It's no secret that the holidays are hard. You never realize how kid focused this holiday is until you try to avoid everything kid focused. There are constant reminders each and every day of all that we are missing with Vivienne and our other children. I used to celebrate Christmas. Now, I try to survive it.
It has been very important to us to make Vivienne a part of our family Christmas. We don't brush our children aside on any other day of the year, and we certainly won't do it at Christmas. We started some traditions last year, and this year continued all of those while adding a few more.
First, there are her Christmas tree and her stocking. Last year, each member of our family bought a Christmas ornament for Vivienne that now hangs on her tree. It was one of the few peaceful moments we had this Christmas - taking out each ornament, remembering who bought it for her, and knowing how loved she is. There is an angel that lights the top of her tree, and her halo forms a reflective heart on our ceiling, which I love. Her Dad and I made the candles immediately next to her tree - 1 for Vivienne, and 1 for our other 3 babies. These were lit at every Christmas dinner, so our children were there with us. Her stocking hangs over our fireplace with our stockings. Each year, her Dad and I write a letter to her, which fills her stocking.
Our other tradition is to give our children gifts. We can't give the traditional gifts of toys and cute outfits. Instead, we give gifts to charities in their memory. This year, their gifts included a coat for Coats for Kids, a toy for Toys for Tots, and donations to Ronald McDonald House, the Sweet Pea Project, and our church. It's the only gift we can give.
This year, we were so touched to receive many gifts that honored our children. Two special gifts came from our parents - a snow globe/music box from Gordon's parents (the inscription inside reads "If tears could build a stairway and memories a lane, I'd walk right up to heaven and bring you home again.") and a Precious Moments figurine from my Mom (it shows a Mother handing her baby to an angel and is called "Mommy's Love Goes With You.").
My sister and niece also gave us touching gifts that honor all of our children. As I've mentioned before, each of our children has a symbol (Vivienne is a rainbow, Baby 2 is a sunshine, Baby 3 is a heart, and Baby 4 is a four leaf clover). Our niece made us a beautiful painting that honors all of them, and my sister gave us a very special ornament that hangs prominently on our tree.
And last but not least were gifts from some special friends who understand what Christmas is like after a loss. Ornaments and special sayings that will decorate our home at Christmas and year round.
There were countless other recognitions of our children this year. Some people wrote Vivienne's name in our card (which I really loved), there was a Poinsettia plant at Christmas Eve service in her name (and my Dad's), a secret Santa gift that included a V charm for my bracelet from a dear friend, ornaments for us to put our good wishes in for 2013, and a beautiful ornament from my husband.
All of the gifts are really wonderful. But knowing that people remember Vivienne and our children at this time of year is beyond priceless. Incorporating them into Christmas is really the only way for me to survive this holiday - remembering and honoring them the best I can. And knowing that other people do the same touches my heart in a way that I could never explain.
Sunday, December 30, 2012
Friday, December 21, 2012
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.
Tuesday, December 11, 2012
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.
Sunday, December 2, 2012
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.
Sunday, November 25, 2012
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.
Friday, November 16, 2012
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 5th 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.
Friday, November 9, 2012
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.
Saturday, November 3, 2012
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.
Monday, October 29, 2012
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.
Tuesday, October 16, 2012
Yesterday was Pregnancy and Infant Loss Awareness Day – a day to remember the children we’ve lost. As the day wore on, I have to admit I was a bit overwhelmed by what I saw on Facebook. In the morning, it was all women who had experienced the loss of a child talking about it. By the end of the day, so many of my friends had joined in. Remembering and honoring the children we’ve lost. It was really touching to see how far the message reached.
It may seem strange to some to have a day of remembrance. For those of us who have experienced the tragic loss of a child, remembering happens all of the time. There isn’t a day, or even a moment, that passes that we don’t think about how much we miss them and love them.
We always fear, though, that others will forget our children. When you have a living child, it’s something that doesn’t even cross your mind because that child is there – people ask how they are, what they are up to, what their new milestones are. When you lose a child, questions about them pass after about a month. And eventually, fewer and fewer people will even say their names. There are no new milestones, no birthdays, no school photos, and no funny stories. For us, it is a day for others to join in remembering and to remind us that our children are not forgotten – they have touched people’s lives and made a difference. It is value for loss parents that is beyond measure.
But this is also a day to break the silence. For reasons that I cannot understand, talking about the children we’ve lost is a taboo subject in most arenas. Apparently, it’s OK for me to talk about my deceased grandparents and father, but when it comes to talking about my deceased children, I’m supposed to keep that private.
Why can’t we talk about our children? I think it’s mostly because it makes people uncomfortable – the thought of a baby dying isn’t something people want to think about or discuss. So, if we just pretend like it never happens, we can live in a more idyllic world where logic prevails and babies don’t die. In this world, parents suffer in silence because people won’t acknowledge the gravity of their loss and how life-changing it is. And while I’d rather live in a world where I believe babies can’t die, I can’t live in one where I can’t talk about my children because it makes someone uncomfortable.
Another reason we can’t talk about our children – it makes people think that we can’t “let go” or “move on,” as if that is even possible. Somehow, by saying our children’s names and remembering them, it makes people judge. Even though these people have never experienced this loss, somehow they get an opinion on the proper amount of time to grieve, and the right way to live your life after you’ve lost a child. I’ve heard this saying often from other loss Moms – you don’t get over it, you just get through it. There is no getting over losing a child – it simply never happens. You do get through the grief, the pain, and the days without them, but the love and longing is always there. They are our children, whether they are here or not.
And so yesterday was a day to remember them and to say their names. We didn’t have to worry about judgment or discomfort from others – we had this official day to back us up. I was happy to see so many people join in and support these families and remember their children. My hope is that this acknowledgement can spill over into other days. We remember our children every day of the year. Every so often, let a loss parent know that you do too. I guarantee that you will make their day.
Friday, October 12, 2012
I’ve been pretty hard on myself lately for where I am in this grief journey. Still harboring feelings of resentment, anger, bitterness, and jealousy – all things I feel like I should be past by now. More recently, I’m trying to cut myself some slack on these feelings because I’m realizing they aren’t just about my grief journey. They are about my grief and infertility journey.
What I’m recognizing is that I haven’t really accepted this “dealing with infertility” part of my life. While I’ve been seeing a Reproductive Endocrinologist (aka Fertility Specialist) for nearly 2 years now, I never really thought of myself as having infertility. I think it’s mostly because it had been easier for me to get pregnant than most women I know with infertility. We needed a little nudge, and that seemed to be enough. Each of our pregnancies, all 4, have been achieved with clomid and IUI (intrauterine insemination). Each time, we got pregnant on the 1st try. Our infertility issues were minor by comparison to others, so I never really accepted the full diagnosis. Now, as we find new issue after new issue, I have to accept that I have more significant infertility issues than we thought.
It started last October, when we received a diagnosis of Asherman’s Syndrome. Asherman’s is scarring and adhesions in the uterus which can happen after a trauma to the uterus, like a D&C (I had 2 after Vivienne’s birth due to retained placenta). When we got our diagnosis, we dove into the research and found that it can be tricky to treat and there are about 6 doctors in the country who specialize in it. We flew to Boston to see one of them, a renowned doctor for Asherman’s who people fly from all over the world to see. He told us that we were mis-diagnosed and happily sent us on our way. We thought we had received a miracle, and so this idea of “infertility” was pushed further back into my head.
And then came our subsequent 3 pregnancies. Baby 2 in January, a chemical pregnancy which I miscarried 2 days after finding out I was pregnant. Baby 3 in February, an ectopic pregnancy which I received chemotherapy drugs to force a miscarriage so that it wouldn’t endanger my life. And Baby 4 in July, another ectopic pregnancy which required surgery to resolve. This led us to our new diagnosis of “tubal issues” and IVF (in vitro fertilization) as our option for having a successful pregnancy. It takes skill to hear “IVF” and still believe you don’t have significant infertility issues. I am that skilled. In my mind, I could rationalize that we just needed an extra push to put the baby right where it needed to be, and we’d be fine.
Then came our cancelled IVF cycle. The cycle was cancelled for several reasons, but our RE was concerned with my lining and thought he saw scar tissue on my ultrasound. So, off we went for yet another test to find out what we’re dealing with.
And then came our re-diagnosis of Asherman’s Syndrome. It turns out you can do all of the research, find the right doctor who specializes in what you need, and it still doesn’t matter. So here we are a year later, facing the same issue we faced a year ago because of a supposed specialist not doing his job. We are both incredibly angry with this doctor for what he’s put us through over the last year. At the same time, though, we have to deal with the medical issue we are faced with. It will mean another surgery for me, and some heavy duty monitoring to make sure the scar tissue doesn’t come back. And we’ll still have our tubal issues to deal with and IVF as our next step.
And so after all of that, I have to acknowledge that I have infertility. And after all of that, I have to accept that resentment, anger, bitterness, and jealousy are perfectly normal emotions to feel. Having to deal with losing my daughter feels like enough for 1 lifetime. Losing 4 children feels like enough for 4 lifetimes. But I get the dubious honor of dealing with that PLUS the difficult path of infertility. And so I’m going to stop kicking myself for having these feelings. After what we’ve been through, I’d call them pretty acceptable and even normal.
Monday, October 8, 2012
October is Pregnancy and Infant Loss Awareness month. I know that it’s a topic that people don’t like to think about – we like to think that medical advances have put us past a time where babies die. As much as we wish that to be true, it isn’t the case. One in four women will experience the loss of a child through miscarriage, ectopic pregnancy, premature births, illness, and stillbirth. As you all know, I am that 1 in 4. Four times over.
October is filled with many events to honor and remember our children. Yesterday, Gordon and I were honored to organize and host such an event. The Walk to Remember has happened in Cleveland for several years, but this year, the family who sponsored and hosted it in the past had moved away. Gordon and I always look for ways to honor Vivienne by remembering her and helping others, and this seemed like an opportunity she was surely sending our way.
Yesterday, we honored 79 babies, represented in the hearts above. Grey skies and rain could not keep us from a day to remember our children. We read each baby’s name, knowing that behind each name was a child who changed a family and a community forever. I know that I am forever changed by being Vivienne’s Mom, and by being Mom to her 3 siblings. I’m also forever changed by reading and writing each of those 79 names and in knowing so many of their parents. It was an emotionally powerful day to gather with so many who understand the journey that comes with losing a child and to think of all of those children we will not get to know in this lifetime.
Last night, as I thought back on the day, I was struck by all of the emotions I was feeling. I thought about how different this gathering was from most social gatherings I go to these days. Generally, I feel awkward and uncomfortable at most social gatherings. Much of it has to do with being surrounded by pregnancy, babies, and small children, and with me being unsure of what to say to people.
But yesterday was different. I was still surrounded by pregnancy, babies, and small children, but it wasn’t uncomfortable for me. It wasn’t until late in the day that I realized it was because at this event, I was a Mom. Let’s be honest, most places I go, I’m the sad person that everyone wants to make sure is doing OK. But, because I don’t have a living child, most people do not think of me as a Mom. At an event to honor my children, and being with other Moms who understand, I am a Mom. And it’s amazing how much that washes my discomfort away.
I’ve also had a hard time reconciling why we stepped up to host this event. I do this for Vivienne and my other children, there is no doubt about that. But I have to think about whether that is really true, because let’s be honest – I can’t actually do anything for Vivienne or my children. They don't need anything from me. Hosting this walk doesn’t do anything for them – it does something for me. I desperately search for ways to parent my children, even though there really is no way that I can. In the end, the walk helps me more than my children. But I do get some solace that it was an event that helped others. And that is definitely a way that I can honor my children.
Next up in October remembrance month is Monday, October 15. At 7 pm, we ask that you light a candle for all of the babies gone too soon. Load your photo onto Facebook and tag any loss parents that you know. You can make their Facebook wall and newsfeed a ray of light for these parents who will grieve for their children for the rest of their lives. For one night, we see the light of our children played back to us by others. We see people remembering them and recognizing the impact they had on our lives, and that is an amazing gift for any Mom.