Guilty as Self-Charged

The self-talk that comes along with pregnancy after loss takes me down many dark avenues. Wait, who am I kidding? The self-talk that comes along with life after loss has messed with me immensely. Within the confines of my own mind, I’m the doubter, the fighter, the accused, the dreamer, the fraud, the pleader, the failure, and the cheerleader to name a few. I had talked previously about the external guilt I feel along with this pregnancy, but on some levels, that has nothing on the internal guilt.

This internal guilt has lived within me from my first loss in May 2008. It’s the “I know I don’t have control over what’s happening, but could I have done something differently or better to save my babies?” thoughts that replay in my mind. Thoughts that got louder with each loss. That same guilt plays into the sense that while I realize that I did nothing wrong, my body still “failed” me. As a woman, I’m supposed to be able to do this. But I know “supposed to’s” aren’t reality.

There’s another level of guilt that has been building within me, especially lately. Or maybe it is more regret: not taking pictures with Baby K, Sarah and Benjamin, and not yet looking at the pictures that were taken of Sarah and Benjamin in the hospital. It’s hard to believe that after everything we’ve gone through, I didn’t know about organizations like Now I Lay Me Down to Sleep. That I didn’t think to ask that we capture the moment, as painful as it had been, to have a physical reminder of us as a family, and their sweet faces, rather than desperately hoping to be able to hang onto the mental photos. Maybe the nurses asked us. But then again, I think it comes down to your mindset at the time.

First of all, there’s the shock. Then add to that pain and anger, and sheer disbelief. I remember needing to spend time with each of them, holding them, apologizing, kissing them, telling each how much we loved, and will always love them, and apologizing some more. I remember not knowing how long we should spend, and feeling like I should hand them off sooner than later. I remember my biggest fear at the time, that they were just going to be placed, no dumped, in a casket without care. And I regret not asking to bathe them—a ritual of honor within the Jewish faith, and a final act of physical love I could’ve done as a parent. But then again, it comes down to your mindset at the time, right?

I feel guilt for not going to the cemetery. Or for not yet having a headstone for Sarah and Benjamin. And at the same time, I realize that I carry each of them with me each day. That for Double A and me, we don’t need to go someplace to remember, or honor their memory. Yet that guilt still resides in my mind, and weighs heavy in my heart.

My guilt is fluid. Becoming pregnant again after so many losses has brought it to a whole other level. It’s the guilt of seemingly being able to carry this baby when I wasn’t able to hang onto the others. I once again feel like I’ve let them down. As I’ve mentioned before, while I’m completely grateful, it is hard not to think why now? Before, the thought was that my body just was not able to do so, but now…who knows. I’ve spent so many years looking for an answer, and now I’m afraid to ask the question.

I find that with each passing day, and each feeling of this Little Guy move, I wonder what it would have felt like and been like with the others. People ask me if I feel different this time around. And the truth is yes, because I never got to feel any of this previously. It’s exciting and amazing, and heartbreakingly sad. It is a bittersweet feeling where I try to embrace each movement, and focus on my gratitude for getting this experience. I guess on some levels I’m trying to make up for all of the experiences I previously missed out on, both for me and our babies. It’s like I want them to know that I would have embraced this experience with them as well.

Just like I’ve learned to live day-by-day with the grief of losing children, I’ve learned—and am continuing to learn—to live with the varying degrees of guilt. I know there is no making up for the losses. And that I can’t go back and change things. That said, I’m trying hard to refocus that guilt into gratitude to make the most of our life, and our family, where it is right now.

Do you still carry guilt and/or regrets? How have you dealt with that?

Am I a Fraud?

As I walk around now, especially when I’m with Baby Boy, I am hypersensitive to people looking at me. They often look at my belly, then to the stroller, back to my belly, and then to my face. Some smile politely. Some give me a “whoa, you’re really going to have your hands full,” look. And others give me “that” look. It makes me uncomfortable. It makes me feel like I’m being judged. And most of all, it makes me feel like I’m a fraud.

“I’m one of you!” I want to shout. “Do you know what I’ve been through?!? I deserve this.” It’s like I want, and need, to defend myself…to total strangers.

The thing is, I’ve been on the other side. I’ve been the one watching the “lucky” woman walk by with her gaggle of children, the all-American family, or the woman with the perfectly protruding belly. I’ve judged them for having the perfect life with perfect kids, even though I know that nobody’s life—or kids—are perfect. But in the throws of loss and grief, it sure feels like it, doesn’t it?

Our therapist used to say to us all of the time, you never know. You never know what their story is. You never know what their struggle is, or was. And it’s true. I thought I realized that before, but I’m finding out that I’m really only understanding it now.

Yes, we’ve been through hell and back, several times. Yes, we deserve this. But so do a lot of other women and couples out there. So while I’m so incredibly grateful for being where we are, I also find myself wondering, Why us? Why now? For lack of better words, I’ve found there’s a certain amount of guilt in being pregnant after loss. For me, there’s internal and external self-guilt. I’ll focus on the external now, but am working on a post about the internal too.

I have some guilt about being pregnant within this community, and it made me nervous to “come out” here. That seems weird, doesn’t it? I mean, that’s one of our hopes, isn’t it? At the same time, because I know what it means to be part of this incredible community of shared experiences and support, I know it is hard to hear that someone is pregnant—even one of our own. On some levels, I feel like I need to justify it to the outside world. Maybe it’s because of the reactions I’ve received in real life from people who can’t quite fathom that I’m pregnant for the sixth time. Or perhaps it’s me. Maybe what I’m really feeling is that I have to justify it to myself.

After going through everything we have, there came a point where I didn’t think I’d ever have a positive experience with pregnancy. And when we lost Sarah and Benjamin, I thought that was it. I was left with an immense sadness that my only experiences with pregnancy, labor and delivery were ones of extreme fear, pain, loss and grief. I won’t say that I accepted it; rather it was just what came to be as we carried on in our changed lives. When we brought home Baby Boy, I didn’t look at adoption as missing out, because I never felt like less than a Mother for not having carried him. Would I have loved to have had the experience? Of course. But he is my son. End of story. I just never thought I’d see another side, and now that I’m here, I’m not sure how to handle it.

I will always identify as a baby loss Mom. And I am also an adoptive Mom. But in my heart, I really just consider myself a Mom, with an evolving role. In the coming weeks, I need to figure out how to get out of my head, let go of the guilt, and embrace this next evolution. Any suggestions?

Did you feel like a fraud? What did you do to let go?

People Mean Well, But…

Being in hiding for so long did have its advantages. Double A and I got to be in our own little world, without the bother, worry or excitement from others. This was our secret, and we had built a cocoon to protect us from the outer world. It helped that Chicago had one of its worst, and longest winters, which gave us the excuse to stay in and/or bundle in layers. We didn’t have to deal with the sideways glances, or people wondering why I wasn’t drinking. And when we were out, I knew that the focus wasn’t on me, rather Baby Boy, and no one was the wiser.

There’s something nice about not having to focus on it. Truthfully, we didn’t want to deal with the questions, looks of fear and pity, or over-excitement. We were unsure of what was going to happen, and to some extent, we still are. Not to mention, that while I’m no longer superstitious, there’s still a part of me that worries that if I say something, bad things will happen.

Of course there came a point where I was no longer able to hide. A point that we knew if we were going to see family and friends, we’d have to let them know. But we wanted to control the message and do so in a mindful manner. We allowed our parents to tell select family and friends with the caveat that they don’t go overboard with excitement or questions, and they don’t share, or G-d forbid, post something on social media. We told some in person, and sent others low-key emails. It’s terrible that something that should be shouted from the mountaintops, for us, has been relinquished to an “oh by the way” passing comment.

As we’ve slowly started to “come out” in real life, we’ve had a mix of responses, many of which go under the “people mean well, but…” category:

You’re pregnant AGAIN?!?
This response—which was the first thing out of some people’s mouths when we told them—comes across as a combination of shock and accusation. It has the What the f*ck are you guys thinking? undertones as if the only reason we’re doing this is to tempt fate, and not grow our family. This one often caught me off-guard, and unable to respond with anything other than a bite-my-tongue smile.

That’s OK that you didn’t tell us until now.
Really? That’s OK? Do we need your permission to tell us what we should do here? What an odd thing to say. I have no problem answering this one bluntly: Quite frankly, it isn’t up to you to give us the OK. We’re doing what we need to do.

You’re how far along? You’re into the safe zone! You’re totally in! You’re golden!
Yes, I wish and hope this is true. It’s just that I know too much. I’ve been through too much to be able to fully subscribe to this. My reply: We are grateful of where we are today, and hopeful that things will continue on this path.

Doesn’t that always happen? You adopt, and then you get pregnant!
I hear this one at least once a day, and it makes my blood boil. This is the equivalent to people saying, ‘everything happens for a reason’ to us after each of our losses. I don’t believe in that either. Sure BB is an amazing addition to our family, and has been a great focus and distraction from the anxiety and fear, but he is not the reason. Stress may have played a role in not being able to get pregnant, but I don’t think it played into not being able to stay pregnant.

More importantly, why say anything? It’s like people have to justify, and make sense of everything that happens in life. Well, let me tell you, life doesn’t work that way. As John Lennon said, “Life is what happens to you when you’re busy making other plans.” I still haven’t figured out the best response to this one, and would love to hear your thoughts.

Oh thank goodness you’re pregnant, and you didn’t get fat!
OK, this one I just think is just hilarious. A dear friend said this to me, and then moved on. It was perfect, actually.

Throughout all of our experiences, we have been faced with people saying a lot of odd, sometimes hurtful, things. I know for the most part, people mean well, and they often say something—anything—to just fill the discomfort of empty space. At the same time, I wish they would think first, and realize something simple speaks much louder.

I have to say that while we’ve heard a lot of dumb comments, we’ve also received a lot of support, love and thoughtful ones. Overall people have been shocked and thrilled, but scared. Understandable. So are we.

What’s the best/worst thing you heard after a loss or when you announced being pregnant after loss? How did you respond?

Feeling Between the Lines: Finding Out

“How the hell did that happen?!?”

This was the response from Double A when I showed him the positive pregnancy test back in December. Staring at those two lines took us both by surprise, and has left us in a state of excitement, shock and worry. I won’t say that we weren’t trying as much as I’ll say we weren’t paying attention. We just didn’t think about it. We couldn’t think about it. After spending the last six years focused on tracking, timing, and unromancing, not to mention grieving, we were done. We were living, and being, and enjoying life with our son. (Please don’t say that’s when it always happens. I’ll be talking reactions to our coming out shortly.)

I remember calling the doctor’s office the next day and the nurses screaming, “Erin and Aaron are pregnant! Erin’s pregnant!” It was great that they were so excited, I just didn’t know what to make of being pregnant again. Was I up for this? Could I handle it? What if it happened again? So many emotions. So many unknowns. Double A and I were as excited as we were terrified. We still are.

When we first met with the doctor (same head of Maternal Fetal Medicine for one of Chicago’s best hospitals), I said to him, “I know what I’m about to ask you is not fair, but I need you to play G-d, and tell me everything is going to be alright.” I knew he couldn’t do that, but I wanted him to reassure me, and to guarantee that all would be OK. No, I needed that. Of course that didn’t happen. But what did happen was a frank, and ongoing, conversation about options and possibilities.

According to Doc, the biggest things that we had going for us was that this baby was conceived naturally, and there was just one. Our first two pregnancies were the only ones conceived naturally, and they both ended early, likely chemical pregnancies. We knew that the hormones used in fertility (in our case Follistim with the IUI) sometimes thinned out the uterine lining and caused issues, and since there was never anything else to point to why we lost Baby K, Sarah and Benjamin, our hope was that “spontaneous conception” as they kept calling it, was in our favor (our 3rd loss was genetic due to chromosome 17, and 5th, the triplet, was likely genetic as well).

Great. Now what, if anything, can we do differently?

I try to not do too much with Dr. Google, as I know that can lead to a black hole. But I did do some research, and spoke with some friends who had experienced similar issues. Doc welcomed our questions, and provided us with a medical answer, along with his opinion/recommendation on everything we discussed. This enabled Double A and me to make informed decisions, together with Doc.

We talked about a cerclage, and the super cerclage (aka the transabdominal cerclage, or TAC), but the risks for me seemed to outweigh the benefit, especially considering cervix issues didn’t seem to be the problem in the past. I know I brought a lot of other thoughts and questions to the table, but can’t remember them all.

We netted out on 17p progesterone shots starting at week 16 through 36. This fell under the camp of, can’t hurt, and may just help, as there are some studies that show it prevents preterm labor. (This also fell under the camp of, holy crap that’s expensive, what do people without insurance do, but that’s a rant for another time). We also decided that weekly visits, initially to measure baby growth, and then to check the cervix length and closure was what we were all most comfortable with.

From all of our experiences, we learned the need to advocate for ourselves: to stand up for what we want and need, and not stop until we feel comfortable. Finding the right doctor, who is willing to listen to our thoughts and needs, and develop an evolving plan with us, instead of for us, has given us some control in a mostly uncontrollable process. Knowing that we could go in at any time, daily if we wanted—without judgement—also helps ease our minds.

Each week, we’d go in with bated breath. Would there be a heartbeat? Is he growing properly? Are there any genetic issues? How about medical issues? The fear of losses past, never subsides, and I’ve had to choose to deal with that fear in new ways every day.

From the start, we knew we couldn’t look at this pregnancy as a 40-week journey. We needed to break it down into more manageable bits of time. So, for us, it started with getting to—and past—the time of each prior loss. And as we hit each of those dates, it was a combination of relief, with a dose of sadness for the baby who didn’t survive that date. When we surpassed Sarah and Benjamin’s date, it was the sadness, along with shock that we had made it so far. But what really threw me was hitting 24 weeks: possible viability. I remember crying to Double A over the fact that if the Little Guy were to arrive, the doctors would actually try to do something to save him.

On some levels, I think that I have been blocking out everything out: the fear, the hope, and the possibilities. Maybe it’s a survival tool. It isn’t that I haven’t accepted or acknowledged that I’m pregnant, but focusing on it, and the possibility of another loss is just too much for me to think about. So we hid. And I felt guilty about hiding. Not about the people we were hiding from, rather guilty we were hiding this baby we are so in awe of, and excited for.

Early on, Double A and I talked about going back to therapy, and even talked with the psychiatrist about the possibility of me going back on meds (something neither Double A or I thought was ideal, but we wanted to be prepared for anything). But in the end, we’ve been able to talk one another through, and down, as needed. And yes, Baby Boy has been a great focus as well. Truthfully, it all feels surreal.

For the most part, I have to say that I’ve been relatively calm, having only had two major panics resulting in me going in for heartbeat checks. These panics were completely mindf*ck driven, with no real reason…other than five prior pregnancies and seven babies who didn’t make it home. Of course there have been smaller panics and bouts of being overwhelmed by the all the feelings. Nights tend to be the worst, as that’s when my mind seems to wander to those places.

I’ve found that the further along we get, I am hopeful. At the same time, I’m not able to let my shoulders down and breathe easy. I know that’s something I won’t be able to do until he’s here breathing, screaming, and healthy, hopefully at 40 weeks. I’ve accepted that. At this point, I’m just trying to focus on today, and be grateful of where I am because all I really know, is that at this moment in time, he is OK, and that’s what I have to hold on to.

On the Podcast

Double A and I are honored to have been asked to share our story on the Zen Parenting Radio podcast. We had a great talk with Cathy and Todd Adams that is going to be shared over the next two weeks.

We hope you’ll listen to us, and then continue to tune into Cathy and Todd because they have a lot of interesting people, stories and insights to share. And perhaps the best part is that you don’t have to be a parent to listen in. While it parenting is in the title, it is more about helping individuals become better selves in both practical and spiritual ways.

Photo courtesy of Zen Parenting Radio.

Photo courtesy of Zen Parenting Radio.

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Thank you to Cathy and Todd for allowing us to share our story and help break the silence of miscarriage, stillbirth and baby loss. We hope you’ll listen, and would love to hear your thoughts.

No More Hiding

I caught a glimpse of myself in the mirror a few weeks ago, and I was taken aback. I stared, taking myself in from head to toe and back again. And each time I’d pass a mirror that day, I’d do the same thing, trying to figure out who this person was. Of course it was me in the mirror, but I didn’t recognize myself.

This time, it wasn’t me looking at my reflection, feeling sorry for that person with the sad, tired eyes, and drawn-out face. I wasn’t looking for the person who existed before. It was me noticing me for the first time, in a long time. And it was me finally starting to embrace who, and where I was at that moment: nearly 25 weeks pregnant.

It’s unfamiliar territory. I’ve never seen myself this pregnant. I’ve never had the protruding belly (not to mention the boobs!). I’ve never felt a baby move before. And I never thought I’d be here again, let alone this far.

Even still, it has taken me three more weeks to bring myself to write about it. Up until the last couple of weeks, I’ve spent my time hiding. Hiding behind flowy tops and scarves. Hiding with fear and from hope. Hiding from family and friends, and the people in this community who have been so supportive every step of the way. And hiding behind silence.

Silence! The biggest thing I try to advocate against.

Sure, there are many reasons for me to hide. In fact, there are still plenty of family and friends who don’t know (perhaps until now). Outside of telling our parents, we made a conscious decision to keep this pregnancy to ourselves for as long as possible. The thought being that we didn’t want to deal with looks and thoughts of fear, pity, or what the f*ck are you thinking. On some levels, I’d like to stay in hiding until this Little Guy arrives, hopefully breathing and healthy around 40 weeks. But at the same time, I understand the importance of sharing experiences to embrace support and provide hope. I need those shared experiences of support and hope to get through this. And my hope is that there are others out there who need it too.

Lately, I’ve felt like a coward for hiding. Sure, five prior pregnancies resulting in the loss of seven babies has earned me the right to do whatever I need to. But at the same time, I started Will CarryOn to be a voice. To end the silence, and get people talking about the too-often taboo subjects of miscarriage, stillbirth and baby loss. And so now I’m taking a leap of faith to add talking about pregnancy after loss to this mix. I don’t intend for it to be the focus of Will CarryOn, but I do think this is an important aspect that needs to be discussed. I’ll be sharing more of the story, my thoughts, feelings and the reactions we’ve received soon. It felt too much for one post, and I wanted to embrace the courage of “coming out” while I have it.

I don’t know what lies ahead in the days and months to come, but I’m trying to stay positive and hopeful, while keeping the fear and anxiety at bay. It’s been a long 28 weeks, but I am here now, finally ready to talk about it.

 

Understanding Respect

I’ve had some friends and family reach out to me this past week after the airing of Return to Zero. “I didn’t realize,” they said. “We didn’t know,” they explained. They told me that watching this movie gave them a better understanding of what we experienced. They went on to say how they admired our strength and courage to stay together, carry on and try again, and our willingness to be a voice. I was floored. Not only did they take the time to watch a painful movie, but they stopped to reflect on it, and reach out to Double A and me to share their thoughts.

It’s no secret that miscarriage, stillbirth and baby loss are hard, to say the least. Of course they’re devastating to the parents, but family and friends are affected in different ways too. We watched our parents’ devastation not only in the losses of their Grand-babies, but also in having to see their children go through so much pain and suffering (I’ll be sharing some posts from the Grandparents’ perspective soon). We saw some family and friends go above and beyond, and others who disappeared. And we have made some of the best friends we wish we never knew through support groups, while losing others along the way.

Our relationships have changed over the past six years. To this day, there are still some family members who have never acknowledged our losses, even when they resulted in the burying of our children. In some instances, I’ve confronted them with a “you need to know what happened, and what we went through” conversation. Other times, I’ve looked the other way and buried the hurt feelings.

The thing is, Double A and I realize that this is hard on others because people don’t know what to say or do. In talking with a friend of mine about the challenges of friendships after loss, I had mentioned something to the effect of, “If they don’t understand…” and she jumped in to say, “Erin, none of us understand. We didn’t live through it.” That’s when it hit me: Understanding often comes from experience, and if you haven’t lived this horror, you probably don’t know what it is like. I realized then, that what it really comes down to is respect. As baby loss parents, we can’t expect people to understand what we have gone, or are going through. But what we can expect though, is respect.

Respect of our needs. Respect of our thoughts. And respect for our grieving in a way that works for each of us. I’ve talked before about being selfish in going through the grief process. I’m a firm believer in doing what you need to do to get through (as long as you’re not doing harm to yourself or others, of course). This selfishness has nothing to do with others. It isn’t personal, and it isn’t something being done to spite them. We do what we need to do to survive in the moment. Sometimes understanding means respecting something you don’t actually understand because it’s for someone you love. Over time, I have found that I need to surround myself with those who understand my need for that respect. It’s been painful. It’s been eye-opening. And it’s been a lesson in letting go.

How have your relationships changed after loss? What advice would you give to family and friends on ways to support someone who has experienced loss?