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.)

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.

A Bereaved Mother in History

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

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

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

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

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

Thanks for the Reminder

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

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

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

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