Is the first year after loss really the worst?

I tend to think so. But what do I know, sixteen months out?

In the first few months after my loss, people would sometimes say, “The first year is the absolute worst.” This would come primarily from those who have suffered baby loss, so I trusted their opinions. However, in the back of my mind, I was always thinking, “I’m not so sure.” Everybody grieves differently. Our minds, our hearts, our bodies, everything “recovers” in different ways and paces. I place that word in quotes, recognizing that grief is a lifelong process, and from what I know there is never complete recovery from the loss of a child. But there has to be some degree of healing for any of us to continue living. Not merely surviving, but truly living, which is what I’m starting to finally do. Back to the questions at hand: So how could anyone know that my first year of grief would be the worst?

I’ll tell you. I’m sixteen months out. So maybe I don’t know a whole hell of a lot. But so far, it does seem that the first year IS the absolute worst. I know I will have days where the grief knocks the wind out of me probably for the rest of my life if not at least for many years. I know I’ll be in a retirement home talking about my precious son. I hope to be. He deserves that. However, the pain, the pain lessens. It has to. And while I hope that I will always honor and acknowledge my son as part of our family, I also hope that the pain continues to lessen. I don’t feel I need to hold onto the pain to hold on to him. I know that his legacy is about so much more than that.

My epiphany about the first year being the worst came to me at the most unforeseen time. A visit to the dentist. For some reason, the dentist always brings flashbacks. I always think about the last time I was at the dentist and how I was feeling. This dental visit was going really well. I got a clean bill of dental health, and everything was perfect. I flashed back to before my loss when TTC. I kept asking if this or that was okay during pregnancy (just in case I was pregnant), and the woman kept reassuring me. Then, she told me about a woman who had a stillbirth that was attributed to gingivitis. I thought that was just absolutely horrific and thought I would never forgive myself if something like that happened to me. (And of course, I did NOT lose Elias to gingivitis. But oh my, if hearing that story was not incentive to keep my teeth clean, I don’t know what would have been!)

Flash forward to my next appointment. This was only a few months out from my loss, maybe four or five. I just wanted to get in, get out, go home, and crawl under a blanket. You know, typical day. So I go in, and to my surprise, the hygienist says she’s sorry for my loss. I had no idea how she even knew. But I didn’t want to talk about it at all, and I felt so exposed and panicky and self-conscious and just OMG get me out of here! So they proceed to do the cleaning and had plenty to say. In nice tones, of course, but still. Teeth not in great shape (thanks, grief). Hadn’t been flossing enough (thanks, depression). Enamel worn away (thanks, months and months of barfing due to multiple gestation). I felt like sitting up in the middle of that dental visit and screaming, “My son died! I’m sorry I didn’t brush my teeth twice a day and always remember to floss! I was kind of busy trying to not off myself or end up in the freaking loony bin! Can you cut me some slack here?!?!?!”

I’m sure I had a visit in between that one and this one, but I was likely in my numb phase of grief (rather than the anger phase), so that visit doesn’t quite stand out so much in my mind.

But this one? It went so freaking well that the lady didn’t even give me the special “sensitive” toothpaste. She sprayed cold-ass water during those rinses, and it didn’t bother my teeth one bit. We talked about a bachelorette party I’m going out of town for and what salon treatments I might get beforehand (it’s at a water park). She told me all about her experience getting waxed for the first time (I know, right?!) and a little about her family back in Romania. We made jokes and talked about the weather, all that NORMAL stuff, and I walked out of there feeling like a million bucks. And almost like a normal person myself. I felt so awesome, I walked next door to FroYo and treated myself to some delicious calorie-laden teeth damaging frozen yogurt (I’d never been there before. Let me say that it is fan.tas.tic).

Driving home, scarfing my ice cream (unsafe, I know), I realized something that should have been so painfully obvious all along. I guess I’d just never really thought about it. But here it is. The first year after your loss, amidst the raw grief and anger and all that, there’s always that nagging agonizing feeling of, “This time last year I was __________”. Whether happily TTC, happily pregnant (or, admittedly at times miserably pregnant). “If only I knew then what I know now!” And that feeling where you trick yourself into thinking you could have changed the outcome now that you know what you know, which makes you feel panicky and guilty and so.freaking.upset.

After the first year, you start saying, “This time last year I was __________”. Suicidal? Hating everybody? Not sure my broken heart would continue to function? Not sure I would ever care to brush my teeth or shower on a regular basis?

And you kind of stop wanting to go back. You start being okay right where you are now. And you realize that a year from now, you’ll look back without panic attacks, and just think, “This time last year I had FroYo for the first time, and it was fan.freaking.tastic.”

Every Night

Every night I ask Elias to visit me in a dream and let me know that he's okay, that he loves me, that he isn't angry, that he's at peace. Every night I fail to dream of him, and when I wake up my heart is broken all over again.

Trying

People who have suffered the worst loss imaginable have to fight for their lives every day. I know that sounds melodramatic, and even loss parents reading this might think "exaggeration much?" but stop and think about having your heart torn out and being expected to survive that? And yet, we do. Survive. But when do we get to do more than simply survive? Every day is a struggle to get out of bed, shower, get dressed, hell even breathing just hurts some days. Now that the first year has passed, I am making a conscious effort to emerge from my hermit-like self-loathing pity party state and be an active participant in life. My son wouldn't want it any other way. He would want me to fully LIVE. So as I said before, I am striving for that balance of work, home, friends, hobbies, myself, and all the other things that grief "stole" my attention from. This is kind of a HUGE deal. Not everyone gets here. Some people stay STUCK forever in the black mire. Well, apparently not all of my friends truly realize the significance of my efforts or how much more difficult it is for someone who is grieiving to try and throw something like a dinner party. I spent allll day Saturday cooking, cleaning, decorating, and getting amped up to have people over. Two couples that we were expecting to come over didn't show up. One of them had promised to come and were a huge part of why we were throwing the party, because they said they never do anything. Less than three days before the party, one of them mentioned to my sister that they wouldn't be able to make it due to a prior commitment (mind you, we had spoken about the party for weeks beforehand where nothing was ever mentioned about prior plans). I find that excuse very difficult to buy, and I need to emphasize that this person never even bothered to tell me directly or apologize or anything along those lines. They didn't even ask if my sister could pass the message along. (?!) Another couple said they were coming and just never showed up. We heard nothing. A week or so ago, another friend of mine ignored several of my attempts to hang out after saying she wanted to. This was a friendship that had drifted, and I was trying to do some mending, which takes a great deal of emotional energy on top of grief. I tried suggesting different things to do and at different times, and she never confirmed anything, so I finally said "What is going on????" and still no response. So, I'm about done. With everyone. I keep putting myself out there, and it angers me that people must think I'm better, that I don't need friends, and it angers me that they don't know that in many many ways I am still fighting for my very life. Fighting to have some kind of life outside of the loss world, to do more than simply survive but to live. It angers me that my husband doesn't understand that concept, either. How will anybody else get it when he doesn't? I remember when he used to "get" me. I miss those days more than ever. Overall, I feel so disrespected, devalued, alone, misunderstood, unloved, and unimportant. If I didn't have my daughter here, I think I'd just be done with it all. The weather is getting nicer, and I have the day off, I should be out enjoying it, but I just want to crawl in a hole and disappear.

Feeling off-balance.

I just want to say that I miss this place, and I miss reading blogs regularly and commenting and all of the above. I am really struggling right now to achieve some sort of balance. I have stepped away for awhile, mostly because I feel I was here perhaps too often, and that's not good either. Life is not meant to be spent tied to a computer screen. The positives have been that I'm taking a workout class and am also learning to cook and enjoy other things. However, something is missing, and I know that I still need to come here; I need to write and to read and to connect. I just don't know how to get things balanced. Slowly I am "unsubscribing" from people on Facebook and will be doing a cleanup. I feel I have overdosed on social media to some extent, and I want to emerge from the shadows and focus more on "real life" and all that is tangible. Then, I realize, I don't even know what that means or what that is. Between my career, my marriage, my home, my family, my friends, it's just so difficult to balance it all. New hobbies and interests have taken shape in my life, but where do they fit in, and how do I incorporate all of this new stuff and still come here? It blows my mind when people say they are bored. How the hell are people ever bored? Life is so painfully short, and there's so much I want to do, become, achieve, and explore. So many people to connect with. So many people who can change and enhance my life. I can't disconnect from the loss community, either - not that I would ever want to. No way, no how. I am judged by people (and it is very obvious) for still reading the loss blogs when I do (which isn't often enough), for connecting with other loss moms on FB, and for wanting to acknowledge and honor my son. Maybe to some extent at certain points in my life, things were lopsided in that direction, sure. But now, I am realizing that, and the problem is that I don't know how to fix it so that it all has its proper place. I've found myself becoming much more social lately, which also has its pitfalls. Anyone in the loss community will tell you that figuring your social life out post-loss is a very confusing and difficult task. Just when I open my heart to be vulnerable again to friends, I end up getting screwed over again. I am at a point in my life where I am done with games and passive aggressive relationships. You're either my friend or you're not. I realize friendships are on a spectrum, and they shift and morph, but there's also a limit. And when I feel completely disrespected and devalued? Time to move on. I don't know how to achieve balance in my life yet, and I realize that's the goal so many of us have. I don't know how to reach "integration" as some call it. I don't know how to just be at work and focus on work, or be at home and focus on home. Everything gets blurred, the colors bleed, the lines shift. Just as I don't know who to trust anymore or how I will ever be okay again, really okay again, without my son here. Everything is lacking clarity, and I feel aimless, confused, hurt, abandoned, and scared. My grief has new layers to it that I never knew before, and I have horrible flashbacks and nightmares that can be triggered by many different things. I don't want to say I have PTSD, because I don't really know, but it really wouldn't surprise me. Work used to be my safe haven, my place to go and get away from my grief, and it was easy to compartmentalize to some extent. Why fifteen months out (today!) is it becoming more difficult to do that? Why do I find myself crying at work during my lunch hour? Why can't I focus and be efficient? Why do I still not know what choices are best for me, and why do I feel like depression is lurking around the corner threatening to snatch away any joy and motivation I feel?

Ignorance = Bliss?

There's nothing that irritates me more than a pregnant woman who seems to think she is immune to loss.

Guess what, honey? You're not. Nobody is immune.

In fact, most of the loss mamas I know are extremely educated, received great care (and would not switch their OBs post-loss for anything other than simply not wanting to invite flashbacks), ate well, rested, read every pregnancy book they could get their hands on, and loved their babies with everything in them. Society projects this idea that healthy people with solid medical care (especially with all that technology)don't lose babies.

I realize this is why there are so many smug women out there who truly believe they will never lose a baby (or babies). Ok, fine. So do we blame society? Then again, that mentality isn't even what pisses me off so much as that many of these blissfully naive and ignorant women also flaunt their seeming invincibility against harm (if you think I'm exaggerating, stop it. I'm not. I could give you countless specific examples of said flaunting that has been done in front of myself as well as in front of other loss mamas who have shared their frustrations with me, but I won't. At least not today).

And, well, there's just no excuse for that smugness. None at all. Nobody is immune to tragedy. Who in their right mind truly believes they are?

I hear some speak of "God's plan" and knowing it. Well, all those weeks when everything was PERFECT with my babies, I thought God had a hand in that too. I felt blessed too. Doubly blessed. What happens if/when your blessing(s) gets taken away? How do you reconcile that in your mind with a God you believed to be all-loving, all-powerful, and knew your heart and your innermost prayers? Did God fall asleep at the wheel? And please stop with the "Satan stole your baby" crap. I swear, there is nothing that makes you sound much crazier. (Yes, I had someone tell me that.) I've had extremely religious people during my pregnancy literally say that God spoke to them and told them both of my babies would be born healthy and safe. Why would they say that? Post-loss, they expect me to not grieve because it's "part of God's plan". Really? Wait, I thought God told you his plan, and this wasn't going to be part of it. So...Did your signals somehow get crossed? *sigh* These women who apparently feel they have a direct line to God, know his plan, know his plan could never entail heartache or tragedy from them because they are "protected" or invincible somehow, they SERIOUSLY get on my last nerve.

Show some humility. Show some respect.

Realize that the unfortunate reality is that loss happens more frequently than you'd think (thanks, society, for covering that one up with all the shiny happy baby shower bull!), and that loss does not discriminate. It doesn't care about your color, race, religion, ethnicity, sexuality, education level, morality, finances, state of health, or anything else.

In fact, the day after my loss, one of the L&D nurses came to visit me and shared that she has suffered a full-term stillbirth. She gave me her phone number, and she shared some very personal things about her loss, and I will forever be grateful to her for not only those things but for the lesson she gave me. Which is that even doctors, L&D nurses, doulas, and midwives experience stillbirth. EXPERTS in the field of pregnancy and delivery.

This shouldn't come as a surprise, but for me it initially did. I have had to take a hard look at myself and my perceptions about loss and confront the fact that I must have also thought that with enough knowledge, care, and caution, people wouldn't lose their babies. So why, you ask, do I have a "right" to get frustrated with others when I may have had a similarly naive view? Here's why. Even before I had EVER experienced a loss, I was always cautious about the topic of pregnancy. I was never one to shout it from the rooftops the first sign of a "plus". I was always aware of the pain and suffering in the world enough to call my best friend and tell her the news but then follow it with, "Should I tell anyone else yet? I mean, what if, God forbid, I lose this baby?" (Then, I did miscarry.) Never once did I feel "above" experiencing a loss, even with all those things that I admittedly felt would put the odds very much in my favor of a successful outcome.

So no, there's no excuse for the arrogance. That's the part that drives me bonkers.

Is there some correlation between being a cautious, mindful, caring, humble person and experiencing loss? Because it seems that I have met the most amazing people inside this very community, the loss community, and it really makes me wonder.

I used to believe in karma. Well, karma is crap.

The One Sentence Post

Fourteen months out from our loss my husband and I are doing some afternoon shopping when I am stopped by an acquaintance / grade school friend / FB friend who says, "Hi, Lindsay! Where are the babies?" and when I remind her that my son died she says, "Oh, I forgot. I'm sorry."

Their Birthday. Chills, times two.

Part Two: Their Birthday

This will give you chills. Twice, if you read all of it.

So, I apologize that this is a bit convoluted. I shared with you the Elias remembrance event on FB that led up to their birthday and Evelyn’s party at the community center two days after their birthday. What I need to do now is try and document their actual birthday, which is really hard for me to even put into words.

Because really, it was just perfect. Absolutely positively perfect.

In order for you to get the full effect of it (which is basically impossible), I need to share something ELSE amazing that happened in July when Evelyn was about seven months old. I’ve never written here about it, but it’s time I do.

Last July we were at a balloon release for a local woman who had lost her daughter a little over halfway through her pregnancy four years ago. I did not know her well (although I know her better now), but I had talked to her a couple of times online and wanted to help her honor her sweet girl (BLMs stick together like that, you know). I think I had met her through the S.O.B.B.S. forum on FB, and she lived about a half hour away, so we were glad to go.

So there we were at her house for the first time, not really knowing anybody else there other than the host, and we weren’t even there for five minutes when we noticed a woman looking at us, transfixed. She slowly approached us, looked at Evelyn, and burst out, “Is she a twin?” with this look of complete shock on her face.

My heart was pounding. You can imagine. (Well, maybe you can). I was immediately thrust into the early days of our loss and that feeling of “Everyone knows!” Do you know what I mean? Those early days when you feel like you have a flashy neon sign announcing your dead baby to every cashier lady and every random stranger on the street? I hadn’t felt that self-conscious panicked neon sign-y feeling in months, thankfully, and there it was again! I thought, “How the hell does this lady know Evelyn is a twin??!?!?! Are we branded?! Do I have a freaking tattoo on my forehead that gives it away?!” I admit, I was very self-conscious, and I don’t know where that came from other than I was JUST SO CONFUSED! Who was this woman?! How did she know?! Do we look miserable?! Even so, how do our expressions and appearances translate to ‘lost one twin’ to outsiders?!?!! Are we the walking plague; are we so obvious?!?!! I had a few moments of crazy, but they were much quicker than I’m making them out to be here. Then, I realized, this woman was familiar. But why? Who was she, and where did I know her from?

She looked directly at me, put her hand up to her cheek in shock, and said, “I took your son’s photos.”

It was the kind, quiet, talented woman, D, from NILMDTS (Now I Lay Me Down to Sleep, which is a volunteer organization of photographers who photograph stillborn babies and those with fatal diagnoses). She had been there on that day, the best day and worst day of our lives. A stranger with a camera in our most painful and private moments, to capture what we didn’t realize we would later be so grateful to her for having captured.

I was shocked. A different kind of shock. I didn’t know what to say or what to do or how to feel about this. Immediately, we hugged, and we were both crying. It was just so absolutely amazing to me that we were both brought together a half a year after our loss. And, well, she thought so, too. She said, “I never get to follow up with the families after I photograph their babies, ever. So this is just incredible for me to see you and talk to you.” She was very kind and respectful, and it was very moving to have a chance to talk to her and reflect on our experiences.

Once that initial shock wore off, I tried to piece together why she was here at this other BLM’s house, and so I assumed she had taken photos for her as well. But no. In fact, she knew the women through church. So it was a total “random” thing (or was it?) that we were both there that day and brought together in such a mysterious way.

Now, I am typically no longer the “everything happens for a reason” type of person, but I will say that running into her that way made me stop and think. It really didn’t seem or feel like a coincidence. And it gave me chills that stayed with me for some time..

She offered (more like insisted) to do a free photo shoot for Evelyn as a gift to our family, and I couldn’t resist the offer. I hadn’t had professional photos done for Evelyn since her newborn shoot (which was expensive, I’ll add), and to have this woman offer to do them for free was so generous, not to mention meaningful. There was something beautiful, something so poetic, about her having done Elias’s photos in the hospital and then having an opportunity seven months later to do an infant photo shoot for Evelyn. And, I must add, they turned out gorgeous, and I often get asked “Who did Evelyn’s summer photos?!”, and I love telling them the story of D and how we were reunited so unexpectedly.

Fast forward to December and the week of their birthday. I received packages in the mail that week, as I mentioned in my last post. One of those packages was from D. Inside was an adorable owl gift box, and inside that gift box were two adorable metal owl ornaments. They were hand-painted white owls with little scarves on them, and each had a name painted on it. One for each of my precious twins.

Next, inside the box, we found a chain. On the end of the chain was a black and white photograph of Elias’s precious adorable little feet. His name had been added to the photo, and it hung as a pendant on this chain. D had that made just for me (with a photo she had taken in the hospital). She enclosed a heartfelt message to me about how she knows I’d rather have him snuggling on my chest, but since I can’t, at least I can wear this necklace and keep Elias close to me.

I cried my eyes out, and my husband was equally touched, although he rarely cries. He said, “Only D could have given this to us. Only D could have given us such an incredible gift.” And he was right.

We both took a day off of work on the twins’ birthday. We had no set plan, and we weren’t sure what to do. In the morning while Evy was napping, we went through Elias’s memory box. I looked at every single card given to us when he had passed away and from his memorial service. I laid them out and took a photo of them, although I’m not sure why. My heart just felt so full of gratitude to all the people who had mourned the loss of our son with us.

I reflected on all the thoughts of those early days and how things seem a lot different now in my mind and in my heart. So many irrational thoughts had been put to rest that week of their birthday. Memories and flashbacks had come to me, and upset me, and then I talked about them to my husband and my therapist who both helped me to realize I had been harboring many feelings even one year later that either made no sense, were completely illogical, were irrational, and were simply unhealthy. When those things were realized it was a weight off of my chest, and that happened on the anniversary of the last time I had heard his heartbeat. That in itself was an amazing gift that I feel my son most definitely had a hand in.

I thought about how my life was enriched by having known him. I thought about how he was so much a part of me, is a part of me still, and will always be a part of me, and I smiled at that thought. I thought about the amazing support system I have found through other loss parents and how my son has brought me out of my little sheltered bubble and into a global community of people who daily amaze and inspire me with their writing, meditations, and art. I thought about how I am a better person for being my son’s mom, how my life has changed in more ways than I can ever articulate, how I live more fiercely, how I push life against the wall and get what I can from it instead of being a silent witness of others’ lives, how I don’t let my fears hold me back anymore, how I refuse to let my son’s legacy be sadness and darkness and misery. I want him to look down and see that we are survivors, that he has brought us so much more than pain and loss, that he has brought us immeasurable gifts that are endless. I thought about how he has taught me the true meaning of unconditional love, and how amazing that feels, even though it also hurts so much sometimes. My heart was just overflowing with thanks to my sweet boy, all the while missing him intensely and wishing he could be here with us.

My sister visited and gave Evelyn her first birthday presents, and we got an adorable shot of her with a big pink bow on her head (which we later used for her thank you cards), wearing a dress with butterflies on it of course. Evelyn loved her presents, and I was so grateful that her auntie was able to shower her with some lovin’ and pampering, as our focus that day was admittedly our son. She gave us a solar butterfly for our yard, and my aunt baked two smash cakes, which we ended up eating Elias’s while Evy smashed hers. (It’s what he would have wanted, right?)

We spent most of the day at home as a family, and that felt perfect. However, my parents stopped over, and deliberately at a time when Evelyn was down for a nap. It meant a lot to me that they did that, that they wanted to spend time with us apart from her, to take time to be with us and remember our son, their grandson. My mother gave me a card with a beautiful message in it, and she had written his name on the front (and it was a beach card, so his name was in the sand, so cute). She had bought a butterfly-shaped mirror from Pottery Barn Kids, which seemed the perfect tribute for the day, as I could hang it in Evelyn’s nursery but it would be in memory of Elias. And one day she will look in that mirror and see her reflection and perhaps feel his connection there.

The topic of his photos had never come up before really, and I didn’t know how to bring it up, but I managed to do so, telling my parents about D and how generous she had been sending gifts for our twins, and how talented a photographer she is, and then I changed the subject (I didn’t want my parents to feel pressured to view his photos with us). Well, my mom brought it back up, and so the four of us sat and viewed the disc from D of his photos as a slideshow on the TV. Everyone was silent, other than at one point, my mother said, “I’m so glad you have these, Lindsay.” And the best part was that she meant it. And that meant so much to me. After, we had a really nice discussion about how the culture of loss has changed (compared to the old days where they wouldn’t let you see the baby), and I talked to my parents about how inspiring this community is to me. It was a much-needed conversation and felt like we were really clearing the air of a lot of our unspoken thoughts on all sides; it was extremely refreshing. I felt like pieces of my shattered heart were glued back into place, some of them, and I could breathe with more ease.

We went to the park where there is a butterfly engraved in stone in our son’s honor (with his name by it), and we released a single baby blue balloon for him and said a prayer.

We went out to eat, the five of us, and we weren’t there five minutes but I felt arms around me, someone hugging me from behind. “Oh my God!” my husband exclaimed. I turned to see D standing there, arms extended, tears streaming down her face. I couldn’t believe my eyes. She had never been in this restaurant before; it was a last minute thing, and she had NO clue we were going to be there. But, of course, she knew what day it was. For her to be on the other side of town and at the exact same place at the exact same time as us one year to the day that she photographed our twins after one was born alive and one not?!?! It was all just too much to even process, and I’m still tossing that one around in my heart and mind, but I mean it when I say that it made our day. I introduced her to my parents, who had just seen her precious photos, and that warmed my heart, too.

It was like the missing piece to our having a perfect day had miraculously fallen into place, and it was a piece we hadn’t known was missing until we saw her.

D and I stood in the middle of Olive Garden, hugging and crying, while strangers ate soup and pasta and were ignorant of all that was transpiring in our hearts in that moment.

And yes, it made me stop, and think. It still makes me stop, and think, and wonder, and thank my son yet again for his endless gifts and lessons. I do not know how this world works, and that’s going to have to be okay.