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.

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."

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?

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?

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

Words. Silence. Rants. (In no particular order)

“Words can sting like anything, but silence breaks the heart.” (Phyllis McGinley)

I had experienced the death of several family members prior to that of my daughter and regularly attended funerals with my maternal grandmother as elderly church members passed away. My maternal grandfather, who I was very close to, died when I was 8. I remember crying and asking God, "Why?"...a question I would ask repeatedly, to any and every one, for years until eventually giving up the idea of it all. The coffin was so big. It was just sitting in the front of the room all alone.When no one was looking, I touched his face and it was so cold. I stared at the make-up and imagined what he would think knowing he had lipstick on. I wondered where he was; was my grandfather still in there? Family and friends surrounded my grandmother, with her quiet strength. I listened to the many condolences she was receiving and watched as she blankly responded, "Thank you." An age well before the technology craze, people came to visit, called, and sent cards for a few weeks after, but as quick as it began, it was over. We didn't talk much about it, or at least I don't remember talking about it later. I just know things were different and that I was sad. I often wonder how my grandmother felt.

Elizabeth McCracken writes in An Exact Replica of a Figment of My Imagination: A Memoir, that "...my grief was still fresh, grief lasts longer than sympathy, which is one of the tragedies of the grieving..." This is so true. I've expressed it in a much less articulate manner by saying, "the time to walk on eggshells is over." (Of course this is more for the other person's behalf when they unknowingly say something insensitive. My passive-aggressive way of telling them it is ok that they said something harsh. Needless to say the point has never hit home with the offender.) But that doesn't give anyone the right to determine how one should grief or when that process is 'over'.

I wish I could say people haven't said hurtful things to me these last 13 months. As a member of the infant loss community, I have unfortunately read similar accounts of insensitive comments to the newly (or not so newly) bereaved parent. The Compassionate Friends has fliers one can forward to family members on what NOT to say*. I suspect readers of this blog will be bereaved parents or my loving friends, all of which would never say the following. It is sad, but I write the following things from personal experience; the majority were told to me from my family. (Can I reiterate how LIBERATING it is to type this and be truthful without fearing repercussions? Gotta love the anonymity of the Internet!)

1) "God has a plan" or "God needed another angel."

2) "At least you have a living child."

3) "You can always have more children."

4) "It's time to buck up"; "It's time to move on" and/or "Aren't you over this by now?"

5) "She was only six days old. It would have been worse if she were older."

6) After my miscarriage (10 months after my daughter's death), "Lots of women have miscarriages. Why would you put yourself through trying to get pregnant again?" / "Women have been having miscarriages since the beginning of time."

7) Telling stories of the horrible deaths of other children ("they were spread out all over the median" in a car wreck), followed by the showing of the newest pictures of grandchildren.

8) Telling stories of crack heads having babies only to "throw them against the wall" to which they survive only to be adopted by a wonderful family. "She how adaptable children are (said with a smile)?" This from a PhD psychologist.

9) "Give yourself six months to a year and it will be better."

10) "You are so strong. I don't know how I would survive if one of my children died." 

11) "You have so much to be thankful for, why are you still upset?"

Don't get me wrong, I had support. My husband and best friend were and continue to be my rocks. I have met strangers that share similar stories who have become great friends. Lots of family have helped us immensely. There has been support. But those I expected to provide the most support were either emotionally unavailable as always or just didn't care. It hurt the most from my father, grandmother (paternal), and sister. Called, "a bitch trying to be the center of attention" a week before spreading Ellie's ashes. Told "Not everything is about Ellie and I think you like to use her to hurt people" after crying when my father put my two-year old son on a huge zero-turn lawn mower. My sister did not attend her niece's funeral for the opportunity to make $600 after visiting us in the hospital for 30 minutes and not asking once about Ellie or me. My father said once, "I think it would've been worse if she were older and died in an accident of some sort, like drowning in a pool" in response to my cries of asking why and how this had happened. Emotionally distant my therapist says. Cruel. Insensitive. Selfish. Uncaring. That is what I say. That is when they TALKED to me, never taking the initiative.

And then let's not forget the silence. Like the beginning quote states, it "breaks the heart." No calls or emails or cards. I tried pleading, anger, tears, distance, providing resources from professionals. I tried being assertive, "I need you. I am broken. Please, love me. I need to talk about my daughter." They are shocked after one year that I still grieve so often, usually externally. But still, silence. They have moved on while I am stuck. 

Believe me I understand that it is hard to know what to say in the face of injustice and tragedies. Looking back I have said insensitive things or stayed away in an attempt to shield the grieving from my ignorance. People usually say things out of the best intentions. I have to believe people aren't intentionally cruel. And I truly believe what I wrote earlier, "the time to walk on egg shells in over." People should talk about babies and pregnancies and life...and death for that matter. But please don't forget Eleanor. Please. Just because it has been a little over a year since her death doesn't mean my daughter didn't exist; that she doesn't deserve to be mentioned or memorialized.

Not one family member sent a card or called or sent a gift in memory of Eleanor for Christmas OR her birthday/death day. NOT ONE. Thankfully my amazing friends more than compensated and I am continually amazed at their compassion. The silence is so much more painful than the hurtful words.

(*NOTE: Forwarding a list of what NOT to say to bereaved parents to offending family members may not be received as anticipated and in fact may piss off those that have pissed you off therefore perpetuating the vicious cycle of pissed off-ness.)

Here. We. Go. In the beginning...

And so it begins; another addition to the blogosphere. My topic isn't unusual. My insight and wit are moderately amusing at best. I will probably make horrific grammatical errors. I will be amazed if anyone reads this beyond my most faithful and loving friends and family. But here I go.

Of course I already have a blog, who doesn't? But that is a private place for family to read updates and see pictures. It's been around since the birth of my son, Sebastian (June 2008). But this blog is something more for me than showing off my adorably intelligent son who will surely be some insanely important man who will change the world for the better with his charm and compassion. This is a blog about the inner workings of my semi-stable mind...which I guess sums up all blogs. (Oh, and I like that I am anonymous here!)

I titled this blog, "Secret Badge of Honor". When my daughter died, a story I will get to soon, my father-in-law wrote:

Time heals all wounds, of course, but there are wounds we carry like secret badges of honor, or perhaps they are sacred flames of memory. If we hold them too close, we will burn; too far away, and we feel a chill; hold them at the right distance, though, and we feel the gentle warmth of love and memory.

(Brilliant, isn't he?) This resonates with me. Not only does it speak to the horrors of loosing one's child and the pride and grief that follows, but I think it speaks to one's life journey. Our past defines us. Sometimes we wear our past on our sleeves and at other times we repress or ignore it. Sometimes our past was horrific and unfair. Sometimes we don't realize how good things are going until it is too late. But whatever happened then has made us who we are; good, bad, indifferent. We have survived the past and there should be pride in that. I think we all walk around with a secret badge of honor.

MY DAUGHTER

Eleanor. Beautiful Eleanor. There she is in the picture at 20 weeks. Perfect. We had no idea that she was very sick with an imperfect heart. Ellie, as we lovingly called her, was born via c-section at 30.5 weeks on January 8, 2010. She had a previously undetected congenital heart defect (trunkus arteriosus), VSD (hole in her heart) and hydrops, all of which was compounded by her prematurity (lungs).  She fought for 6 days and passed away on January 14, 2010. She was the strongest person we have ever known.

My husband, Chris, and I had no idea there was a problem with our girl until a nondiagnostic 4D ultrasound tipped my doctor off (there was excessive amniotic fluid and swelling in her abdomen, scalp, and around her heart along with my dramatic weight gain and too large belly).  On January 6, we went to a Maternal Fetal Medicine Specialist in the state capital for a more detailed ultrasound. He gave us dire news and sent us to the University hospital for more screening. His diagnosis was confirmed and I was admitted by noon. Her prognosis included a 20% chance of survival and at least one risky open heart surgery in the immediate future. They started the first of two steroid shots (48 hours) to help Ellie’s underdeveloped lungs. After she was born, she was immediately taken to NICU — but Chris and I got to hear her cry out three glorious times. She was put on a respirator and a myriad of medicines accompanied by a spider web of tubing. She was stable for the most part and was urinating, which was helping to get rid of all the excessive swelling in her body. She was responsive to our voices and would hold a finger with her tiny hands. We read, sang, talked and sat with her. She was beautiful.

When I was discharged from the hospital, we moved a few minutes away to the Ronald McDonald House. By day 4, Ellie was deemed stable enough to travel to Washington D.C. to National Children’s Hospital via the University of Alabama, Birmingham’s Critical Care Flight Team. She was to have open heart surgery to repair her defect and would recover there. We believed she would survive the surgery and recover…we had so much hope. The day she was set to travel, we learned her flight would be delayed so the flight team could go to Haiti to assist in the earthquake disaster relief. She was rescheduled to fly out the next evening, January 14, at 7:00 pm. She coded the first time at 3:00 pm that day and again at 7:00 pm. Her flight was canceled. She passed a little after 8:00 pm as we were finally able to hold her for the first time; Chris holding her hand and me singing and rocking her. She was cremated the next day and was finally brought home with us on January 15. Her memorial was January 23, at a historic mansion. Over 100 family, friends, and coworkers helped us honor her short, but powerful, life. Her ashes were spread in the ocean along with six pink Gerber dasies on her original due date of March 16.

Ellie's heart defect was a fluke. It just happened. It is still hard for me to type that and I am not to the point were I can say it out loud. "It just happened." There was no chromosomal defect. There was no ‘environmental’ issues – internal environment, like gestational diabetes or, for example, taking medications for seizures. Of all heart defects, the kind she had represents 1%. Of that 1%, only 1% are classified as ”isolated cardiac anomolies”. There appears to be no cause for Ellie’s defect but chance. 1% of 1%. So, it just is what it is. A nightmare.

That is the quick and dirty of what happened a little over a year ago. Since then I have gone through the spectrum of emotions and the "stages" of grief. I've been on antidepressants, in grief counseling, attended monthly meetings of The Compassionate Friends, and have been involved in multiple charity events in honor of Eleanor. It's not enough. I just need her. So, in an attempt to further grasp what has happened I write here and send it into cyberspace hoping it will finally make sense. (Just let me be delusional!)