For Marley....

Today I awoke to the unimaginable. A friend had lost his only daughter. A beautiful, healthy, 15 month old girl named Marley. She had her father's eyes. I never got to meet Marley. Her parents and I had plans to get Helena and Marley together for a play date in the near future. I had just spent some time with her father up at the lake house. It was more than obvious this was a little girl so beloved, so cherished. He went on and on in the way a first time parent does. Each story a gem, relaying each little milestone his pride and joy had made. And now it has all come to a screeching halt. Marley's passing was sudden and remains full of speculation. Sometimes I think that might be the harder part. Not knowing why your child has left. Having no preparation for their departure. We had a full 24 weeks to prepare for losing Lucie. We knew the cause of her impending death. We had some sort of control; some sort of say in how we said goodbye. My friend and his wife did not have this luxury. They were called to come see their baby and say their goodbyes. No time to gather any composure. Not a second to try to make sense of any of it.
My heart breaks when I think of it. These parents, good parents. Good people. Loving people. Ready to be there every step of the way for their little girl, to bring her up in this world full of so many parents who drop the ball. People walk away from their children every day. They make conscious decisions to stop parenting and stop caring. They abuse them. They betray them. And somehow they remain here. It will never make sense to me. I know my own pain and how much it hurts and I can't even fathom what these people are going through. We were so blessed to have Helena come out of that terrible situation. We were so lucky to have Anezka and Lukas to fall back on. Grieving is much easier when you have other life you made around you, I've found.

People were looking to me for some advice on how to approach this with them. The only thing I felt strongly about was that you never ignore or pretend you don't know what happened when you're around the grieving. I've had so many people who I know are aware of Lucie, never say a word to me about it. They're too scared to bring it up, not sure what to say. SAY ANYTHING. Let the grieving turn you away. Allow that person the control they missed out on, the privilege to say, "not now, please" or "thank you". Don't place further burden on cracked and broken shoulders by waiting for them to talk to you and bring it up. We who are grieving are often more concerned about your comfort than our own. Perhaps it's extra, misplaced nurturing that we feel the need to carry out with someone, anyone. Cater to someone else besides ourselves. I find it surprisingly cathartic to offer up my help to them. I'll be their shoulder, should they need it. I'll carry them if they call on me.

As I've said before, I'm not really the praying type. But I send my heart and thoughts up to the universe for people I know need it. This isn't a void easily repaired with time. There is no spackle for the hole in the wall. There is learning to walk with darkness. Learning to live with pain. I beg for peace and love for all of the family. They desperately need it. And for beloved Marley. May she rest in peace and love and always know she was someone's everything.

torture...follows reward....follows torture...

There is a definite dichotomy that exists within me. When I have the opportunity to gush about my wonderful children, I'm always pausing in my head. Do I? Don't I? How well do I know this person? Does it matter? How will they take it? How will I tell them? The fact is, if you've ever asked me about my kids, you've probably witnessed my brain slow to a standstill while I work out the answers to those questions. And maybe I've told you the whole story, or maybe I've simply smiled and delivered your inquiry with one worded answers; the less details the better. When people do hear initially that I've had two sets of twins, and then I proceed to talk about three children, I can see their wheels turning. They're doing the math, they're thinking to themselves, "I heard two sets, right?". Then come the inevitable oos and ahs of praise and admiration for two sets of twins, "what lovely children!", followed by the let down of the "oh, I'm so sorry" that is always delivered with this terrible puppy dog eyed look of pity. I always feel an internal battle during these moments. Should I have said anything at all? Is this person going to tell me it was God's will? Can I not just talk about my kids and share like a normal person without having to ride this insane roller coaster of emotion while the words leave my mouth on autopilot, smile plastered on my face like a damn Stepford Wife? Could my biggest problem please be a tantrum over toys and not how to explain for the millionth time that no, Lucie isn't at the hospital, sweetie, she's dead, her body stopped working?
How many kids do you have? 3, 4? 4-1? Why can't it be easier? When will it stop feeling like torture and start feeling ok?

did you have to let it linger....

It's been a while since I've written. I think part of me actually felt like I was being self indulgent in my words. At the same time, isn't that what it's all for though? To indulge these feelings, to put them out there to the universe and hope they bring some good back?

Regardless, I'm back. Today I was thinking of spring's renewal; life eternal. I'm sad she's not here to enjoy the green coming to life. To witness bugs on the ground scrambling to their tunnels. To share in that with her sisters and brother.


I watch the three kids out in the sandbox and it affirms how lucky I am. Three beautiful, bright children who somehow manage to keep me grounded when I've wanted to float off. I'm missing her more these days when I see Helena doing something for the first time. Or when I catch her in the middle of a giggle fit like only a child knows how to have. I just try to hold on a little longer, keep her gaze a little longer, hope she holds my hand a little longer, listen to her squealing in joy a little longer. She's simply a phenomenal child, a gift in every sense of the word. They all are. With each sunrise, her childhood is passing. Soon they will all be teens, just trying to find a way to ditch their mom. Letting me know loud and clear, I'm not needed anymore. I hope that day never comes. I need them to need me, to want their mom, to want that embrace only their mom can provide.

So between now and then, I'll just linger a little longer with them. Admiring their innocence, their curiosity, their passion for the simple.

Levity

A lot of what I write is bogged down in self reflective sorrow and grief. For obvious reasons, of course. Many times I hesitate to write a more up beat post because the maternal guilt I harbor stops me, reminding me I am grief-stricken. And I am, I am. But I'm also so privileged to witness another human being paving their way in this world. Greeting each new encounter with the same level of excitement and curiosity. She's not jaded, she's not bitter, she's porcelain skin innocent. Her father and I watched her today as she realized that crawling is not reserved just for retrieval, but for travel. We watched her place hand after tiny hand in front of herself, lifting her knees with slight trepidation, showing us that indeed, this IS new and scary and exciting all at the same time. She looked up at us as if to ask, "Am I doing this right?" and we reassured her "Yes! Go Helena! Yes!!". As she giggled and gurgled down the hallway, we saw the delight wash over her face when she realized in an instant that she can chase after her siblings. Cheeks smooshed up to her ears, baring all eight teeth, our baby girl began forging her way through this world. We encouraged her to follow, we assisted when she nearly ran into the wall. But mostly we sat on the sidelines, hearts bursting, laughter echoing, as our daughter made her way.
It is in moments like today, where everything is okay, pain subsides, the void almost full.

Shining Light

Everyone is always telling me they're amazed at my strength. At how I manage to hold myself together when something so devastating as losing a child forced itself upon my world. I appreciate peoples' genuine admiration in that regard. It's nice that friends and family notice that I actively try to keep my head above water. It means I'm mostly successful at it, which in turn, means I'm somehow managing to meet my kids' needs.
The 26th came and went nearly as fast as Lucie did. The night before, I looked over old photos of their birth. I realized, I never got to look into her eyes. I'm sure they were just as blue as her sister's. They bring to mind tiny robin's eggs and spring moving in where the cold once presided. When you look into Helena's eyes, you are immediately rejuvenated; any clouds clear and the sun shines on green budded trees of your soul. Ironically, Helena's name literally means "sun ray or shining light". We never planned that. It just happened. Equally by chance, her middle name Grace, means "blessing". Indeed.

Full circle.

In a few days, it will be Helena's first birthday. No one can believe that day is here, least of all, me. I remember the day I went in for one of my last routine check ups and there were changes in the babies. I remember feeling the blood leave my head as the doctor was telling me about my admission to happen later that day. All I could think about was that it's time. Time to say goodbye. Time to say hello. Like some sinister twist on an Aloha.


I was walking around the house today, spotting stuff I haven't had the courage to part with or even deal with in a year. That tote bag of hospital paperwork- the only time I signed as your parent, where I actively made decisions as your mommy, tucked away in my closet. The tin containing the cast of your hand and foot prints that the nurses made for me. The teddy bear angel with the glitter rubbed off the wings, hanging from a suction cup on the side of the computer. Your photograph sitting in your twin's room, waiting to be hung. The blood stained blanket that once held you while I held on for just a little longer, sitting in the dresser drawer. Cards from all over with words of encouragement and sympathy. The plant that was sent to me for you and your sister, leaves turning black like some terrible cancer. Your urn- the vessel that holds the remains of your physical body. It's probably covered in dust, I'm terrified to pick it up for fear I'll drop it. I get cards in the mail about you. Just the other day I got one from the two nurses who were so kind. They washed you up, made sure you were warm. Baby, I can't believe you're gone. At night the computer screen goes to sleep while photos flash across the screen. I always seem to look up right when there's one of you in my arms.


You would have loved your brother and sisters. They're full of life, laughter, and love. They ask about you all the time, and I know your twin feels you still. I can see it in her calm, quiet eyes. In the way she rests her head on my shoulder. When she twirls my hair on her finger. I know that somehow, through her, I feel you too.

I don't know what happens when we go, but I'm just hoping you know how much I love you.

dedication, naive and true

This one is for all the mothers out there who have walked a mile in these shoes. This is for all the women who get up each morning and give the day their very best, no matter what they're feeling in that moment. For moms who wear sunglasses all the time to hide their tears. Women who can't listen to songs without breaking down. For those who cry alone in the shower. For moms who are trying to pick up the pieces. For moms who have other children to care for and somehow manage to pull it off. For moms who have to explain to their small children what death and dying is. For women who entered the hospital with child, only to exit without. For moms who have only a set of ink footprints or a photo as remembrance. For those moms who now visit tiny grave sites or have an urn in their house. For moms who can't bear to throw away any paperwork that has to do with their lost child; who saved the plastic bag their baby's ashes came home in. For moms who's friends forgot about them, who's family carried on with their own lives and forgot to ask "how are you feeling today?". For moms who found comfort in words on a screen because the people in their life are too scared to talk to them about it. For moms who find solace in the kind words of a stranger, who find a bit of peace from the people who were there when it all happened. For moms who feel like their spouse has forgotten. For moms who never let a day go by without thoughts of them. I dedicate this to those women who know what it's like to be me.

sometimes.

large fingers pushing paint
you're god and you've got big hands
the colors blend... the challenges you give man
seek my part... devote myself
my small self... like a book amongst the many on a shelf
sometimes i know, sometimes i rise
sometimes i fall, sometimes i don't
sometimes i cringe, sometimes i live
sometimes i walk, sometimes i kneel
sometimes i speak of nothing at all
sometimes i reach to myself, dear god

-EV




Sometimes I reach to MYSELF.


There have been so many times over the course of this journey where people have been so bold as to tell me, "God doesn't give you what you can't handle."

I have a strong reaction to that kind of "comfort" that I suppress for the person sharing, as I know it's what they tell themselves to get through their own trials and tribulations. But for purposes of full disclosure, I'll share here what I think of it.

Bullshit. It's complete bullshit. It makes no sense to me why a god who is hailed as benevolent, compassionate, and loving would even present the world with such pain as dying children. Children who live in hospitals. Children hooked up to machines. Children who never see the light of day. Children who never even had a chance. Or how a god such as He would allow such innocents to be born to people who aren't even close to being able to call themselves parents; people who can't even be classified as animals because they're just pure evil. Manipulators. Abusers. Murderers. And remarkably, this same god doesn't strike these villains down with one fell swoop. No, He lets them live on, wasting each day they have on this earth. To the believers out there, I'm sure this comes across as blasphemous. But to other mothers and fathers who, like myself, have been forced to let their own children- their babies go, this is a natural question and contradiction that resonates from within their souls. When you carry questions like this with you every day, you begin to see why people walk away from faith. Some say that God will instead give you the means to navigate through turmoil like this. If there is a God and if that's the case, I hope I'm given the peace to deal with a heart and mind that will always throb with the pain of void. I hope I'm granted the means to somehow understand how my child didn't even have a chance as I sit and watch the evening news rehash the day's crimes. But I'm not counting on those things for myself. I'm counting ON myself.
I muddle through this madness with my heart on my sleeve. I walked through the grocery store today, a fragile mess. Eyes brimming with tears growing, ready to spill over the edges and flow down my cheeks. As I approach our one year anniversary, I plan for the big celebration of Helena's birthday. I do my best to focus on her, a living light beam of dripping sunshine. But I won't deny the heartache I feel. I cry every time I search for birthday invitations for her. I cry when I look at birthday cakes. I cry because one should be two. I cry because the distance between my past with her and my present without her is growing.

Just Breathe.

I must have started and stopped this entry 10 times now. I've been watching and reading about the disasters in Haiti and the colossal loss of life- the children being pulled out with bodies limp, those who managed to make it, now orphaned. If a part of you doesn't die inside from seeing that, you probably weren't alive to begin with. Leave it to such tragedy to put your own life in perspective.

Anyone who has experienced loss knows that the pain is real. They know it never goes away. It might subside, but eventually it all comes flooding back over you, like the ebb and flow of a wave. Anyone who has experienced loss knows that while the void is great, somewhere out there, someone is hurting more. Someone is desperately trying to fill an even bigger void. Anyone who has walked a mile in these shoes knows that to acknowledge the good in one's life is not equal to negating the bad. Quite the contrary. To do so means you feel that void every second but you know that cherishing the love that surrounds you is part of survival. You take pleasure in the quiet mundane of day to day life. You are grateful to be here, to wake to see another day. To hear the laughter of your other children. To come home to your soft place to fall. When you know bittersweet, 365 days a year, you learn to let the love come to the forefront of your world.

Anyone who remotely knows me, knows I don't think anyone says it better than Vedder. So I'll just cut this one short today and leave you with these words. What more is there to write anyway? I listen to this daily as a reminder to treasure all that I have in my life.

H&P

Being married to a doctor, I always hear random medical terms and abbreviations of the job. H&P is one of them. History and Physical. Today I went to the hospital and picked up any and all records of Lucie they had. The women who man the medical records office were so kind. No charge at all, allowed me to use a back hallway for privacy as I navigated my way from one building to the next. I just held the thick envelope for some time, opting to grab some coffee and a pastry instead of opening it right away. I walked over to the North Pavilion, the building where I had the girls- the building the kids call "that's the place where Helena stayed and Lucie died and you had all the bleed, mommy." I had no real plan when I walked over there. I had no appointments. I guess I just wanted to be in the same area. I found a bench and took Helena out of her stroller. She sat on the bench with me, slapping the leather and cooing and giggling with delight. With one hand on her, I managed to open the envelope with the other. There on the bench outside the maternity gift shop, I read about my girl. I read her official cause of death; multiple congenital anomalies. I read her official time of death;"death was called at 1400 hours on 26 Feb 2009". There was one piece of information I had not been aware of previously. Lucie had cardiomegaly, which means she had an enlarged heart. I knew her chest cavity was small due to her abdominal issues, but I wasn't aware that her heart was bigger. I always felt that metaphorically, she had the biggest heart of all. She stayed alive in there for her sister. She stayed alive in there for me. And some part of me knows that the reason Helena is such a happy, calm baby is because she's grateful. She sensed from the start that there was a loss. You could see it in how she slept, having been used to nuzzling with her twin all those weeks.

The image of my dying daughter taking her only breaths while I held her in my arms is burned in my mind. I remember seeing the blue move from her fingertips, inward. I remember looking over at my husband, tears falling from his face to hers. I wiped away the secretions near her nose. I still have that cloth. I have the blood soaked blanket she was wrapped in. It took me weeks to be able to wash it, but I finally had to as it was decomposing. I have her hand and foot prints tucked away in my closet. Her ashes sit in a small urn on top of the kitchen cabinets. It was the only place where I could still look at her every day but the kids wouldn't open it. We never sealed it because one day we hope to spread her ashes and plant a flower garden. All little tokens of my little baby and the imprint she left on this world. You better believe she had a big heart.

35 weeks of unknown

For those who don't know the background story of Helena and Lucie, I'll fill you in a little. When we found out we were having twins again and that in fact, something was seriously wrong with one of them, our world came crashing down. But anyone who knows my husband and I, knows we're really rational, practical people. We didn't start praying, as we're not religious, we started asking about risks and statistics. Any way we could get our hands on solid, absolute information and we were there. When something like this happens to you, you move from the category of "oh I have cankles now and I keep puking, woe is me" to "I have one healthy baby and one baby who will probably die and I have to do what I can to save one." There's nothing like forced perspective to keep you inline. Of course we're not cold individuals. Our mourning process began in that single instant. My husband is a physician so there was no candy coating anything. Every discussion was dominated by how are we going to save Helena? What are we going to do to ensure she will remain healthy and come out ok? Had there been a way to save Lucie, we most certainly would have done that. But after visits to specialists in both Detroit and Cincinnati, it became clear that this pregnancy was going to be a bittersweet one. In utero, Lucie was fine. She actually trucked along quite well with her sister. They were avid kickers and thumb suckers. But we knew that as soon as she was taken out of the most hospitable environment she'd ever know in her short life, all of that would change. Lucie had a giant omphalocele which contained her liver, and part of her bowels. It was covered with a membrane. Her abdomen simply did not fuse properly so it resulted in a large hole with her internal organs on the outside of her body. As a result of this giant sac of large organs on the outside of her body, the internal organs that were still inside suffered. Her heart was pushed up into her chest cavity. Her lungs would never develop properly. That part there was what sealed her fate. Everyone always says they'll do anything to keep their loved ones alive, but keeping a premature infant alive on life support that she'll never be able to come off of, for us, wasn't heroic, it was inhumane. I don't judge other parents who do that. You never know what you will do until you are thrown into a situation like this. These weren't Lucie's only issues though. In addition she had a severe 90 degree scoliosis. When I look at the photos of her as she was removed from my uterus, I can see the severity. She had a meningomyelocele, which means her spinal cord and back didn't close up properly. She had some other issues as well, but those were the three major ones. When she was originally spotted during the first scan at 11 weeks, they thought she was actually fused to my uterine wall. The fear and concern on everyone's mind for my pregnancy was that if Lucie died in utero, the drop in blood pressure from her death could potentially result in brain damage for Helena. There was a host of blood issues going on the entire time because they were identical twins in the same sac, sharing a placenta. WIth each passing week came more ultrasounds, more dopplers, an MRI, non stress tests, etc etc. With each test they hoped to gain a better picture of what actually was going on in there, but unfortunately, the bigger babies grow and the more there are in utero, the harder it is to make things out clearly. During this time we had to make a birth plan for Helena and one for Lucie. Because Helena was completely healthy we decided for her, if she came out and wasn't breathing, use the heroic measures. In the case of Lucie, we knew that even if we did that, she'd never make it. It just wasn't her fate to walk this world. So we chose to hold her, to love her, to whisper sweet nothings in her ear. We'd just be with her, the only time we'd ever get to be her parents. The 35 weeks the girls were in me were terrifying and peaceful. Tragic and beautiful. As the time got nearer for their delivery, I grew more sad. I knew my time with one of them would soon be over. I treasure every kick, punch, and hiccup. I treasure the times her older brother came up to my swollen belly and talked to her. I treasure all of it, the good and bad, because it's all I have of her.

Somewhere between 1 and 365....

I'm starting this blog quite late into the first set of 365. In a little over a month, I'll be celebrating the first year of my youngest daughter's life and concurrently mourning the first year of her identical twin sister's death. Helena Grace is also known in our little family as Baby Bean, Baby Prozac, and the "sweet" portion of what is recognized as the most bittersweet day our lives. At 7 weeks I had gone in for my first scan to determine whether or not I was having multiples again. I was told I was finally having a singleton pregnancy! Since my first pregnancy was with boy/girl twins and wasn't without its own problems and scares, I was so thankful that this one might be easier. At 11 weeks, we went in for a scan and learned that we were, in fact having twins, and that there was a serious problem with one of them. It's amazing what can run through your mind in an instant like that. At the time, my husband and I were in the middle of planning our house we wanted to build. As soon as the tech told us it was twins I muttered something to the effect of, " Oh crap, now we'll have to modify the floorplan." And no sooner were the words out of my mouth, did I hear the tech say "and I need to call the Doctor, something isn't right." The guilt I have from that moment will never subside. It was momentarily placed on the back burner however, while panic, confusion, sorrow, and pain moved in.

One twin was perfectly normal, healthy, thriving. One twin was anything but.


It's hard for me to write it all out. I can talk about it with more ease. Writing it makes it seem so much more final. I'll share the details of the pregnancy journey over time. It's much too complicated for one post, and much too emotional for me to write out at once. Besides, I have three small children. How the hell can I write all that down in one sitting? For now, I'll simply say this...I miss you already, I miss you always. 'night.