How did you start doing that? This is one of the most common questions I am asked when I tell people about the work I do with Now I Lay Me Down to Sleep. Many assume I have lost a child.
Really what brought me to NILMDTS was a matter of simple timing and chance.
About 6 years ago I went to a photography workshop with my best friend. We were there to learn more about how to photograph children and families. In the back of the hall was a table with information on an organization called Now I Lay Me Down to Sleep. We chatted with the volunteer who was there talking about a training they were hosting the following day. As soon as he began telling us about the work they did I knew that there was no way I could ever be a volunteer with them.
You see, Now I Lay Me Down to Sleep is an organization of professional photographers committed to providing portraits of babies who will never go home.
Babies who receive a terminal diagnosis while still safe and warm in their mother’s belly, babies who are born too early or still.
I am not known for my thick skin. I am actually fairly quick to cry, I wear my feelings on my sleeve.
I could not see in myself the ability to be in the presence of such sadness.
My friend really wanted to attend the training and I agreed to go along. As I sat in the room I felt more and more drawn to what they were about. I was preparing to move to Arkansas and I looked and saw that there were only a couple of photographers active with NILMDTS in Little Rock.
When I moved to I decided that I at least wanted to find out more and see if it was something I could do.
I remember my first session clearly. I was nervous. It was hard, it was sad, I cried…but I did it. I was anxious when I got back to my desk to see the images. To see if I had captured images that would help this family honor and remember their little boy.
And there they were on my screen, beautiful images of a baby boy I watched his parents cradle and grieve. Six years later I have captured images for almost 150 families. Each room I enter is filled a family’s story. I have met some truly remarkable people.
When the session is over and the pictures delivered I only occasionally hear from the families I have met. I am a part of the worst day they have ever had. But through my time in those hospital rooms I have formed connections with some amazing people, some of whom I am now lucky enough to call friends.
This Saturday marked one year since I was allowed to be a part of the short lives of two remarkable boys. In celebration of their birthday I asked their mom and dad to share their story not just of the their experience with NILMDTS
but of their boys, their loss and love.
I met Jessica the way I meet many of the moms who need our services, through a short, sad email. She was carrying two very special boys. They would not live long after they were born and she wanted to know more about Now I Lay Me Down to Sleep.
Throughout her pregnancy we would text and email. Check in.
It wasn’t until March 21st, 2014 that we would meet in person.
When I arrived their room was full of family, fear, sadness and anticipation.
Jessica was in bed and she was rubbing her belly as she sat, waiting.
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In August of 2013 we found out we were expecting our 4th baby. We were all so excited! Our three boys couldn’t wait to have a new brother or sister. The pregnancy was just as my others had been, the only difference really was that I was showing earlier.
I scheduled my routine ultrasound for the Monday before Thanksgiving so we could announce the gender over the holiday. But only a couple days after a routine appointment things became very un-routine. On November 5th after experiencing a loss of fluid, we went to the ER immediately. They confirmed my water had broken and told me I was going to lose the baby. I was in complete shock. A tech came in and did an ultrasound, I asked if there was still a heartbeat and she said yes; I felt a glimmer of hope. It was then we found out that we were expecting a boy, our 4th! I was admitted overnight and given fluids. I continued to bleed and lose fluid throughout the night. I didn’t sleep at all; instead I prayed all night that a miracle would save our tiny baby. The following morning, tired and nervous, I had a second ultrasound. The tech called in the radiologist to “check something out.” The room was quiet and they kept the screen turned where I could not see it. We returned to my room and a few minutes later the doctor came in. I expected him to tell me that there was no heartbeat, that I had lost the baby; instead the first thing out of his mouth was “do you know what conjoined twins are?”
He said, “That’s what’s going on, you’re carrying conjoined twins and your body is reacting to something being wrong”. There was a heartbeat and my fluid levels had dropped just a little more from the night before. He said I should go see my OB and have them refer me to a specialist. Our appointment at UAMS couldn’t come quickly enough. After a lengthy ultrasound the doctor said that my fluid levels were low but not dangerous and my sack may have closed itself. She explained to us the babies were conjoined at the chest and as far as she could tell they shared a heart and possibly a liver and intestines. Through later appointments we learned the boys shared a very complicated heart. They could not be separated. They would not survive long outside the womb. At around 18 weeks a friend of mine told me about an organization that would come to the hospital and take pictures when an infant was still born or not expected to live long after birth. I had never heard of this but we were in love with the idea from the minute we heard about Now I Lay Me Down To Sleep.
I went to their website and found a volunteer in the Little Rock area. I emailed Lizzy Yates and got an immediate response from her even though she was out of state at her grandfather’s funeral. Through the course of the pregnancy I spoke to Lizzy on the phone, through text and email. She was wonderful at keeping in touch. She explained to me that she had photographed another set of conjoined twins who passed shortly after birth. She was very sympathetic to our situation and said if we would like her to, she could take pictures in the delivery room as well. I wanted as many images as I could get.
During one appointment Dr Wendel asked if we had heard of NILMDTS, we told him we had and I had. He had wonderful things to say about Lizzy and her ability to move through the operating room unnoticed.
We had ultrasounds at almost every appointment so that we could see our boys. They were beautiful, but it was heartbreaking to see them thriving in my body and know we wouldn’t get to bring them home. We cherished the time we got to see them on the screen and the images we took home.
On the drive home from one of our many appointments we decided it was time to name our babies. Being our fourth and fifth boys we thought we would have a difficult time agreeing on names. Surprisingly they came to us very easily. I had been thinking I wanted to use my maiden name which is Sanders, so from that we got Anders. I asked Scott what names he was thinking, after a few he said he has always loved the name Brodie. Some of the names we had tossed around when we first found out we were expecting were Dixon and Sullivan, so that fast the names came to us: Anders Dixon and Brodie Sullivan. I then searched the meaning of the names just out of curiosity and was amazed! Anders means strong and Brodie means brother; “Strong brothers”, are you kidding me? My heart swelled; there was no doubt in my mind about names we had decided on but once I read the meaning I knew it was much bigger. It reminded me of a quote I had once heard “Coincidences are Gods way of being anonymous”.
At 36 weeks on a Thursday afternoon I had a routine appointment. Since we live 2 hours from the hospital and it was a late term appointment, we packed a suitcase just in case. I was dilating and having contractions, Dr Wendel suggested we stay in town that night. I called Lizzy to let her know that I could be in labor and going to the hospital any time. She said she would be available and for me to call her at any hour through the night.
March 21, 2014
Around 4am the contractions were stronger and we headed to the hospital. We called all of our family, and texted Lizzy, and told them to come right away. When she arrived she introduced herself, she said she had an appointment at 11 that she needed to go to if possible. We assumed everything would be over by then and all the images we wanted would have been captured.
My family started to arrive and Lizzy quietly disappeared into the room. I wouldn’t know it until she later sent me the disc of pictures but she captured some pictures of me and my family before I left for the OR. Around 9am the nurse was ready to wheel me back. Scott and I were a nervous wreck. I wanted to cry but tried to stay strong until my boys left the room. But when my mom hugged me, there was no holding the tears back.
Scott couldn’t come to the OR until I had my spinal; I needed him. He is my rock and I felt like I was going to have a nervous breakdown lying on that table without him there. I have never felt fear like I did in that hour. I prayed that Anders and Brodie would be born breathing. I prayed that although I couldn’t hold them right away that their daddy would hold them while they were alive. I prayed they would live long enough to meet their brothers, and the rest of their family. I prayed for strength for my husband who seemed so calm but I knew was dying inside. I caught a glimpse of Lizzy in the corner but never saw her after that. Throughout everything I heard lots of clicks so I know that she was there but she drifted so gracefully around the room capturing what would be the most meaningful possessions I will ever own. Dr Wendel said “daddy do you want to stand up and see your boys”. I watched him stand and look over the drape, with the mask and hat on all I could see was Scott’s eyes but I could see he was terrified. I focused on his face praying silently that our boys were breathing.
They were born at 10:06 am. I heard one of our boys cry, later watching the video I could see that it was Brodie. Anders was on the left, Brodie on the right. Dr Wendel said they were holding eachother’s arm when he and Dr Sandlin pulled them out. They weighed 10.6. How amazing that their weight and time of birth was the same. 10.6, 10:06. Those numbers are significant to us. I feel they have a deep meaning and one day the Lord will let it all fall into place; another one of those “coincidences”.
The boys were swaddled and immediately brought to Scott. I rubbed their tiny hands and Scott and I talked about how beautiful they were and who they looked like. I wanted to get off that table and hold my boys more than anything in the world but seeing Scott cradle them was the second best thing.
We had decided we wanted to have our family in the recovery room so they could meet Anders and Brodie. We wanted our sons Jaxon 9, Tucker 7, and Connor 4 to be the first to see them. After a lot of discussion we decided that the older boys should know they were conjoined, Connor did not know. He never asked to hold just one, it was like he knew they were supposed to be swaddled together. The boys loved on Anders and Brodie. Each one held them and kissed them. Connor brushed their hair and tickled them. Those are memories we will never forget. Seeing our older boys hold and kiss the two sons we were about to lose, will never fade from memory.
By this time it was after 11 am, Lizzy was going to miss her appointment. When I mentioned to her she smiled so sweetly and just said “I’m not leaving you yet”. I can’t even explain how that made me feel. She cared about her job, her volunteer work with NILMDTS and about us, that was very obvious.
March 22, 2013
The morphine kept me knocked out most of the night but when I woke the next morning my heart broke all over again. I know Scott hadn’t slept at all that night. I felt guilty for getting some sleep while he grieved alone. We were dying inside. We couldn’t call the nurses to bring our babies to us like most parents who just delivered. I wasn’t going to breastfeed my newborns or change their first poopie diaper. I wasn’t going to get to dress them in their going home outfits. It was a very long sad day. We had asked for no visitors that day, we just needed time alone. We had already been away from our older boys for 2 nights; longer than I had ever been away from them before. We had 2 more nights before we could go home. I was ready to be with my boys again. The next day my pain was a little better so fewer pain meds meant I slept less and cried more; Scott and I both. Although we had had 4 months to accept the fact that we would lose our babies, that they wouldn’t come home with us, this time was no less painful. That afternoon Lizzy sent me a text saying she had just emailed me some images. I immediately checked my email to find she had sent us 5 separate emails with nearly 40 images! I couldn’t believe she had found the time to edit them already. They were beautiful. The most heartbreakingly beautiful photos I had ever seen.
March 24, 2013
We woke up early and drove back to the hospital. It had been arranged that we would transport our boys to the cemetery. They were in a beautiful white box tied closed with green ribbon. We drove straight to the cemetery which was 2.5 hours from the hospital. It was a small private ceremony. When we arrived we opened the box to place our boys in the Moses basket my sister had bought for them. I couldn’t stand the thought of burying them in a casket. I wanted it to be pretty, comfortable and to look like what they would lay in had they came home with us. When I saw them all the strength and composure that I had disappeared.
The only regret I have to this day was not taking them out of that box and holding them the entire way to the cemetery. I just hadn’t thought I could do it. But now standing over them I don’t know how I didn’t. Around them in the basket we placed all the toys our boys had picked out to bury with them. We bought two of each: one to have at home as a keepsake and one to bury with them. We had purchased white outfits for them to be buried in. We had a pretty teal blanket with whales on it to cover them in. We had made a dream catcher to hang above their heads in the Moses basket. They wore the bracelets I had made them. They looked so peaceful and sweet with all the treasures we had handmade or personally picked for them to be laid to rest with. Scott and his brother and my brothers placed the Moses basket inside a beautiful cedar chest my mom and stepdad had hand made for them. About a month earlier Scott and I had added a cross to the top and the hinges and a latch. It was a difficult thing to do but we wanted things a certain way for our Angels and we knew we needed to be the ones to do it.
Our brothers carried our babies across the cemetery and placed the chest on top of a table our family had set up. It was covered in a quilt my granny had made. They set up the pictures we had framed and brought. There were 2 Beautiful potted orchids on either side of the chest. There were wreaths, sprays, and flowers our family had made and brought. There were 2 chairs sitting in front of the table with 2 bundles of the March birth flower, the daffodil, lying in each chair. It was beautiful. Are funerals supposed to be beautiful, maybe not but our babies’ funeral was. The ceremony was short and sweet. Heart wrenching and perfect all in one. It was the second most difficult day of my life.
April 21, 2014
One month after we met and lost our Angels I received another email from Lizzy with all of our images. We were overwhelmed. I had no idea she had taken so many photos that day. I can’t even imagine the amount of time and work she must have spent on these images. Receiving them on Anders’ and Brodie’s 1 month birthday was so very special to us.
We have Anders’ and Brodie’s pictures in every room in our home. We talk about them every day and pray for them every day. They are very much a part of our everyday life. The images we received through NILMDTS are irreplaceable. They helped to mend our hearts and keep our memories alive. We are truly grateful and indebted to this amazing woman and this organization.
ASK YOURSELF IF YOU ARE WILLING TO TRY AND GIVE THIS GIFT
I was lucky enough to spend a few hours with this family and their five boys. They were washed and wrapped, loved, kissed, held and rocked.
They passed from person to person who swayed from side to side as they spoke to them and loved on them.
Since that day I have gotten to see Jessica share her boys through the images I took.
I have seen them on Facebook, and in the frames in their home. I have seen her get to talk about them and remember them with her friends and family.
I know now why I am able to do this.
Jessica never got to see her boys with their eyes open. But she has the picture I took. That moment when Brodie saw the world.
The work of Now I Lay Me Down to Sleep is hard, and it is sad. I capture the ‘firsts’, the ‘lasts’ and the ‘onlys.’
It is the hardest and the best thing that I do.
NILMDTS is in need of photographers here in Arkansas and nationwide who are willing
to give this gift to families in their communities.
If you are a photographer or you know of someone, here is what I would say:
I have cried but I have also smiled. We are not asked to capture images of death.
The images we capture are of strength and love and family.
I have been witness to stunning loss and staggering strength and I am grateful.
How Do You Become a Volunteer?