Closing My Eyes

For almost five years, I have not had a dream about my first daughter. It is tormenting enough to never see her again, but even my subconscious seemed to reveal in my pain by blocking any inclination of my sweet Eleanor. That is until the day after Christmas.

 

I am not religious. I wouldn't even say I am spiritual. I just believe in the good of people and in trying to do the right thing, whatever that is. The finality of death has always been hard for me since I desperately want to believe I will see my loved ones again. But I do not believe I will. In the case of Ellie, this produces much pain and sorrow. So I yearned to dream of her...not the horrible dreams I had after she died. They were of her brother dying while I was always a second away from saving him. But dreams of a sweet, happy, and healthy baby girl, growing through the years as if she were still with us. I would beg myself to dream of her at night, but instead the grief would take over and I would inevitably cry myself to sleep quietly, as not to wake my husband. But then it happened. The dream.

When I was pregnant with my son, Ellie's older brother, I would go to a water aerobics class at a university pool several times a week. You know the scene: tile floors, humidity, the smell of chlorine and mold in the air. The dream starts at that pool. I am walking into the area where I swam and later took my son to infant classes. There are two or three instructors and a dozen little babies bobbing in the water. They aren't in distress, but instead seem to be actively swimming despite looking just a few months old! I feel like I shouldn't be there for some reason and am aware that I shouldn't be viewing this sight. As I slowly walk toward the babies, an instructor notices me and quickly produces a large yellow sheet to shield me from seeing anything. I stop, saddened I can no longer see, although I don't really understand what I am looking at. As the disappointment starts to settle in, a little fair skinned girl with blue eyes and brown curly hair (now four or five years of age) peaks around the yellow sheet and smiles at me. I know. I know in that instant that the little girl is my Ellie. I eagerly step toward her, but am suddenly taken to another place. I am still near the pool, but am now standing among several twenty-somethings in modern clothing as they wait for something. The next class? A bus? I am not sure. But I am talking frantically to them. I am asking what their names are, but none seem to know the answer. All they seem to know is that they died as infants. I zero in on two girls based on hair and eye color, and realize one is my daughter. I again ask their names, and they again reply they do not know. But one girl says she knows her birthdate. I stare at her and she says it. January 8, 2010. She is beautiful. Tall, fair shinned, dark hair, stunning blue eyes. She is alert and smart and has compassion in her eyes. She is my daughter as a woman. I call her Ellie as tears swell up in my eyes and begin toward her when my alarm goes off. I fumbled to hit the snooze button and tightly closed my eyes in hopes of seeing Ellie's face again and telling her how much I miss and love her. I lay there begging my mind to give me one more glimpse of her, to hear her talk again, to touch her. But it is in vain. The dream is gone, and so is Ellie.

 

Do I think my dream was my daughter in another realm trying to reach out to me? As wonderful as that would be, no, I don't. I think after five years of painful grief, my mind was finally allowing me to see her. Maybe it was to help me get through the holidays and her upcoming fifth birth and death dates. Maybe it was to help me process her death and the finality of it all. Maybe being around children at the holidays and thoughts of her playing in the midst of the cousin chaos made me yearn for her presence. I don't know. Finally dreaming of her was bittersweet. The image of that beautiful young woman stayed with me all day after the dream. But now that image is fading. She's gone again and the pain returns more deeply. She is still gone forever and all I have to look forward to is the hope that I will again see her in my dreams. 

No words…

My daughter died. I am a surviving parent. There is no score card for “who has it worse off” when it comes to losing a child. But I both sympathize and empathize with the families from Newtown, CT.

Like the rest of the country, and most of the world, I spent Friday in disbelief, followed by disgust, and remain in great sorrow after the Sandy Hook Elementary School shooting. Saturday morning I awoke thinking about how those families were coping…coping. As if that is possible after the loss of a child, let alone a loss as horrific as what transpired. I woke up several times the night Ellie died, hysterical. I am not sure how much sleep I got, but it was either medically or alcohol induced. That morning I was on autopilot. In between the tears and shock, I went through the motions of going to the hospital to have her body released, calling funeral homes, cleaning our room at the Ronald McDonald House, and waiting. In between sobbing and staring in silence, I would look around. Partly because I just couldn’t believe what had happened. Was I dreaming? Where was I? I remember turning to my husband at one point as we waited for Ellie to be cremated (because neither of us wanted to drive the hour home without her) and asking him, “How can people go on with their lives when ours is crashing?” We drove through a busy shopping area in the state capital and I watched as cars passed; the drivers laughing or having conversations. Did they know? Did they know I was barely functioning? How I longed to be as oblivious.

The parents and families of those killed Friday don’t have the luxury of grieving out of the public eye. Whereas I could talk about it or not (after all, we rarely know what another person is going through or has experienced just by looking at them), these people are being bombarded by media outlets. Reporters are camping out. Even the crazies from the Westboro Baptist Church are showing up. Then there is his name. You know it. I sincerely feel for his family...what a burden. They have their own grief of loosing a son/brother/grandson/nephew and mother/ex-wife/daughter/sister in addition to the reality that their family member inflicted so much pain. But he is getting 10 times the coverage that the victims are getting. Try to figure out what made him tick, but it all boils down to a sick individual (either certifiably or just plain sick).

On top of the media and coverage of the shooter, these families are being thrown into the forefront of a political and religious storm. Not to say that some won’t get involved later…it helped me to find a cause or two to channel my grief. But gun rights activists, proponents for stricter gun laws, mental health advocates, and people who believe this needed, or was caused by, divine intervention are swarming upon the survivors. Some even think the President faked being upset for political show. I think I'll scream if another person says this could have been prevented if God was allowed in schools. It’s disgusting. On Facebook, I watched as some people I consider real friends didn’t even wait 24 hours before spewing hate, blame, defensiveness, and judgment.  Pray for the families. Think of them. Condemn the act. But don't you dare blame anything or anyone but that murderer.

These families have it hard enough. Can you imagine? If you regularly read my blog, then you are probably a bereaved parent, so you can imagine the pain these families are experiencing (I speak about the courageous teachers who gave their lives too).  What these families need is support…something I yearned for and what prompted me to start this blog. The media attention will hopefully help these families get the support they need through groups such as The Compassionate Friends.

I want to conclude by listing the names of those killed Friday. In my experience, the support, acceptance, and patience has faded, and did pretty soon after Ellie died. People move on and that is natural. But my heart, like the parents in Newton, will never heal. They will never be the same and will need compassion for some time. I will light a candle for the below individuals and hope you will join me. Let us not forget the victims and offer support and love to the surviving families.

Charlotte Bacon (2/22/06), 6 years old, female
Daniel Barden (9/25/05), 7 years old, male
Rachel Davino (7/17/83), Staff member, 29 years old, female
Olivia Engel (7/18/06), 6 years old, female
Josephine Gay (12/11/05), 7 years old, female
Ana M. Marquez-Greene (4/4/06), 6 years old, female
Dylan Hockley (3/8/06), 6 years old, male
Dawn Hochsprung (6/28/65), Principal, 47 years old, female
Madeleine F. Hsu (7/10/06), 6 years old, female
Catherine V. Hubbard (6/8/06), 6 years old, female
Chase Kowalski (10/31/05), 7 years old, male
Nancy Lanza, 52 years old, female (mother of shooter Adam Lanza)
Jesse Lewis (6/30/06), 6 years old, male
James Mattioli (03/22/06), 6 years old, male
Grace McDonnell (11/4/05), 7 years old, female
Anne Marie Murphy (7/25/60), Staff member, 52 years old, female
Emilie Parker (05/12/06), 6 years old, female
Jack Pinto (05/05/06), 6 years old, male
Noah Pozner (11/20/06), 6 years old, male
Caroline Previdi (9/07/06), 6 years old, female
Jessica Rekos (5/10/06), 6 years old, female
Avielle Richman (11/17/06) 6 years old, female
Lauren Rousseau (June 1982), Staff member, 30 years old, female
Mary Sherlach (2/11/56), Staff member, 56 years old, female
Victoria Soto (11/04/85), Staff member, 27 years old, female
Benjamin Wheeler (09/12/06), 6 years old, male
Allison N. Wyatt (07/03/06), 6 years old, female

Bah Humbug!

I just CANNOT get into the holidays this year. Halloween is our favorite holiday, much to the chagrin of our neighbors. We normally decorate the hell out of our house, pun intended, and have an adult costume party. Halloween came and went and we only managed to get a spider on the roof, string up a few orange lights, and set the little Halloween tree on the table. Disgraceful!

Thanksgiving is usually fueled by my husband's obsession with the perfect turkey recipe. It helps to sort of get me in the mood since I make all the sides and I am amused at his primitive need to play with meat. My 4.5 year old is old enough now to talk about what he is thankful for and to make a beautiful pipecleaner centerpiece. His excitement and sweet answers to what he is thankful for ("I'm thankful that you grew me, mommy." And "My mommy and daddy, the President, those scientists that make the big robots, the police and firemen that save you, Ironman and Captain America.")  melted my heart this year.

As with most families, Thanksgiving weekend is followed by dragging out the Christmas tree and decorating the house. Although we are not religious, we still celebrate Christmas. (I think of the tree as a way to honor my ancestry since Germans brought the tradition to this country!) I bought a few supplies to make ornaments with the kids. I could put their pictures in the little plastic balls and helped them stuff tinsel inside and put stickers on the outside. But I had only a small plastic butterfly to put in Ellie's. Her stocking hangs empty next to her siblings, never to be filled or opened. I know that I will watch the children open their gifts in their Christmas PJs and laugh at their excitement. And I know I will have to excuse myself for a few minutes to hide my tears for what will never be.

This is the third holiday season since Ellie's death and the first year we are traveling to see family. The fear that they will not mention her, or worse, make me feel awful for mentioning her or tearing up, makes my stomach hurt. While the grandparents get to see all their living children and grandchildren, I will be expected to be thankful for what I have (which of course I am) and to not "bring the mood down". So, like almost every other day in the year, I will have to stay quiet because conflict on top of grief is no winter wonderland.  

Should she stay, or should she go?

I have mentioned that my profession requires me to study the past. I have come across historic cemeteries with many children buried within. I have written about former Presidents that have lost children. And I have written about the sad history of Mother's Day.
 

I love to study the past; to learn from it. It is important for us to remember past events when working in the present because it helps provide context. Hopefully it allows both sides to take history into consideration, especially during conflict, so they can move into the future together. But does that past have to stay in the past?

Without getting into a huge political debate, when groups around the world have been historically subjugated and then receive "equality" or "freedom," is it beneficial to continually bring up past wrongs for generations? Should we all just accept that some atrocity happened and then move on? Part of me feels that would be practical. After all, we can't change the past...although I have spent many sleepless nights wishing I could. But part of me thinks it is important to remind people, because we all know how short public memory is. People need to know something bad has happened or that the wrong team was backed.

When it comes to my own tormented past, I can't seem to move on. How can I learn a lesson from what has happened? I always considered myself a decent person and have made compassion, service, giving, and stewardship the foundation of my life. So what was it that the universe wanted?

Everything does happen for a reason (for better or worse), but I can't accept a mythical or magical explanation. Before January 2010, I wasn't naive about death. The scientist in me knows that we are at the mercy of natural selection and randomness. The historian in me knows more mothers and babies survive childbirth now more than ever before. Ellie's heart defect was an anomaly and we were lucky to have six days with her due to medical science.

I've been thinking about "moving on" a lot lately after two conversations.

1. I spent a week in Oklahoma camping with a Tribal Nation. One evening while reflecting on our time there, I spoke with an elder. I asked him about their beliefs on death, and specifically infant death. He told me that historically the family washed and then painted the body in red and then burnt it. This was followed by four days of grieving...the entire village grieved. And then, they "moved on." He said, "Why would they want to keep that child here?" By continuing to grieve publicly, by just saying the child's name, it was being prevented from beginning the next journey.

2. I spoke with a coworker who experienced two back-to-back stillbirths. I'm guessing it was about five years ago. She has an older daughter and a young son, born after his siblings died. While I was on the verge on crying listening to her story and talking about my own, she seemed at peace. I was talking about some of the charity events and outreach efforts I have participated in, and she stated that she used to be into all of that, but recently stopped.  

Am I holding on too tightly to the past? Am I keeping Eleanor here instead of somehow letting her go? Is it possible to "move on"? Some days I am barely treading water, while other days are happy and productive. I can't imagine NOT mentioning Ellie or including her in special events and holidays. But am I focusing too much on the past and ignoring my future (i.e. my two beautiful surviving children)?

January 8 marks Ellie's third birthday and my thoughts have been consumed with every moment of her short life for weeks now. Not a night goes by where I am not thinking about her before drifting off. I break down during my morning shower several times a week. I have been snapping at my husband and son more than I care to lately. I find myself secretly begging people to mention her or provide the opportunity for me to talk about her.

This tug-of-war between grieving the past and living for the future is exhausting. Don't get me wrong. It's not that I think you can't grieve AND live your life. But the pain literally consumes me and I obsessively think about the what-ifs and I-should-haves. The guilt, either real or perceived, comes back. I get angry at the doctors and flight team. I can't turn it off.

Embarrassingly, I will end this post by quoting the most recent Batman...in a non-raspy voice..."There can be no despair without hope."  And I do hope. I hope I make sure my children don't live in the shadow of Ellie. I hope I can have Ellie in my heart always and accept that she is gone. I hope I can cope with the pain and grief and learn to not fight it. I really do hope.

Wash. Rinse. Repeat.

As I stumble my way through this week, I find myself reflecting on repetition and cycles. We discovered I was pregnant with Ellie on July 4^th weekend, 2009. This past Sunday, July 8, Ellie would have been 2 ½ years old…followed by this coming Saturday commemorating 2 ½ years since she has been gone. I have been here before. I remember being hopeful for healing in July 2010 and then sorrowful in July 2011 as she felt further and further away from me. Will it always be this way? Will every January, March, and July – not to mention the holidays – affect me like this…like it just happened and I can hardly catch my breath? Is this what a bereaved parent’s life is: waiting for the next painful milestone, thinking about the what-ifs and my child’s should-bes?  

Cycles are a part of life and death. I used to see their beauty; the animal dying in the woods, breaking down into food and compost, and then becoming the foundation of new life and growth. It’s nature at her finest. But what is natural about the cycle being disrupted? This isn’t the way it is supposed to happen. And every day I am caught in a new cycle of happiness for my surviving children, fear that they will be hurt, sadness for Ellie’s absence, exhaustion from fighting to cope, and anger that I now know about this world of loss.

In my office at work and on my check book, I force myself every new page to place a small, red heart on the 8^th and 14^th of the month. Not like I would ever forget these days. But it has become repetition. It is something I have to do, like brushing my teeth or reading a book to my son at night.

Anticipation, a grieving mother's enemy

You know how anticipation feels. There is that little flutter in your stomach, maybe the shaking of hands...adrenaline pumping, heart racing, voice shaking. I used to associate it with the excitement of an upcoming trip or the nervousness of a public speaking event. But now I have to add Ellie's birth and death dates, her original due date and Mother's Day to the list. My heart has been hurting as I anticipate another Mother's Day without all my children.

Last year, I posted a brief history of Mother's Day. Many don't know its true origins. We think of it now as a day to celebrate mothers, a justifiable celebration on the awesomeness of mommyhood. But it began as a day for bereaved mothers to mourn their lost children. Now there is a day for those like me called International Bereaved Mother's Day. It was last Sunday, May 6.

The week between these two special days mirrors my mood of late; transitioning between dark and light. One moment I am honoring and crying tears of pain for my first daughter, the next laughing and thanking my son and daughter while opening their early Mother's Day gift. The pain of Ellie's death and trauma of watching her last few hours still haunt me. I can smell, hear, and see everything when I close my eyes. I know the pain will never go away. These moments are sprinkled throughout my days in between the hugs and kisses given to Ellie's siblings.

Of course I am beyond thankful for my surviving children. I am tired of having that constant caveat. It's like I cannot grieve Ellie without saying I am thankful for what I have. "It could always be worse," right? But there is some truth to that. It could be worse. I know that. I don't even want to imagine what could happen to my loved ones. And as I have written many times in this blog, I don't ever want another child to suffer, be sick or die.

Sorry, I am getting off topic. This blog serves as one of my coping mechanisms and honestly helps me make it through the tough times. One thing my mind does when I am anxious is wonder. I can't seem to focus. All these thoughts and memories and what-ifs run through my head. But like most anticipated events, the time leading up to it are seemingly much worse than the actual event. I just have to keep telling myself that as I prepare for another day without Ellie.

Haunted

My now 5 month old daughter has been having a few issues, which requires us to see a pediatric physical therapist weekly. We just started to see a new one this week at the children’s hospital in the state capitol. It is connected to the NICU where Ellie spent her short life. When we arrived for the appointment, we took a convoluted path, but eventually found our way to the appointment. At one point, I stepped out of the session to use the restroom and was immediately taken back 26 ½ months. The smell of the soap and water, even the way my skin felt after washing my hands, triggered so many memories. Upon leaving, we were told of an easier way out. When the elevator doors opened, another smell hit: the food court where we quickly walked to in order to grab a bite to eat and get copious amounts of caffeine after Ellie crashed the first time and was stabilized. I vaguely remember texting with my best friend, in utter shock as I tried to choke down a few bites of food to prepare for the long night ahead. I was pumping because I just knew Ellie would need it and I desperately tried to stay hydrated and fed in order to produce. But the day was already so traumatic, that I just couldn’t stand the thought of eating. But I went anyway. Like so many decisions those six days, that one haunts me. I can try to justify it by saying the doctors and nurses were running tests and changing equipment and we wanted to stay out of the way. I didn’t have to pump at that moment despite being engorged. I certainly didn’t have to meet basic bodily functions and use the restroom or eat. I should have done nothing except stay with her. But I left. I couldn’t think. I left and it haunts me. So when those elevator doors opened and I smelled that food court, I shivered as if seeing a ghost.

As we turned the corner, my husband and I both slowed down momentarily as we saw the hall where you turn to enter the NICU. I saw the pole I leaned against as we called our parents, in utter shock at what had just happened. I couldn't bear to look toward the NICU doors and just stared at the ground, forcing myself to take slow, deep breaths for fear of passing out. We walked up and over the same sky bridge to the parking garage that we did when she died: me catatonic, empty handed, my husband desperately trying to figure out how to fix things while fighting his own tears. The next day we had to go back in order to release her body for cremation because I refused to travel 60 miles back home without her in my arms. As my husband talked to the doctors and signed the forms, I stood, and stared at the now empty spot where her NICU open-bed was just twelve hours earlier. One neonatologist came up to me and just grabbed my hand. I don’t remember what we talked about. A nurse had gathered the few things Ellie had, mainly hospital equipment that I wanted to keep. We had bought things the day before to decorate her area with but waited since we were supposed to fly to DC that night.

I walked up that ramp the day after her death, holding a small pink tub with leads, a bulb syringe, two books we had bought to read to her, a small stuffed monkey, the dress they put her in after she died, an eye mask for her bilirubin treatments, a thermometer, a lock of her hair with a bow taped to construction paper with two pictures of us holding her, and a blanket some group makes for babies that pass. I looked down at Adelaide and thought how strange it was to actually leave this place with my living daughter. She was happily playing with a toy hanging from her car seat handle, oblivious to the significance of the place.

Our daughter will get better and stronger as a result of that place. She will catch up and undoubtedly grow up to become an amazing woman. This place owes me that. The haunted memories of Ellie's struggle and my guilt will be shared with her little sister as she heals. And baby giggles will echo down the hall.

Grieving without Believing

***I want to start this post by asking for understanding from anyone who is devout to a particular religion. It is not my intent to start a debate, but I do not believe in a higher power despite being raised in a moderately religious household. If this topic causes you any negative feelings or if you feel the need to "save" me, I ask that you please do not continuing reading. I will strive to be respectful in how I express myself, but this blog is for my continued struggle and I have to be who I am. I hide it almost every day to avoid conflict and debate and out of respect for those closest to me that believe, but not today. Those niceties are rarely given to me. You can poke holes in my theories and ask me why as many times as you want. But this is me. Thanks. ***

My husband recently forwarded an article from the Huffington Post about a woman who lost her three month old and is an atheist. I found myself silently nodding my head and thanking the author while reading it. There are so many emotions when you are grieving. Add every day stresses and events and it is even tougher;  the (hopefully) occasional inconsiderate/impatient/non-understanding friend or family member, continued societal taboos on talking about child death, etc.  But for me, and this is my personal choice, not believing in a higher power makes this all even more painful (especially while living in the southern US). Being raised Protestant, I know the stories and general foundations of Christianity. I would love to imagine Ellie happy and with her grandparents. But I believe that death is final. I will not see my daughter again. She is not with other loved ones who have passed. She is gone and it hurts like hell. Yet, I continue to hear people explain her death away as if some magical man in the sky took her from me and wanted to make her an angel. Or worse, that she is better off in some imagined, convenient place instead of here with her family. These statements, although I know they are not made from malice, hurt in such a deep way. I feel strong in my beliefs, yet begin to question myself, if even for a moment. Did I do something wrong? Am I being punished? Is my daughter dead because I don't believe? If I would have relented (repented?) and prayed, would she still be here? Do they think she was taken from me because I don't believe?

And then there are the survivors. Believe me. I NEVER want to see another child die. I don't want anyone to have to spend weeks or months or years with a child who needs assistance. I wish everyone were happy and healthy. But we all know that is not reality. When I listen to or read about someone recovering or beating the odds and a comment is made about God's will or the power of prayer, I want to scream: "Is anyone awake? Do you see the state of our world? The poverty, war, pollution, hatred, classism, disease, etc.? No amount of prayer is going to stop that! Have you read the Old Testament?? Get off your butt and do something about it!" I consider myself a compassionate person and think I have done good deeds throughout my life. Hundreds of people in my community and family as well as friends were praying for Ellie. But she died. It didn't help. It didn't save her. It didn't "save" me. I am not meant to understand why she's gone, you may ask? I don't buy into that. I know I will never know why her heart formed the way it did. I understand natural selection and nature and know mutations and errors happen all the time. But knowing and accepting are two different things.

I wonder how people feel when they thank a higher power for good things or health in their lives. I know when bad things happen, many will say it is done for a reason, to learn a lesson in some way. Other's will just accept that it is the will of some magical creature. Some may think I was meant to learn a lesson. But that is insulting to me and Ellie's short life. I am thankful for every second I had with her and know I am lucky. I know too many others who had so much less time. But please don't rub my face into your "good fortune" because you went to church or prayed or read your bible. How awful to imply that you deserve good things while others who don't believe do not. Are you somehow more deserving? Just support and love me. Tell me this sucks and that it's not fair. Please let me continue to talk about my girl and my pain. There is no reason to try and explain it. It happened and I broke as a result of it. No amount of prayer is going to fix me.  

I feel my daughter is with me. I really do. I carried her and felt her move. I nourished her and hope she felt how loved she was. I remember her and will always honor her. But her light has extinguished and I hurt every day knowing that I will never see her again. Believe me. It would be easier, in my mind at least, to trust that she died for a reason. Not to say that religious people don't struggle with the death of a child. Some may falter while others believe even more. But losing a child isn't easy for anyone.

I like how Jena Pincott puts it: "During pregnancy, cells sneak across the placenta. The fetus's cells enter the mother and the mother's cells enter the baby --and stay there for life. In mothers, fetal cells often take residence in her lungs, spinal cord, skin, thyroid gland, liver, intestine, cervix, gallbladder, spleen, lymph nodes, and blood vessels. The baby's cells may also live a lifetime in Mom's heart and brain. Implicated in health and disease, fetal cells may also behind some of the mind-shifts that happen in motherhood."

But as I have written before, I do think her legacy lives on through her siblings and her parents.

(I do want to say how thankful I am for the support I have received. This predominately Christian community supported our family during our worst nightmare. But I believe it was out of the goodness of their hearts and not at the hand of God.)

Don't Borrow Trouble

Has anyone ever said that to you? I've never understood what that meant...who would ever "borrow trouble?" This has been said to me a lot since Ellie died. At first it was in reference to fears I had regarding my living son's health and well-being. I hovered and stressed a lot the first year after Ellie died. Nightmares and lack of sleep didn't help and neither did a miscarriage 10 months out OR losing my youngest daughter's twin at 9 weeks pregnant. Now that I have a new baby in the house, I am even more worried. It's hard enough to look at her and think about how Ellie may be developing at the same age. And it is so bittersweet to watch her play with her big brother. So, when there is a cold, or bumps and bruises, I automatically go to a dark place, if even for a minute. I have experienced the worst thing a parent can experience. I am not naive anymore.

So, am I "borrowing trouble" any more than any other mother? What good parent wouldn't worry about their child? You don't have to be neurotic, but a healthy amount of fear and listening to mommy intuition is a good thing in my mind. Am I more sensitive to normal mom-on-mom crime (what I call it when mother's passive-aggressively judge another mother...or somethings NOT so passive aggressively) because of my experiences? Maybe it is just my sensitive nature in general. I don't know. But I am sick and tired of being told, "don't borrow trouble." The next person who says that to me, may be borrowing their own trouble!

On this, President's Day

A friend, and fellow bereaved mother, had the following posted as her facebook status today:

In the words of US President Dwight David "Ike" Eisenhower, writing about his son, Doug Dwight, "Icky," three years old, who died at Camp Mead, Maryland. In President Eisenhower’s autobiography written in 1969 (49 years after Icky died), he stated, "With his death a pall fell over the camp. When we started the long trip back to Denver for his burial, the entire command turned out in respect to Icky. We were completely crushed – it was a tragedy from which we never recovered. I do not know how others have felt when facing the same situation, but I have never known such a blow. Today when I think of it, even as I now write of it, the keenness of my loss comes back to me as fresh and terrible as it was in that long, dark day soon after Christmas, 1920."

It fits perfectly with my mood lately. Sometimes as a bereaved parent, you feel alone in your thoughts. When I am happy holding my four month old daughter, or loving on my 3.5 year old son, guilt sets in that Ellie isn't here. Of course I am lucky they are here and love them. Of course, I would never put them in Ellie's "shadow" as some have warned. But at night, when the kids are finally asleep and as I listen to my husband's deep, slow breaths, my thoughts return to Ellie. I will never be the same person I was before and I cannot simply "move on" or "get over it." It was recently suggested that I "move on" for the sake of my living children and that my grief may negatively affect them and/or our relationship. What a horrible thought. Can you imagine never mentioning your child again? When they go to college, is it out of sight, out of mind? When you go out for a date night, do you forget you have children? Yes, these are different situations, but the premise is the same. They are always with you, in your heart. I can't imagine internalizing this pain nor could I imagine life repressing my memories or Ellie's existence. I have given birth to three children and lost two before given that chance. I think my children will become more compassionate people knowing they had a sister who died. They will hopefully not take life for granted. They will know how much they were loved and wanted. They will see our tears and know it is because we love our children so very much. 

So, in honor of President's day, I thought I would do a little research on how these powerful people reacted to the death of their children. Even during a time when children died often to disease, they were in the public eye. How did they deal with their grief?

Martha Jefferson lost a child before marrying President Thomas Jefferson, and five of their seven children died before maturity. She died four months after the death of her last child. Very few documents remain in her handwriting, but one can attest to her pain of loss and hopes of seeing her children again. She quoted Laurence Sterne's Tristam Shandy:

Time wastes to fast; every letter

I trace tells me with what rapidity 

life follows my pen. The days and hours

of it are flying over our heads like

clouds of windy day never to return-

more. Every this presses on-

and every time I kiss thy hand to bid adieu, 

every absence which follows it

are preludes to that eternal separation which we are shortly to make!

I often see people chastising others on facebook for quoting people; the sayings having some importance on their lives. Amazingly 200 years ago, a bereaved mother couldn't sum up her pain and turned to the words of another, just as we still do today. 

Abraham Lincoln lost three of his four children (two before his assassination and one after). It is said his wife, Mary Todd, never regained her sanity. And it is reported that Abraham Lincoln, not traditionally a very religious man, came to God after the death of one of his sons. After his beloved "Eddie" died, an unsigned poem was published in the Illinois Daily Journal. the first stanza of "Little Eddie" reads:

Those midnight stars are sadly dimmed, 

that late so brightly shown. 

And the crimson tinge from cheek and lip,

With the heat's life form has flown.

The Angel of Death was hovering nigh, 

And the lovely boy was called to die.

Benjamin Franklin's son, Frankie, died of small pox at age four, prompting him to become one of the eras biggest proponents of inoculation (a lot more primitive way of receiving vaccines, obviously). Mr. Franklin took his tragedy and pain and made it one of the focal points of the rest of his life. Rumors that a failed inoculation led to the child's death may have led to his advocacy. Either way, the death of his child forever changed him and prompted him to help others.

While in office, John F. Kennedy's son, Patrick, was born prematurely and died two days later. After Patrick died, the Kennedy's spent many summer weekends at their Cape Cod residence. 

The list continues: John Adams, Thomas Jefferson, Calvin Coolidge...Even recent presidential candidates including John Edwards, John Kerry, and Rick Santorum have lost young children. 

One of my favorite quotes is by Ms. Elizabeth Edwards, wife of presidential candidate, John Edwards. After her 16 year old son was killed in a car crash, she quit practicing law and turned to philanthropy. She so perfectly said, "If you know someone who has lost a child or lost anybody who's important to them, and you are afraid to mention them because you think you might make them sad by reminding them that they died, they didn't forget they died. You're not reminding them. What you're reminding them of of is that you remember that they lived, and that's a great, great gift."

On this President's Day, I remember and say aloud the names of all those children I know that have gone too soon. And I scream, "Eleanor."

For the Newly Bereaved

I have been thinking about where we were two years ago today: planning Ellie's memorial service, crying, staring, sleeping, crying, sitting in her room, drinking, arguing, screaming, crying...on and on and on. I was so lost. How could this have happened? What the hell do I do now?

I wish someone who had experienced the loss of a child would've helped. I didn't know about any organizations at that time. My mother-in-law lost her two month old 42 years ago, but losing her granddaughter seemed to push her off the edge a bit. I talked to her a little, but neither of us were functioning very well.

So, one of my resolutions this year is to help other bereaved families more. Below is my attempt at that!

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Let me start by sending my deepest, deepest condolences. This is so unfair. It’s unnatural. It just sucks…there is no other way to say it.

Grief is one of the most powerful emotions out there next to love. When you combine the two, it is a miracle one can even function.

It doesn’t feel like it now, but you will learn to cope and you will start to heal—although that hole in your heart never will. You have to get up every day and continue to love the memory of your sweet child and love the bright future of their legacy. Everything will have to be okay, because you are currently surviving the worst possible situation a parent can experience. Although it feels like your heart will just stop beating; that your lungs will cease to fill with air; you will survive this. 

I know nothing will help your pain. Time helps a little as does a good support network of loving, patient friends and family, but you will never truly ‘feel better’ (people will ask if you ‘feel better’ or ‘how are you feeling?’ often). That is not meant to sound dire or give anyone permission to ‘check out’.  It doesn’t mean that there won’t be good days and happy memories.  But, the situation is what it is.

So, I wanted to offer some words of advice and encouragement, if you can imagine that, during this horrific time.

The first few days after your child’s death will be a blur. Focusing on the funeral arrangements (and you should be involved or you may regret it later) and/or caring for a surviving child or grandchildren will help time move, but you are in shock...on autopilot. You will probably be bombarded by emails, calls, letters, and texts from caring and loving friends and family. Some people may come across insensitive or may tell inappropriate stories of other children passing--but they do it out of love and pain. They don't know what to say and just want to comfort you. You may feel you need to make them feel comfortable by being polite or thanking them, but no one should expect that right now. They are there because they care and love you. They don't expect anything in return. It is hard to ask for help and one never thinks they will experience the death of a child. But people are amazing in these situations; so caring and self sacrificing. Let them help.

You may go through an array of emotions if you haven't already: anger, guilt, sadness, fear, loss, etc. You may question your beliefs or find extreme comfort in them. But your grieving will be your own process that cannot be directed or explained. There certainly isn't a timeframe. You just need to be.

When visiting friends and family begin to leave, you will continue to go through the motions, writing thank you notes, possibly going back to work, cleaning out your child’s room, caring for surviving children, etc. And you will re-live everything over and over again. You may snap at family members or need to be alone. You may need to talk about what has happened or you may need to stay busy. Or you may just need to sit and cry and stare. You may talk about getting pregnant right away or about never having another child again. You may drink and sleep a little too much and bathe and eat a little less often...and that ok for the moment (but don't let it consume you). You will be in survival mode. Be irrational and sad if you need to. As long as you aren’t hurting yourself or others, do what you have to in order to get through this incredibly difficult time. What has happened is horrific and not fair; it’s hard for the brain to even process. Sometimes it doesn’t feel real…a horrible nightmare.

Some may tell you, or you may read, that the divorce rate is higher for couples that have lost a child. This is not true. There is no supporting documentation or cited study for that statistic. You both are experiencing something no parent should have to. You have been through a roller coaster of emotions and have argued more than ever and loved deeper than before. It is a struggle because everyone, especially men, grieve differently (this is both due to personality types and societal pressure). But communication, space, patience and love are the key. It is not pretty at times, but you can be stronger as a couple for everything. No one else knows your pain better than your partner but don't expect them to know what is going on in your head. Lean on them, talk about what you feel and offer your understanding too.

As time passes, that amazing support from countless family, friends, and strangers will fade. It is natural and doesn't mean people don't care or don't still hurt. But they will move on while you will be stuck. However, there will be people in your life that just cannot understand your pain (and only we know how truly lucky they are to have never experienced a child’s death). They might expect you to ‘buck up’ or ‘move on’ or some other absurd thing. If you have to remove them from your life or alter your relationship, do it now! You can spend an immense amount of time just getting people to try to remember and honor your child, but is doesn't mean that they will or even want to. Their ignorance only intensifies the grieving process.

Know that you will never (or shouldn’t)  just 'get over' what has happened and that there is still support there. You are forever changed - you belong to a community of grief. You are defined as a bereaved parent now although it doesn’t have to define you. But you will need support for a long time. One year will not be enough as some will say. Yes, the first days weeks, months, and year anniversaries of birthdays, holidays, and the deathday will be extremely hard. It does not get easier with time, just less painful. You eventually learn how to cope (most days). Greif counseling or joining online groups like the Compassionate Friends or Faces of Loss, Face of Hope can provide an amazing amount of support. You may also think about getting involved in charities or service activities in honor of your child.

Memorial items of your child are a must right now. A blanket they slept on or were wrapped in, medical equipment used in their care, clothing/toys you intended for them to have, etc. should be kept. If you have experienced neonatal death, you have very few items that were actually touched by your child, if any at all. Having a memorial item made such as a necklace, bracelet, picture, cast/mold, tattoos etc. with your child’s name and birth date might help keep your child close.

After a while, and it is different for everyone, you will be able to make it through a day without the lump in the back of your throat or knot in your stomach. You will be able to smile and laugh again although it seems so foreign right now. You will be able to talk about your child without crying (although it is ok to still cry). One day you will be sitting and realize you have gone an hour without thinking about your child or your pain and you will panic. It is ok. It doesn’t mean you love them any less.

There will continue to be triggers for a long time beyond the anniversaries and holidays. A certain song or book; another baby or pregnant woman; and toys could cause you to break down in tears. Leave the situation and don’t feel you have to ‘suck it up’ or attend functions that you know will upset you. If people can’t understand how much pain you are in and display some patience and understanding, then they shouldn’t be in your life to begin with. You can choose to talk to them about this by stating EXACTLY what you need (please don't invite me to baby showers; please warn me if a movie/book you are recommending shows a child being hurt or dying or bereaved parents; please say my child's name and remember their birthday/deathday; etc.). Youc an also chose to distance yourself. Reconcilation may happen in the future, but you have to make it through every minute, so do what you must!

You may have days when you cannot get out of bed and have to stay home. You may get angry and blame yourself (after all, as a mother and father it is our job to nurture and protect our children). These are completely normal feelings of truly amazing parents (and you are parents no matter how long your child was alive!). You may also incessantly seek answers to medical complications/genetic disorders or ask why and what-if or think of all the I-should-haves. It will be tormenting to run through all the different scenarios. But the past cannot be changed although we desperately try to will it so. Redirecting those repetitive thoughts is difficult, but can be accomplished by allowing yourself to do so (as well as help from good friends/family and/or a cousnelor). Allow yourself to grieve, but allow yourself to heal too.

This life is so hard, especially without our children. But you will heal. You will sincerely laugh again. You will be able to make it through a day without crying. You will feel yourself getting stronger and loving your child even more…if that is possible.

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...

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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.

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.

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?