Sharing Our Story

This week Jeff and I took part in a parent panel at a perinatal loss seminar for nurses in the Chicago area who work in Labor and Delivery and Neonatal Intensive Care Units. We were one of four families who agreed to share their stories. Two of the families had unexpected and unexplained stillbirths, and the other family believed they had a healthy pregnancy but found out within days following birth that their daughter would not survive for very long. As the only couple that had any warning and time to prepare for our baby's death, it was very odd to note the similarities and differences in our experiences. I am very grateful that we had a period of time to get ready for Leah's birth. As hard as it was to continue our pregnancy knowing that the outcome would be terrible, it is clear to me that the time we had to process our loss benefited us (and of course, benefited Leah, which is most important). We had time to make a birth plan, find a photographer, order an outfit, make blankets, and make the outlines of a funeral plan. We were able to have our family and friends surrounding us when the time arrived to deliver.

Hearing the stories of the other families was difficult. The hardest thing for me was seeing how burdened by grief they still were, when all of them had losses that were farther away than our loss of Leah. Honestly, half of what gets me through each day is the thought that someday things might get better. Seeing other parents in a place that doesn't appear to be much better than where I am right now two, three, or five years down the road was really discouraging. I came home from this event emotionally and physically drained. Based on what I saw the future looks grim. I struggled to do anything for the rest of the afternoon, and ended up settling on making a casserole for the freezer and doing some quilting because I just didn't have the energy for school work. I am thankful that we had a chance to share our experience so that hopefully other couples going through a perinatal loss will receive compassionate care.

I have previously shared how much having beautiful pictures of Leah has meant to us as we grieve. We have an almost completed scrapbook, a regular album, and pictures on our walls. Having those pictures has been a great comfort and a wonderful way to share our experience with our friends and family. One of the things that was very important to me yesterday was to emphasize the importance of pictures to our grief journey, and share with the nurses the mission of Now I Lay Me Down To Sleep to provide grieving parents with professional photographs free of charge. I had contacted our photographer, Deanna, and she sent me NILMDTS brochures to take with me, and I also brought a few of our photos. I was amazed that many of the nurses had never heard of NILMDTS, and was pleased to pass out almost all of the brochures and show off our photos of Leah so they could see the quality of the NILMDTS photographer's work. It was really nice to be able to share this resource with the nurses, and I hope that they will spread the word to other nurses and grieving parents.

Now I Lay Me Down to Sleep

www.nowilaymedowntosleep.org

I cannot say enough good things about this organization. It coordinates families experiencing an infant loss with professional photographers who volunteer their time and considerable talent to memorialize the baby’s life. The photographers also spend a significant amount of time cleaning up the pictures with Photoshop, and put them on a DVD. They do not charge anything for their services or for the resulting pictures.

I worked with three photographers from Now I Lay Me Down to Sleep. David E. Hails worked with me prior to Leah’s birth answering countless questions and coordinating our session. Deanna Mandarino was the lead photographer on our session. Joseph Pizzo, who was in training at the time, also photographed us.

Deanna and Joe were amazing. They sat at the hospital for more than half the day waiting for me to deliver. The nurses called them to come in around 6:30 am, when it was decided that I could be delivering anytime. When the doctor was delayed and my delivery was pushed back until 2:00 pm, they waited. They took pictures of us prior to delivery, and, at our request, remained in the room during the delivery so that they could take pictures as soon as Leah was born. Both of them made themselves so inconspicuous that I didn’t even remember they were there. They took amazing pictures capturing the moment when I first saw Leah, for which I will be forever grateful.

After Leah’s birth they stayed to photograph her bath and printing. We had pictures taken with all of the family members who came to the hospital, and of course with Jeff and me. They were so patient with us, taking picture after picture with Leah in all of her different blankets, and with many different people. In the end, both of them gave up their entire day to give us the precious gift of beautiful pictures of our daughter.

Deanna went the extra mile for us, providing us with pictures to use at the funeral within days of our session. Even though she must have been very behind in her regular work from spending the entire day at the hospital, she chose and digitally cleaned up four photos for us. Having photos of Leah to share at her service meant a great deal to us, and it gave our friends the opportunity to see the beautiful little girl they came to mourn with us.

Now I Lay Me Down to Sleep has photographers nationwide. Their website also provides resources for grieving families, including links to other helpful organizations, forums to answer important questions, and suggested reading material.