Thursday, December 26, 2013

This Christmas

It’s been a while since I’ve written. Over the past few months, I’ve had a few different blog posts floating around in my head, but I never took the time to sit down and write them. This one, I knew I had to get out. I waited until Christmas was largely over – partly because I needed to see how this latest Christmas would play out, and partly because I knew that people wouldn’t want to read my sad thoughts when there is so much merry to be had. It’s the extra dose of grief that parents missing a child get to carry at the holidays.

I come into every holiday season with a healthy dose of apprehension. I never know what the holidays will be like. Will this be the year when I can find some joy in Christmas again? Or will it be weeks of survival mode, trying to survive and make it to January?

Our first Christmas without Vivienne was incredibly painful. She was supposed to be born on December 22nd, and so the holidays came with a fresh round of loss for us. I wanted no part of Christmas that year, and I spent most of it in tears trying to figure out how I was even supposed to go on living.

Our second Christmas, I tried. I did the decorations, I went back to church, back to the holiday parties, and I tried to find the Christmas spirit. We developed our new traditions – putting the ornaments on Vivienne’s tree, picking out toys to donate in her memory, lighting a candle for her at the Christmas dinners. There were fragments of joy, but it was still a sad holiday season.

This year, I tried again. I did the decorations, I went to church and the holiday parties, did our Vivienne traditions, and even watched a holiday movie or 2. And at every step, her absence stood right beside me, never failing to make me recognize who was missing. Her absence was a presence throughout the Christmas season.

As we decorated the tree, I stood there and looked at it, knowing that there should be a 2 year old beside us helping to hang the ornaments.

As we went to pick out toys for Toys for Tots, I wondered what types of toys she would like and had to acknowledge that I would never get to buy her one.

As I looked at Facebook each day, I was reminded that we’d never hear her Christmas list, get a picture of her screaming on Santa’s lap, or hear any “out of the mouths of babes” funny quotes from her.

As my husband baked the Christmas cookies, I saw the absence of little hands ready to decorate the sugar cookies and “help” make the cookies.

As I sat in church on Christmas Eve, I watched children run up for the children’s sermon. Seeing all of the little girls in their special Christmas dresses just reminded me that I’d never pick out a special outfit for Vivienne, dress her up, and take her to church on Christmas Eve.

And as I watched my family open their presents on Christmas morning, I wondered whether this is the year she’d be into Christmas. Would she have a Christmas list, understand Santa, and get really excited about her presents? We’ll never know.

This is my reality. This is my Christmas. For each year that we celebrate, there will be a baby who doesn’t turn a year older. She will never sit on Santa’s lap. She will never decorate the tree, and she will never open a present.  Each year, I will recognize that my family will always be incomplete. This year, we miss having our 2 year old. Next year, we'll miss our 3 year old. And so it will go year after year.

I’m guessing that each year, I will find a little more joy in Christmas. But each year will also contain countless reminders of who is missing the whole way through. I recently read something that called it the “undercurrent of sadness” which feels about right. We may be smiling, celebrating, and singing “Joy to the world!” but there is an undercurrent of sadness to all of it. An incomplete family. A full season of thinking about what could be this year, but isn’t.

Tuesday, October 8, 2013

A Crisis of Faith

Holding on to my faith over the past 2 years has been a constant battle for me. When Vivienne died, it forced me to re-evaluate the belief system that I’d been raised with. I had to find a way not to be angry with God. I had to find a way to still believe. I have to believe that I will see my daughter again someday. Some days, that’s the only thought that gets me out of bed and keeps me going.

And then we lost 3 more children. And I fought again to keep my belief that God is good, and I needed to believe.

And then we lost any ability to conceive a child naturally, followed by losing the ability for me to carry a child all together. And I fought again to not blame God. To focus on the idea that eventually, the randomness of the universe would have to turn in our favor. It has been a hard fought battle to keep my faith through all that we’ve been through. And I’m starting to lose the battle.

Over the past 5 months, I have changed jobs (a transition that has been more difficult than I expected), we bought a new house (with issues and expenses that were not disclosed or uncovered during inspection, costing us more money than we anticipated), we still own our previous house (that despite many showings, overwhelmingly positive feedback and a price reduction that is basically giving it away, defies all convention and will not sell), and we continue to pursue surrogacy, despite a failed attempt on our first try (a difficult, time consuming, terrifying and very expensive proposition).

Earlier last week, I hit my breaking point. I was completely overwhelmed by all that we have on our plate. I did not know what to do or where to turn. And so I did something I have not done in a long time. I prayed. As I decided to do this, I heard the sayings people have often said to me. Let go and let God. Give it over to God. And so I did, and I prayed. It was a simple prayer, but delivered in the most desperate tone.

God, I have more than I can handle, and I need Your help.

I let go, and I asked God to have mercy on us. I said this prayer for several days, and yesterday something happened.

My beloved cat, Oliver, who comforted me at the lowest points of my life died. It was completely out of nowhere – he was not sick, showed no signs of being in any pain, and was his normal self when I left for work. Yesterday afternoon, Gordon called me to tell me that he died. We don’t know what happened (our theory is either a stroke, he choked, or some combination of the 2), but it all happened in about 5 minutes. He was gone, and I am shattered.

I told God that I had more than I could handle, and I needed help. And instead, I got more pain. I hadn’t prayed for anything specific – just to have some stress taken off my plate. And instead, I got more. It’s like I can hear Him laughing “you thought you had more than you could handle? Well, how about this.”

At every bad news that we got, I fought against the idea that God was doing this to me, that I was being punished. I told myself that the universe is random, and sometimes, people have to play a bad hand. I told myself that eventually, the randomness of the universe would turn in our favor. But now, I have to admit, that I’m not so sure about that. I’m not so sure anymore that God is kind and loving. I asked for help, and I got the rug pulled out from under me yet again.

People often say to me that God will never give you more than you can handle. What complete and total BS. Do not mistake the fact that I am still surviving what we have been handed over the past 2 years as me handling anything. I feel broken on more days than not. God has given me more than I can handle over and over again. And when I cried uncle and said I could take no more, I got more anyway.

I don’t know how to reconcile this latest loss. I’m losing the will to fight for my faith anymore. I can’t quite figure out what I’m fighting for. In the end. I think all I’m really fighting for is the idea that I’ll see my children in heaven. And that’s what keeps me hanging on to faith. And wrestling with the idea that maybe God is doing all of this to us after all makes me feel like my ultimate punishment will be that I will not get to spend eternity with them. Wouldn’t that be quite the last laugh at my expense? 

This thought of never getting to see my children again cuts me to the core of my soul. It’s the thought that keeps me hanging on, but it’s also the thing that can make me curl up into a ball and cry so hard I can’t breath. The idea that I’ll never see my children again makes me wonder what the point is of anything.

And what am I supposed to do with that thought? Let Go and let God? I’ve seen where that gets me.

Sunday, September 15, 2013

Running Out

When I started thinking about writing this post, the title of this one was “Running out of Options.” But as it started to come together, I realized that I’m running out of so much more than options. I’m running out of time. I’m running out of steam. I’m running out of heart to break. And I’m running out of hope.

We learned in the spring that I’d be unable to carry another child. While it was a big blow to absorb, we did what we’d done so many times before. We pulled ourselves up and tried to figure out what our other options were. We knew how much we wanted a child to raise, and with that as the goal, we went to the next way to get it.

And so we began the process for surrogacy. My simply amazing sister had offered to be our surrogate a while ago, and we were in a position where we needed to take her up on that offer. It’s not an easy, simple, fast, or cheap process. It involved multiple medical tests and clearances for her, the sign off of a psychologist for all of us, and the involvement of 2 separate attorneys drawing up legal contracts to formalize the agreement. It wasn’t easy, but it gave us so much hope that we’d finally get the good news we’d been waiting for.

Friday the 13th was to be that good news day. We’d done the transfer 2 weeks prior and waited. But good news isn’t exactly our thing, and so we received the bad news on Friday. The test was negative. To say that we were devastated again is a complete understatement.

Each time, we’re left to wonder again why this keeps happening to us. God knows we’re trying everything in our power to have another child. We’ve gone well beyond what most people have to do. We’ve saved and spent more money than we care to acknowledge and endured more physical and emotional pain than most people have in a lifetime. And here we are, still with our empty and painfully quiet house.

As we’ve spent the weekend absorbing the bad news and discussing our options, it becomes painfully obvious that we are running out of ways to add to our family. We have to wonder how many more rounds of bad news we can take before our hearts actually stop from being broken 1 too many times. We wonder what lengths we’ll actually need to go to for having another child, or whether it’s just not in the cards for us, and we’re chasing a dream that will never be.

As it stands, none of our options are easy, without significant costs, and none are assuring of a happy outcome. We can try surrogacy again with my sister, but that feels like an incredibly selfish choice. The process was not easy on her, and knowing that I’ve given her a glimpse of my world of going through so much for nothing at the end is a feeling I just can’t shake. We can try surrogacy with an agency, but that costs somewhere in the range of $50,000. We can move to adoption, which will run us somewhere in the neighborhood of $30,000 or more, and if you’ve done any searching on the subject, you’d learn there is no shortage of demand to adopt a baby, and very little supply. There is foster to adopt, which I truly believe is a wonderful idea, but would simply not work for us. The rules of the system are that a member of the biological family has up to 3 years to get their act together and can take a child back. I’ve already lost enough children, I can’t raise a child for 3 years and risk having them taken away. I know enough to say that I would never survive that.

And that’s it. That’s all we have left. Each is expensive, difficult, time consuming, and comes with great risk. But that’s all we have. And you can see how the options are starting to run very thin.

There is a quote that I keep handy that I look at often. “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow.’” I see so many quotes that are along the same lines. Never give up. Stay positive and try again. Keep the faith. But lately, I’ve been forced to ask myself, when is the better choice to stop? To not try again tomorrow. To let go of the hope because it’s never going to happen. Where are the pithy quotes when that is the dilemma?

Let me be clear that I don’t want to give up. I’m not a quitter. But I have to acknowledge that there aren’t many more options for us. And even if we continue with any of the options above, we face the very real possibility that we will never have a child to raise.  At the end of the day, I’m 41, I can’t carry a child, and I’m not made of money. And I’m completely exhausted every minute of every day.

I’m running out of everything. And ultimately, I have only 2 choices. I can stop and try to let go of the most important and desperately wanted dream I’ve ever had. Or I can keep trying until the options are gone, still facing the real possibility that I’ll have to let go of the dream anyway.

Monday, August 19, 2013

The Terrible Two's

Today is Vivienne’s 2nd 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 2nd 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 5th 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.

Wednesday, May 29, 2013

Why I Write, and Why I Stop

When I started writing this blog about a year and a half ago, it was out of a moment of desperation. I felt incredibly isolated and misunderstood, and I was desperate to make people understand, even if just a little bit. Over time, the topics and words have flowed pretty easily. Sometimes, it takes some time and effort to describe something that I think is impossible to explain, but for the most part, I sit at the computer and furiously type because the words and feelings just come.

Over the past couple of weeks, that hasn’t been the case. I haven’t been as eager to write, and I don’t even know what I would want to write about most days. I thought maybe it was because I’d gotten it all out, which I know isn’t true. Or maybe I’m at a stage in my grief journey where the writing isn’t as healing as it used to be. Nothing I came up with felt quite right for what I was feeling.

And then I started to think about why I was writing. These desperate emotions of wanting to be understood have caused me to be pretty vulnerable. I bare my soul in this blog – the raw, ugly parts of loss and grief. Every time I write, I put my heart on the table to be examined and evaluated by anyone who reads about it. I’m not sure what it is that has made me comfortable with being this vulnerable in front of so many people, including a lot of strangers. It certainly was not my style in my Before Vivienne days.

For the first few months that I wrote the blog, I always pushed “publish” with a bit of hesitation. Each time I put my thoughts, heart, and soul out there, I wondered whether that would be the point when someone would tell me enough was enough. I waited for the judgment that what I was feeling was wrong, that it was time to move on, or to say something to minimize what I was feeling. I was always surprised that the judgment never came. I have no doubt that it was there, but at least the people who thought it were kind enough to keep it to themselves.

I don’t have any regrets about putting myself out there in this blog. I know that sharing my experience has helped some other people feel more understood and less alone. And I know that I have helped a few friends have a better understanding of how to help other loss parents in their lives. And because I have shared so openly about what we’re going through, I have received support from friends I haven’t spoken to in years.

But in being so vulnerable and sharing so much, I have to admit that it is starting to make me feel weak. I generally write about the struggle here, and I always wonder if the people who read it wonder how I get out of bed in the morning (sometimes, I wonder that too). Lately, I’ve been struggling with how this blog must portray my life vs. what really is my life. I want to be the person who works through their grief and loss and comes out stronger and more appreciative of life. When I write and read what I have written, I am not that person.

And I’m starting to feel that the blog is having the opposite effect than what was intended. I started writing out of a desperate need to feel understood. I continued to write because it was healing for me, and I really felt like I was helping people understand what it’s like to walk in my shoes. But lately, I feel the opposite effect. I find that when I write these days, I end up feeling even more misunderstood and isolated. Maybe I can’t get the words out right anymore. Maybe I’ve been through so much over the past 2 years that it has become impossible to make people understand. I don't think it's possible to make people understand what it's like to lose a child, followed by more loss, and ultimately being told you can't carry more children. I don’t know why, but I know that the blog is causing feelings that I don’t enjoy and I don’t want to feel anymore.

And so I think it’s time for me to step away from the blog for a while. I need to focus on the person that I want to become, not the person who I have been. Maybe I’ll come back to it, and maybe I’ll find other outlets that help me work through this grief journey I’ll be on for the rest of my life. I’m trying not to hold myself to what I think tomorrow should look like today. When I want to write, I’ll write. And if it doesn’t feel right, then I won’t.

You’ve all been so generous to read this blog and send me many encouraging notes and comments. I’ve felt a tremendous amount of support in writing about such a painful topic, and I’m very grateful for all of that support. As I’ve battled with this idea of not writing anymore, it only felt right to be honest and share where I am in my journey today.

Thanks for reading and for continuing to support us through our journey.

Tuesday, May 21, 2013

What If?

In the weeks and months after Vivienne died, it was easy for me to become consumed with all of the what-if’s that surrounded her birth and death. What if I had gotten to the doctor or hospital sooner. What if I had screamed and raised holy hell insisting on being examined sooner. What if they had been able to hold off delivery for just a few weeks. All of these what-if’s, wondering whether doing one thing differently would have led to a better outcome.

I still have those moments where the what-if’s overcome me and can’t be stopped. I try to tell myself that we did the best that we could with the information we had at the time. We never knew that something like this could happen, so how could we be responsible for knowing how to navigate it? But that doesn’t mean that we won’t ask the questions. We will always wonder, and we will always regret.

The what-if’s are getting the best of me again. Our latest news that I won’t be able to carry another child has brought them flooding back. With hindsight, I can see what an absolute miracle Vivienne was for us. If any one of those what-if’s had worked out differently, our lives would be so very different today.

For months now, I have thought about what our life would be like if I could get a do-over on just one of those what-if’s. Wondering where we’d be today if she had lived. It’s a bit of mental torture, but one that can’t really be helped. Would we still live in our house? (we had planned to move to another neighborhood) Would we be at the jobs we are now? (Gordon changed jobs after she died. Mine stayed the same) Would we be trying for another child?

Now that we’ve survived bad news after bad news in our journey to have another child, I also have to think through everything else that was taken from us with Vivienne. If any of those what-if’s had gone differently, I wouldn’t have had the D&C’s after she was born. I wouldn’t have developed the scar tissue. My lining wouldn’t be permanently damaged. And I’d be able to carry another child. When we lost Vivienne, we felt like we’d lost everything. As it turns out, we lost much more than we ever could have expected.

It took me a while, but I stopped searching for a reason for Vivienne’s death some time ago. But I do still wonder why all of this has happened to us – why we continue to have more barriers put in our way, and why we’re on the receiving end of seemingly endless bad news. I know there are lots of people who want there to be a reason all of this is happening – trust me, I do too. But I can’t find one that feels right. Many of the loss Moms that I know who have gone on to have their rainbow child tell me that they can now see that the child they lost made the ultimate sacrifice so that the children they had after them could be here. I’ve held on to that sentiment – feeling in my heart that this might be the reason that felt right to me someday.

It’s almost 2 years later, and I’m still trying to hold on to that idea. It’s the only “reason” I think I’ll ever be able to live with. And I still hope that will be the case. Until then, though, I wonder what if, and if only. 

Thursday, May 9, 2013

Mother's Day

Mother’s Day is a difficult holiday for me, as you would expect. Losing a child makes the holiday complicated enough, but adding infertility to the equation makes it an incredibly painful day. I recognize that the rest of the world sees me in this grey area – I’m a mother, and yet I’m not. Whenever I say that to people, they immediately disagree with me. “You ARE a mother!” they say. And it’s true, I am. But I also know that in my everyday life, people do not think of me as a mother.

I get it. I really do. There are many maternal experiences that I just don’t relate to because I haven’t lived them. I don’t know what it’s like to be so tired because of a fussy, colicky baby who won’t sleep. I don’t know what it’s like to manage the terrible twos. I never have to run out of work to pick the kids up from daycare. I don’t watch Baby Einstein or The Wiggles (or whatever is popular with kids these days) because there are no children in my house. And I’ve never had anyone call me Mommy. I know that I live in this in between world where I know I’m a mother and the rest of the world sees me as one only when prompted, but I don’t have any of the “mother experiences” that other mothers do.

Just recently, I had a conversation with someone who asked me the dreaded “do you have children?” question. I talked about Vivienne, as I always do. They asked if we planned to have more children. I said we wanted to, but it was proving to be difficult. And their response was “I hope it works out. You’ll be a great mother.” Not you ARE a great mother. You WILL be. Because parenting a child who isn’t here doesn’t count in the same way.

That was an experience that really summed up how I feel about Mother’s Day. I talk about my daughter freely because she was, is, and will always be my daughter, whether she’s here or not. People will recognize her, offer their sympathies, but then go on to say that I’ll be a great mother some day. I live in between the definitions, and so a holiday that doesn’t include much grey is a difficult one to work with.

Mother’s Day actually wasn’t supposed to be like this at all. You’ve probably never researched the history of the holiday, assuming, like I did, that it was invented by Hallmark or American Greetings. In fact, it is credited to a woman who wanted to honor her own mother, who had lost 8 of her 12 children. But you’d never know that by how it is celebrated now. Today, we have cards to honor the mothers of children here, but not the mothers who only hold their children in their hearts or the mothers who long to parent a child that their bodies won’t let them have.

And so I’m left unsure of how to manage through this holiday. When they ask the Moms to stand and be recognized at church, it doesn’t feel right to stand. But sitting doesn’t feel right either. And so I stay home. My husband and family struggle to find an appropriate card or gift that recognizes me as a mother, but doesn’t imply that our children are here. I know it’s a difficult task. I can’t really leave my house on that day because of everyone enjoying their Mother’s Day with their children, another painful reminder of things we miss with Vivienne. And so I put my head down and power through, like I do with most holidays. Except that this is a holiday that smacks me in the face with the inconsistency in how I see myself and how the world sees me.

Sunday, May 5, 2013

I Am Still Standing

Today is International Bereaved Mother’s Day . It’s not a Hallmark holiday, and you won’t see a card section for it at your local store. It was started by a woman in Australia who lost her son. It’s the Sunday before the standard Mother’s Day every year, and generally no one has ever heard of it until they’ve lost a child. I know that’s true for me.

For me, it’s a day to reflect. I think about all that we have lost, the challenges of a bereaved mother in parenting a child who needs nothing from her, and the knowledge that the rest of the world sees me very differently than I see myself. I think about all that my children have given me – an appreciation for the small things we take for granted, a better understanding of the fragility of life, a stronger marriage, perspective on what really matters, the knowledge of who will be there when life isn’t pretty, and the strength to get up and face every day.

This day is also about breaking the silence. For the life of me, I will never understand the taboo around miscarriage, neonatal loss, and grief. They are topics that make people uncomfortable, and people tend to shy away from them. I’ve watched it first hand – that steady backward step away from me as I talk about my children or my grief, the stammering in reply when I say I have a daughter who died, the flow of clich├ęs on how to view my situation more positively (“there’s a reason this is happening” “just believe” – I could go on for hours).

There is no silence on this topic in my world. I know that my talking and writing about loss, infertility, and grief is too public for some people in my life. These are supposed to be “private matters”, handled and discussed as a family. Why is that? What good comes from keeping something so life altering and defining private? That only serves to make bereaved mothers feel even more isolated and different from the rest of society. If my daughter were alive and well, it would be perfectly acceptable, and even encouraged, for me to post pictures of her and talk endlessly about her. But because she died, I am supposed to internalize those maternal feelings, plaster a smile on my face, and go about my life as though nothing has changed.

Not talking about my losses and grief is simply not an option for me. I feel a responsibility to break the silence and tell people what it’s like to lose a child and live with infertility. I am responsible to my daughter, whose life and death have impacted me in ways I haven’t even figured out yet. I am responsible to the loss community to do what I can to lift the taboo and help people not feel so alone, so disconnected, so misunderstood, and so abnormal. And I’m responsible to myself to be who I am, feel what I feel, and not be worried about whether it makes other people uncomfortable.

I am the face of neonatal loss. I am the face of miscarriage. I am the face of infertility. I am the face of a mother who will grieve for her children for the rest of her life. How, I'm not so sure, but I am still standing. And I’m breaking the silence.

Wednesday, May 1, 2013

My Favorite Days

Since we lost Vivienne, I have to say that there aren’t a lot of times of the year that I love. I don’t look forward to the holidays like I used to.  Her birthday is a day to celebrate her, but the days before her birthday are really hard days. And while there are only a few times of the year that I dread, there aren’t a lot of times of the year that I look forward to.

Right now is pretty much that one time. This is a special time for me and the path I walk as the Mom to an angel. In my everyday life, I don’t get to be a Mom in any traditional sense. And it’s difficult to find ways to parent a child who needs nothing from you. This time right now brings together the special ways I can be a parent to my daughter. And I have already come to look forward to this time.

On Saturday, I went to my second Mother’s Day tea. Let’s be honest, Mother’s Day is not a holiday made for me and my situation. Losing a child makes the holiday complicated enough, but adding infertility to the equation makes it an incredibly painful day. Each year, a Mother’s Day tea is held at a local bereavement center we’ve attended for counseling. The tea is to recognize the mothers of children who are carried only in their hearts and won’t be there to help celebrate the day. We talk, we cry, we make something to remember our children. It’s becoming one of my favorite events, because it’s a Mother’s Day recognition that is made for me and my situation.

On Sunday, we had our second March for Babies walk. This has become a cause that Gordon and I are very passionate about. Vivienne died because she was premature. There was nothing else wrong with her. So an organization that researches and fights for premature babies is right up our alley. In getting involved with and fundraising for the March of Dimes, our daughter has purpose. We can do something good in her name and help other families not have to experience what we have. This year, we had 25 people on our team walking as part of Vivienne’s Volunteers. They all gave and raised money in Vivienne’s memory and then walked with us through rain and wind. Our team raised a phenomenal $6,230! Fundraising and doing the walk is all about Vivienne. We remember her all of the time, and we love to see when other people do too.

And lastly is our garden. Last spring, we planted a garden for Vivienne. We took great care in selecting the right plants and flowers for the space, and Gordon spent many days digging, tilling up the dirt, and getting it ready for planting. We are not green thumb people, and so we weren’t sure whether we’d be able to make the garden prosper, but we sure tried. All last summer, when I wanted to be with Vivienne, I went to her garden. It was the most weed free, well watered and cared for space in our yard. The flowers and plants didn’t get very far last year, as they developed their root system, and we weren’t sure how they would come back this year.

A few weeks ago, Vivienne’s garden started to come back. Despite our lack of skills, it looks like every plant is coming back this year (some better than others, but so far, we haven’t lost any), and some are blooming already. The plants survived, are on their way back, and we even have flowers already. I get that space back that is full of life and beauty to honor my daughter. I get to weed and care for her garden again, which is as close as I can get to caring for her. It’s one of my favorite spaces, and this is the time of year when I get that space back.

And so I’m trying to focus right now on being in my favorite time of year. I know it doesn’t last forever, so I’m doing my very best to soak it in and filling up the reserves for the down times of the year. If you need me, I’ll be in the garden.

Thursday, April 25, 2013

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.”

Friday, April 19, 2013

A Window Closes Too

This post should probably come with a disclaimer. This is not a happy, hopeful post. This is the harsh reality that is my life.

We’ve been keeping a secret from pretty much everyone we know. Over the past few weeks, I have been preparing for a frozen embryo transfer. We didn’t tell many people because it felt private. I have taken countless pills, both orally and vaginally (sorry if that’s TMI – welcome to my world), been on a high iron and magnesium diet, and gone to acupuncture twice a week. All of this was in the hopes that it would thicken my endometrial lining, and we could move on to an embryo transfer. We’ve had mixed results throughout, but got a glimmer of hope earlier this week that maybe, just maybe, we could get there.

We found out today that this isn’t the case. My lining is pretty damaged from the D&C’s I had after Vivienne was born, and despite medications, diet, and acupuncture, it will likely never get to where it needs to be to sustain a pregnancy. While there are still some other options we could try, the doctor told us not to get our hopes up.

And so a month ago, I closed the door on ever getting pregnant on my own. Today, I attempt to close the door on ever carrying another child.

It’s probably for the best, in some way. My body has been nothing but a deathtrap for my children. It has failed me and them more times than I can count. To continue to try for a miracle feels incredibly selfish, like I would just be inviting more loss and heartache. To continue to try would only be for my own self-worth, so that I wouldn’t continue to feel like a failure. I can’t justify putting one of our precious embryos in an unviable situation just so I can feel like I tried.

I have never tried harder for anything in my life. I have endured countless procedures, 3 surgeries, pills that could fill your medicine cabinet, and shots and needles that fill 3 hazards containers. All of this in the span of 16 months. And ultimately, all for nothing. All that I have to show for it are 3 more children in heaven, a few extra pounds, a lighter bank account, and a heart that has been broken over and over and over again.

We will figure out a way forward from here. But for now, I am just exhausted, confused, frustrated, angry, disillusioned, hopeless, and most of all, unbelievably sad. I don’t exactly know how to accept that you can work so hard for something you want so desperately and come up empty handed.

Monday, April 8, 2013

What's in a Name?

There is an online magazine that I read called Still Standing. It’s a place where I cry, nod my head, and just generally feel understood. All of the writing is about loss and infertility – 2 topics that can make me feel so out of place in my everyday life, but in this magazine, I feel at home. Each month, they introduce a topic for a blog round up, and this month's topic is about how you chose your child’s name. It's a story that people would ask about if she had lived. But since she’s gone, we generally receive “what a beautiful name” spoken softly, like you would at a funeral.

We started discussing baby names at the end of the first trimester. We felt like we’d be tempting fate to make plans any earlier. Boys names were very difficult for us to decide on, but we had a few names going for girls. Vivienne was always at the top of the list. I’ve known for years that if I had a girl, this is the name I would want. I could only hope that Gordon felt the same. When we started discussing names, and I told him “Vivienne,” he was immediately a fan.

And so the days passed, and at about 16-17 weeks, we found out we were expecting a girl. Vivienne officially became the front runner, although I would not officially declare it as her name. I felt like I needed to see her, know her, and decide that yes, she’s a Vivienne after all. We started to discuss middle names, but couldn’t quite decide on one. We were only halfway there. We had plenty of time. Or so we thought.

When Vivienne was born at 22 weeks and 1 day, we held her, and through tears, Gordon said “she’s a Vivienne.” The hospital asked us if we wanted to name her. It felt like a pivotal moment where we recognized that our daughter was a person and that she lived. Of course we wanted to name her. We gave her the name Vivienne, and she was baptized.

When we left the hospital without our baby girl, we left her without a middle name. As Gordon was out picking up my prescriptions, he called me from the pharmacy. He wanted to give her a middle name, and it came to him while he was waiting. She would be Vivienne Grace. When he came home, we called the hospital to amend the paperwork and make sure that our daughter had her full name, including the middle name that she sent to her Dad when he needed some comfort. 

We talk about Vivienne all of the time and say her name like it’s second nature to us. We even find ourselves using the nickname we thought she’d have – Vivi – as we talk about her. It comes with some sadness, as we imagine those instances where we’d use a nickname. Those memories that we’ll never get.

Weeks after her death, as I packed up my maternity clothes and pregnancy books, I decided to look up the name Vivienne in the name book I had. The definition  - full of life. It felt like the cruelest kick to the gut. For a while after her death, I had a hard time with this inconsistency. My daughter, whose name meant full of life, was dead. I’ve now come to accept that my daughter changed my life – made me focus on what matters, and to make a difference. Her life is my life. It’s up to me to make sure her name being "full of life" is expressed through me.

Thursday, March 28, 2013

Letting Go

I’m struggling with this concept of “letting go” these days. Honestly, when I think about it, I have to admit that I don’t even know what it means. What does it really mean to “let go”? Does it mean forgetting? Does it mean no more pain or tears? Does it mean you stop talking about it? If I don’t know what it means to let go, how am I supposed to do it?

This topic came to mind during a recent appointment. I recently started acupuncture treatments as a method for treating infertility. As we reviewed my health history, the acupuncturist noted that I’d filled out on my form that I don’t sleep well, and she asked about it. I told her that since my daughter died, I can fall asleep easily, but I wake up multiple times during the night – usually every couple of hours. She told me that she had a meditation technique for me to try to aid in my sleeping. She asked that as I lay down to fall asleep, I should imagine a rope connected to my body, with the other end of the rope connected to my daughter. And then I should imagine the rope getting longer and longer, with my daughter getting further and further away. I knew what she was going for – it was her way of telling me to let go. So I put on my fake smile (I’m exceptionally good at a fake smile) and lied to her that I’d try it. 

I can’t imagine a way that this meditation technique would help me sleep. I really think it would create new problems in that I now wouldn’t be able to fall asleep. But I understood what was behind it – I have to let go in order to solve my sleeping problem. Here’s the problem – letting go like this solves nothing for me. I never want to let go of my daughter, and I never will. I continue to learn every day how to live without her. I don’t live in denial that she’s gone, but she is and will always be my daughter, and whether she’s here or not, I’ll love her until my last breath and beyond. It’s simply not possible to let that go.

Shortly after Vivienne died, someone told me about some Mexican belief system (I have no idea if it’s true or not, but the story of how it was told to me is). There is apparently this belief that the tears of the grieving act as a weight on the person who was lost. When we stop crying, it allows them to move on. The story was told to me as a means to be OK with not crying for Vivienne every day – that it was a good thing in that I was allowing her to move on.

I have to say that I hate this belief. If you think you have mother’s guilt with your living children, imagine feeling that the grief and tears that you can’t control are keeping your child from moving on to what comes after this life. Not only do you feel a pain stronger than I can describe, but you also get to feel guilty for carrying that pain because you aren’t letting your child go and move on. Just imagine how that feels.

I don’t necessarily believe that it’s true – that I’m somehow holding Vivienne back. But it is something that I wonder about, and I guess I’d have to say that I worry about too. I would never want to hold Vivienne back, and to think that my grief and missing her would hurt her in any way. . .well, it’s just a thought that is too painful for me to even process.

So what does it mean to let go? I’ll never stop loving her or missing her. I will always talk about her, and there will always be days that I cry over losing her. For the rest of my life, I will do things to honor her memory by helping other people. If eliminating any of those are necessary for “letting go” than I have to say that it’s never going to happen. It's just not possible.