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.”

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.

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.