DADDY, GUEST BLOGGER: A Song of Six Days

I asked my husband to write a post recently and below is what he sent. I love him more than words...

------------ 

Once upon a time I had beautiful, tiny, brave and brown haired daughter.  The daughter who died, six days after she was born, while I was helpless to save her.  My daughter was born too early and too little, with impossibly tiny fingers and toes and still covered in downy body hair.  She had so many tubes, needles, and sensors attached to her that it was difficult to find a place on her body to touch.  All of these things made her visibly uncomfortable and she would sometimes tear at them and silently cry; her face all wrinkled and red.  It was absolute torture that I could not pick her up and comfort her, especially considering that in my mind, protecting my children is the truest definition of a father.  Eventually my wife and I found we could sooth her by stroking her hand and singing to her.  When she heard our voices we could see, in the many monitors, her heart rate rise in response and she would grab our fingers and kick her legs.  I remember with both joy and sadness the feeling of her little hand grasping my finger, of her little silent cries and furrowed brow, how we could ease those cries by singing.

Six days.  That is all the time I had with her.  I should have spent every moment at her side.  Instead I remember spending endless torturous moments looking for parking spaces, running errands, paying bills, all in the hope that we could all travel to Washington D.C. where she could get the best care available.

If I knew then, what I know now, I would have spent every moment at her side singing to ease her pain. I would have sung her a song of the endless love of fathers for daughters; a song about the joyful electricity in holding her small perfect hand; a song about her beautiful and passionate mommy who loves her with fierceness and longing.  I would have sung a song about her wild and uninhibited brother running fearless and covered in bruises; a song about her diverse and incredible grandparents; a song of her honorable and occasionally roguish ancestors.  I would sing a song of autumn leaves and spring rains, of rich dirt and deep water and a planet teeming with endless variations of life.  I would have sung a  song of the scents of ginger, roses, wet dogs and freshly cut grass. I would sing a song of fairy tales and myths, legends and secrets. I would sing a song of black birds, busy ants, flitting butterflies, lovely flowers, quick lizards, and crafty squirrels. A song of boo boos kissed and tears dried.  I would sing a story about a little girl standing on her daddy’s feet to learn the two-step; I would sing a story about Girl Scout cookies and Sunday dinners and eating pizza on the floor while watching movies on Friday nights.  I would sing a song of walking my beloved girl down an aisle to a groom. I would sing a song about her and me unending, while my voice became hoarse, while my hair and nails grew long, my ribs become pronounced and my eyes became blind.  I would sing a song of love so deep and so eternal that the gulfs would open beneath us and fire would light the sky.   I would sing our song until they drug me away.  If my song could have eased a single second of her pain I would have sung until the walls around us crumbled and the world fell apart.  Instead, she died and I could not sing to her, and the walls really did crumble and the world really did fall apart. 

So now our lives go on, but I sing to you silently.  Whenever I see something that moves me, or whenever your brother (and future sister) experiences something new, or whenever I feel loved, or whenever I miss you, I add to the silent song.

Where's the love (and support)?

When a woman has a miscarriage, stillbirth, or infant loss, it is understandable not to know how to react if you’ve never experienced the tragedy yourself. Even if you have experienced one, two or all three of these horrific events, it still doesn’t mean you understand what another grieving mother is going through. We all grieve differently. Some of us are external grievers while others want to internally process what has happened. I NEED to talk about what has happened. I NEED people to remember my daughter (and two miscarriages) and to just say her name: Eleanor (Ellie). I NEED people to continue to offer love, patience and support and to never assume enough time has passed for my “getting over” her unfair and untimely death.

After Ellie died I desperately searched for resources on HOW to grieve. Was I overreacting or dwelling or trying to be the center of attention as my sister said? Why couldn’t certain family members and friends help me? Why were they just being silent? How did women cope with this before me? How could I ease the pain? I was lucky to stumble across some great organizations like the Compassionate Friends and Faces of Loss, Faces of Hope as well as find books that I could relate to (I compiled them in the resources tab of this blog) and started grief counseling. But why isn’t there more support for us?

As National Pregnancy and Infant Loss Remembrance Day approaches on October 15, I find myself thinking about social norms and infant death more and more. I am proud of the community I belong to, although the membership dues are high. There is an amazing support network in place, but it still taboo for outsiders to acknowledge and support us. A study from 1978 titled, “Death of an infant: Parental Grieving and the Failure of Social Support,” The Journal of Family Practice, Vol 6(4), Apr 1978, pp 785-790, looks at the lack of support for families who have lost an infant compared to those who have lost an older child or adult and proposes ways to help the bereaved (please do not think I believe I have it any harder than someone who lost an older child or that they have more support). Thankfully there are more resources out there now through the two organizations I mentioned above. (I even sent one to family members and friends with no response or reaction…and no change.) But those are largely found and used by the bereaved themselves, not outsiders.

Women in my community spend an exorbitant amount of time just trying to get people to remember their child(ren). They create amazing art, fundraise and support causes, write heartfelt, soul-bearing stories…yet they are largely ignored or looked upon as dwelling or being negative. Death is a part of life. Of course we understand that. As much as I hate it, more babies will leave before their time. The indescribable pain of losing a child will eventually lessen as we begin to heal. But what are we to do? How can we make this subject less taboo and more accepted...because some statistics state that as many as 1 in 4 women will experience the death of a child!

It seems that wearing a pin with a lost child’s picture or name will never get the same reaction a pink ribbon will. Yet we are the same. We fight for awareness, survival and support.

A Poem for My Rainbow, Adelaide

A Different Child

By: Pandora MacMillian

People notice there's a special glow around you.

As you grow, surrounded by love,

Never doubting you are wanted;

Only look at the pride and joy

In your mother and father's eyes.

And if sometimes between the smiles,

There's a trace of tears,

One day you'll understand.

You'll understand there was once another child.

A different child who was in their hopes and dreams.

That child will never outgrow the baby clothes.

That child will never keep them up at night.

In fact, that child will never be any trouble at all.

Except sometimes, in a silent moment,

When mother and father miss so much that different child.

May hope and love wrap you warmly

And may you learn the lesson forever...

How infinitely precious.

How infinitely fragile.

Is this life on earth.

One day, as a young man or woman,

You may see another mother's tears,

another father's silent grief.

Then you, and you alone,

will understand and offer the greatest comfort.

When all hope seems lost,

you will tell them with great compassion,

“I know how you feel. I'm only here because my [parents] tried again.”

20 Months Without Her.

Today marks the 20th month since Eleanor died. I have cried twenty times on the 14th.

I still vividly remember that day. We were so hopeful. The doctors said she was stable enough to fly to Washington D.C. for heart surgery and after being delayed one day already (so the flight team could assist with Haiti earthquake disaster relief), we were very eager to get going. Chris and I sat by her that morning and allowed ourselves to fantasize about bringing her home. We talked about how protective we would be of our sweet heart baby, but how important it was to let her be a normal kid. Oh, how we wanted to hold her! We made plans for me to fly with her that evening and for Chris to fly commercial the next morning. The Ronald McDonald House at Children's National had a room ready for us, although we knew we would be staying with Ellie as much as possible in the PICU. We busily cleaned our room at the local Ronald McDonald House in preparation for checkout and made final arrangements with family for the care of our then 19 month old son while we were away. At 2pm that day, we received a call that Ellie wasn't doing well and rushed back (we had only been gone an hour or two in order to pack up and clean). We only had six more hours with her and then she was gone.

I am starting to get anxious as we get closer to the 24 month mark. Two years since my baby left. It feels like a lifetime ago, yet it is all still so fresh. I feel like a different person and don't think I will ever be who I was January 3rd of last year when we were still so blissfully ignorant. Ellie was perfect as far as we knew. But she was already fighting for her life.

Will I ever be 'normal' again? Will this ever make sense? Will this hole in my heart ever heal enough to where I can say her name without fighting tears or feeling that lump in my throat?

As I am typing this, her baby sister is wiggling and kicking inside at 34 weeks. What a bittersweet time.

Hoping for Hope

Today is the International Day of Hope. If you have lost a baby and are part of any online communities, especially Facebook, you may have noticed people changing their profile pictures for today. We do this in memory of our lost babies and to show solidarity to the other families who had suffered.

The Day of Hope is a great project. As "Babylost Mommas" we try to cope with our grief daily. It is always there. So it is nice to step back from that intense emotion and think about hope, as hard as that may seem sometimes.

Today I am basking in the memory of my sweet Ellie and hoping that others will too. Today I am smiling and hoping that I can bring my rainbow baby home, healthy in October. Today I feel love from my husband as we hope for strength and the ability to heal. And today I hope that the those in different phases of their baby loss journey feel the warmth and support of those that understand. Today I hope.

Shhh...Don't Poke the Bereaved Mother!

"If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift......." ~Elizabeth Edwards~

So very true. I need to talk about Eleanor, not all the time, but often. Sometimes I feel like this is all some horrible nightmare; that it is surreal. Talking about her and what has happened, and even my fears with my current pregnancy, help ground me. And they certainly help get out some of the tension and pain that builds up. You won’t break me if you mention her name. Instead you will lift me up. Even though it has been 19 months, her death is still so fresh to me and I suspect it always will be. I think I will always need to talk about her and hope there is always someone there to listen. (Please don't get me wrong. There are many very sweet people who always let me talk about Ellie, especially my best friend and husband.)

I belong to such a beautiful, yet shattered community. We grieve. We remember. We support. We love. We are mothers no matter what the circumstances were surrounding the death of our child(ren) or how old they were when they left. Several members have had horrible conversations with family and friends and been treated so unfairly (me included). But what has really struck a nerve with me lately is Facebook.

Ok, we all know one shouldn’t judge their self worth by Facebook. Not all of those 200 people are truly your friends and that is ok! But when a bereaved mother posts about their child and is attacked for: not “moving on”; talking about something that should be private; trying to be the center of attention; even being inappropriate and macabre; or sometimes even worse, when they are ignored, I become enraged. There are already people out there that get annoyed with pictures and stories and updates about a Facebook friend’s child. I say unfriend/delete/block them! It’s your page, do what you like. Children are part of what defines those that have them (and it is okay if you don’t). But for the people that do not get annoyed at posts about living children, why is it any different when a post is about a child no longer here? The child was. They existed. They were loved and wanted. Why can’t the mother talk about that? What is the commentor afraid of? Why does a picture of my living son get 33 comments and likes while one honoring my daughter gets 9 or less or sometimes none at all? I’m not trying to “rub” my tragedy in anyone’s face. I am not hysterical in any way. I don’t need you to comment in order to know she was/is loved. But I do need her to be acknowledged. All I have left of my six day old daughter is her legacy. The pictures of her while here are personal and I couldn’t stand it if someone negatively commented on her appearance, so I choose nott o post them. But I also can’t post a picture of her first birthday or first day of school. There will be no pictures of her first sporting event or play or formal dance. IF Facebook survives the fickle social media world, I won’t even be able to post pictures of my grandchildren. So all I have, and all the members of my community have, are pictures of things that remind us of our child or events in where we are honoring our child. How hard is it to take a few seconds out of your day to lift me up while honoring my daughter? You won't awaken some sleeping bear or anything! I am a mother. A proud one at that!

Can you give me that gift Ms. Edwards is referencing in the above quote?

Trying to be Strong

What does that mean? Strong. "You are so strong." "You are stronger than you think." No, I don't think I am strong. Quite the opposite really. But what other option do I have? I must wake up. I must care for my son, whom I love more than anything except my husband. I must get up and go through the routine. I want the beautiful baby girl growing inside me. So, I continue on. I try. I try so very hard.

I have been fighting tears the last few days. On Saturday we went to the Ronald McDonald House where we stayed during Ellie’s fight. We try to bring lunch occasionally to the brave, humble, loving parents staying there because people did it for us when we were guests. We decided to stay and eat with them this time and spoke to a nice father and mother-in-law. We also got to see Ellie’s “heart” displayed in the hall. If you aren’t aware, the RMDH memorializes children with hearts…this chapter has several, several display cases full of them. It was emotional to see hers.  I miss her so badly. I think about what she would look like and what her personality might be. My heart aches for her.

This morning, after we dropped our son off at daycare, I had a flashback to the moment I was holding Ellie and signing as her heart slowly stopped. I didn’t want to upset or worry my husband so I fought as hard as I could to make the tears stop. I’m not sure he noticed. But I could hear and smell everything from those last moments. I caught myself starting to rock in my seat as I thought about it all. She felt so good in my arms even thought I knew it would be the last time…

Tears. I try so hard to think back on my grief counseling. Distraction. Looking at a picture of my son. Deep breaths. Take a drink of water. Count something to use that other part of your brain. Take a walk. This is so hard. When will it get easier? August marks the 19 month since Ellie died and it still feels so fresh.

I start my third trimester this week and I am terrified. Although we got the “almost” all clear from the Maternal Fetal Medicine Specialist and Pediatric Cardiologist (you will never get a 100% bill of health) at 20 wks, I am still worried. Ellie was okay at 20 wks too. And it was at her 4D ultrasound at 28 & 30 wks when we discovered her severe heart defect and hydrops. We are having a 4D for Adelaide this Friday and I will be 28.3wks. What if they see something again? And how will I react to the 4D in general? I have been trying hard not to obsessively call my doctor or rush to Labor & Delivery at every twinge of pain or fear. I try not to talk about my constant anxiety and awful thoughts that something is wrong. I try to make other people comfortable when I can and not talk about any of this (except here). I try. I try so very hard.

I know what some of you are thinking. Stop with the dire thoughts. Think positive. Everything will be okay, you just know it will be. Just TRY. That’s what I thought last time too. But now that the unimaginable has happened, it makes it much more real. Bad things happen. Period. And they can certainly happen again. There is no reason why some babies live and others don't. I don't care what your philosophical views are, there just isn't! It's not fair, but that is nature. 

I will continue to hold my breath through this pregnancy. And I will continue to worry. But I am hopeful. Enjoy this pregnancy, you say? It's time to move on and stop dwelling on the past when there is nothing I can do about it? You think I should just try harder? Walk two steps in my shoes and tell me that again.  

What’s in a Word?

After I was able to (somewhat) accept the death of Ellie, I started to seek out other women who had experienced the loss of a baby. Faces of Loss, Faces of Hope, the Compassionate Friends, and the MISS Foundation helped me tremendously as did a few private Facebook groups. I didn’t realize that I was part of such a large community and I often hoped the membership number would never rise. Although I feel I am starting to get to a point where I can offer support to other women, I would prefer to never know another bereaved mother! I want all babies and children to just be healthy and safe. But we all know that isn’t reality.

Last week, my husband and I attended the memorial service of a 24 year old man. His mother worked with us and his fiancé is a summer student worker in my husband’s office.  When we learned of his tragic death (an unsolved murder at the present time), my heart broke for his mother. Although there were very different reasons for the deaths of our children, I could empathize with her; I knew some of the emotions she would be experiencing. There would be: shock, guilt, anger, irrationality, pain, sorrow, and grief. She would be asking why and how something like this could happen and would probably try to blame herself in some way. Knowing this, I struggled with how to help her as someone 18 months further along in the grief journey. In the end I wrote her a brief letter and bought her the book, Beyond Tears: Living After Losing a Child. I dreaded attending the memorial service, both out of fear for seeing another mother in pain and for the feelings I was sure to experience remembering Ellie.

We attended the service and our hearts broke as we watched the family and fiancé. I hope the mass brought them comfort. After the service ended, I wasn’t sure how to get the book and note to the mother, so we walked out to the church foyer where she was surrounded by loving friends, family, and congregation members. We stood there awkwardly for a few moments when she locked eyes with me. She pushed passed everyone and approached me. She began to cry and we hugged. She said, “You know what this is like, don’t you?” And I responded through my tears, “Yes, I do. And I am so sorry.” A few moments later we released one another, and she turned back toward the crowd of people waiting to pay their respects. We gave the book and letter to her husband and quickly left, me in tears and my husband comforting me as always.

Since then I have been beating myself up. I should have said more to her. Having lost a child, I should have some magical words to comfort her; to take the pain away even if for a moment. I should be able to say something to soothe her and to help her make sense of what has happened. But I didn’t. I couldn’t. But then I realized that I didn’t need to. The moment we shared as we both cried, one bereaved mother to another, didn’t require words. Our hearts spoke to one another and our souls recognized a kindred spirit. Sometimes the best thing one can do for a bereaved mother in those early days is to just give her quiet understanding and silent love.

Time?

One statement that always perplexes me during the grieving process involves the idea that there is a set amount of time, as in “It’s time to move on.” To me, this statement implies that a parent can be over, or worse, forget, their child’s existence. How is that possible? I am not advocating for remaining in that dark place that we find ourselves in after the death of our child for a lengthy amount of time. I agree it is unhealthy to participate in risky behaviors such as drugs, drinking, or promiscuity as a method of working through grief. I certainly don’t think giving up in any form (at the least becoming a hermit and at worse ending your own life) is a viable option. And I do think it can be unhealthy to focus so much on the dead that we forget the living…or to do some living ourselves. Participating in charity events, anniversaries, birthdays, support groups, ect., can be very cathartic and a good way to channel those overpowering feelings of grief, guilt, anger, and pain. But what is the appropriate amount of time to grieve before “moving on?” The answer is simple to a bereaved parent but for some reason can be a mystery to those who have never lost a child. There is no set amount of time (or right or wrong way) to grieve. And there is no possible way to “move on” from what has happened.

I guess to “move on”, we’d have to be the same person we were before the unimaginable happened. But we all know that isn’t remotely possible. My life is forever defined by the trauma of loosing Ellie. No, that doesn’t mean I cannot go on to have a happy life, but it will never really be complete. There will always be a piece of my heart/soul/being that is missing. I will continue to miss my sweet daughter and wonder what sort of woman she would have been. And I will continue to honor and memorialize her in any way possible.

Instead of “moving on” I think I will “proceed with caution”. It is time for me to do so. But it will probably involve several detours and pit stops along the way. And that's just fine.

Dream a Little Dream

"Throughout history, people have sought meaning in dreams or divination through dreams. Dreams have also been described physiologically as a response to neural processes during sleep; psychologically as reflections of the subconscious; and spiritually as messages from god, the deceased, predictions of the future, or from the Soul." Wikipedia

Not that Wikipedia is my favorite source of information because the articles are not always backed up by a credible source. But I liked, "The cultural meaning of dreams" section of the DREAM article because I've been thinking a lot lately about dreams and what they mean to me and to other people. I have had recurrent dreams since I was young. It was a white werewolf trying to get me then, but now it is an alligator blocking me from getting to something or someone. And we are talking WEIRD alligators. Like the Lake Placid alligator or Ammit, the crocodile, lion, hippo creature that would sit by Anubis as he determined the fate of ancient Egyptians as depicted in the Book of the Dead.) I have also had horrific dreams of my three year old son dying...almost always drowning. There are people around, but they are seemingly inanimate, just staring as I scream for help.

I know some people are really in to dream interpretations and I have no real issues with it. But I'm a black and white thinker, so I tend to take things at face value. I've been disturbed by dreams for a day or so. I've had some pretty, eh hem, great dreams too! I almost always dream to where I remember them the next morning, even if only for a few minutes. But I'm posting this morning not to talk about the dreams I have had.

I have only confessed this to my husband, and only recently...I have never dreamt of Eleanor. It has been almost 18 months since she left us. As if there is anything else I could feel guilty or sad about when I think of her, but now my subconscious or soul or whatever, won't let me dream of her. I haven't even had a nightmare of those traumatic last hours of watching doctors trying to save her twice and then holding her as she died followed by washing her beautiful, battered body. I see, smell and hear it when I am awake, but never while sleeping. I have fallen asleep countless times crying and thinking of her, but still, no dreams.

I read somewhere once that dreams and catastrophizing (daydreams of bad things happening) are the brains way of preparing us in case something does happen, like a car wreck, bank robbery or abduction. We create that path in our brain and can subconsciously tap back into it should we ever need to. If that's true, maybe my brain is telling me that I don't need to prepare for the tragedy of losing a child. I have already experienced it. It is already burnt into my brain. But I still hold out hope...because hope is all I have left now...that one day I will be able to dream of my sweet Eleanor. 

Bittersweet

We found out two weeks ago, at 19wks pregnant, that the baby has a healthy heart and no signs of hydrops! That was confirmed by a Pediatric Cardiologist the following week. I cried tears of joy and my husband and I both gave a HUGE sigh of relief. Another milestone has come and gone and we are still progressing along. During those appointments, we also learned that we will be expecting our second daughter. Her name will be Adelaide.  

I had mixed emotions to this as I knew it would be difficult no matter what the gender was…although that was the least important thing to me during those appointments. But once it sunk in that we had a healthy baby, the realization that I would finally have my living daughter both excited and terrified me. All the fears I had with Ellie came rushing back, which made me miss her even more. And I am terrified people will forget her with the new baby coming, especially since that baby is a girl. But we ARE so very excited.

My husband and I went straight to Target and bought a few toys and an outfit as soon as our appointment was over. We hadn’t allowed ourselves to get too attached until this point out of fear. But these appointments allowed us to imagine bringing Adelaide home in October.  As we excitedly talked about what was to come, it hit me that we already HAD this conversation a year and a half ago: What would it be like to have a girl? Would Sebastian be a good big brother? How would life change with two children? Remember what it was like with an infant? We had the furniture. We had all the toys and clothes. We were almost ready for Ellie at 30 weeks, just missing a few minor things. But now, now we would be going through the exact same motions as before. How strange to talk about bringing a new baby home, totalling two kids, when you have had three (and two butterfly babies lost by miscarriage)?

And I can't help but think about how Ellie’s 20 week scan was good too. The specialists have both said they would’ve caught her condition by then and it really depends on who is looking and what type of equipment is used. They said at this point they can see 70-90% of all major defects, with the disclaimer that something could be missed. I can’t help but fear the outcome will be the same for this daughter although I desperately hope it isn’t.

People keep asking me if I feel “better” now that we know the heart is okay. Will I “enjoy” this pregnancy more. The answer is complicated. I will never, ever be “better”. My daughter died, in my arms, and nothing will erase that. I have met amazing women who have suffered the loss of a child and now know there are many other complications that can occur. I am a little more at peace about Ellie after talking with the Cardiologist about her defect. I am allowing myself to talk more to Adelaide and do feel more connected. My husband has confessed he deseperately hoped for a girl and has every intention of spoiling her rotten in lots of pink, girlie things! If anything, these appointments and discussions with specialists have allowed me to begin forgiving myself for things I feel guilty about. I am beyond hopeful. But I still have so much fear. The unimaginable has happened and my eyes are wide open now. Although October will hopefully bring a healthy baby girl, my grieving journey will continue for a long time. Eleanor will never be replaced.  

What's in a number?

My son will be turning three next week and is a pure joy. Of course we battle over what shoes to wear, the amount of TV to be watched, and what’s for dinner. But he also says, “I love you”, snuggles, tells awesome stories and makes the most brilliant observations, “My head is a circle!” Overall he is a wonderful, smart, compassionate little boy and I am truly blessed to have him. I cannot wait for him to have a living sibling to play with.  It's not that we haven't tried to give that to him.

When you are pregnant, people seem to lose a filter and say whatever pops into their minds and can occasionally lose control over their bodies and touch your growing tummy at a moment’s notice. This being my third (fourth counting the early miscarriage in November) pregnancy, I’ve heard and experienced this a lot. “No, there aren’t triplets in there.” “Yes, I am waddling as I walk.” “Yes, I understand things are about to change in our lives and become a little more hectic in the beginning.” I have been felt up (i.e. violated) by strangers and acquaintances. I even watched recently as a man pretended to make a large arc while walking around the apparent hugeness of me. But I usually shake it off, even if my feelings are hurt. This time is different though. I'm not sure people know how to talk to a pregnant women who has had a child died.

I was taking my son to daycare this morning and he just HAD to jump down every step instead of walking. A line of parents were forming to leave and I apologetically looked at them and said, “Sorry! You know everything is a game!” A mother looked at me, one who knows that Ellie died last year, and said, “Wait until you have two.” I smiled politely and nodded my head. But I cried and screamed inside, “I HAVE TWO CHIDLREN. ONE IS NOT HERE, BUT SHE EXISTED. SHE COUNTS! DON’T FORGET ABOUT HER!”

If you have suffered the loss of a child and are pregnant, or if you have a surviving/living child at home and lost another child, you understand the conundrum I am in. For 12 months, I had no hesitation when answering how many children I had: Two. Period. If people asked, I gave out more information. I didn’t try to guilt people, but I do have two children and I’m proud of that. (Please note that if a woman loses her first and/or only child, she is STILL a mother. I don’t even feel that deserves an explanation as it is common sense.) But now that I am pregnant, I find it hard to explain. People are usually smiling and excited when they talk to me as most are when a new life is about to enter the world. They will ask if this is my first, second, etc. pregnancy and I always say third (I feel so guilty for leaving out the miscarriage…I think I will start including it from now on). Then the question of what do we have and how old follows with "What do you hope this one is". I want to answer the last question with, "Alive." Whatever I do, which is try to stay true to myself and babies, I have to watch as they uncomfortably shift or look away, desperate to get out of the situation. It's a repeat of the months after Ellie died.

And there is more. Those that know I have a son will say, “I bet you hope it’s a girl” or “I hope it’s a girl.” It is bittersweet. We find out next Tuesday if the baby is healthy and the gender. If it is a boy, I will be sad because I will never have my living daughter. If it is a girl, I will be sad that is wasn’t Ellie and scared that in some way I am replacing her. Hearing people talk about hoping and wishing for a girl hurts more than them thinking it is a boy for some reason. I want my Eleanor. I know it may seem irrational to some. I know you may think I need to just be happy and stop worrying. Maybe you are right. But until you’ve been in my shoes, I’d ask you to refrain from sharing those thoughts. I try to avoid talking to people about how much pain I am in. How I fear getting close to this baby in case it will die too. How I am worried others will forget about my Eleanor or two lost angels, Pizza and Baby K, when this baby is born. I really try to be optimistic, but the unimaginable has happened…multiple times. I can’t just think happy-puppy-dog-and-sunshine thoughts and magically be okay. Of course I want this baby. I know that stress can affect your body and pregnancy. I wanted ALL my babies. But I am terrified. You tell me how to stay calm after all we have experienced! I'm willing to try it!!

We have decided to wait a little while to tell family and friends the gender of the baby. I need to process it. I need to celebrate with my husband and grieve for the lost babies in our lives. Whether this is baby #5 or baby #1, it is wanted and loved. I so hope the baby is healthy. I would appreciate your good thoughts, fingers crossed or prayers to whatever you pray to that it is.

Pregnancy isn't a "Cure"

It is rare for me to post more than once a week let alone twice in one day, but I recently read something that floored me. For those of you that don't know, I'm about to drop a bomb on you (being just a tad...okay A LOT...bit sarcastic right now).

Pregnancy. Is. Not. A. Cure. It does not magically erase your memory. And it certainly doesn't fill that missing piece of your heart left when your child died. Are you thankful for surviving children? Hell yes! Are you beyond hopeful for a healthy pregnancy after loss? No question! But please, please, never under any circumstances think that a woman who has had a baby die is "better" or over her grief because she is expecting. There is no time frame for "dealing" with that grief. You never get over it. I am 16 months out and hurt everyday although I may not show it.

Being pregnant is bittersweet. I cannot wait to hold this baby and often wish I could fast forward to it being safely in my arms. I am terrified. But this baby is wanted. This baby is wanted to be healthy. This baby is wanted to be alive.

And while we are on it, "thinking positive thoughts," doesn't save lives. Don't tell me to "be positive" for the baby growing inside me. I had NOTHING but good intentions and thoughts about my daughter and it didn't save her. While I held Eleanor in my arms as she died, I thought positive, healing thoughts and she still didn't make it. Some may think there is a reason for everything, but I am still trying to figure that out. So, please spare me your explanation of why I had to watch my daughter die. You insult me and dishonor my daughter by trying to explain something so horrific away. I may not share your belief system...please keep that in mind. I can respect you as long as you respect me.

Calming down now...

Yes, new hope has been brought into our lives with this pregnancy. Yes, we are thankful for our son and all of our babies no matter how short their time was. Yes, life goes on. YAnd yes, the time to walk on egg shells has passed. But, if you have not experienced the death of a child, please think before you speak, and don't assume anything about how me or my family is processing what has happened. You can have no idea what we are going through...and each one of us is different. Please try to be compassionate and continue to be patient with us. Thank you to our loving friends and families who have and never would say the above to us. Sorry for the outburst. 

A Mother's Day in Mourning

First, if you follow my blog I have to report that my husband's result for Cystic Fibrosis came back negative! We are beyond excited. This is one less thing I will be worrying about during my pregnancy. Now...on to the post.

Is it appropriate to wear all black on Mother's Day?

Mother's Day. Oy! Last year I mourned Eleanor. My son is my world and I am crazy about him, and of course I am thankful for him. I know I am a good mother. And a lot of my guilt comes from not being outwardly happier about his health and mere existence, which I most certainly am. But I thought it was going to be different; my two children playing. Thankfully I travelled for work that Sunday and was preoccupied. My husband made breakfast and had my son color a card. It was very sweet. I cried of course; partially out of joy and partially out of grief. I may be travelling again this year for work and actually think it will be better than staying home. I just can bare to think about it.

I also thought this year would be different because I expected to be pregnant...which I am. But I just add two more children to the list of those to mourn. I am beyond happy to be expecting and am 15.2 weeks today. I am terrified, yet hopeful. I haven't connected to the baby yet out of fear since we lost its twin at 9 weeks. (I'm hoping I will soon, but I am just so scared that something will happen or the baby will be sick. The 31st of May CANNOT come soon enough! That is when our ultrasound with the Maternal Fetal Medicine Specialist occurs.) I don't know if holidays, especially family-centered ones, will ever be the same for me.

This doesn't seem to be getting any less painful. Tears stream down my face as I type this. Sorry this post is incoherent. One of those days. I just needed to get something, anything out. I have been crying every day for a week now. Hormones? Fear? Grief? Other mother's who have lost know this feeling well; that irrational day when nothing makes sense and everything reminds you of what has been lost. You ramble on and on until exhaustion sets in and you can no longer process anything. It's only 10 am. It's going to be a loooong day.

Bliss

I wish I was still blissfully ignorant to this pain. I wish I never had to meet another person who experienced(s) the loss of an infant (or child). I know that is naive and unnatural. Death is a part of life. I am not scared to die...when it is my time. Watching a friend experience the death of a parent or grandparent is hard. I empathize with them and wish they weren't in pain. I'm sad for the loss of a person who impacted the lives of others positively. And it doesn't make it easier that the person was older. But it is supposed to be natural to lose them before your children. Nature has failed me.

"That would never happen to me." I thought that. It's a cliche, but I honestly did. When a friend unexpectedly and completely unfairly lost her almost two year old, I thought it. I was 39 weeks pregnant with my son when we attended the funeral. The pain was indescribable. The mood in the room was a mixture of shock, grief and love. I hurt for my friend and struggled to find the right words or actions to comfort her. I left the service in tears, hugging my belly...thankful it wasn't me. I'm sure friends and family felt the same way January 15 when we notified them that Ellie had died the prior evening. I don't blame them. I hope they hugged their children a little harder that day and continue to look at them with utter amazement and humbleness. And that is ok. I really am glad Ellie could touch the lives of others, although I would rather her be here with me now.

I want to go back to a time when worry about gaining 30 pounds during pregnancy, maternity leave or saving for college were my major concerns. Of course I worried about my son's health and still do. All new parents obsess over bodily fluids and sleep (theirs AND the baby's)! But I couldn't even fathom him dying. It was an impossible outcome; something that happened to other people.

I don't want to be a cautionary tale. "It can happen to anyone. Look at her." I have given life to five babies and only have one, beautiful three year old and a 13 week baby bump to show for it. (Don’t get me wrong, I am beyond thankful for every second I have/had with each one.) Maybe I am a cautionary tale...not to others, but myself. Maybe I wanted too much. Maybe loosing Ellie and Baby K in November were Nature's way of saying, "You lucked out with your son. He is your statistic. Your miracle. You don't get anymore."

We just found out that I am a carrier of the Cystic Fibrosis gene. It is the most common fatal recessive genetic disorder in Caucasians. In people of European descent, 1:30 are carriers (higher in Northern Europe). Approximately 30,000 people are living with CF, the median age of life being the mid-30s. It is not curable, but advancements have been made and many people live good lives with CF. My husband was recently tested too and the results will be in late next week. If he is a carrier (because both parents must be carriers), our baby will have a 25% chance of having CF. Statistics have ruled my life the last 15 months. Ellie had a 20% chance of survival. Of all heart defects, her type represents 1%. Of that 1%, 1% is classified as “isolated cardiac anomalies” which means no known chromosomal connection. Approximately 20% of all pregnancies end in miscarriage. Approximately 25% of all multiple pregnancies end in the Vanishing Twin Syndrome. The chance of having a miscarriage after 12 weeks drops to 5%. We have a 6% chance of having another baby with a heart defect. We have a 1:1,000 chance of having a child with Down’s Syndrome and a 1:10,000 chance of having a child with Trisomy 18. What is the statistical probability that my son will die too? And on and on and on. With this pregnancy, I have been so focused on having a child with another heart defect and making it past the 12 week mark that I was completely and blissfully ignorant to anything else happening.

Nature is still trying to tell me to wake up. I think I have finally stopped hitting the snooze button.  

The Tale of Miss Emily and Mr. Daleshire

I feel like my life is slowly morphing into a Victorian novel. BBC worthy even!

The tale starts with a young women on the outskirts of everything. Her name would undoubtedly be something like Miss Emily. Miss Emily has different ideologies, political views, philosophies, interests, etc. as the other young women in her social circle. But she plays the part of the good girl and does as her parents and society expects: good grades in high school, college, and graduate school followed by getting a job. Along the way she meets a handsome older man who is somewhat of an outsider himself. Not the typical Alpha-male type but an artistic, educated, funny man, secure in his masculinity and confident in his abilities. We will call him Mr. Daleshire. Mr. Daleshire and Miss Emily court within the traditions of their day and fall deeply in love. Shortly after professing their unyielding love for one another, Miss Emily travels 2,000 miles away to volunteer for one year. But their love stays true over the days and miles and Mr. Daleshire proposes to Miss Emily while she is away. They marry a year later. Bliss.

The next few years are full of laughter, love, and adventure for the Daleshires. They travel the world. Buy a house. Get a dog! All the wonderful things young couples do when they are in love. However, despite this deep love and respect for one another, they feel something is missing. A child. So, they excitedly begin trying to have a baby after two years of blissful marriage. Months upon months pass; their spirits being broken along the way. But then, fifteen months later, they find themselves expecting a baby! Excitement and fear! The pregnancy and baby boy are perfect. Life couldn't get any better.

Mr. Daleshire, being the hardworking, honest, and intelligent man that he is, begins to look for more career opportunities to supplement his growing family. So, the Daleshires pack up, leaving dear friends and family to travel to a new place. This place isn't ideal for either person. Upon arriving, Miss Emily is in tears and vows to leave within three years. But Miss Emily also finds employment in the new place, they purchase a house and begin to talk about expanding their family again. Discouraged by the length of time it previously took to get pregnant, they are shocked after just four months to learn they are expecting their second child. The pregnancy progresses wonderfully; a girl! The Daleshires cannot wait to complete their family. Their visions of two children playing in the yard is coming to fruition.

Then disaster hits at 30 weeks pregnant. The baby girl is very sick with an imperfect heart. Chaos ensues after the news is broken. Hospitalization. Doctors. Prognosis. C-section. Diagnosis. NICU. Death. Within 10 days of finding out, the beautiful baby girl has passed away. The Daleshire's world is turned upside down and their hearts are broken. Relationships with family members deteriorate or all together end. Friendships are made and lost. They fight harder and love deeper than ever before and somehow survive.

As time passes, they slowly begin to regain strength. Although they are in love with their son, they grieve for their daughter and yearn for another chance. Ten months after the death of their daughter, they become pregnant again. Joy. Pure joy for the first time in such a long time and they tell all their friends and family. Then it is over too. Just six short days and Miss Emily miscarries. Pain. Pain again.

Making it through the holidays and one year anniversary of the birth and death of their daughter, the Daleshires lean on one another and their friends and family. With reflection and memory they look back over the past twelve months of heartache and decide, just one more time, to try for another baby. Visions of two children playing still dance in their heads and they try to make it a reality again. Miss Emily doesn't have problems getting pregnant like the previous two times. Is this a sign that it is meant to be? She is cautious this time--guarded--as is Mr. Daleshire. They choose not to share their news with family and friends and await their first appointment with a doctor. To their surprise, they are expecting twins! Shock. Shock and hope. They shout it from the rooftop!

One month goes by. Miss Emily is nine weeks pregnant and is sick with nausea...but thrilled about it. Mr. Daleshire is supportive and caring as always. Their young son is excited to welcome his siblings. The news of twins has brought new life and joy to grandparents who have had to repeatedly watch their grandchildren die and children suffer. Coworkers and friends share in the joy. Excited to see the babies, the couple goes back to the doctor. Tragedy, yet again. One of the baby's hearts has stopped beating. More pain. How can this keep happening?

The Daleshires have lost one daughter at six days old, one baby at 4.5 weeks pregnant, and one twin at 9 weeks pregnant. They now hold their breath for the surviving twin. What will the next doctor's appointment show? How will this story end?

Special Days: Ellie's Original Due Date

A little over a year has passed since my daughter died. There are reminders everywhere and plenty of dates with special meanings. Today was the estimated due date of my Ellie. She should be a happy one year old.

This time last year, my husband and I headed to the coast while our son stayed with his grandmother. We were looking for the perfect place to spread her ashes. Here is our thought process in case you are wondering: We believe that when someone dies, the body remains; like a shell. Although we do not ascribe to any religion, we knew our daughter wasn't 'in there' once she died. I will let theologians and philosophers debate on where she 'is'. But I know she is in my heart, and that is enough. So there was no question that we would have our daughter cremated. I took her to every room with me from the day we came home on January 15 up until this day last year. I couldn't stand the thought of her remains being stuck in a bag inside an urn forever. I wanted them to go back to where we all begin: nature. What better place than water? It is everywhere, in everything and is always connected. Rain in its many forms, streams, rivers, etc. travel around the world again and again. No matter where we spread Ellie's ashes, whenever it rained or we saw running water, we knew she would be there. The ocean seemed like the perfect place to start.

We found the perfect spot on March 15 and returned the next day. We picked up six pink Gerber daisies, to represent her six days of life,  to throw in the ocean with her ashes. My husband and I sat on the beach for a long time that morning, holding one another and crying. But we were both oddly at peace with what was about to happen. We had decided we wouldn't save any of the ashes; she would be complete in the water. When the time came, my husband bravely led me to the water and asked me to open my hands. I trembled and closed my eyes. When I felt the ashes I began to wail loudly and almost fell to my knees. We looked at one another and told whoever was listening, "We love you, Eleanor." And then we lowered our hands and watched as her ashes were gently carried away. My husband looked down and saw a few stunningly white shells in the clear blue water and picked them up. He said we were giving the ocean our daughter (our life) in the form of ashes and in turn, the ocean was giving her life to us in the form of shells. What a beautiful thought. We collected them and placed them in the now empty urn. We walked back to the beach and picked up the six pink daisies and threw them in. Amazingly, they stayed together and we walked along the beach with them until they were out of site. We then sat on the beach a while longer, exhausted and drained, and promised to return on Ellie's first birthday.

We visited the same spot and threw six pink Gerber daisies into the water on her first birthday, January 8, 2011, with a few loving family members. We also collected another shell to add to her urn, which is proudly displayed in our living room. It was our son's first visit to the ocean and as a two and half year old, his excitement helped ease the mood. He still doesn't understand what has happened, but he knows his sister's name. And he knows we were throwing flowers in the water for, "Ellie to play with."

Some people have expressed concern over memorializing too many days when thinking about Ellie. They said it could prolong my grief and hinder the healing process. Maybe they are right, but I'm not going to forget these special days. I have a much different outlook this March 16, than I did last year. I have grieved like I never thought possible. I have loved deeper than before. I have grown and changed in unimaginable ways. But I will remember these days forever. And I will forever remember my daughter. Ellie remains the same to me; my sweet, beautiful daughter happily playing in the water with her pink daisies...awaiting our next visit. 

A Bereaved Mother in History

One thing I have been avoiding since Ellie died is cemeteries (even though she was cremated). I have been to a lot and have visited them as part of my job. I know there are children in them, and babies—in a much higher frequency than today. I couldn't avoid it a few months ago and broke down at the site of a child's grave. Well, I was reading a report at work today and some small, historic, family cemeteries were found. This is very typical of the time period, but here is what got me.

- Ms. Elizabeth Barnard had her first child in 1873 at the age of 17. He died at 20 years old (before she died).
- Next child, she was 20; a girl. The girl died at 26 along with her only child, a 2 year old (before Elizabeth died).
- Next child, she was 22; a boy that died at 7.
- Next child, she was 28; a boy that died at 4.
- Next child, she was 32, a boy that died at 8.
- Her husband died 14 years before her. So she suffered the loss of three children alone.
- She was just 52 when she died. She lost all five children, at least one grandchild and a husband before her death.

Her third child's grave site is the largest monument in the cemetery and has his age down to the day. Typically the largest is reserved for the patriarch, but not this time. It makes me think of how poor Ms. Elizabeth handled her grief in the 1800s. I doubt there was much support in the way there is now. As annoying as the self-help revolution has been, I think it has allowed people to publicly grieve…or at least people are less likely to be attacked for it now.

I've read historical accounts of women loosing children and they are in as much pain as I am today. I thought they would be ‘used’ to it since it was such an unfortunate, frequent occurrence. When Eleanor died, someone said, “Imagine how women felt a hundred years ago. They probably lost many children, if not their own lives during childbirth!” But I don’t think it was easier because it was more common then. In fact, I think it was probably harder on the mother. Everyone probably knew someone who had lost an infant or young child. Society would mourn, but would quickly move on because infant and child death happened…a lot. Stiff upper lip, right? But I cannot believe the bereaved mother would move on so quickly. Sure, people tended to keep their emotions more private then. But in my research of women’s writings in historical times, they suffered the same pain, grief, anger, guilt, and sadness that we bereaved mothers do today. They just suffered in silence.

Although it may have been taboo to continue to talk about a child that has passed back then (as it still is today in some circles), I think I will light a candle for Ms. Elizabeth Barnard and her children and grandchild tonight. I will remember them.

Thanks for the Reminder

As an expectant mom, most women will sign up for free coupons and samples from any and every reputable website. I was no different with either child. I logged into BabyCenter to read Eleanor's weekly progress and loved telling my husband what size she was (poppy seed, blueberry, orange, banana, etc). I signed up on websites for diapers, clothing, toys...you name it. So, when Eleanor died, my first thought was not to unsubscribe to these emails. (And we all know how ridiculously difficult it is to actually unsubscribe!) I didn't even check my email for months.

The other day I got an email with the subject line, "Your Eleven Month Old." Remember that she was due March 16, 2010, but born early on Janaury 8, 2010. I've been receiving them monthly but either immediately deleted or ignored them. But for some reason I paused this time. I couldn't bring myself to open the email and scroll to the bottom. I would surely see all the wonderful milestones she would be meeting, and reading about teething, walking, eating, etc. as I looked for that obscure 'unsubscribe' button hidden in a massive paragraph someplace. What did I do? I didn't open the email to read it. I hit delete. In two weeks I will undoubtedly receive another email, subject line, "Your One Year Old!"

I don't know why I can't just open the email, quickly scroll down, and be done with it all. It's not like I don't know that I should have an eleven month old daughter at home, playing with her brother. It's not like each anniversary doesn't affect me: the 8th (birth), 14th (death), 16th (March original due date), and 23rd (memorial service) of every month. And it's certainly not like a day goes by where I don't think of her and what could...and should...have been. I don't need a reminder at all.

But I don't think I will delete my monthly emails. As the world continues on and the pain lessens, I think it will be nice to follow her as she grows in cyberspace. Maybe one day I will look forward to seeing, "Your Ten Year Old" as I smile and cry, thinking about who she may have been. I still won't read the email, but I will take that moment in my busy day to stop and bask in the loving memory of my daughter.   

A Letter to Eleanor

I've mentioned being in grief therapy after the death of Eleanor. It has helped, but the healing is still a very long, hard, slow process. After my miscarriage in November, my therapist suggested I write a letter. It could be to "Baby K" or Eleanor. But she talked about how cathartic it could be to get all these feelings organized and out. The below letter is the result. I read it to Ellie on her first birthday, January 8, 2011, at the spot where we spread her ashes.

If you are a parent who has lost a child, I HIGHLY encourage you to do this. I plan to write one every year and read it to her aloud each January 8th...followed by one heck of a birthday party!


Eleanor,

I have waited almost a year to write to you, although I speak to you often in my heart and in my head. Seeing your name on this page—writing to you—already has me in tears. I miss you so much.

When I was a girl, especially during my teenage years, my mother would say, “You’ll never understand until you have your own children” and “You’ll know when you have your own daughter.”  These statements were usually in response to some hormone driven comment on my part and I probably rolled my eyes in the standard teenage response. I didn’t truly understand what she meant until your brother was two weeks old. Don’t get me wrong, I loved him and wanted to protect him instantaneously, that is primal and instinctual, but I don’t think I was IN love with him at first. I had NO idea what I was doing! But after two weeks of colicky cries and sleep deprivation something clicked. While listening to a song from a Putumayo Kids Presents: Dreamland - World Lullabies, he suddenly stopped crying when, “Arriba del Cielo” played (track 5, a cute song about tamales in the sky). I looked at him and cried the tears of joy for the first time in his life and only the second time in MY life (the first being when your father told me he loved me). After that moment, all the fears and doubts and panic went out the window. For one moment I felt I knew what my purpose was, something I struggled with for as long as I can remember. I felt feminine and peaceful and wise. My purpose was the most basic and natural one there is: to be a loving mother.  

I want to be honest with you. I was a nervous wreck when we found out your gender. High school was hell for me. I wasn’t popular or thin or pretty. I was smart enough, but not brilliant. Boys weren’t interested in me. I always felt on the outside of the crowd. I feared for you, especially in today’s climate of cyber bullying and the romanticizing of teenage sex and love. I wanted to protect you and to tell you that, “it will get better”.  But beyond that feeling of protection, I wanted to experience life with you; through your eyes. I wanted to watch you take your first steps. I wanted to hear you laugh and call me, “mommy.” I wanted to watch you play with your big brother. I wanted to tearfully take you to your first day of school. I wanted to help you pick out a prom dress (a tasteful, long, all-the-way-up-to-your-ears black dress circa 1880, but a prom dress none the less). I wanted to take you to college and watch you grow and learn. I wanted to see you dance and shine at your wedding. I wanted to hold your baby in my arms and sing the same lullaby I sang to you as a child. I couldn’t’ wait to tell you how proud I was of the amazing woman, mother, and wife you were sure to be. I wanted so much for you. I wanted you.

I’m sorry, Ellie. I’m so sorry. I feel like I failed you. I’m sure if given the chance I would have made plenty of mistakes, ones you would have hopefully forgiven. But I didn’t even get the chance to ask for your forgiveness for any of it. The guilt I have for not enjoying my pregnancy with you as well as the guilt for not spending every second with you when you were here consumes me.  You aren’t here to forgive me and I can’t forgive myself. 

I hope you know how much I love you. I hope you felt it when I touched you or when I sang to you. The same lullaby I heard when I fell in love with your brother is the same one I still use to calm him or put him to sleep. It is the same song I sang to you each time I saw you. I loved you from the instant I saw that positive pregnancy test. But I fell in love with you when I held you for the first and last time while singing that lullaby in the NICU. All of the babies crying and nurses talking and machines beeping faded and it was just me and you. I told you how proud I was of you and how much I loved you. I told you that it was okay for you to go and that I didn’t want you to be in pain anymore. I have to believe you heard me…that you knew what I was saying. Did you?

I have been walking around in a fog since you left. I think about you constantly and wish we had more time together. You are with me all the time and not a day goes by where I don’t think about you and wish the outcome could have been different. I would give anything for it to have been. I would have taken your place, given you my beating heart if I could have saved you. The universe is cruel and unfair and I don’t understand any of it. I miss you terribly, Ellie. I had such dreams for you and now all I have are dreams of you. The pain is indescribable, but I need it to feel closer to you. It is the only thing that makes sense.

I wish I had something poetic and deep to say to you to adequately express how much I love you. I don’t think childless women or men will ever truly understand the bond a mother has with her child. You are forever a part of me. When you left, you took that part with you. Maybe that is what motherhood is really about; nurturing, loving, supporting, giving a part of yourself to your child so they can continue on their journey. If it is, you must know that you left a piece of you with me too and it gives me hope and purpose again. I will always love you, Ellie. The moment I don’t say or think it daily, will be the moment we are together again…wherever that may be.

Yours Forever,
Mommy