Monday, October 29, 2012

Weak and Strong

It has been 14 months since Vivienne died. As I look at that number, and think about where I am, I am struck by how that number seems like such a long and short period of time, all at once. In one way, it feels like forever since I knew what it was like to carry and hold my daughter. And in another way, I wonder how it’s possible for a life to change so much in only 14 months. Time stands still and soldiers on all at once.

Over these past 14 months, I have had many people tell me how strong I am. I struggle with that label a lot. Partly, it's because I haven't had any choice about this strength. It was never an option to crawl into a ball and completely withdraw from the world. Trust me, on many occasions, I wanted to, and often, I still do. But, the world keeps on turning whether I want it to or not, and so I have been forced to figure out how to jump back onto this spinning world.

I also know that I’m not doing anything particularly special here. It’s been largely about survival for me, not strength, and the things I do and choices I make are only because that is what I need to do to work my way through this. It has nothing to do with strength – it’s all about necessity. And I know that if any of you were faced with this tragedy, you would do the same (and for many of you reading this, you have done the same).  I know that no one likes to imagine losing their child. A friend once told me that she tries to think about what it’s like for me, and that her brain just won’t let her go there. It is impossible to imagine, but I feel confident in saying that any of you would survive it – you would figure out your own necessities and how to navigate it. It isn’t strength, it’s just surviving.

Recently, someone said the opposite to me. They told me that didn’t know what to say to me because I’m fragile, and they didn’t want to say or do anything that would add to the hurt. Initially, I felt a little defensive at the label of “fragile.” But, as I thought about it, it is appropriate. It is an understatement to say that I’ve been through a lot over the past 14 months, and it would be expected for one to come out of that emotionally frail. No one ever likes to think of themselves as weak, but I would have to say that it’s how I feel most of the time.

And so, as I think about this, I have realized that it is possible to be completely weak and broken, while also being completely strong and tough at the same time. There are certainly times where I feel more strong than weak, and others where I feel more weak than strong, but as I sit writing this, I feel both equally. I feel emotionally battered and weathered, but I also know that tomorrow, I will wake up, get dressed, and go about my day. I will see the baby announcements, ultrasound pictures, and baby photos on Facebook and feel the wind knocked out of me again. But I will still keep going. Both fragile and strong – another part of my new normal.

Tuesday, October 16, 2012

What October 15th Means to Me

Yesterday was Pregnancy and Infant Loss Awareness Day – a day to remember the children we’ve lost. As the day wore on, I have to admit I was a bit overwhelmed by what I saw on Facebook. In the morning, it was all women who had experienced the loss of a child talking about it. By the end of the day, so many of my friends had joined in. Remembering and honoring the children we’ve lost. It was really touching to see how far the message reached.

It may seem strange to some to have a day of remembrance. For those of us who have experienced the tragic loss of a child, remembering happens all of the time. There isn’t a day, or even a moment, that passes that we don’t think about how much we miss them and love them.

We always fear, though, that others will forget our children. When you have a living child, it’s something that doesn’t even cross your mind because that child is there – people ask how they are, what they are up to, what their new milestones are. When you lose a child, questions about them pass after about a month. And eventually, fewer and fewer people will even say their names. There are no new milestones, no birthdays, no school photos, and no funny stories. For us, it is a day for others to join in remembering and to remind us that our children are not forgotten – they have touched people’s lives and made a difference. It is value for loss parents that is beyond measure.

But this is also a day to break the silence. For reasons that I cannot understand, talking about the children we’ve lost is a taboo subject in most arenas. Apparently, it’s OK for me to talk about my deceased grandparents and father, but when it comes to talking about my deceased children, I’m supposed to keep that private.

Why can’t we talk about our children? I think it’s mostly because it makes people uncomfortable – the thought of a baby dying isn’t something people want to think about or discuss. So, if we just pretend like it never happens, we can live in a more idyllic world where logic prevails and babies don’t die. In this world, parents suffer in silence because people won’t acknowledge the gravity of their loss and how life-changing it is. And while I’d rather live in a world where I believe babies can’t die, I can’t live in one where I can’t talk about my children because it makes someone uncomfortable.

Another reason we can’t talk about our children – it makes people think that we can’t “let go” or “move on,” as if that is even possible. Somehow, by saying our children’s names and remembering them, it makes people judge. Even though these people have never experienced this loss, somehow they get an opinion on the proper amount of time to grieve, and the right way to live your life after you’ve lost a child. I’ve heard this saying often from other loss Moms – you don’t get over it, you just get through it. There is no getting over losing a child – it simply never happens. You do get through the grief, the pain, and the days without them, but the love and longing is always there. They are our children, whether they are here or not.

And so yesterday was a day to remember them and to say their names. We didn’t have to worry about judgment or discomfort from others – we had this official day to back us up. I was happy to see so many people join in and support these families and remember their children. My hope is that this acknowledgement can spill over into other days. We remember our children every day of the year. Every so often, let a loss parent know that you do too. I guarantee that you will make their day.

Friday, October 12, 2012

Accepting Infertility

I’ve been pretty hard on myself lately for where I am in this grief journey. Still harboring feelings of resentment, anger, bitterness, and jealousy – all things I feel like I should be past by now. More recently, I’m trying to cut myself some slack on these feelings because I’m realizing they aren’t just about my grief journey. They are about my grief and infertility journey.
What I’m recognizing is that I haven’t really accepted this “dealing with infertility” part of my life. While I’ve been seeing a Reproductive Endocrinologist (aka Fertility Specialist) for nearly 2 years now, I never really thought of myself as having infertility. I think it’s mostly because it had been easier for me to get pregnant than most women I know with infertility. We needed a little nudge, and that seemed to be enough. Each of our pregnancies, all 4, have been achieved with clomid and IUI (intrauterine insemination). Each time, we got pregnant on the 1st try. Our infertility issues were minor by comparison to others, so I never really accepted the full diagnosis. Now, as we find new issue after new issue, I have to accept that I have more significant infertility issues than we thought.
It started last October, when we received a diagnosis of Asherman’s Syndrome. Asherman’s is scarring and adhesions in the uterus which can happen after a trauma to the uterus, like a D&C (I had 2 after Vivienne’s birth due to retained placenta). When we got our diagnosis, we dove into the research and found that it can be tricky to treat and there are about 6 doctors in the country who specialize in it. We flew to Boston to see one of them, a renowned doctor for Asherman’s who people fly from all over the world to see. He told us that we were mis-diagnosed and happily sent us on our way. We thought we had received a miracle, and so this idea of “infertility” was pushed further back into my head.
And then came our subsequent 3 pregnancies. Baby 2 in January, a chemical pregnancy which I miscarried 2 days after finding out I was pregnant. Baby 3 in February, an ectopic pregnancy which I received chemotherapy drugs to force a miscarriage so that it wouldn’t endanger my life. And Baby 4 in July, another ectopic pregnancy which required surgery to resolve. This led us to our new diagnosis of “tubal issues” and IVF (in vitro fertilization) as our option for having a successful pregnancy. It takes skill to hear “IVF” and still believe you don’t have significant infertility issues. I am that skilled. In my mind, I could rationalize that we just needed an extra push to put the baby right where it needed to be, and we’d be fine.
Then came our cancelled IVF cycle. The cycle was cancelled for several reasons, but our RE was concerned with my lining and thought he saw scar tissue on my ultrasound. So, off we went for yet another test to find out what we’re dealing with.
And then came our re-diagnosis of Asherman’s Syndrome. It turns out you can do all of the research, find the right doctor who specializes in what you need, and it still doesn’t matter. So here we are a year later, facing the same issue we faced a year ago because of a supposed specialist not doing his job. We are both incredibly angry with this doctor for what he’s put us through over the last year. At the same time, though, we have to deal with the medical issue we are faced with. It will mean another surgery for me, and some heavy duty monitoring to make sure the scar tissue doesn’t come back. And we’ll still have our tubal issues to deal with and IVF as our next step.
And so after all of that, I have to acknowledge that I have infertility. And after all of that, I have to accept that resentment, anger, bitterness, and jealousy are perfectly normal emotions to feel. Having to deal with losing my daughter feels like enough for 1 lifetime. Losing 4 children feels like enough for 4 lifetimes. But I get the dubious honor of dealing with that PLUS the difficult path of infertility. And so I’m going to stop kicking myself for having these feelings. After what we’ve been through, I’d call them pretty acceptable and even normal.

Monday, October 8, 2012

Walking and Remembering

October is Pregnancy and Infant Loss Awareness month. I know that it’s a topic that people don’t like to think about – we like to think that medical advances have put us past a time where babies die. As much as we wish that to be true, it isn’t the case.  One in four women will experience the loss of a child through miscarriage, ectopic pregnancy, premature births, illness, and stillbirth. As you all know, I am that 1 in 4. Four times over.

October is filled with many events to honor and remember our children. Yesterday, Gordon and I were honored to organize and host such an event. The Walk to Remember has happened in Cleveland for several years, but this year, the family who sponsored and hosted it in the past had moved away. Gordon and I always look for ways to honor Vivienne by remembering her and helping others, and this seemed like an opportunity she was surely sending our way.

Yesterday, we honored 79 babies, represented in the hearts above. Grey skies and rain could not keep us from a day to remember our children. We read each baby’s name, knowing that behind each name was a child who changed a family and a community forever. I know that I am forever changed by being Vivienne’s Mom, and by being Mom to her 3 siblings. I’m also forever changed by reading and writing each of those 79 names and in knowing so many of their parents. It was an emotionally powerful day to gather with so many who understand the journey that comes with losing a child and to think of all of those children we will not get to know in this lifetime.

Last night, as I thought back on the day, I was struck by all of the emotions I was feeling. I thought about how different this gathering was from most social gatherings I go to these days. Generally, I feel awkward and uncomfortable at most social gatherings. Much of it has to do with being surrounded by pregnancy, babies, and small children, and with me being unsure of what to say to people.

But yesterday was different. I was still surrounded by pregnancy, babies, and small children, but it wasn’t uncomfortable for me. It wasn’t until late in the day that I realized it was because at this event, I was a Mom. Let’s be honest, most places I go, I’m the sad person that everyone wants to make sure is doing OK. But, because I don’t have a living child, most people do not think of me as a Mom. At an event to honor my children, and being with other Moms who understand, I am a Mom. And it’s amazing how much that washes my discomfort away.

I’ve also had a hard time reconciling why we stepped up to host this event. I do this for Vivienne and my other children, there is no doubt about that. But I have to think about whether that is really true, because let’s be honest – I can’t actually do anything for Vivienne or my children. They don't need anything from me. Hosting this walk doesn’t do anything for them – it does something for me. I desperately search for ways to parent my children, even though there really is no way that I can. In the end, the walk helps me more than my children. But I do get some solace that it was an event that helped others. And that is definitely a way that I can honor my children.

Next up in October remembrance month is Monday, October 15. At 7 pm, we ask that you light a candle for all of the babies gone too soon. Load your photo onto Facebook and tag any loss parents that you know. You can make their Facebook wall and newsfeed a ray of light for these parents who will grieve for their children for the rest of their lives. For one night, we see the light of our children played back to us by others. We see people remembering them and recognizing the impact they had on our lives, and that is an amazing gift for any Mom.

Monday, October 1, 2012

Grieving the Loss of "Normal"

I know that I write a lot on this blog about “normal.” It must seem strange because I know that normal doesn’t actually exist. Most of the people that I look at and think they have a normal family and a normal life probably don’t feel the same about their own lives. But I think we also have to admit that there are a lot of families out there whose lives fall much closer to normal than mine. I don’t think it’s possible to feel further from normal than I do right now.

It’s hard for me to be around other people’s normal. I see them playing with their kids, chasing them around, taking family pictures, and it just reminds me how far my life is from that normal. I find myself wishing that things had turned out differently, and I could be a part of that normal crowd. Instead, I’m the person standing there uncomfortable and trying not to cry, for seemingly no reason.

I thought about this a lot yesterday. We were at a charity walk/run for some family friends. We were happy to be there to support them and their son. It was a nice morning with friends. It wasn’t until later in the day that I realized how affected I was by my morning. And it became a chain reaction as I dug deeper to understand what was really bothering me.

At the surface, it’s just hard for me to be around happy family times. I wish it wasn’t like that, because it makes me feel like a pretty selfish person. But it’s no secret that Gordon and I are fighting a very long and very difficult battle to try to get that happy family. It’s not a fight we have with each other, but with a universe that seems hell bent on making this as difficult as possible, and even potentially impossible. It is extremely difficult to be around something that you want so desperately, but is always out of reach.

So, that starts the sadness, and some guilt that I can’t just be happy for my friends who have something that I know is so precious. Then comes the wishing. I wish our lives could be normal like that. I wish that things went the way they are supposed to, and we could enjoy other’s happy family time because we knew it ourselves. Wishing for chasing kids around, comforting a fussy child, and taking family pictures that were complete with our whole family. It’s another layer of sadness when you realize that this can never be for our family. No matter what our future holds, we’ll never have that kind of normal.

And then the real sadness and guilt come. Because in wishing for this normal, it feels like I am wishing Vivienne away. In order for me to wish for that normal, it feels like I have to wish that Vivienne never happened. I understand that this isn’t actually the case – I can just wish that she never died (a lot of good that does me), but it feels more like I would need to deny her to have this type of normalcy that I wish for. There are no words that can describe the emotion I feel when I think about this. Once I had this realization yesterday, I spent the rest of the day just telling myself to breathe, because that alone felt impossible to me.

In the end, I know that I can’t change where we are. And I would never, ever wish Vivienne away. So I have to accept that this “normal” that other people get will never be for my family. And that becomes yet another loss to grieve.