Today. And Always.

It seems like now everything has it’s day: National Doughnut Day. Left-Handers Day. Talk Like a Pirate Day. I get it. It creates awareness and builds community. But does having so many days take away from days with bigger meaning? Now don’t get me wrong. I’m left-handed. I love me some doughnuts. And I may, on occasion, talk like a pirate (OK, not really, but I find it funny when others do). I just wonder if “days” are the latest in the “everyone gets a ribbon at field day” mentality.

At the same time, who am I to judge? If it’s important to people, so be it. What actually gets to me is when these fun, playful days receive more coverage than days with bigger meaning. Days whose subjects are taboo.

You see, today’s my day. And the day for all of the moms, dads, grandparents, siblings, aunts, uncles, cousins and friends who have experienced the loss of a child through miscarriage, stillbirth and infant loss. Today is Pregnancy and Infant Loss Awareness Day. It’s part of an awareness month, designated by Ronald Reagan back in 1988, where countless babies are acknowledged and remembered. Babies whose stories had been previously hushed because no one talks about baby loss. Because those same moms, dads, grandparents, siblings, aunts, uncles, cousins and friends have been told that they shouldn’t talk about it. Sadly, it is this mentality that has led many, like myself, to feel like we’re alone.

But you know what? We’re not alone. And you know what else? More and more of us are not afraid to talk about it, and write about it. More and more of us are raising awareness every day. We’re helping one another by letting each other, and the world, know it’s not only OK to talk about, but we need to talk about it. And by doing so, we’re honoring the memory of our babies, and all babies gone too soon.

So tonight at 7pm, as we celebrate the 3rd anniversary of Will CarryOn, we’ll light our candles for the wave of light. But today, and everyday, we stand alongside all of the families who have lost their precious children.

For our Baby K, Sarah, Benjamin and the four we never met, we remember.

The Replacement Child

Two weeks after we lost Sarah and Benjamin, we received a call that we were matched on the adoption front. Double A and I had mixed emotions at the time. Of course we were thrilled at the prospect of finally bringing a child home with us, but at the same time, we were still in such deep mourning, not to mention shock. Our heads were all over the place. On some levels it didn’t seem fair to the twins for us to explore this opportunity. And at the same time, our longing to parent our children made it clear that we needed to. On our way home from meeting the Mother, I remember telling Double A, if this works out, I certainly hope people don’t say to us, “See, everything worked out after all.” That adoption fell through, but the sentiment remained.

Baby Boy arrived some seven months later, and while no one said it outright, I got the sense that in the minds of some family and friends, that all was now well and right in the world. Fast forward to the Little Guy’s arrival, and the everything happens for a reason/doesn’t it all work out in the end thoughts were echoed time and time again.

For some reason, there’s this notion of the “Replacement Child” after loss. As if having another child erases all of the pain and suffering we, as bereaved parents, go through in losing a child(ren). As if having another child could make up for of the child you lost. These children are our family. They are the children we fell in love with the moment we discovered we were pregnant. Children for whom we had already developed hopes and dreams. Children we thought we’d be able to meet, watch grow, and build lives of their own. They are not replaceable.

The Replacement Child isn’t always a new child. I know of parents who already had living children at home before their loss being told, “at least you have another at home.” Really? Would someone say that to a sibling if their brother or sister died? Or to a child if one of their parents died? I don’t even think someone would say that to the parent of an older child who had passed. So why is it OK to say that to the parent of a child lost through miscarriage or stillbirth? Let me be clear, it is not OK to say this. Ever.

Today is the second anniversary of Sarah and Benjamin’s birth and passing. Two years later, and the wound feels just as fresh. The grief just as deep. And our love, and longing for them to be here alongside us remains just as strong. We are grateful for our boys we have at home, but they are not replacements. Just much welcomed additions.

Have you experience Replacement Child “Syndrome”? How have you dealt with it?

 

Cries of Joy

It is with great excitement, a little shock and much gratitude that I share that Little Guy is here. Healthy. Breathing. Living. Those first screams were the best music Double A and I have ever heard.

As you can imagine, there are so many emotions surrounding his arrival and homecoming, something I’ll share more on soon. In the meantime, I wanted to thank everyone for all of the love and support along the way. You’ll never know how much it means to me, or how much it helped me stay sane.

Thank you. Thank you. Thank you.

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.