we’ll never have the conversation “what do you want to be for Halloween this year?” We’ll never go shopping for the costume, and watch Vivienne proudly display it. We’ll never have those arguments over not being able to wear the costume all of the time or having to wear it even if it’s itchy or uncomfortable.

For Thanksgiving, it’s not just about not having her there for the big family meal. It’s about never doing the drive to our family’s with her, not getting to watch our family members hold her and play with her, and never seeing turkeys made from her handprints.

And Christmas isn’t just the loss of visits to Santa and opening presents on Christmas morning. We’ll never pick out a special Christmas outfit for her, see her in the Christmas play, sit down with the toy catalog and make a list for Santa, have the conversations about whether or not Santa is real, bake Christmas cookies with her, decorate the Christmas tree with her, have her join us for the annual girl's Christmas shopping day, or watch her play with the boxes and wrapping instead of her new toys. One holiday, thousands upon thousands of things to miss.

And so these become the latest things for me to grieve. Every day, a thousand things to mourn that I’ll never get to do with my children. Beyond the big milestones of birthdays and holidays, I’ll never buy toys or necessities for my children. I’ll never watch them play outside in the leaves and the snow. I’ll never have them running around the house playing, singing, and getting in the way. Everyday parenting moments stolen from us, and each one feels like another loss.

Still No Joy in Christmas

In the years before my children, I loved Christmas. I would put up my Christmas decorations on the earliest possible acceptable day, l would only listen to the radio stations that played all Christmas music all the time, and I would watch every Christmas movie I could find.

Last Christmas, I didn’t put up all of our Christmas decorations. I didn’t listen to a single Christmas song or watch even 1 Christmas movie. For the first time in my life, I did not go to church on Christmas Eve. Vivienne had been gone for 4 months, and her due date was on December 22. The Christmas spirit or any joy for the holidays was impossibly hard to find. I told myself it was OK to take a year off.

This year, I decided to push myself a little and got out all of the Christmas decorations. It didn’t take long for a complete and total emotional breakdown. I can’t even pinpoint it to one thing. In so many ways, this Christmas was supposed to be different.

Last year, I was in the depths of my grief. It was supposed to be the best Christmas we could ever have imagined – our daughter’s first Christmas, having welcomed her just days before the holiday. It was harder than I could have imagined to make it through that holiday without her, but I still had hope. We were getting ready to try again, and I believed that next Christmas would be different – we would have some joy in celebrating with Vivienne’s little brother or sister.

This Christmas was supposed to be different. It should be a time of letting some joy back into our lives. In many ways, it feels worse than last Christmas. Last Christmas, I had some hope that next year would be different. Now I know better, and I can’t find that same hope anymore.

So as I started putting up some decorations, I was reminded of all of the things I’m missing this year. I don’t have my 1 year old daughter playing with the ornaments, getting ready to see Santa, or picking out my favorite pictures of her to go on our Christmas cards. I don’t have the rainbow baby that we tried so hard for over the last year – a new life that would put at least a little joy back into Christmas. And I don’t have the hope that next year will be different. This could be our Christmas from now on – always grieving what could have been, but never seems meant to be.

I can’t quite decide what to do with myself now. It doesn’t feel right to put the decorations up, and it doesn’t feel right not to. Either way, it’s a reminder of all that is missing. I wanted this Christmas to feel like a step forward. I wouldn’t take another year off, I would move myself forward, whether I wanted to or not. Instead, I’m realizing how much more I’ve lost and wonder whether I’ll ever be able to find joy in this holiday again. 

A Lonely Combination

I’ve talked before about how the loss of a child can be an incredibly isolating experience. As I sit here today, I realize that I had no idea what isolation really felt like. When we lost Vivienne, I felt like no one could possibly understand how that felt. And then I found support groups and other loss Moms who did – they made me feel understood and less alone. But as we’ve battled miscarriages, infertility, tubal issues, Asherman’s, and surgeries, the circle of people who truly understand gets smaller and smaller. The group of women who understand what it’s like to fight so hard to get that living child, when all of your children are dead, is impossibly tiny. I can count on 1 hand the number of women I know who deal with this, and I only know one of them in real life (not just on the internet).

It’s an incredibly lonely and isolating combination to have the one-two punch of loss and infertility. We defy every cliché that people like to use in the loss of a child (“you can have another one” “at least you know you can get pregnant” “everything will work out” “at least you have your other children”). Every child is a miracle, there is no question about that. But when you suffer with infertility and find yourself pregnant, it is a miracle of miracles. To have that miracle taken from you is soul-crushing. To live not knowing if you will get another chance at that miracle is beyond words.

Working through my latest hurdle and coming out of my latest surgery has made me feel like the worst possible 1 in a million. I had multiple doctors in my pre-op appointment, my surgery, and my follow up. Doctors and medical students who wanted to learn about my case, because it’s not very common. The doctor treating my Asherman’s has treated 4 other cases this year. He’s the chair of the OB/GYN department at my hospital network, the lead dog, and the one with the most experience. I was his 5^th case over the course of the entire year. In medical terms, it makes me unusual. To me, I just feel like some freak of nature.

I am fortunate to have many friends and family who genuinely try to understand my circumstances, which I so appreciate. But I learned in dealing with losing Vivienne that there is no substitute for talking with people who understand because they have lived it. Try as hard as I can to understand and empathize, I cannot truly know what it’s like to walk in another person’s shoes. But these loss Moms had walked in my shoes, and they made me feel understood and part of a community. And lately, because of all of the other battles that infertility and Asherman’s brings, I feel less connected to that community. The community of people who understand the combination of infertility and loss is very, very small.

I don’t know what the coming months will bring for us. To say that I hope that we can join the community of rainbow parents is an understatement (hope just isn’t strong enough, and there isn’t a word that is). I know that we have lots of people walking behind us, cheering us on, supporting us, and hoping that same hope. But as we continue on our journey, it feels very much like the path not traveled. There are very few guides who understand the landscape or the route. Gordon and I are on our own here. And while it helps to know that we have each other, I’m finding that I really miss having a room (be it chat or real) full of women who nod their heads at me in agreement because they have been there and they understand.

How Many Hurdles?

Yesterday, I had surgery. Another hurdle to jump over in our journey to have another child. As I sit here recovering, I can’t help but think about how much more difficult this journey has been than I ever expected. And how confused I am at how it happens so easily for other people, and we just keep getting new hurdles thrown in our path.

I can’t lie – I’m running out of steam. I’m not quitting by any measure, because my ultimate goal is still to have a living child. But I really don’t know how many more hurdles I can jump. I’m just tired.

Yesterday’s surgery was to remove scar tissue from my uterus. I went into the day thinking it was just another thing to check off the list, we’d get through it, and we’d move on. But it’s been more physically and emotionally painful than I’d prepared for.

The physical pain and discomfort is caused by a balloon filled with saline that now fills my uterus. It causes some pretty serious cramping and makes any other position but lying down uncomfortable. I have a tube hanging between my legs that connects to this balloon, which weirds me out in ways that I cannot explain. I will have this until Tuesday and will be on medication for a month. At the end of the month, my doctor defines a successful surgery as me having a “horrendous period.” That’s how good news goes in my world.

The emotional pain was something I hadn’t really prepared for. As I lay in a hospital bed yesterday waiting as people got me ready for surgery, I looked up to heaven and pleaded with God that this be it. That this is the last of the hurdles before getting a chance to try again. I feel, in some respect, that I’m asking God for an easy way out. But let’s be honest, nothing about what I’ve gone through has been easy. And I don’t even have an easy path forward – it will still be IVF that gives me the greatest chance for a living child. At some point, I just want someone, maybe God, to acknowledge that I’ve been through enough. I’ve certainly been through more than most people I know in getting to this point. So when is enough enough?

My biggest reassurance yesterday came in a sign from my daughter. Just before I was taken in for surgery, the nurse led me to a bathroom down the hall. I had to walk through another patient room to get there and hanging on the wall was a painting I could not have imagined in my wildest dreams. It was a large painting of a rainbow with the words “Somewhere Over the Rainbow” around it. Surely, a sign from Vivienne that she was with me through all of this, sending me a rainbow the only way she could inside of a hospital. Nothing that any doctor could have said to me could have reassured me more than seeing that painting.

And so now we soldier on, trying our best to hold on to the hope that this really is the last hurdle, and keeping firmly focused on our goal. It has been more difficult to get to this point than I ever could have thought. I’m so very tired, and my reserves are low. But, I’m not giving up. All I can ask is that please God, let this be the last hurdle. I’ve given it my best fight, and I don't know how much fight I have left.

Life on a Different Planet

This past week, I was on a business trip, and in one of our meetings, we had an external speaker. As he finished his talk (and veered a little of course), he started to talk about how statistics and numbers could be deceiving if you don’t think them through. The example he gave was life expectancy. He commented that everyone thinks we’re living longer, but we’re not (I’m not sure that this is actually true). He said the reason the numbers look like we’re living longer is because babies don’t die. He actually said the words “it’s because your babies don’t die anymore.”

You can imagine that a statement like that is a knife through the heart for me. But, I had to sit there, push down my desire to scream, and figure out how to make it through an important meeting. There were about 30 people in the room, and less than a handful of them know what I’ve been through. I have no idea if they thought of what must be going through my head – I either looked down or straight ahead as I tried to ignore what was happening.

But, it made me think about statistics. The stats are that 1 in 4 will lose a child through miscarriage or early loss. So, of the about 30 people in that room, it would have to mean that I wasn’t the only person who had a loss. But I know that a lot of those 1 in 4 are early miscarriages. Odds would say that I was the only person in that room who held her dead child in her arms. You could pack that room with a lot more people, and the odds would still hold that I would be the only person who delivered a baby only to hold them while they died.

What happened to me happens to about 1%  – an incompetent cervix, chorioamnionitis, and a delivery at 22 weeks and 1 day. It could be a room full of 100 people, and I would be the only one.

I read an entry in another blog once that has stuck with me over the past few months. They commented that after you lose a child and everything in your world changes, everyone else lives on planet earth, and you live on planet “my baby died.” It colors everything in your world, and nothing is the same. I think about that often, and especially in moments like this meeting.

Everyone else in that room sat there thinking about what an interesting point the speaker had just made. I sat there and thought about this from planet my baby died. I live in a world where I know that what he’s just said isn’t true – babies do still die. I wondered if I was the only person in the room thinking about it from this vantage point or if there was anyone else from my planet listening like I was.

I’ve never wanted to be the person who just says to people “you can’t possibly understand” because I feel like that creates division between people who have had a loss and the people who want to support us. A main reason for writing this blog is to help people understand and feel understood. But in moments like this, it’s hard not to feel the distance between planet earth and planet my baby died. And when you feel like the only person in the room from planet my baby died, it’s an incredibly isolating experience.