The Terrible Two's

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

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

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

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

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

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

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

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

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

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.

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. 

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.

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 clichés 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.

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.

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.”