Micro-Blog Monday: The Importance of Signs

I'm sure some people probably wonder about my post-Evelyn's death obsession with feathers. Perhaps they even find it sad or feel sorry for me, that I'm so desperate to find a bit of my child here with me, earth-side. Maybe they see my posts about sunsets (or Evie's finger paintings as we call them), and find them sweet but also naive or at best, endearing. At worst, maybe they're growing tired of my attempts to find Evelyn in our world where she can no longer be held or truly seen. But the truth is, these signs, they're all we have. And I'm terrified that it's all an elaborate figment of my imagination, and that a feather really is just a feather.

When your child is alive, you know they're okay because you can see them. You can touch them, hold them. If they're not happy or scared, they tell you. If they're sad or feeling unwell, you know. There are signs, if not words or actions. There are reassurances. But for parents whose children have passed beyond their sight and reach, we are desperate to know that they're okay. That they're happy. We're desperate to know that their souls are SOMEWHERE, anywhere, if they're no longer physically here with us. Because the alternative -- that they are really, truly gone forever, in all forms -- is just too much to bear, too overwhelming to consider.

It's our job as parents to take care of our children. To keep them safe, to love them unconditionally, to guide them. When we are no longer able to do so in the traditional sense, these signs, however childish it may seem to be looking for them or to find hope or assign importance to them, they are so much more than just feathers or butterflies or sunsets or whatever else. To us, they are comforting symbols that our children still exist in our world, somehow. And that all that we're doing to keep their memories alive, to live in a way that makes them proud, the fact that we're choosing to keep putting one foot in front of the other, it helps us remember that it all matters. Because our children can see us, and this feather? It's my proof. And I don't care how it may seem to someone else; I know full well that it may not be true. But I need it to be. For me. So I'll keep looking and I'll keep searching. Scanning the ground at my feet and the sky high above my head. Always. Always.

Grief-Life Balance

Identifying the balance between appreciating life that you know is precious and all too brief but not being able to find a way to enjoy it again can be such a challenge to navigate. On the one hand, I know all too well that life is fleeting, that it can be taken away in an instant, that nothing is guaranteed or for certain for anyone at any time. I knew that even before Evelyn was born, as an open heart surgery survivor. I know that life changes on a dime. That what once was, may not always be. I know that life is a gift and that it should never, ever be taken for granted because I could have very easily lost mine in October of 2009. But on the other hand, ever since Evelyn's passing, I struggle every.single.day to find meaning and purpose and enjoyment in my life. Because...life lacks meaning for me right now. And that's a hard thing to admit. Especially because I know how blessed I am to be here, how fate could have so easily taken our life in a very different direction, all those years ago. But is it really that hard to believe? The newfound appreciation for life and its blessings that I gained over time in those first years post-heart surgery are now complicated by all that has occurred since then -- I'm a bereaved mother. My life doesn't look like it should and I hate it. I hate that I wake up to a quiet house instead of a home that includes a rambunctious, loud, strong-willed 11-month old. I hate that my days don't include taking care of her everyday needs. I hate that I have to find the strength to face each day without her, instead of looking forward to another spent WITH her. I hate that to spend time with my daughter, I cradle her urn in my arms instead of her. I hate that every day for the rest of my life, there will be a tinge of sadness -- that even when we are able to find goodness, it won't be purely, wholly good. Because how could it? Our child is dead and there is nothing that will ever change that. There will always be a member of our family missing. So even though I know I "should" be finding a way to better appreciate all that life has to offer every single day, for the both of us instead of just me, it's so incredibly hard. People say I need to be more gentle with myself, to not set such high expectations of myself, that I'm doing well, considering. And I know, deep down, that they're right. But I can't help feeling the pressure anyway.

I feel guilty because I promised Evelyn when she died, that I would live life for her, too, and I'm not always able to do that the way I feel I should. Because I miss her so goddamn much. And that missing is heavy, so heavy. But maybe the fact that I'm still here, still fighting, still putting one foot in front of the other, still doing what I can when I can to be better, do better, love harder...in her memory and in her honor...doing the blanket drives and the care packages for grieving parents and making the donation to the children's section of the library...not giving up on forging a path forward to add another child to our family, her sibling...maybe she knows that's what I'm doing to keep living. It's true that I don't smile as easily as I used to, that it takes more to coax out a laugh. It's true that we don't find the same level of enjoyment in things as we once did, that everything has lots its luster. But maybe that's not the important stuff. Maybe it's the getting through the day stuff, despite the pain and the sorrow we carry around with us. Maybe it's the resolve to keep fighting for hope, no matter how broken we feel. Perhaps she's proud of me -- of us -- for that. I certainly hope so.

****

Evelyn's first birthday is in 21 days, the first anniversary of her passing in 22 and it scarcely feels possible. How could so much time have already passed? The pain is still so fresh, so raw. The emptiness still so acute. And yet...the calendar says what it says and I know it's not wrong. The grief has changed, in time, despite what I thought. It's definitely not better, there is no such thing. But it's changed, it's different. And I hate that too. Because it means we're further away from her. I miss her so.

Encounters of the "Other" Kind

Somehow, despite having to pay $476 for car repairs, Saturday started out okay. We slept in, we saved $6 at Petco (it's the little things, more and more), and we treated ourselves to a bit of frozen yogurt. Then we trooped over to Goodwill in search of a basket and walked out with $10 worth of goodies -- a $3 coffee pot for my husband's office, a few movies, and the basket we'd gone in for in the first place. Then we picked up my car from the shop, paid the bill, and headed to the grocery store, the final stop on our errands list.

And the store even started out okay: they were out of regular zucchini but they gave us the organic zucchini for the non-organic price. They had bags of cherries on sale, which are a favorite seasonal snack of mine. And then... "Oh HEY you guys, how ARE you?" An acquaintance of ours is ambling over, enormous smile on his face, his sing-song greeting ringing like a gong in my ears. I turn and there's his wife, across the produce section, equally huge grin on her face, waving her arms at me.

{Some background so the following makes more sense. These people are family friends. They are some of my brother-in-law and sister-in-law's closest friends and we've been social with them on and off for the past decade or so. They live about 3 miles from our house, we all work at the same university, we're all friends on social media, and J's brother stayed with them when he flew in for Evelyn's funeral last August. So, they know our daughter died. The last time we saw them, we opened up about our infertility battle and shared that we were about to start the IVF process. And...we haven't heard one word from them since Evie died. Nothing. Ever. In 9 months' time.}

The conversation in front of the bananas unfolded something like this (these people that we know are denoted by #1 -wife- and #2 - husband-):

#2: "Oh HEY you guys, how ARE you?"
J: "Oh hey, {insert guy's name}, well, you know, we're just..."
#2{interrupting}: "Yea, you know, we're just in such a rush today, our daughter's birthday is coming up and we're just in a frenzy trying to figure everything out. You know how it is." What?
#1 {wheeling their cart over}: "So how ARE you guys, huh? What's been going on?"
Me: "Well, you know, we're..."
#1 {interrupting}: Did {insert husbands name} tell you about {insert child's name} birthday? She's going to be FIVE this year, can you believe it? Time really flies..."
Me: "Yea, wow, that's great, she's really gotten so big." The little girl is hiding behind her dad's legs, little brother peering around from behind her.
#2: "Well, it's good to see you guys, we'd better keep moving." Starts herding kids away from us.
#1: {Giving me a sad face, yes, THAT one}: "Yea, take care, you guys, bye."

They couldn't get away from us fast enough.

*An aside: We know these conversations can be difficult. We know that it can be hard to know what to say. But a simple, "We're so sorry," or "We've been thinking about you guys," would have meant so much to us. There are no magic words, nothing that can ever fix this. All we're ever really hoping for is a hug or a kind word. Compassion. We don't need or even necessarily want to launch in to the details of what happened with each "new" person we encounter post-Evelyn's passing -- especially in a public place -- but we live this grief every day and hoping people can set aside any discomfort for a few minutes to try and connect with us doesn't seem like too much to ask.

We were stunned. We just stood there for awhile, mouths agape, jaws slack. I looked at J and said, "What the hell was that?" Not knowing what else to do, we turned our cart and made way for the bulk section. Insensitive encounter aside, I needed walnuts and peanuts.

And, empty bins. Apparently, we'd stumbled upon bin cleaning day, because a guy is painstakingly cleaning out each and every bulk bin with a rag. No walnuts, no peanuts. No nothing.

Which apparently meant we needed to talk about what had just happened some more.
"You know, that was really, really shitty."
"I know," he replied. "It's like they say, people show you who they truly are in situations like ours."
"I mean, who DOES that? They haven't said a damn thing to us, haven't reached out at ALL and they KNOW, Jason, they KNOW that Evelyn died, they KNOW and they said NOTHING. Like it didn't happen, like she didn't matter." Tears were springing to my eyes fast and hot and then something pinged inside my head and I knew what I had to do. I started striding down the aisle. "Where are you going," J asked, "honey, wait, where are you going?"

But I was on a mission, my whole body abuzz with fury. I was going to find these people and I was going to let them see my tears, going to tell them how their silence and their "How ARE you's" with their big stupid grins really made us feel. I could hear J calling my name, the cart picking up speed behind me as he was trying to catch up and calm me down. Where WERE they? Did they just run out of the store? Had we spooked them that much? We'd both felt it, the palpable "oh shit, we don't know what to say to these people." We saw how they'd clutched their children to themselves to keep them from getting too close. It felt like they were herding them away before our disease, our "children die around us" disease, could infect their kids and take them away too. Their too-bright grins oozed falseness. They looked ridiculous and scared to find themselves face-to-face with the cautionary tale of all cautionary tales.

Finally, I stopped. I feel J gather me up in his arms and I lose it, right there in the store, in the meat section in front of a display of salsa and sauces. I'm sobbing and saying over and over into his shoulder, "She mattered, Evelyn mattered." People are staring and at first, I don't care. And then...I do. I'm filled with shame, embarrassed about the scene I'm making. I know in my heart that I have every right to break down, that it's pretty amazing that this is the first time in 9 months that I've lost it in public, especially considering the magnitude of the loss and how many MANY triggers there are in any given day. But a grocery store of people are now bearing witness to that grief, and I'm suddenly very aware of myself. I have never felt so "other" in my life.

"I'm sorry," I say, over and over, "People are staring at us." Keeping my eyes trained on the floor, tears were streaming down my face and pooling on the lenses of my glasses. Defeated and deflated, I began trying to will people to look away.
"It's okay, honey. These people don't matter, we're never going to see them again anyway." And then I'm suddenly overcome with a new sensation. I need to see her. Pulling my phone from my purse, I find what I'm looking for and I just stare at it, sobs wracking my body. Her face, her beautiful face. "She mattered," I sobbed. "I know, honey, " J replied, rubbing my back. "I know."

For Someone Else

There is a book and school supply drive going on at work which is to benefit two day-care programs in town. A worthy cause, to be sure. A co-worker of mine brought in a children's book to donate and was telling our boss what a great book it was and how wonderful the author was, recommending it (and the author's other books) to her for her grandchildren, and I just tried my utmost to keep to myself, typing away, because Evelyn's nursery was/remains children's book themed and I don't want to look at one or have a conversation about one. I just don't. It's painful and yet another reminder of what should be but isn't. Another reminder of what other people have in their life (children to care and buy for) that we do not, and certainly not for lack of trying. Hoping against hope that she wouldn't stop by my desk to share it, making sure to look quite involved in my task, I kept my eyes cast down on my computer screen...and I guess I wasn't convincing enough because she stopped by anyway. "You would really love this book," she said, "it's such a wonderful story, so well written." I looked up and said, "I don't think I'll be buying any children's books for quite some time but thank you." To which she replied, "Well, I know, but maybe for someone else?" And there in that short seven word sentence is the summation of the last nine years of our lives. Someone else, always someone else. Someone else gets pregnant, someone else's family grows, there I go attending someone else's baby shower or someone else's child's birthday party. There we are buying a gift for someone else's kid for Christmas, engaging in a lengthy conversation about someone else's mothering experience, sending a congratulatory card or gift upon the birth of someone else's baby. Someone else's child who is not born too soon, who does not struggle to survive and who ultimately lives whereas ours does not...thus someone else's child gets to grow up, while ours will forever be 23 weeks and 3 days, 8 hours and 43 minutes.

This life we've been given, it's for us and us alone. I know that, and to some degree, I'm learning to adapt to it. And yet, there are pieces of my heart that I know will always ask the unanswerable: why? Why not us? Why always someone else? Why not Evelyn, too?

The Life I Almost Had

I long for the life I almost had. The one we devoted the last nine years to. The one our final IVF nearly gave us. It was so close. Mere months away. Evelyn was supposed to be born in early December but arrived mid-August instead and then the bottom fell out of our lives.

Her nursery is much like it was, with the exception of her crib, which we removed to the basement about two weeks after she passed away. Jason's best friend had flown in to support us and he took it apart because neither of us could bring ourselves to look at it let alone touch and disassemble it. But aside from the absence of the focal piece of furniture (and all it represented), Evelyn's nursery is much the same as it was. Rocking chair and side table in the corner, specially-made bedding {our one splurge} I designed with a quilter in Greece folded with care and anticipation on the rocking chair, accent wall painted a pensive dark grey, sunny yellow dresser/changing table, light gray blackout curtains, a standing lamp, and the bookshelves Jason had lovingly made his daughter with his own two hands. The shelves are filled with the children's books I've collected over the years, which, incidentally, was the theme of Evie's room. Aside from finishing touches -- framed prints of female characters from some of my favorite children's books one click away from being ordered, another shelving unit behind the rocking chair made from a pallet to be filled with knickknacks and stuffed animals, etc -- her room was just about ready. All that was missing was her. Our Evelyn. Our long-awaited, hard-fought miracle. Just mere months away...

Evelyn is indeed in her room now, but not at all in the way we'd planned. Hoped. Dreamed. Imagined. Instead of finding her napping in her crib or lovingly cradled in our arms as we rock her to sleep or doing a bit of tummy time on a blanket in the middle of the carpet, she is in the urn resting atop that same sunny yellow dresser which was supposed to be where we kept her onesies and burp clothes and spare wipes, and where we changed her diaper. Instead of butt paste and diapers, a changing pad and side lamp, there is Evelyn in her urn, a bouquet of fresh flowers (always), a few precious photographs, several figures of birds and angels and hearts, her memory box from the hospital, an owl doll a dear friend started to make for her when she was still in utero and finished and gifted us following her passing, her Evelyn Bear ordered from the Molly Bears organization, and a blanket my best friend's mother made her/us hanging like a banner from the top shelves: E V I E.

Our beloved child is reduced to ash and forever entombed in a cold, brushed-gold metal box, a quote from one of the books on the bookshelf above inscribed on top.This life is nothing like the one we thought we'd have. The life we, quite frankly, thought we deserved after so many long, difficult years. Where is that life? Reduced to ash, just like our daughter.

So yes, I long for the life I almost had, and for the future that should have been ours and hers, together. As long as I live, I will never understand why this is the life and future we got instead.

One day at a time...

Microblog Monday - One of the loneliest feelings

One of the loneliest feelings is when you look around and realize so many of your family and friends are happy. Truly happy, even blissfully so. Their lives are working out as they'd planned, dreamed, hoped, worked so hard for and then there's you and your broken life, unfolding as a nightmare, in tatters, despite everything. Your {or in this case, our} long-awaited child is dead and she's never coming back. There is no fixing this, only learning to live with it and somehow moving forward. It is then that you wonder, as you wistfully examine their photographs shared to social media, their wide smiles showing both top and bottom rows of teeth, if your smile will ever again reach your eyes.

Seven months

Blogging used to be a form of therapy for me. Instead of seeking actual therapy with an actual therapist as the months turned to years on our infertility journey, I'd write. In journals, too, not just online. And when Evelyn died, I wrote (quite eloquently, if I'm being honest, especially considering my fractured state of mind) to several friends and also through various Facebook posts about what I was experiencing as a bereaved parent. But now, as the days, weeks and months continue to march past, I don't quite know how to put my thoughts and emotions in to words. I'll think of something I want to say and I'll write it down and email it to myself so I can attend to it later because I've decided I want and need to write a book about our journey-turned-odyssey to parenthood and I want and need to talk about Evelyn's birth and death because I refuse to allow her story to be a taboo subject. But my mind is brimming with snippets of thoughts and I'm not quite sure how to formulate those snippets into cohesive paragraphs and eventually into chapters. My mind is all over the place, and my writing reflects that. To be expected, I know but it's still frustrating because in addition to reading, writing has long been a refuge. I've always loved the written word but now I feel lost where once I felt a sense of comfort. I don't know how to express myself now and perhaps that's because I still haven't figured out who I am yet, post-Evelyn's life and death. Her beautiful life changed me, there is no doubt about that -- but it is her untimely tragic death that has changed me the most. There will always be an Evelyn-shaped hole in my heart that will never -- and should never -- be filled.

Now, we go to actual therapy. Once a week has turned in to once every two weeks, and it's helping us manage our grief and discover healthy new and continued ways of coping. We are grateful for it and plan to continue as long as we are financially able. But I keep trying to find a path back to my old friend, writing. Even the words that I'm writing here, right now, seem wrong, forced, unnatural, halting, inadequate. And I suppose it feels that way because I've discovered that there are simply no words to properly describe what we have endured. Devastated, broken, empty, shattered, lost -- they all seem akin to the platitudes we repeatedly hear: "She's in a better place," "God must have needed another angel," "Everything happens for a reason, someday you'll understand why this has occurred," "God doesn't give us more than we can handle," "You're still young, there's still time to have other children..." I wish people would stop. Just stop. Because these phrases are all bullshit. Just like the words we try to use to describe the absolute dissolution of our lives as we have come to know them.

Who I am now, in the wake of my only child's death, is so far removed from who I was seven months ago that I cannot even begin to describe it. Every once in a while, I get a faint glimmer of that person, and instead of filling me with hope, it startles me. Looking in the mirror, I know who I'm looking at is me but the eyes are all wrong. There is a desperation, a hollowness. They are the eyes of a haunted individual and they give that person -- me -- away. I can smile (which feels revolting, most of the time) but the smile doesn't carry to my eyes. I have posed for a total of three photos in the seven months since Evelyn's death in August and I cannot look at them. I didn't want to take them but I gave in to appease someone else for two of them and the third was taken on my birthday so I gave it my best effort, despite how I truly felt, and smiled for the camera. It was a ruse but regardless, the photo exists. I turned 33 and there is a picture to prove it. We were with dear friends and I admit that I enjoyed the dinner and time we spent together because they are special, wonderful people who have so completely enveloped us in love following Evelyn's death, but I still felt completely uncomfortable smiling for that photo because what in the world do I have to smile about? My daughter is dead. The daughter we spent nearly nine years trying to conceive, the daughter we were supposed to welcome in to our family in December but instead, watched her be born too soon and then struggle to survive for just shy of nine hours, only to die in her daddy's arms. The daughter we will never again see in this life, the daughter we love as fiercely in death as we would have in life. People don't smile for photos when their child is dead. And yet, I guess people do. Because I did it. Because we are human beings and it's what human beings do. They celebrate milestones even if they don't want to, they say they are grateful for another year of life when it feels absolutely wrong that they have lived another year when their child got mere months. They feel desperately lost, the otherness of their situation and lives so utterly pervasive that they feel nearly inhuman at times, all the while going to work, shopping for groceries, going to doctor's appointments and conferences and tanking up their cars. They go out to dinner and to the library to check out another book or movie, the throngs of people around them completely oblivious to the person's pain because they wear their "functioning human" masks so convincingly. And they pose for photos, and they smile in spite of themselves. Because that's what people do.

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I feel jumpy and on edge today, like all of the nerves in my body are humming. Evie was born seven months ago today and tomorrow will mark seven months since her passing. SEVEN MONTHS. It feels unbelievable to me that so much time has gone by since our world came crashing down. And yet, it's just the beginning, seven months is barely any time at all. One thing I know: I need to do good in Evelyn's name. It feels imperative and important, and it comforts me to reach out to others in similar circumstances. In honor of her due date, I organized a baby blanket drive in December for the two NICUs who cared for Evelyn in August as well as the bereavement program at the local hospital. I'm working on a donation to the local library children's book section in honor of Evie's first birthday this summer, as well as compiling an Amazon Wish list for bereavement care packages for parents who must leave the hospital following the death of their child.  So I've come to understand what it is I must do with the immense love in my heart for our Evie Bee: give, do, love, help. As often and as far reaching as possible. It is my way of parenting her. I just  wish I knew what to do with all of my bitterness and anger and rage. The fury at the unfairness of her death, and that she suffered as she struggled to survive. I am her mother and it was my job to save her and I couldn't do it. I am incensed that I could not save her, and it boils my blood that despite the many years it took to get her, the outcome is what it is. I understand that it's cathartic to get it out but in the end, it's still there, simmering just below the surface. I don't lash out at people, I don't answer how I'd like to when asked how I am. Because I know everyone is just trying their best and it's no one's responsibility but ours to learn to live with our daughter's death in a way that still allows us to lead meaningful lives. No one else is walking around with the pain of Evelyn's passing like an anvil clinging to their leg, threatening to pull them under if they stop dog paddling. That's us, and us alone. Yes, people feel for us. Especially those closest to the "epicenter" as it were. My parents and our closest family and friends. But everyone else? They are saddened that Evelyn died and wish so so much that she had lived, that our lives hadn't taken this dreadful turn. They wish that for us because they love us. But no one can fix it. This is an unfixable situation. And it is so incredibly lonely.