"Friends"

So even though I'm kind of in a place of nonsharing, I must share this. Staying busy HELPS me with my grief. It DISTRACTS me. It gets me OUT OF MY HEAD, out of my nasty thoughts and emotions, out of my pity party. You know what I've come to notice over the past year? If I want to do something with friends, 90% it is up to ME to get things going, invite people to do something, etc. I have always been THAT person - one who likes to get people together for parties big and little, one who likes to catch up with a friend over lunch. After our loss, I just want to say, WHERE THE HELL ARE ALL OF MY FRIENDS? I feel comfortable saying that here because by and large my "friends" do not know about this blog. But seriously, WTF. Do I have "dead baby plague"?

Further, I want to say, on behalf of myself and everyone else who is facing isolation from friends who put little to no effort into the relationship, do people REALLY expect grieving parents to be the ones to put effort into maintaining relationships?!?!? I am not saying that losing a child means you get to just throw your hands up and let everyone else do the work in maintaining a friendship, but seriously, you can NOT expect much from people who are facing the most horrible thing imaginable in their lives. I, us, ALL of us out here, deserve to have friends who step up to the plate and make things happen. We shouldn't have to lose our friends on top of our babies, unless we are being complete jerks and ignoring everyone's calls for months on end and unable to emerge from our hermit-like state.

Today I had a coffee date with a friend, one who actually puts effort into seeing me and having a real conversation with me, which was nice. I have a few friends like this, thankfully. But seriously. People know I teach, and they know I am on break for two weeks, and yet I can count on one hand how many people have actually contacted me to make concrete plans to get together. Two coffee dates, one lunch date, and one NYE party invitation.

I am grateful for those four people and the effort they put forth. I really am. But there is WAY too much down time around here. (It doesn't help that my husband could care less about having a social life and puts NO effort into inviting people over or getting out of the house.) What really burns my butt is that I have had friends completely disregard my twins' birthday and subsequent party. And I mean, completely. As in they didn't RSVP no (it was regrets only) so we expected them, then they didn't show up, and then they never told me why after the fact. (Please tell me if you think I'm over-reacting!) I find that a really hard pill to swallow, considering anyone who knows me knows how difficult and complicated their birthday would be for me and how much I NEED the support of my friends and family. I know that the world doesn't revolve around me (clearly, and thankfully), and that everyone has their own personal struggles and even tragedies, but that is just ONE TIME the entire year that I think really defines for me who is a friend and who isn't. Even people who weren't included in their birthday party gave me cards, little gifts in memory of Elias, or just a kind word or hug letting me know they're thinking of me during this complicated time of joy and sorrow. I am left feeling a little abandoned and much confused about those who didn't.

You know what's messed up? I'm kinda happy about this post, because it's the first time since my son dying that I've been able to get kinda fired up about something like this. That's progress in a way, right? I mean this is progress compared to, "I don't care what anyone does ever. Nothing matters. My son is dead, end of story." I am actually capable of getting fired up about people being assbags. I know people have their own lives, and I'm happy for that, but if they made little to no effort to be of any support to me this year or ever get me out of this house or out of my head for a while??? Well, let's just say I'm hearing what they are saying loud and clear without their having said a word. Which is pretty much the whole point. Silence speaks volumes, doesn't it?

A place of non-sharing, one year out.

I don’t know why but right now it’s just becoming more and more difficult to share anything here. I know that not many people “in real life” even know about my blog, but it IS public. I don’t want to go private at this point. But some days it just hits me that this is where I share some extremely personal thoughts, and I just don’t know if that’s okay or not. Grief is a private thing, right? So why did I even create this blog? I’m asking myself these questions and not coming up with answers.

I feel selfish in that I write more here about myself than I write here about my son. It makes me sad that I don’t know more about him. It leaves me feeling so heartbroken and empty that I don’t know what he would have been like or who he would have turned out to be. (And while I'm thinking of it, if you'll allow this tangent, let me just say this. I can’t stand it when people say, “Oh it must be SO difficult to look at your daughter and think about how your son would be doing the exact same thing had he lived.”…and yes, this is actually something I have heard literally and several variations of it…How freaking idiotic can people be? I don’t think there’s a set of twins out there who do the exact same thing 24/7; in fact, I’m pretty sure that would be impossible…And just because they were born on the same day doesn’t mean they would have hit the same milestones at the same time…They were over a pound apart weight-wise at birth, just as one example…OH and they were also different genders! And we can’t forget the tiny little fact that they were two completely separate individual human beings, different DNA and all that, can we? Apparently, some people DO forget. Two.separate.eggs.two.separate.sperm. I think I should start busting out diagrams for people when they piss me off.)

So back to my question, which is by writing here am I really honoring my son’s memory? It sure doesn’t feel like it. I don’t feel like I am ever doing right by him, just as I rarely ever feel I am doing right by my daughter. A friend and coworker the other day described me as living life with “an impossible situation”. It’s an understatement, sure, but Truth. Nothing I ever do feels right. Grieving while I have a beautiful daughter snoozing in her crib upstairs seems horrible. Enjoying life while I have a son who never got to breathe a breath seems horrible.

Maybe I should just try to be numb all the time and not feel anything so I can stop feeling so freaking guilty about whatever I’m feeling. But that would require drugs, and I’m not all about those.

So that’s it. I’m in a place of nonsharing, and it really sucks. I feel I am betraying Elias by not writing here enough. More guilt. *sigh* I'm also dealing with not knowing where I stand with almost everyone in my life. I see why the statistics are not in favor of couples staying married after a loss. I see why Those Who Have Lost Before speak of losing friends and family after a loss. Early out, I thought NO way, that won't happen to me. Well, a year out, it's happening, some of it at least. I just don't know who I can trust or lean on anymore. I feel VERY judged to still be so sad and be over a year out, like there's an expiration date on my grief, and we're past the point where it's acceptable. Like at some point you are seen as "the crazy lady with the dead baby" instead of a human being with a right to grieve, a person who has been thrust into an impossible situation every minute of every day for the rest of her life.

Soon

Soon I will update you on what ONE YEAR post-loss feels like. That was yesterday for us. Today we are preparing for our daughter's birthday bash for tomorrow. I will say this - I'm feeling pulled apart by the seams - grieving my son who I wish had turned one year old yesterday while celebrating my daughter who DID turn a year old. I put together a Facebook event and was overwhelmed by the support of both people in AND out of the loss community. It helps, in my opinion, to allow them to have their own separate days (as much as possible). Grieving and partying at the same time don't really jive, do they? *sigh* I will write a "one year" post soon.

Hating. Sobbing. Stagnating.

Super depressed. Rehashing and rehashing and reliving everything all over again. Hating that I can't go back. Hating not knowing if I even could have saved him, if the doctors even could have saved him, hating that we never even got a chance to try, hating that we didn't just do a csection at 36 weeks, hating that we didn't KNOW he needed to be out, hating that I tried so hard, prayed every day, and believed I would bring him home...only to lose him. I hate this. I know that of all the tests they run and all the things they look for he only missed a couple of points. But it haunts me every day to not know if that was an indication of something wrong or not. Was he really okay or already compromised?! Were they justified sending me home or should they have known to take him out?!?! I will never know for sure the timeline of events the last week of his life. I will never know WHY he bled out. My placenta did not abrupt. I did not have pre-eclampsia. This is just infuriating. A year out, I'm still infuriated. Devastated. I don't know how to "move forward". Not move on, but move forward. I feel stuck because of all of the unanswered questions in my heart and mind. I feel like I don't even know my own son's story. What kind of closure will I ever get when I don't even understand what happened???

Are you seeing (or have you seen) a therapist after babyloss?

If so, if you could so kindly leave a comment answering the following questions, that would be awesome. (A fellow BLM of mine offered to do a training for the Postpartum Health Alliance in San Diego for therapists on Perinatal Loss.) She would like to know 1. What did you find most helpful from your therapist?, and 2. What did you find least helpful from your therapist? My own therapist experiences I will gladly share with you (and her) soon, but I am exhausted and, well, it's not a post I can just throw together. I have had some wonderful experiences with therapists (well, one of the three I've seen), and I've had some pretty bad experiences as well. So if you are willing to share to help my friend gain some insight for her training, share away. (For the record, my friend is also a loss mom. She lost one of her twins the day before her induction date at 38 weeks. So don't be shy - she "gets it"!)

Missing Him.

What would he have been dressed as? I really don't know for certain. What I do know is that I would have loved to have had two baby pumpkins to lug around on Halloween. I look at her and wonder what he'd be like, who he'd look like, and how they'd interact with one another. My heart is so full of love for both of them yet so broken and full of missing him. I didn't expect this holiday to hit me so freaking hard, but it did. It's not like I had the twins' costumes all planned out and coordinated with one another; I wasn't that kind of twin mama. I wanted to celebrate them as separate individuals as much as possible and maybe would have done some cutesy stuff like that once or twice, but not much beyond.

But then, obviously, it isn't about the costumes. Or loss of being able to dress up both of my babies together, coordinating costumes or not. It's about the loss of a HUMAN BEING. The loss of my son. His first Halloween - what a stupid silly trivial loss in the big scheme of things. But the whole of the loss of him, the entirety of it, is just too much to process at once. So I focus on one thing at a time, and I mourn that thing. And this Halloween, I mourned the loss of purchasing his costume, dressing him up, and taking him door to door. My husband and I should have both had a baby in our arms instead of taking turns with one. We should have had people oooohing and ahhhhhing over our twins.

A good friend of mine brought her husband and daughter over (she was born three days after our twins), and at each house we trick or treated at, I kept worrying that the people would think they were both mine. Or that we would see confused expressions. But since there were clearly four adults and two babies, it didn't cause any confusion. I was relieved but also a little sad to think there couldn't possibly be anybody who may have thought they were both mine, remembering I had been pregnant with two. I wondered if people forget so quickly. But then, anyone who knew were were having two also knew he had died. So I don't know why that was even on my radar.

Once back at home, we turned the porch light on to let kids outside know we had candy to give out. After all, we couldn't keep our girls out long. It was chilly and nearing bed time. I thought about how lucky we were to know this couple. I thought about how at LEAST Evelyn would have a same-aged friend to play with at times. I thought about how much more difficult it would have been to trick or treat without this couple and their little girl and how without them there I would have felt the holiday anti-climactic and perhaps even lonely.

Suddenly, a little boy stumbled up the stoop, peered inside our screen door, saw the girls crawling around, and said, "Wow! Two babies!"

I felt my heart stop.

"You have TWO babies? You have a LOT of children!"

He was maybe six years old. He had no idea he was tearing the heart out of my chest and ripping it in half. I couldn't say anything. I just threw a piece of candy in his bag and didn't even look at him. I gave him an extra piece even, as if that would make him go away faster.

If the word "twins" had come out of his mouth, I would have lost it right that second. I waited for it, having a mini panic attack of sorts. If he had said that word, I would have been a blubbering mess, crying all over innocent children's candy. Somehow, it didn't.

When I went to bed that night, I just couldn't stop crying. Sobbing. My husband was already fast asleep, and there I was, shaking the bed with my sobs. (He's a very heavy sleeper.) I finally just got out of bed and took a shower. Somehow, that had a calming effect, and I was able to fall asleep after. But oh, the longing was so strong. I felt like I was going to die, and I don't mean that as an exaggeration.

In those intense moments of grief, it feels like it will never get better, the pain will never subside, the air will never be easy to breathe, your heart will never feel light and free, and joy will never return. Suddenly, it seems so reasonable that people die of a broken heart, and I just wait for mine to stop working, but for some reason it keeps beating.

"Help, I'm alive, my heart keeps beating like a hammer." ~Metric

Happy 1st Halloween, baby boy. Oh, how I miss you. I carved this pumpkin just for you. I wanted to carve one for you, because this would have been your first Halloween, and you are still a part of our family. You will always be a part of our family. A butterfly pumpkin for my precious son Elias. It's not enough, and that breaks my heart, too. Nothing is never enough. Nothing can ever be enough for me to feel I am honoring you properly. I want to go back and save you. Anything short of that just isn't good enough.

I love you, to the moon and back, my forever baby, my son.

The inspirational BLM are on a roll...

I am overwhelmed with inspiration. This is the stuff that keeps me afloat, keeps me from staying in bed all day sobbing, as I am surrounded by reminders of being on bed rest last year and all the yucko feelings that come along with those flashbacks. This is about the time last year that I had to stop working and go on full bedrest, so I'm having a horrible time remembering how scared I was and how much hope I had a year ago and how both of my babies were alive at that point and at least had a chance to live...If only. I just shared with you the babyloss calendars made by two lovely women from the BLM community. And now, a blog post read by one of the most incredible writers I've been blessed to "meet" along my grief journey. Take a listen.

Babyloss Calendars

These are absolutely stunning. Carly and Franchesca are just so incredibly caring and talented.

Candlelight Ceremony

Yesterday, I spent a great part of the day getting the perfect photo taken, edited, uploaded, and tagged for all my BLM friends for International Pregnancy and Infant Loss Remembrance Day. I reached tagging limit easily and had to upload the same photo three times. I also listed all the names of the babies under each photo (of the women and men I tagged). This was very healing, very therapeutic for me, but also very time-consuming.
In other words, I have more BLM friends than I realized. This is a blessing, to be surrounded by people who "get it", but oh so sad. So sad that so many people have lost babies. And I only friend a fraction of them, because if I friended every BLM I "met" on FB, it would absolutely overwhelm me and I'm positive I would exceed the limit for friends very quickly.

When I was done, I was pretty much emotionally drained. I couldn't believe that it took so much out of me to just sit on the computer for a while and do this little "project" of mine to pay it forward. I expected to feel good and pumped to go to a remembrance ceremony at a local bereavement center afterward (as funny as that may sound), but I was just feeling "blah".
I knew I would be given a wonderful opportunity to honor my son's life and to meet up with some local BLMs who have become friends of mine, but I was just in a funk from the very moment I left the house.

On the road, I realized my heart was so very heavy. I met up with some BLM for dinner, which was great, but I just kept thinking how I never in my life EVER expected for THIS to be what planning a family led me to.

A life sentence of memorial services, of feeling desperate to get others outside of the community to acknowledge my perfect, gorgeous, fully-formed son while they so readily ooooh and ahhhh over my daughter. Some days I feel like the worst mother, because I get resentful of the compliments I get...I just want to say, "I have a son, and he was gorgeous too! I don't know what color his eyes were, but I bet they were every bit as spectacular as hers!" I wonder if he's jealous of the attention she gets. Other days, on rough days when I am mourning him or spending a lot of time with blogs or other things in the loss community, I wonder if my living daughter is jealous of the attention her brother gets.

Nothing I do is ever right, STILL, after all this time. Either that is parenthood for everybody, or I am just ridiculously hard on myself, but I don't know any other way to be. I am constantly being pulled away, pulled at the seams.
I want to be here, 100% here, for both of my living children. But I have one living child and one deceased child instead of two living children. And so I always feel 50% here for one of my children and 50% able to grieve the child I lost. I'm not 100% at anything ever, and the perfectionist in me can't stand it. God am I far from perfect. I am so freaking imperfect I can't stand it.
I feel myself giving up on trying to be perfect, because I can never be perfect and have a dead son at the same time.

I adore the people I have met in this community, and I am not quiet about it - some of these people are the most inspirational and loving souls I've ever met, and I feel priveleged to know them and their stories. The outpouring of support on my FB page from people in AND out of the loss community was very heart-warming yesterday.

The ceremony itself though was not what I expected. I don't know what I expected, but I know this wasn't it. Maybe ten months out is just too early for that kind of thing. I felt very exposed under harsh lighting and a smaller room than I expected to be in. I think it is still VERY difficult for me to publicly acknowledge my pain. And shame has crept up in fierce ways, probably because I keep reliving what I was doing last year at this time. Bedrest in hopes of keeping my babies safe. You have all heard me talk about that like a broken record, so I won't recount it again. I was such a fool, and I am ashamed.

I feel like an idiot for not being able to keep my son alive, for not KNOWING something was wrong when it was wrong, for having BACKWARDS intuition that told me over the course of the entire pregnancy that something was off but then the week he died feeling peace and thinking everything would work out in the end.

I expected to connect with others during the ceremony and feel uplifted and in tune. Instead, I felt awkward, hot, self-conscious, loathsome, and freakish.

I expected to leave the ceremony feeling empowered, inspired, enlightened.
Instead, I lit a candle for my son and just felt like I failed him so deeply. Failed him in the worst way. And lighting a candle seems so miniscule compared to a loss so massive. Nothing will ever fill the void. I felt stupid for presuming that something so simple could be healing. I mean what's the point?

I took my seat after lighting the candle and felt like a failed mother. They asked us to meditate or say a prayer and then extinguish the candle, and I thought "What's the point in praying?" and felt that in blowing out the candle I was killing his memory somehow. It was not exactly a comforting point in the ceremony for me.
I tried talking to a few other people, but they all were so composed compared to me, and I felt increasingly self-conscious and claustrophobic and like a freak even amongst "my own kind".

Perhaps I need to do more grieving in private before I can do something like this again. But I will go again next year, and the year after that, and the year after that, because even if it's in the smallest of ways, I do get to mother my son by honoring his memory. And I will take any chance I get to mother him, because those opportunities are few and far between.

The center that put this candlelighting ceremony on is non for profit, and I think what they do is amazing. Although I wasn't in the right space mentally and emotionally for it, I can see others benefit from it. I absolutely adore the candles they made for each baby remembered. I edited the photo of Elias's candle so I could post it here, but the actual candle has his full name on it and will make a perfect "presence" during holidays and special occasions.

It's Sunday, and I'm so tired. I don't know why I thought this weekend wouldn't be emotionally overwhelming and exhausting. I am ready for a few days off of work to recover, seriously. I'm just so down right now. I hate when I feel this way. I want to hold my head up high and show my son I'm a survivor, but right now I just feel like I failed at the most important thing I was ever called to do, and I can't stand the sight of myself.

I love you, Elias. Always and forever. Even though I do not feel worthy of you, and maybe, just maybe that's why you were taken from me, I will never ever blow the candle out that burns in my heart for you every single day. You are my son, today and all the days I have left on this earth and beyond. To the moon and back, baby boy. I love you.

Remembering

This is a candle I lit last night in honor of my son Elias and in memory of all the babies lost to my friends. If you are reading this, and you've lost a baby to miscarriage, stillbirth, or infant loss, then this candle was lit for you. I was saving this candle for a special occasion, and October 15th is the perfect date to share this. The Willow Tree angel holding a baby was given to me by my mom and usually sits on Elias's remembrance shelf. Let us take a moment to think about how many families are missing their babies today and every day. Also, here's a very powerful article that has been making its way around Facebook, one BLM at a time, about the heartache of infant loss. And, finally, facts versus myths regarding pregnancy loss. Keeping you and your babies in my thoughts and in my heart, today especially.

It's a Pity Party, and I'm Invited.

How much did I lose on my journey to start a family? Is that even something quantifiable? Sometimes, when I think about it all, I get so overwhelmed, so I'm going to spill some of it here to let it loose and begin to work on letting it go. Because self-pity is not my style, truly. It just doesn't suit me, nor does it honor my son.

What I lost...
-My first pregnancy ended in a completely unexpected early loss (I had no idea you could have a miscarriage without any symptoms of bleeding, cramping, etc…)
-Months of my life out of grieving and trying to recover from the blow of my miscarriage.
-Months of my life trying to conceive again (wherein I felt a profound sense of loss every single time my period showed when I just wanted a positive pregnancy test).
-The happiness of just being *pregnant* because I was terrified of bleeding and miscarrying again.
-The joy of having an ultrasound because at the first one and every single one thereafter I was terrified there would be no heartbeat.
-The joy of a “normal” pregnancy, because with twins I was high risk and had to worry times two, even though I was already worried more than your average pregnant mom before ever hearing the words, “There’s two in there!”
-The excitement of finding out their genders, because I was convinced something would be very wrong with one or both of them or that they would see my cervix shortening prematurely which would indicate I could very well lose them both.
-Feeling “normal” and “functional” at work because I couldn’t move around like I needed to or focus on any task in front of me.
-Not being judged by others, as suddenly people were criticizing me (sometimes openly, sometimes behind my back) for being so cautious and being a “worry wort” (clearly not understanding the psychology of pregnancy after a loss!), “oversensitive”, “living in the past”, and/or “a pregnant diva”, all because I wanted what was best for my babies and was willing to sacrifice whatever might make them safer and healthier. (Apparently I was expected to climb two flights of stairs up to fifteen times a day while in the third trimester with twins without going into a panic about preterm labor.)
-The joy of a “normal’ pregnancy and feeling like being pregnant with twins was very literally a subculture in and of itself that none of my friends (other than other twin moms online) understood.
-The ability to talk lightly about my due date with people who would ask, because “Well my due date is 12/31/10…But twins come early, so it could really be any day now” (followed by looks of shock and horror that I would say something so NEGATIVE when I was just stating what I had been told hundreds of times by various medical sources…Again, with the twin thing being its own subculture that many people do NOT understand…)
-The ability to freely purchase all the baby things I wanted / needed, because I would somehow “jinx” things the way I must have jinxed them before when I bought a few things and ended up miscarrying.
-The ability to work until my water broke, as I had fully intended when we planned to have a baby.
-The freedom to not do seven weeks of bedrest wherein I turned into a complete and total hermit and felt completely disconnected from my friends who mostly did not visit nor make a point to support me during one of the most trying times of my life. (Bedresters are their own subculture as well…)I had the joy of hearing "Oh just ENJOY this time! It's like a vacation! You just wait until those two little babies are here...You will be sorry you didn't just relax and enjoy all the peace and quiet of not working and having bedrest!!!"
-The freedom to drive places, eat out at restaurants, go shopping, get a breath of fresh air while taking a brisk walk, amongst many other things so that I could do bedrest in hopes of ensuring the health of my children.
-The luxury of asking my husband to go out and get me peach frozen yogurt and rub my back, because he was too freaking busy taking over the care of the entire household, chores, and meals, while I was on full bedrest.
-Feeling closer to my husband through the pregnancy instead of feeling like I was a burden because of my lack of mobility.
-My privacy, as I pretty much lived on the couch in our family room for a month and a half.

I lost all of that and then some. I did it all and then some, to bring my twins into the world whole and healthy, and then one died anyway.

Meanwhile, surrounding me were women who were very careless with their pregnancies, women who even blatantly ignored doctors’ orders and seemed to flaunt it in front of me, who all (thankfully) delivered live, healthy, breathing babies despite their complete ignorance and carelessness.
Ten months post-loss, I get to read an article about a woman who ran a marathon without any regard to how dangerous it could be if she tripped and fell on her stomach while pregnant. She and the baby were (thankfully) just fine. She even got fame for it.
I also get to read articles about women who seek no prenatal care at all and birth living, breathing, healthy babies only to kill them out of complete negligence or intentional murder.

What do I get? I get eight months of “I’m so proud of you!”s followed by a lifetime of “I’m so sorry!”s and people pitying me, hoping that babyloss isn’t “catching”, trying to avoid eye contact as they pass me, and secretly judging me STILL. Judging me for how I acted during my pregnancy, judging me for how I handled everything, judging me for going back to work “SO quickly!!!”, judging me for leaving my daughter with loving family members while I go back to work, judging me for wanting to acknowledge that I am a twin mother, judging me for recognizing that I will always have a son, judging me for connecting with other babylossmamas, and secretly blaming me for the death of my son. Because healthy women under thirty years old who do bedrest and follow all the doctor’s orders just don’t end up with dead babies. So clearly, OBVIOUSLY, I must have done something wrong. They tell themselves this, because it helps them sleep better at night; it protects their Faith, and it eases their fears that a horrible tragedy like mine could happen to them.

For the record, I am not bitter about my bedrest. I mean that from the bottom of my heart. I believed in it, and I was happy to do it, but I won't deny that it was very trying.
What I do resent is thinking that all of that would equal a happy outcome, because I really did, and this loss just completely blindsided me.

ALL of this, when you look at the entire picture, was / is incredibly traumatizing to me, and I don’t think I fully understand the psychological or emotional impacts of it all on my heart, my mind, my identity, my life. I don’t even feel I have recovered from the miscarriage, let alone all that followed, and the feeling like I could NEVER do enough for my babies…and then one died anyway. I am just trying to process all of this and what it means in terms of who I am and how the pregnancy, not just the outcome, but how all I endured during the pregnancy in and of itself has profoundly changed me. I sometimes think those are the things I struggle with in terms of PTSD even moreso than the loss, just the everyday mental torment of never feeling I was ever doing enough for my twins. All the books I read that said how much sleep I should get, how much water I should drink, how many calories I should consume, only for me to vomit daily and feel I was failing my babies daily, even though they grew right on track and were healthy at every single checkup.

I tried so hard to do everything right. It consumed almost all my thoughts and was my identity for the eight and a half months I carried them.

Bringing them home safe meant more to me than anything in this world. It was my greatest challenge, and my greatest blessing, even with how difficult it was on me mentally, physically, and emotionally.
How can I not feel I failed?
How can I not feel everyone is disappointed in me?
How do I ever reconcile that in my mind and in my heart?

I would sacrifice everything all over again if it meant he could be here with me.
I would lay on a freaking couch every second of every day for an entire year, for an entire decade, if it meant Elias could come back to me.
I would give up my job, my social life, my favorite restaurants, every holiday there ever was, every shopping trip, walk in the park, and family outing.
I would endure just about anything.
I would give my own life.

But I can’t.

Instead, I have to live without him.
Live without him, and live with knowing (in the logical part of my mind) that I did everything I could and then some, while others are careless and for whatever reason get rewarded for their carelessness.

The loss of my son.
The loss of the unique parenting experience that is raising twins.
The loss of my daughter’s same aged brother.
The loss of my faith in prayer, in a God that intervenes, and in a God that is looking out for me and my family.
The loss of my understanding of the world.
The loss of believing there is any sense of logic, reason, or order to this world.
The loss of my world as I knew it.

What else must I lose?
Friends who don’t want to be reminded that horrible things sometimes happen to good people?
People being proud of me, because how can you be proud of a woman who couldn’t keep her baby alive?
My marriage?
My self esteem?
My self worth?
My identity?
My morality?

Who knows where the loss will end, if ever, for me.
It’s a pity party, and I’m invited.
I’ve gone from being a member in the subculture of being pregnant with twins and feeling misunderstood, to the subculture of being a bedrester and feeling judged, to the subculture of being a babylossmama and feeling ostracized by society. I’ll never, ever, ever be “normal”.

And during my next pregnancy, whenever that may be, I will still be cheated.

Cheated out of the joy of a blissful, ignorant, naïve pregnancy that most women get to experience.
Cheated out of thinking a positive pregnancy test means I will have a live, breathing, healthy baby at the end.
Cheated out of thinking that a full anatomy scan that shows everything is fine means I will have a live, breathing, healthy baby at the end.
Cheated out of thinking that once we are “viable” we will have a live, breathing, healthy baby at the end.
Cheated out of thinking that once we are past the danger zone for prematurity we will have a live, breathing, healthy baby at the end.
Cheated out of thinking that once we are at term we will have a live, breathing, healthy baby at the end.
Cheated out of thinking that multiple ultrasounds and non-stress tests and biophysical profiles that all turn out with normal results equal a live, breathing, healthy baby at the end.
Cheated out of the excitement that ensues when a “blissful, ignorant, naïve” woman’s water breaks.
Cheated out of the excitement of packing a hospital bag with cute fuzzy socks and granola bars and coming home outfits and assuming that all will be peachy keen.
Cheated out of assuming that babies don’t die and that God is on my side so nothing will happen to me or my child.
Cheated out of hanging around the hospital chomping on ice chips and asking for my sister to get my chapstick and a tabloid for me to flip through to pass the time.
Cheated out of having my husband hold one of my legs while my mother holds the other and I deliver a live, breathing, healthy baby at the end.
Cheated out of even thinking that a planned c-section will ensure a live, breathing, healthy baby at the end.

Cheated, robbed, and ripped off.
From the joy of pregnancy, birth, a hosptial stay, and the “afterglow”.
There will always be one missing.
Two missing, to be exact.

And I don't know if my mind and heart will heal from being battered so.

And yet, the baby to come, the baby we are yet to conceive, the baby we aren’t even thinking about trying to conceive yet…Would not even have the potential to come into our lives had Elias lived.
So will I love that child that much more because of it?
Will I learn to resent that child because of it?

I think I will just miss my son, no matter what, and I will love my future child(ren), no matter what.
But what I’m hoping is that all this loss is over with, someday, somehow.

What I hope for is the ability to overcome these feelings of loss, to some degree.
To learn to enjoy pregnancy by embracing my utter lack of control over the outcome, which I was never able to do last time, or the last two times, to be exact.
To recognize that the end result is that I have a family, and even if my road to that end result is a rocky and terrifying one, I am lucky to have a family at all in a world where some women only experience infertility, loss, and no living children.
To recognize that I have delivered a living child, and I mother a living child, and her name is Evelyn, and she is the most beautiful baby girl I have ever seen, and no one can take that mothering away from me. Not today, not ever, no matter what.
To recognize that even though Elias died, our hearts in that hospital were so full of love for him…That the pain of his loss sprung from how much love we had, and still have, and nobody can take that love away.
To recognize that I am still a mother to twins, and I still have a son, and no one can take that away from me, and it’s part of who I am, forever.
To recognize that Elias is always with me. Always. He may just be my spirit guide, a butterfly flying free, a star in the sky leading me to live better.
To recognize that there were joyful moments with our daughter in that hospital, and during my c-section, when the doctors held her up for me to see, I knew I would live.

Abiding

I wanted to share this with you, because it's just so incredibly well-written and moving. Thanks to Kate for her beautiful words. ♥

International Bereaved Fathers Day

(Previously known as International Babylost Fathers Day...not sure why the name changed...I like the "Babylost" adjective personally because that is a descriptive term SO many of us use in this community...If any of you know why Carly changed the name, please explain. I'm just wondering is all. Regardless, I think it's a wonderful thing that she has made this an international holiday. xoxo)

Today, in remembrance of all the babylostfathers I know personally and all over the world, I share this photo taken by Carly Marie along with a poem. You are all such amazing fathers in the way you honor your precious babies through living your lives to make them proud, supporting your wives, and finding your way toward hope in a time of darkness. Please do remember that you need support too, that you deserve support, and that many people care about you and want to honor your baby's memory along with you.



It must be very difficult To be a man in grief. Since "men don't cry" and "men are strong" ... No tears can bring relief.

It must be very difficult To stand up to the test. And field calls and visitors So that she can get some rest.

They always ask if she's alright And what she's going through. But seldom take his hand and ask, "My friend, how are you?"

He hears her cry in the night And thinks his heart will break. And dries her tears and comforts her But "stays strong" for her sake.

It must be very difficult To start each day anew. And try to be so very brave- He lost his baby too.

"A Father’s Grief" By Eileen Knight Hagemeister

Really, God? You let these women bring home healthy twins?

My anger is flaring up these days. I just want to say, w...t...f? Why were these two women able to birth and bring home (or, in one case, birth AT home...) two healthy twins only to cut their lives so short? Any time I say to myself that I must not be LUCKY enough or SPECIAL enough to be a mother to living twins, I'm going to remind myself of these stories...These women certainly are NOT special people. They certainly weren't "deserving" of twins, any more than I (or any of you) was UNdeserving. There's no deserving or not deserving, special or not special, it's just the toss of the dice, I guess. I've been thinking a lot about how loss is not evenly parceled out, and I will write more on that later. But articles like these, they get me to a whole new level of angry. You know what else they do? They affirm to me that there IS NO "PLAN". That THINGS DO NOT HAPPEN FOR A REASON! THERE IS NO REASON FOR THESE SAD EXCUSES OF HUMAN BEINGS TO HAVE HEALTHY TWINS WHILE SO MANY OF US WANTED OURS WITH EVERYTHING IN US AND WOULD HAVE BEEN CARING COMPETENT LOVING PARENTS TO THEM IF GIVEN THE CHANCE TO HAVE THEM BOTH HERE WITH US ON EARTH. WHAT COULD THE REASON BE TO JUSTIFY HAVING ANY OF THIS BE PART OF A PLAN? I need to stop before I say something that really pisses someone off. I think these articles speak for themselves, anyway. They speak to me, "This world is chaos. Complete and utter chaos."

http://news.yahoo.com/11-month-old-twins-die-being-left-bathtub-143618085.html

http://www.ksee24.com/news/local/Mother-Kills-Twin-Babies-Shortly-After-Birth-Hides-Bodies-in-Laundry-Bin-129957793.html

Remembering Madison

I decided to share my remembrance images here as well as my FB, as I've realized many of you aren't on FB and won't see them. This is an image I edited for my friend Heather. I remember when we first met through the twin forums, discussing our pregnancies, our diets, our plans, what twin books we were reading, and all the anticipation, anxiety, joy, and excitement about what was to come. Neither of us at the time knew the unexpected turns both of us would be forced to navigate on our paths to becoming twin mamas. I am so glad that we stayed connected. Thinking of her precious Maddie today and hoping that Heather is surrounded by love and peace as she navigates this time of celebration and mourning. I just know that Jack, her survivor, feels twice the love from his amazing mama.

Pink Bear, Blue Bear

Did that really just happen??? Did I REALLY just have to sit and listen to a woman talk about her boy girl twin pregnancy for over a half an hour? Oh, and did I mention that her boy girl twin pregnancy was SIXTEEN FREAKING YEARS AGO?!?!?! How is that even RELEVANT? The people around her weren't even asking her questions or prompting her or anything; she just kept flapping her jaw as if she couldn't stop or couldn't think of any other topic worth talking about.

Does the universe just HATE ME?!?!?!

I have very good reason to believe this woman knows very well about our loss. We know mutual people. That is all I’m going to say. And yet she sits at the same table I’m at, of all the tables in the room, and proceeds to gab to the people sitting with her about her pregnancy that happened almost two decades ago…!?!??!

Blah blah blah blah blah. Really?!?!

Did she just NOT know? And if she DIDN’T know, why does she feel the need to go ON AND ON about her pregnancy like she’s a freaking celebrity for a half an hour + ??? Is she OCTOMOM? Does she want an award?

And if she DID know about my loss…I just don’t even know what to say to finish that sentence. I am going to hold myself back, since I do not know who will be reading this. And in my mind I am going to tell myself that she really didn't know, because any other scenario makes my blood freaking BOIL. But omg.

I know this sounds incredibly narcissistic, but I can't help but feel The Universe is flipping me the bird yet again. Twisting the knife yet again. Saying, "Why don't you just go kill yourself already? Don't you know, I'm trying my best to egg you on? Why don't you just give UP already instead of taking my insults OVER AND OVER?!"

I had to leave the party after only an hour, because I feared a very public meltdown.

Did I mention that today had already been an incredibly difficult one for me? As in, BEFORE listening to this women flaunt her twin "superpowers"?

Just ask my husband.

He’s the one who found me sitting on the floor of the nursery, sobbing hysterically, rocking back and forth, clutching a pink teddy bear in one arm and a blue teddy bear in the other.

He's been gone longer than he was here.

How the hell can it be that this little person who I think about the first thing when I wake up in the morning and the last thing before I lay my head down at night has been GONE longer than he was HERE? For weeks, it's been this way. But I haven't written about it. I still don't think I should, but here I am. I don't have much to say about it, but I can't post about anything else without at least documenting this simple fact. This very simple fact that my adult brain is struggling with so. I can't believe he's been gone that long. In the early weeks, the thought comforted me, that soon we would hit this milestone and something would lift somehow. Now that it's here, it's not comforting, it's excruciating. I don't want to be this far away from him. I want my son. I want him back. How could someone who is such a big part of who I am be gone longer than he was ever here? I'm beyond sad. I know I'm not saying anything new, but the 9 month mark has really taken its toll. I've reached new lows. It's like I feel the anger, but it's buried so deep it won't surface, it can't surface, so it just builds quietly behind my smiles. I'm a robot going through the motions with a subtle hope lingering that one day I will be glad that I kept going through the motions when all I want to do is literally give up. On everything. Nothing makes sense anymore, and I question every single decision I've ever made - not just during my pregnancy but my entire life. So that is where my mind is at - wondering who the hell I am, how I got here, and whether or not this is where I should be. Maybe I was meant to be living an entirely different life. Right now, I'd take it. In a heartbeat. I can't stand myself or this reality. And if there is no "plan", and thus no way I could be "meant" to be living a different life, well I want one anyway, because this is just too freaking painful and I am a shell of a person. And I am having trouble, what with how chaotic and scary and random life seems to be, with seeing anything that's not directly in front of my face, with seeing anything in terms of long term. What's the point in believing in anything? What's the point in having any goals? If we have no control anyway why even bother? If we could get hit by a bus tomorrow why the hell watch what we eat today? What's the point in ever doing anything good or moral or ethical? People drink and do drugs and pop out healthy full term babies so they can go on to beat them or neglect them, while countless others endure multiple losses of perfectly healthy babies that they loved and wanted with everything in them. I can't believe I didn't see the lack of balance and symmetry in the world, but now that it's in my face, in full view, I can never go back to feeling loved and safe and protected. I don't know if I will ever trust anyone ever again. I put my faith and trust in many different places - in God, in my family, in my husband, in myself, and in my doctors - and nobody could make sure I brought home my two perfect babies with me. It's the worst betrayal, to trust others with something as precious as your children, and to have them die. How the hell did this happen. How the hell did this happen. How the hell did this happen. I can't even bring myself to type question marks, that's how robotic I've become. I can't bring myself to sob and scream these questions, they just play on a permanent loop in my head in the background like horrible elevator music. So here I am. Typing, typing, typing. Going through the motions. Because they tell me one foot in front of the other, one day at a time, one hour at a time, one minute at a time, one second at a time. But I don't know if I can trust anybody anymore, so how do I know they are telling me the truth when they say it will be worth it to get through the days a second at a time? And even if I do survive this, who the hell will I be when I come out on the other side?

The Facebook Post

So, I know I don't have to give any of you a reason to hate FB. You already do, right? What's there to like about logging in and reading about everyone's seemingly shiny happy perfect lives while we mourn our babies and wonder if we'll ever be "normal" or "okay" or even functional? Sounds like a blast, right?

Oh, but maybe what we can do is start posting about miscarriage, stillbirth, and infant loss! Then we'll be spreading awareness, right? Sounds like a plan. Except you get one or two "likes" from women who have lost babies themselves while the rest of the world posts what organic ingredients they used in their dinner that night or how excited they are about learning how to crochet a bikini so they can be "grandma-chic".

Fail.

But I will be the first to say that I don't give a crap; I've already lost enough. I'll be jiggered if I have to delete my FB account too...I know in the grand scheme of things, having a FB page means next to nothing. Because for the most part, that's true. However, my FB experience has evolved over time, and I need it now more than ever before, and it means more to me now than it ever has. Part of that is because I am involved in two baby loss forums on FB, and I find it incredibly healing and therapeutic to post and read comments and help maintain these boards. I have met some of my closest friends (Hi if you're reading this!!!) through FB group pages like SOBBS and CLIMB.

And I DO like the awareness I can spread, even if only one person notices...To me, that's making a difference. Just today I posted this along with many of my FB BLM friends, "September 6th is Stillbirth Remembrance Day. Stillbirths tragically strike 1 out of every 115 pregnancies. In the USA, 26,000 babies are stillborn every year. That's approximately 71 precious babies every single day. Remembering all the babies lost to stillbirth today and everyday." It felt good to post that, to be bold and brave and talk about something so taboo.

I also have an Elias album on FB, where I post photos of gifts people have given to me in his remembrance and images with his name. I find this album to be very comforting when I am having a really bad day, and I love getting the message across to others that I not only want but NEED for my son to be acknowledged, that I need him to be remembered, and that I welcome them to speak his name and send me little things that remind them of him. I don't mourn him alone; I don't remember him alone. Anyone who sees that album gets the message loud and clear, and in a way that in and of itself is a way of spreading awareness.

I also honor my son by "paying it forward" to others when I can by making remembrance images in honor of their precious babies. I hope the images end up in their own remembrance folders on FB and that they may be inspired to make images for others and keep it going. I keep a calendar of remembrance dates and honor them by creating or editing an image; then I upload it to my BLM folder and tag the person. When I hit "publish", I feel I am spreading awareness, because those checking their newsfeed will see a pretty image created in memory of a stillborn baby and realize that this grief needs to be spoken and that healing takes time. I don't do the images by request; rather, it's something I do when I feel the inspiration hit and feel the desire to honor our babies and the friendships built through our losses. I always say that our friendships are planted from our common experience, but they grow to be about so much more than that.

Needless to say, I love my BLM FB friends, and if any of you ever want to connect with me there, let me know.

However, FB, you're really pissing me off lately with these "This day in 2010" posts. I mean for freaking real, why don't you just take a machete and thrust it through my broken heart and then twist it? My day to day life isn't already painful enough; let's PILE ON the agony by reliving all the hope I had a year ago and thinking about how STUPID I was to think I would actually come home with two precious babies.

Just so you all can wallow with me, I will share my post from a year ago. I wrote this post at a time when I was getting really frustrated with coworkers who kept telling me, "Just relax! Everything has been going so well; you have nothing to worry about!" because at times I would open up about my anxiety, which is to be EXPECTED from someone who has had a prior loss and someone who is carrying multiples!!! Friggin' idiots. So anyway, I posted this a year ago today to get my point across to people that when they would say things like "Stop worrying, things have been going so well!" all it did was make me feel like they were discounting how difficult the pregnancy had been for me thus far. And boy, I hope God wasn't saying "I'll SHOW those people a real pregnancy complication!" (I know God doesn't work that way, but oy...I get shivers reading these posts from last year..And then I just want to curl up in a ball and die...)

THIS YEAR IN 2010: "One of my good friends recently said I was doing a "great job" with my pregnancy... And you know what? I am. I’m sitting here taking stock of it all, realizing that we are only a few weeks away from the 3rd trimester. And we have come a long way. I know some acquaintances refer to my pregnancy as “uncomplicated”, but those of you who know me better know that we’ve been through the scare of “threatened miscarriage”, two ER visits due to bleeding, an ER visit due to suspected PPROM, severe morning sickness that wouldn’t respond to the strongest medication, trouble gaining weight (extremely scary when you’re carrying multiples and at increased risk already of preterm birth), and GERD that went undiagnosed for weeks. So you may say that’s uncomplicated; I say that I am proud of every week these babies stay put, and as we are only days away from viability, I am celebrating. : ) I really have so much to be grateful for. I thank God every single day for these two little miracles."

And it's true. I prayed my ASS off. Not because I necessarily expected God to "listen" and answer my very specific prayers that my babies would be born happy and healthy but because I truly was just so overwhelmed with love and gratitude to have them in my womb. I was so overcome with emotions - love and joy - at times that I would just sob, and my husband would say, "What's wrong?!" and I would say, "I just love them SO MUCH, and I want them to both be okay SO BAD, and I'm just SO LUCKY to have them, and I don't know what I've done to deserve such amazing blessings in my life!"

I hadn't yet learned that "blessings" aren't about deserving or not deserving, and that tragedies aren't about deserving or not deserving, either.

*sigh*

Just to add insult to injury, I read people's responses, mostly saying how PROUD they were of me (so apparently now I'm just a big disappointment), but this one killed me: Someone had the nerve to comment “You are doing wonderful, but remember having them is the easy part, feeding clothing and educating thru college at a State supported University in today’s $ is north of 250 k each. Xoxo.”

I couldn't MAKE this sh*t up if I tried.

My response? “There has been little that has been easy about this. I know we will have challenges and the expenses are going to be huge, but I will be so grateful to have them and that we made it through a rough pregnancy that I will not take them for granted! Even through all the future hurdles. It’s just changed my perspective on everything.”

I didn't need another LOSS to change my perspective or learn to not take things for granted; my lesson has already been clearly communicated, LOUD AND FREAKING CLEAR!

Again with the love hate...FB has served to remind me that I DID appreciate things, that I DIDN'T take a damn thing for granted, and I need to be kinder to myself for that...I was a good pregnant mama...And yet FB has reminded me that I was SO DUMB in thinking that I had already been through the worst of it, that nothing could possibly go wrong once we were past viability and better yet that 28 week mark.

I am not deleting my account. But oh, is it tempting.

Gothise? Should I go private?

When I check my stats, why are so many people reading my blog from a site called Gothise? If you are here from that site, could you tell me how you found my blog? Is there a link on that site to this blog, and if so, who is sharing it? I am not on Gothise, so I am really confused. Please if you have any insights share them here. I will make my blog private if I feel it is being shared inappropriately.

Back to Work & Losing my Shit...Twice.

Warning: I consider this a sacred space where the four of us are together as a family, and so I normally try to steer clear of any offensive language. However, this post, as indicated by its title, has broken this "rule", I hope justifiably so. Profane language ahead.

Tomorrow, I return to work full time after having the entire summer off. And I honestly don’t know how I feel about that. Most of my anxiety stems from thinking time is really going to start flying, and then suddenly the one year birthday of our twins will be upon us, and nothing will have been planned or organized because I find it all to be extremely overwhelming for a number of reasons. Let’s face it; it’s only a little over three months away.

I still cannot believe this.

I cannot believe that in a little over three months, I will be a mother to a one-year-old daughter.

I can not believe that in a little over three months, it will mark one year since saying goodbye to Elias and all our dreams of raising twins, one boy one girl, same-aged siblings with names specifically chosen to go perfectly together.

I don’t know what’s more difficult to believe, honestly. I can’t decide which part of my reality is more difficult to process, as I still to this day find it hard to believe I have a living child. Is that messed up?

The mind, it performs some very mysterious tricks to protect itself, doesn’t it? I think mine is still recovering from my traumatic miscarriage in 2009. Some days I wonder if I have PTSD from my miscarriage, and if that’s why Elias died. Because I never got help when I needed it, and then I got pregnant again eight months later. I just pushed on with life after hearing, “Oh, miscarriages are SO common!” Why was that relevant? It wasn’t. I don’t care how common something is, if I’m fucked up from the experience, I deserve some fucking help. I will always feel partly to blame and wonder if my stress during my subsequent pregnancy caused something to go wrong, even though I have heard that women who lost their husband on the WTC attacks on 9/11 went on to all have healthy living babies despite their overwhelming anxiety, stress, and grief.

So tomorrow is my first full day of work. And just to clarify – no, this is not my return from maternity leave. I already did that, back in February, and yes it was brutal but also a blessing for me at that time. However, I welcomed summer when it came, and literally left work at work for over two months. Never even checked my email all summer long.

I figured I had a lot of other things to focus on, like my grief.
And spending quality time with my daughter.
And not being pregnant, which for me at the moment is a very good thing.

The past two summers have been horrible. Last summer I was pregnant and felt very isolated, depressed, anxious, and lost. The summer before that, I was pregnant, then I miscarried, and my world was literally painted black for a few good months before I even saw a sliver of light.
So this summer, while there is darkness in that I miss my son, I wanted more than anything to just revel in the normal pleasures of life. And I chose to do that as much as possible, I believe. I grieved, I blogged (though not nearly enough), I cried, I sobbed, I screamed, I went to therapy, and I even went to a pregnancy and infant loss support group that I had previously written off.
But more often, I went for walks with my daughter, I went shopping with friends, I laid out in the sun while she was napping (ohhhh, how I missed doing that the past two summers), I met people for lunches, I chugged iced coffees all day and sipped wine at night when I felt like it, I planned and coordinated get-togethers and parties at our house. I LIVED.

And what an odd feeling, to be missing someone so terribly, more than I ever have before, and to have a greater pain than I ever imagined myself knowing…and yet feel more alive than I have in years.

At any rate, inevitably, summer has come to a close, and I've had to get some work done in preparation for the upcoming school year. Leaving my daughter with my dad while I went up to school to prepare my classroom was brutal, for a number of reasons. First of all, I realize that this is going to be far more difficult than returning from my maternity leave. When I returned to work back then, the opposite would have about killed me. NOT getting back to some type of “routine” or new normal would have literally landed me in the loony bin or worse. I had to get back to work, I was desperate to keep busy and distract myself, not only my well-being but my very life depended on it.

Now? Not so much.
My therapist says that work will be good for me, as it will keep me from “ruminating” too much, and I think she does kinda have a point. But. What she’s not understanding is it’s different now. My daughter is a little PERSON now. She’s a child. She interacts with me, she lights up when she sees me, I can read her like nobody else can.
This wasn’t so back in February, when she was only two months old and I was in a complete daze most of the time.
I also worry more now than I did back in February. So much more. I know the SIDS risk goes down after six months, but Evelyn has been crawling since July. She wasn’t even seven months old yet and started crawling, which brings about a whole new set of fears. Just today she demonstrated her ability to crawl up two steps to get into the kitchen level of our home. Thanks, babe, just what I needed before returning to work, another “milestone” for you to hit and for me to worry will get you into something you shouldn’t be into.

This is just so hard.

Driving to work last week in order to prepare my classroom, my mind drifts to our loss and more sick ironies. The irony of my having “the perfect body to carry twins – nice and tall, thin but not too skinny”. No one was worried; my long torso meant I would not likely have them too early. We made it so damn far. DAMN IT. We overcame prematurity, damn it, that should have been the only thing we needed to worry about!!!
But no. So terribly naïve.

A green light becomes yellow, then red, so I stop and decide to stop obsessing and focus on the day ahead of me. A bright flash of color catches my eye, and I immediately notice that the car in front of me has a yellow sign hanging in the back window, “Twins on Board!!!” FUCK! FUCK FUCK FUCK!!!! Are you fucking serious?!?!?! I pull closer, peer in the back seat, and see two car seats…The same ones we have. Er, HAD. I literally start yelling at this woman, “FUCK YOU!!! YAY YOU HAVE TWINS, YOU WANT A FUCKING COOKIE? DOES THAT MAKE YOU SPECIAL SOMEHOW?!?! FUCK!”

Not a proud moment.

(I had the windows up, and there’s no way she heard me or even noticed, so relax.) Yeah the sign she had was tacky, and I never would have flaunted my mother of twins "status" so blatantly as to hang a sign in my vehicle, but she didn’t deserve my anger directed at her.
But then again, it wasn’t at her.
It was at the universe.
The universe that handed us this hand, one that I didn’t deserve, my husband didn’t deserve, my daughter didn’t deserve, our parents and sisters didn’t deserve, and my son certainly didn’t deserve. The universe that decided that all of this loss wasn’t enough and decided to place a car with that stupid freaking hangtag right in front of my van.
A tiny compact car full of twins, while I drive my empty minivan to work with one car seat in the back.

At work, more triggers. I go to sign out a video from the library and notice I signed out the exact same video on the exact same day one year ago, to the day. I remember last summer and all the anxiety of having to set up my room (I had moved classrooms) while five months pregnant with twins. I was TERRIFIED that something I would do would trigger preterm labor and I’d lose them. Or I’d have incompetent cervix and randomly lose them like some women do, no warning.

Sure, a year ago, when I moved classrooms, I had people helping me move things around and lift heavy books, but it wasn’t enough. Nothing was ever enough to keep me calm and feeling like I was doing everything to protect my babies. I was fiercely protective. Overprotective. And then one died, and maybe, just maybe, if I hadn't worried so much about the logistics of moving classrooms, Elias would be here. ((See the shit that runs through my head? Why do I do that to myself? It doesn't even make sense!))

Needless to say, my classroom was not properly organized during its move last year. I had been SO excited about finally getting a new classroom and being forced to actually go through all my stuff and make it clean and nice and neat (I had signed up for the task well before knowing I was pregnant with twins, btw), but that wasn’t going to happen with other people moving all my stuff. And it wasn’t going to happen when all I wanted was to go home and lay down on my left side and keep my babies safely inside where they could grow, grow, grow, and I could just be left alone from a world that didn’t understand what I was going through psychologically, being pregnant after a loss. They say with twins you worry times two; I say you worry times twenty. Factor in a previous loss, and, well, you get my point.

After signing out the video, I went to my room and saw how messy everything was. Materials strewn around haphazardly, no rhyme, no reason, no organization, period. And I just got pissed. I got so freaking angry. Resentful, even. I should have been able to get all of this organized before, but I couldn’t, because I was stupid and thought I could control things and chose to stay home and be a hermit to keep my twins safe. Then, when I came back from maternity leave, I should have been able to get all of this organized, with all my happy new mommy vibes and renewed zest for life, but I couldn’t, because my son died, and I was a freaking mess myself. I could barely remember to shower or brush my teeth much less go through file folders at work and alphabetize my materials.

A few days later, my husband had a day off and came up to work with me to try and help me get organized, and I just lost it. Hot tears rolled down my cheeks, and he just stood there looking very confused and frustrated. I said, “I shouldn’t have to DO this!!! All of this stuff should be organized already, but it isn’t, and I don’t know why this is such a trigger for me, but it is. I feel like I’m repeatedly being slapped in the fucking face, and I just really need to get out of here and go home!"

Sigh.

My classroom is still not the way I would like it, although I made progress on my subsequent visits there after those two extremely difficult days. Please wish me luck tomorrow as I venture back there. And please, please, please universe, if you’re listening, don’t let any students ask me about my “twins”. I realize there are some students who probably don’t know what happened, who only knew I was having twins but didn't hear about our outcome, and I have no faith in prayer, but I PRAY that none of those students end up with me as their teacher this year.

And please, just this once...No twins in any of my classes. I've had about enough of your cruel jokes, Universe. You owe me a break after that whole hangtag thing. Capiche?

August 19th Day of Hope

I know not all of you are friends of mine on FB, so in case you didn't see my post there, I will put it here. Apparently I can't put the FB event page link here for some reason, but if you log into FB and do a search for "August 19th - Day of Hope" there is a "community organization" page and also an event page for "August 19th - Day of Hope 2011". You can change your profile pic on FB in support of the cause to spread awareness about all forms of babyloss and to let others know that you are not only comfortable talking about it but encouraging people to talk about it. There are albums for aunts, uncles, grandparents, friends, godparents, and parents of babies lost. Such beautifully peaceful photos...and such an important message. Please take a few minutes to check it out. And if any other BLMs who read this would like to "friend" me, let me know and I will try and find you. I am finding it common for BLMs to delete their FB accounts, but not me...(Although I admit my settings on FB are pretty private; they've always been that way due to my profession...And I don't believe my full name is even posted on this blog, so you'd have to help ME find YOU...) XO

Waves of grief, expected, unexpected, accidental, and self-inflicted.

So, overall, things in my life have been improving. My husband and I have had some recent epiphanies about ourselves and our marriage, and I truly think if we both put forth the effort to fix things, we will be fine. More than fine, because if we can get through this, then we can get through anything. Right?

So I’ve been feeling hopeful for the future, and I’ve been feeling good. I’ve even had moments of what I suppose they would call “acceptance” of what happened and of our reality. (?!?!)

However, yesterday I had what I would call an intense wave of grief that came on, but thankfully lifted within a relatively short period of time. I wanted to share it so that those of you who feel intense grief most of the day may have hope that some day you will have days that are mostly good but with a wave of sadness mixed in.

So I met my friend M and my sister-in-law A at Panera for lunch, which was great. I had some fleeting moments of sadness, like when I said, “We’re outnumbered” counting the kids and the adults, as my friend and I both had our daughters there and my SIL had her two girls there with her. I thought to myself, Every day I should be the one outnumbered. I should be at home with my two babies. And here, we should be outnumbered by even one more. Then, I looked over to see M and A’s girls (both two years old) jumping on the booth together and having fun, and my grief wave grew a little taller when I thought about how Evy will have to jump on the booth by herself when she’s two. How she won’t have Elias holding her hand to walk through life. How even if we have another child or children, she will still be lonely. Even if the “twin bond” thing isn’t real for all twins, even if it's usually something twins impose on themselves to feel even more “special”, and thus something she won’t “miss”, she will still be lonely, because she won’t have her same aged sibling to move through each milestone with.

It was rough, and it sucked, and it made me wish I could be M or A and not feel the pain I was feeling, obviously. It made me wish I could just eat lunch at Panera and enjoy the company of my daughter and friends.

After lunch, we went to Carter’s. I glanced over at the boy’s section and thought, “Nope, you’re not making me upset. Screw you, boy’s section.” Obviously there will be boy’s clothes at a clothing store for babies, and I know that, and I decide to not let it bother me, as obviously there will be baby boys being born and without them the future of our population would be gravely endangered.

I went immediately to the girl’s section and glanced around, feeling so grateful that I am a mother to a living child and can buy cute clothes for my little girl. (This reminds me of a rant I have for later…A Babies R Us rant…I’ll save it for now.) So I walked around looking at all the clothes, and chose very selectively, as money is a bit tight. I decided to try and find a rainbow onesie for my IRL BLM friend who is having a baby girl any day now (in April 2010 she lost her fullterm baby girl to a placental abruption). I walked all around the girls’ section, all the way to the back and then to the front, and I couldn’t find anything. Disappointed, and some irrational thoughts creeping, like “Us BLMs always get the short end of the stick, why can’t there just be the perfect onesie just waiting for me to buy it for this woman who absolutely deserves the perfect gift?” I went to go find my friend M and my SIL A.

Except there were customers literally standing everywhere I went to turn. I tried going this way and that way, until I was FORCED to walk THROUGH the boy’s section.

Are you for real?

Yup, the Universe hates us BLMs.

I managed to walk through staying calm, but of course in the back of my mind wondered if I would ever have a boy of my own to shop for (although I do realize girl’s clothes are way more fun to buy). I got to the clearance bin and started sifting through, and I found onesie after onesie that said “Grandpa’s buddy” and “Grandpa’s little slugger”, and it literally felt like knives going into my chest.

Flash back to the early weeks after we came home from the hospital and the day we decided to go through Elias’s things. My MIL had packed up his portion of the nursery (with our permission, of course), because we wanted our “homecoming” with Evelyn to be focused on her. Well. Going through his things wasn’t really too emotional for me, because let’s face it – he hadn’t USED any of those things. Plus, I was already a wreck, so how could it be any worse? Sorting through his things left me feeling angry, ripped off, robbed.
We decided to keep some clothing for a potential future son (it felt comforting in a way), and donate some of the other things to a store that raises money for cancer research (not any relation to our loss, but a good cause no less). The “Grandpa’s buddy” onesie someone had purchased for our boy about broke me in half when I came across it. I literally lost it.

The unfairness that my father will never get to hang out with his grandson still breaks my heart every single day. My dad was so proactive during my pregnancy. As my appointments became frequent and I was on bedrest, my father drove me to my weekly (and sometimes bi-weekly) ultrasounds. He was there every step of the way and bonded with those babies more than any other family member. He was the worrier, and even when doctors said things looked normal, he thought something was really wrong. It kills me, to this day. To think that my father spent the last days of Elias’s life pacing his home worrying about his grandson, and he was right. Elias needed saving. But none of us knew that. None of us really knew that. If we’d known that, we would have gone to the hospital. If he’d known that, he’d have done more than just pace. Of course none of us knew. We worried, but I’m sure there are countless families who worry or feel that something is wrong and everything turns out perfect.
Just not this time, but that doesn't mean anything.
I hope in my heart of hearts that my dad doesn’t blame himself for anything. One day we talked about it, and he told me that he doesn’t feel guilty, and that I shouldn’t either, because we did what we were supposed to do which was get things checked out. Even if we had begged for a c-section, which would have been irrational at the time considering the nurses said the tests were all within normal ranges, it wasn’t our decision to make. We weren’t the doctors. We weren’t in control. I could tell he meant it, and I was relieved that he wasn’t wrapped up in guilt. Anger, yes, but not guilt. I wonder if I will ever get to that point. I still feel like maybe I chose the wrong doctors, and that's why my son died, so it must be my fault because I chose them...but then we consult with others who say they would have made the same decisions based on the data. And at the end of the day I know my OB went above and beyond for me during the course of my pregnancy. If I had chosen different doctors, what are the chances they would have seen something wrong or guessed that I would be experiencing a one in five thousand pregnancy complication? And even yet, what are the chances we would have brought him home after the fact?

F*CK, the cards were stacked against my boy from every direction, weren't they?

I have tried to help my dad with his anger by explaining how fast FMH is and that either the doctors were right that everything was okay at that point or they were wrong, and a c-section might have meant he would have been born alive but with a massive bleed wouldn’t have likely survived. What we don’t know and will never know is if the bleed was happening at that point, how much blood had been lost at that point in time? Just impossible to know. But if it was acute and massive, as it was described to be, and as all the evidence points to, then I have to believe our end result would have been the same. The heartbreaking thing is to imagine that things may have been fine, and if they had done an emergency csection he likely would have been fine, but then why would they do an emergency csection at 36.5 weeks without an emergency being present? Why would they put me through major surgery with many risks without having a clear reason to do so? This is the fight inside my head of rational versus irrational thinking.

And all the woulda coulda shouldas are quieted for the most part when I pick apart rational from irrational. But oh, this battle is messy and painful.

I still get sad when I see my father. I love him so much that it hurts, and when I look at him and think of how this impacted him, it kills me. For awhile, it was really impacting our relationship. I felt I had failed him. I still do sometimes. I want nothing but happiness for my amazing parents, and I am so glad that they find such joy in Evelyn, because at least I know I did something right. See? There I go again, clearly still blaming myself. I fear I will always feel that sense of failure in that my son isn’t here, that he isn’t napping upstairs with his sister like he should be.

So Carter's basically sucked, and that's why. That stupid clearance bin full of triggers.

Today, because I apparently like to torture myself, I visited the “December 2010 twins” club on Babycenter. I felt like I wanted to see how my old “friends” were doing, the women who I’d connected with for all those weeks while we all feared preterm labor and whether we were eating enough, what we would name our twins, should their names rhyme or start with the same letter or not, should we dress them similar or not, what kind of sleeping arrangements and childcare we would get for two, and what impact multiples were already having on our marriage even before their arrival outside of the womb.

Mistake.

Those women, although wonderful and lovely people, weren’t really my friends. They were just ladies who were scared sh*tless like me. And now, they’re on one path, and I’m on another. A few of the women had left the group after miscarrying one or both of their twins. One had left the group when at her 20 week anatomy scan she discovered her boys had both died after tangling in their cords. I don’t know where those women went, but why would they return? And similarly, why should I? I made one real friend in that group, a woman who lost her girl a week or so after birth, and I still talk to her on loss forums. So really, why should I “check in” on the rest of them? I admit I was curious about whether they were still posting there, and I wondered what their babies looked like. And yes, they were still posting, and why wouldn’t they be? They need each other; they need others who “get it”, as I said before that moms of multiples is a subculture and support group in and of itself. I didn’t stay long but saw posts about napping, schedules, feedings, upcoming birthdays. I thought, “must be nice to have THAT be what you’re worried about instead of dealing with this New Normal.”

I remembered many moms whose pregnancies seemed so easy compared to mine. I remembered that while I was on bedrest for Halloween 2010, many of them were painting their tummies for the occasion and handing out candy. I had been so resentful at the time, and here I am. Nothing has changed. I am still resentful. I get to be the one who had a rough pregnancy that impacted many of my relationships as well as my self-esteem, and I get to be the one to lose one of my twins to something completely unrelated to my complications, something I had never even heard of despite the countless hours I spent reading up on potential complications, while they breezed through their pregnancies and painted their tummies like big ol’ pumpkins to be ooohed and ahhhed at, and most importantly got to bring home two healthy living babies.

I clicked on one profile and saw a photo of b/g twins sitting in a wagon on the 4th of July, and the tears came so easily. In fact, I was sobbing. The girl had an adorable dress with stars on it, and the boy sported red/white/blue plaid. He had his hand clutching her dress, and for some reason that killed me. I cried so hard and so loud that I can’t believe my daughter didn’t wake up from her nap. I looked at the ceiling through my tears and cried, “Why did you have to leave us?! Why couldn’t you just stay?! We need you here with us, Elias. I need you here to be a big brother to your sister and hold her hand through life. I need you to protect her and watch over her. Your sister needs you here!!!”

And I allowed myself to just be sad, devastated, for her. For her loss. To entertain the notion that she may feel broken not having him here, even though I hope with everything in me that she doesn’t, that she feels whole.

I don’t believe in the guardian angel thing, but in my own way, I do hope he is still looking out for his sister, watching out for her, making sure good things happen for her.

My sweet boy Elias.
My forever baby, my son.

Introducing: My daughter Evelyn.

The title of my blog is JOY and sorrow, and yet I rarely come here to share my joy. I am sorry for that. I think I was worried that sharing my living daughter here would upset other women who lost their daughters around the time Evelyn was born. And, well, it might, and if so - I genuinely apologize for any triggers my sharing her may cause for you. Yet I feel that if I only talk about my loss here, then this blog doesn't even come close to representing my complicated life which is full of horrible pain but also overwhelming happiness at times. Another blogger pointed out that my loss is not too terribly different from the loss of any baby while having to parent another living child, and that mamas who lost their first born singleton baby would eventually be in my shoes when they have their next baby...Grieving a child while raising another. Her comments made me feel much less alone in this community. The twin aspect is secondary, but I do think it makes everything seem heightened because the loss and the gain are simultaneous, the major life changes are all corresponding and make the waters of each other murky. At any rate, I can't deny that I am a mother to a living child, a girl who came into this world the same day we said goodbye to her brother. This blog may be focused on my loss, but from time to time, Evy deserves to be shared as well. I know my life and my grief would be very different if she wasn't here with me. And maybe, just maybe, seeing her smiling face will help to make somebody's day just a little brighter.

So here she is! My baby girl, Evy. (Rhymes with Chevy).

She was tiny when we brought her home, and we were afraid we'd break her. Now she's this little person, and I find myself saying, "Where's my baby?!" because she's growing so fast she makes my head freaking spin. 8 months old, she's now sportin' two emerging teeth and loves to crawl, pull herself up to standing and then freak out because she doesn't know what to do next, make farting noises with her mouth, and other such awesome.

The empty spot on the couch next to her.

When people see my daughter, they often immediately oooh and ahhhh over how blue her eyes are. Lately, instead of just being happy at this compliment, I find myself angry that I don't know what color Elias's eyes were. I find myself angry that Elias isn't here, because HE should be oooh'ed and ahhh'ed over. I see photos of my daughter with her two girl cousins, and I just think, there should be a baby boy in this photo. My baby boy. I look at the spot next to my girl and see where he should be sitting, and I wonder why the hell he couldn't stay with us. And I wonder if my daughter will always feel like somebody's missing. For a while I was doing pretty good with keeping everything separate / compartmentalized, but lately everything just runs together. I'm having a lot of trouble finding any joy in compliments or nice photos, because I am so fixated on how things should be instead of enjoying what is. I guess this is just a low point, but right now it feels like this is my life, like the rest of my life is just going to feel like torture. It is agonizing to have to go on without someone you love so f*cking much. My heart is just so heavy. I still find myself taking in a deep breath and thinking, oh my God, I can't believe this happened to us. It's been 8 months, and I still just can't freaking believe it. I spent my entire pregnancy taking it easy, drinking gallons of water, eating the best I could, following doctors' orders, getting extra ultrasounds, taking prenatals religiously, resting up, and trying to stay positive during a time that for me was pretty terrifying. I literally put everything on hold and focused on being a twin mama. (I can't stand women who say pregnancy for them is so easy they forget they're pregnant - there's NO forgetting when you are pregnant after a loss, and with twins no less!). How the hell does this happen? I still don't understand how I could have so much monitoring and take so many precautions only to lose my son. It's like the cruelest joke in the world was played on me. Does anyone else feel that way? I also feel like I ruined my marriage (we are very distant) and my parents' happiness with my simple desire for children. I broke everybody's hearts. How can I ever forgive myself for bringing so much pain to everybody I love? I feel like my life is just ruined and this world would be better if I'd never been born. The day my son died, he took my heart with him, and there's just this gaping void left. It hurts so bad it has this vacuum effect that makes it hard to breathe.

Can I just go crawl under a rock for awhile?

I know you guys are sick of hearing about it. But literally thousands of twins are in the area for the Twins Days festival this weekend. You know what I have to say about that? Why the hell do I have to live right by the town that hosts this?!?! Any more sick, twisted, cruel ironies anyone would like to throw at our loss situation?! F...M...L.

A Literal Parade of Triggers!!! Yay!!!

So, my rant on the twin thing partly (but not wholly) was sparked by the fact that this weekend there is a friggin' FESTIVAL devoted to twins not far from my home. (Aren't I oh so lucky?!) In fact, one of my friends/coworkers lives on the parade route. When she moved there, she did not realize what she was in for. Soon, she grew to love living on the parade route (or at least did a good job making the best out of an annoying situation).

Obviously, if we lived there, we’d be moving in a split second away from this PARADE OF TRIGGERS. I can’t imagine much else that would be as horrific to me at this point on my grief journey as seeing droves of parents flaunting their twins and putting them on public display.

My friend has a party at her house every year on the weekend of this parade.
Every year we have gone, mostly to humor her. It is the one big party she has every year, and we don’t get out to her house often.
I remember the first time saying, “Well…I feel kind of odd attending a party for Twins Days when I am not a twin.” What place was it for me to go there and just stare at all the twins?
Seemed incredibly voyeuristic, no?
She said it was her party and anyone was welcome, that there would only be one or two sets of twins at the party. Basically, it was a good excuse to have people come over. She explained that people from all over the world come to Twins Days to participate in the parade and/or see all the twins and that it would be fun to “people watch”.

So, every year, we would go. Mostly to visit with our friend hosting the party.
To be honest? It always made me uncomfortable, but I don’t know if I ever thought through the “why” outside of feeling like a tourist. We just kept going every year as to not disappoint my friend.
When we conceieved twins, this friend was over the freaking moon, obviously. Going on and on about how Twins Days would be so much fun. In her mind it affirmed we would definitely be attending every year. She was so ecstatic.

Immediately, I started to feel even more uncomfortable than I had in the past about this spectacle devoted to twins. I was so incredibly in love with my children already, but in my heart I couldn’t bring myself to get excited about including them in any of it. It really got me thinking about how different my children would be treated simply on account of being conceived during the same ovulatory cycle, and I already started to kind of resent that. I didn't want the label, the extra attention, the early categorization of them as "different". I related so much to the women with living twins who said they hated the very word, that they just wanted their children to be treated as separate individuals.

A parade and festival for twins?
I didn’t get it.
Would I ever get it? If there was a time to get it, it would be at that point when I was expecting twins and could fully participate in these festivities for years to come after their births.
But I felt more annoyed at the idea than anything else.

I wasn’t sure I wanted to go to the parade that year. I was halfway through my pregnancy and wanted to take it easy. My friend assured me that I could lie down or just do whatever I felt was best once there. My parents were invited too (but never attended in the past as they thought the whole thing was odd too), but suddenly it seemed more “relevant” as they were expecting twin grandchildren. I thought it might be fun to go and bring them. My pregnancy was not only stressful and taxing on me and my marriage, but on my parents as well, who had seen their daughter endure the trauma of miscarriage and would worry until the babies were both here kicking and screaming, understandably. I thought, maybe if they see all these healthy twins, they will relax a bit.

Hell, who am I kidding, maybe I would relax a bit.

I chose a very understated dark gray maternity dress to wear and was mostly uncomfortable the entire day. For many reasons. One being, my friend kept pointing at my stomach, taking photos of my little bump, bragging to everyone that I had the youngest twins there. She even told me I should have worn a sign or something to indicate that I was carrying twins.

As I said before, the whole thing just didn’t sit right with me. Sometimes I wonder if I “knew” something horrible would happen, but then I realize that’s ridiculous. Yes, I was worried about my pregnancy, but that's true of most women who are told at their first ultrasound (after already suffering a traumatizing loss in the past),

"This means you are high risk. But don't worry, you are the lowest risk of the high risk."

Oh, ok. *whew?*

And honestly, even if my twins were both napping in their cribs at this very moment, it still wouldn’t sit right with me, and I wouldn’t want them to go. So I don't think my feelings on this point have anything to do with our loss.
In fact, last year during my pregnancy, I was already trying to concoct reasons why we wouldn’t be able to go to future Twins Days.
Wouldn’t the parade be too loud for the babies?...Wouldn't it be too stressful bring two infants out?...Wouldn't we just want to stay home and spend time with them?...

Having living twins, I probably wouldn’t have been able to get out of the feelings of obligation to go. And here I would be, dreading the party and all the ensuing awkwardness. I probably wouldn't be blogging about it (I wouldn't have a blog) but would be feigning excitement and wondering what my problem was. Which would be a hell of a lot better than sitting here missing my son so terribly.

Another point that really bothers me is that my cousin will be bringing her twin daughters in from out of state just to participate in this circus. No one has mentioned to me that they are coming into town, but I figured it out (Facebook makes detectives out of all of us). Am I crazy for thinking it would be really nice if they would just skip Twins Days this one time? (They've only gone one other time!) I feel like it's somewhat disrespectful toward me and my family. Maybe I am just oversensitive. (My husband thinks so. He says they should just live their lives and not worry about ours, basically. And an added point he throws in, is that as much as he would rather have his son here, he must admit feeling relief in that we have a "free pass" getting us out of ever attending Twins Days ever again. For me, it still stings to even hear about it, even though I never liked it to begin with. I know, I'm a hypocrite. Guilty as charged.)

I think what bothers me even more than my cousin bringing her twin daughters to the parade (I mean let's face it; it's their choice and their right...) is the thought that they will silently slip in and out of town without even so much as stopping by to meet my daughter. They are staying at my aunt's house who lives literally three minutes from our home. I'm assuming this is what will happen, as no one has said anything to me about their visit, and they are in town TODAY.
Do they not care about Evelyn now that she isn't a twin?
Does she not matter as her own person?
Is my cousin's family forever going to tiptoe around me simply because they have intact twins while I lost one of mine???
Do I deserve feeling like such a freaking outcast?!?!

*sigh.*

At any rate, now that my grief is so intensified by the whole “twin thing” being built up by society, this parade of twins literally sickens me. I think back to before we were pregnant and used to attend, and I remember hearing some people talk about how seeing so many twins in one place was “just so freaky”, which really drives my point home, no?

If the festival was about celebrating how much adversity the twins and their mothers had to overcome just to exist, now THAT would be a different story! To be fair, at Twins Days, sometimes I would see twins wearing signs/shirts that would say “32 weeker”, or “Twin-to-twin transfusion survivor”. If in the parade, these people were passing out pamphlets about the risks of a twin pregnancy or something educational / spreading awareness, then I would whole-heartedly agree with the concept of a parade. The subsequent festival after the parade could be a celebration of their lives.
However, not many wear such shirts or are looking to spread awareness.
Few people even realize that at the festival there are tables where people hand out information on some of these issues, because those tables are hardly a main focus.
There are also booths where researchers offer your children a candybar or a free eraser if they agree to be poked and prodded or have some type of testing done.
Mostly, there are vendors trying to make money on overpriced merchandise and food sold to people in attendance.

It would comfort me to know that the proceeds they make for entry into the festival went toward some kind of fund toward improving outcomes for multiple births (and maybe some of it does; I honestly don't know), but what I do know is that some if not all of it goes toward prizes for twins after they compete against one another in front of an audience on stage for "cutest", "most alike", "most different", and a whole host of other categories.

Two years ago I noticed a few people at the festival wearing shirts that said “Twinless twin”, and “Surviving twin” on them. It made me incredibly sad. So deeply sad. I thought, why would they want to come to this festival? I guess to celebrate their twinship? (And, what does that even mean?) I decided that maybe some of them simply wanted to attend in memory of their lost sibling. However, weren’t there other ways to honor them? And what were the parents thinking? Were they there for the “shock factor” of seeing people’s reactions?

I kept asking my friends, “Did you see that girl’s shirt?!”, but no one seemed to notice but me. It really troubled me, and I wondered what their stories were, but everyone else seemed more focused on ogling all the look-alikes swarming around.

I felt rattled, unsettled, and lonely in those moments.

Oh, what horrible foreshadowing.