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.

Original Due Date

Today marks the second anniversary of Eleanor's original due date. It may seem silly to some that I commemorate today since she was born on January 8. But this was the day I looked forward to for eight months. I touched my belly and counted down, anxiously awaiting her arrival. I still have the calendar from work where I marked off the weeks and circled March 16, 2010. I'll never know if she would've actually been born on this day; her brother came right on his due date so I can only assume she would've as well. My heart hurts so much today. In a way it marks the end of my annual nine weeks of mourning, although my grief is year round. I love you, Ellie.

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!

Love and Taxes, part 2

Last year at this time, I wrote about how awful it felt to 'claim' Eleanor on our taxes when she wasn't here. I thought it would be less painful this year. But just like everything I have experienced in this grieving process, you just never know. As I was preparing my information for the accountant, I pulled my four month old daughter's social security card out. It suddenly hit me that we won't be 'claiming' Ellie this time.

It feels like a punch in the gut every time these realizations occur. I mean, I accept she is gone. I definitely don't understand why she had to die and I definitely wish she were still here. But I am in the stage were I can go several days before there is a major trigger that makes me step back. I always think of her. I watch her baby sister and can't help but wonder what Ellie would be like at that age or now as a two year old. But most days I can keep my emotions fairly stable. I suspect things like this will happen the rest of my life. As grieving mothers know, and constantly fight to remind people: "how can I ever forget my child?" I hate that the federal government has already.