The Question

I've been asked twice in the last week if I had kids. This is a really difficult question...to say 'no' is so easy, almost automatic, reflecting the reality of what I feel every day. But at the same time, 'no' is denying that Elise ever existed, denying that I was her mother...am her mother. Yet saying 'yes' requires so much more emotional work and I feel like I then commit myself to the explanation. I know I don't have to explain but that's what I do. I talk when I don't need to and I don't do very well with silences. So, a 'yes' is telling her story which makes me feel excellent because it needs to be told but is not always convenient, does not fit into a short pretty package, does not have a happy ending.

I've been interviewing candidates for residency these past few weeks and Tuesday the question came. I said 'no' well 'yes' and recieved an interesting look from the applicant. I then gestured to the photo of Elise on the wall in my office and said 'we had a daughter who died of a brain hemorrhage in October.' If I must critique the interaction, it went over quite well (as well as something like this could go) and the candidate said she was sorry and I thanked her it and that was that. Today, one of the other attendings at my hospital was talking about her son's grades and, out of nowhere in the middle of her story, asked if I had children. Without thinking I said 'not yet' and immediately felt horrible. Before I could say anything else, she continued with her story. I totally would not have wanted to talk about Elise in that crowded elevator but at the same time, I just felt so sad that it seemed so easy for me to say 'no.' I feel weak for not saying 'yes,' and angry at myself for caring about other people feelings, for worrying about softening the blow for them.

This experience reminded me of a passage from an excellent book my mom sent to me, Life Touches Life: A Mother's Story of Stillbirth and Healing, by Lorraine Ash. Even though her experience is with stillbirth, so much of what she writes about resonates with me and our experience with infant loss.

"Mothers of stillborn children often wind up soothing others...Eventually we parents came to realize that we may be the only firsthand witnesses of life's brutalities that some people ever know. Talking to us may be as close as many people have ever come to real horror. Perhaps stillbirth moms are all that stand between tham and the horror, and they desperately want us to keep silent about what we experienced. No matter how great the need to testify, most people want us to shield them from the blood and pain. They would rather not know. They are afraid to know."

I want to thank you for not allowing us to be silent, for wanting to know, for not being afraid to know, for being willing to embrace our horror with us. I want to thank you for all the amazing things you've said and done...things I would never have known or thought to say or do...things I will always do from now on.

One Month (Father's Edition)

Emptiness.  There's no other word that better describes it.  We had anticipated so much would happen in the month after Elise's birth...sleepless nights, constant diaper changes, feedings, the sounds of crying echoing through the house, and multiple opportunities to hold her in my arms as she dosed off to sleep.  Obviously none of those anticipated moments has come to fruition.  Instead, our house is eerily silent.  There's no crying, no dirty diapers, no daughter to hold in my arms.  

It leaves you feeling empty.  There's a void because we spent so much time and energy preparing "space" for her.  Space in our lives that cannot be filled by anything or anyone else other than her.  We have tried every day to put one foot in front of the other and continue on living our lives, but it's difficult when nothing is as you expected.  Nothing fills the space.

Things weren't supposed to be like this.  I shouldn't be waking up to an alarm clock, my daughter should be waking me up.  I shouldn't be able to sleep through the night, so maybe that's why I wake up at all hours for seemingly no good reason.  I shouldn't be lying on the couch with my arms folded across my chest, I should be holding Elise.  I shouldn't be wondering what to do with myself, I should be looking forward to spending every waking moment with Elise.  

Nothing is as it was supposed to be.  Elise's birth brought us to the top of the mountain, and we expected to stay there for years to come.  Instead, we got pushed off the cliff and began a free fall into a chasm so deep we never imagined it existed.  There's a tremendous void in our lives right now.  No matter how much we try to fill up our lives with other things, there's still a void, a space... a feeling of emptiness.

One Month - A Letter to Elise

Dear Elise,

One month ago tonight you came into our lives and changed us forever.

We fell in love with you again the moment we saw you, just as we had so many months before. You were perfect in every way, from your tiny fingers and toes to your head of dark hair. We loved getting to know you and just looking at your beautiful face. Did you know your eyebrows are just like mine? They end abruptly somewhere in the middle and restart just above where they left off, two brushstrokes of the Creator's hand. Did you know your forehead is just like your father's? Broad and distinctive, a classic family trait.

In the short time we spent with you, you gave us so much joy. We never knew how much our hearts could open, how the rest of the world could fall away when we were with you. We gave you all the love we could, every moment of every day we had together, and we hope you felt it. We want you to know we loved you every minute of your life. Oh, how we wish we had more time with you. There were so many things we wanted to experience with you, so many hopes and dreams for you in this life.

Elise, we still struggle to understand why you were called home to God so soon. We know that He needed you and that He doesn't make mistakes, but that doesn't make us miss you any less. We know we may never have all the answers and that will have to be fine. We do know we are different because of you. We listen more and criticize less, we try to talk with God more, truly experience nature, and value our relationships with people. We are more patient and less petty.

Our lives will never be the same, little girl, and that is a good thing. And even though you are with God, we will always be your parents and we will never forget the precious 4 days that we had together as a family.

Love,

Mom

shenandoah

Although we visited Shenendoah National Park over a week ago, I haven't really felt compelled to write about it...until now. It was definitely spur of the moment but seemed like what we needed; a little adventure, a reason to get away from Baltimore, a chance to be outside and renew ourselves somehow.

It turned out to be all of those things. With AJ's parents and my mother, we hiked. It wasn't very far but felt strenuous and exhilarating nonetheless. We walked through fields of hay-scented ferns, manuevered carefully down steep, rocky, leaf covered paths, and enjoyed spectacular views of the sprawlng Shendandoah Valley. We spent a short time on the Appalachian Trail which runs the length of the park and enjoyed the brilliant foliage, already peaking at certain elevations.

AJ and I hiked alone to the base of a waterfall and enjoyed the relative quiet of the forest. We talked about the future and felt a lot of the hike was a metaphor for our lives at this point...lots of twists and turns, not quite knowing what lay around the bend, but walking it anyway. I don't think we answered any questions or solved any problems, but it was good to be there and do something together that we've always enjoyed.

alone again

AJ and I went back to work on Monday and my mom departed for the long drive home. And now we are along again. I awoke each morning this week and thought how strangely quiet, cold, and dark the house is, so different from everything we had expected, everything we had counted on.
Yesterday marked 2 weeks without Elise in our arms.
We talked for a long time last night about our pain, our loss, and our shared fear of what the future holds for us. We want so much to be more than just the two of us and Rocky, and yet that dream seems so elusive now, fraught with risk and worry and the sense that time is getting away from us.
I know this is all part of the process and I know there are brighter days ahead and I really look forward to standing in the sun again. But for now, we are in shadow, and we miss our dear sweet baby so much.

Afterward

The week after Elise died was filled with painful decisions, wonderful conversations, and an outpouring of so much love and so many prayers for which we will forever be grateful. People we hardly knew or had never met sent us their thoughts, hugged us tightly, told us their own stories of loss...and continue to do so. People we've known for a long time, our friends and family, were (and are) so good to us. They performed the mundane household tasks that really made life easier and took on the important work of listening to us without turning away from our pain.

We held a short visitation on Friday, and a funeral mass at our church on Saturday morning, followed by her burial in the children's section of a cemetary near our church. It was all so difficult but, at the same time, so necessary and beautiful.

The hard work of grief continues for us daily.

Elise's Story Part III

It was Monday night. We knew sometime soon we would let our little girl go home. We both dreaded the task of saying goodbye but, at the same time, she needed to be at peace. Hopkins was awesome. Elise was moved to a private room and she was assigned a nurse with no other duties for the night. When we entered her room, she only had the breathing tube and an IV. The nurse helped AJ get situated and he held her first as I sat next to him; I was afraid to hold her. Afraid of my emotions and afraid of how her little body would feel in my arms...that I may not be able to let her go. We talked to her and prayed for her and snuggled with her and tried to commit every moment to memory. We all held her for a long time and gave her so much love. The nurse took a picture of each of us with her. At first, the idea seemed wrong, but we felt we didn't want to leave this most important of nights uncaptured. We still haven't looked at those pictures, but I'm glad we took them.

About 4am my parents arrived from Indiana. My father had not yet met Elise and they spent some quality time together. My father always has his emotions in check and is very laid back about things; it was hard for me to see him where neither of those were true. My mom held Elise and sang to her. Uncle Dave and Aunt Shey arrived soon after and were able to say their goodbyes and give her a ton of love, as well. At 7am, we felt everyone had been able to love her and hold her and say goodbye and we didn't want to continue to prolong her life for our selfish purposes.

The nurse handed my daughter to me for the last time.

I sat in a rocking chair on a pillow. On my lap was our boppy pillow and on top of that, Elise. AJ was in a chair next to me leaning toward her with his arms encircling her. The physician came and turned off the ventilator and removed the breathing tube. We just looked at her beautiful face and felt so much love for her and sadness at the same time. She was the perfect size in my arms, warm and soft, and she was our baby, only 4 days old.

And then she was gone.

AJ new the moment her heart stopped beating. We continued to hold her for a while, kissed and hugged her, and cried with our families. It was heartbreaking for us but not for her...we knew she was now free, not bound to her body, in God's home.

While the nurses gave her a bath, took hand and footprints for us, and made a hand mold, we went for a walk. Bright sun streamed into the hallway and we hugged. We felt that we just did the most difficult thing we've ever had to do and now could begin the process of healing, of moving forward. We tried to find small blessings to hold on to in the midst of this difficult experience and we always maintained that she changed our lives, and many others, forever.

Over the next hour, our family went home and Uncle Dave and Aunt Shey waited to take us home. We gathered all of our things and the NICU team assembled a beautiful memory box. Leaving the hospital and Elise behind was so much more difficult than I had anticipated. AJ and I stood in her room at her cribside and cried. I couldn't believe how much I missed her already. I put my hands on either side of her little body swaddled in a hospital blanket and kissed her. I truly could not imagine ever leaving. This wasn't how it was supposed to be...at all. This little baby that we already loved so much, that was all we had thought about for so many months, she was supposed to be our daughter for the rest of our days and we were ready to be her parents.

But we knew she wasn't there. She was already finished with that body. She would be with us in whatever we did from then on, our angel. We kissed her forehead one last time and walked straight out into a gorgeous fall morning.