I have mentioned before that I volunteer for Now I Lay Me Down To Sleep. One of the rules is that we aren't supposed to blog about our work. For very obvious reasons.

And as much as I understand why we can't show you the images we take, I think it's a shame we can't just talk about it. Our experiences. Our grief. Our joy. Our work. Because talking about it teaches. And it spreads the word about the incredible organization that NILMDTS is to both families that may someday be in need and photographers who may someday decide to give of their time.

So today I am breaking the rules a bit. And ONLY because I have direct permission from the family to do so. Although I will not name names or show faces. At all. And I will only share one image. But I will tell the story.


Last Wednesday I was getting things ready to head to the park when I got a call from our area coordinator about a call down at Children's Hospital. A baby boy in the NICU not doing well. Could I take the call?


"Yes" is always my answer. I have never said "no" and pray I don't have to.

I immediately called my mom, emailed my client who's session was going to be moved back, packed up the kids, my camera and ran out the door. I dropped all three kids off at my mom's, nursed Grayson one more time and hit the road. It was 11am. No time for lunch or the Mnt Dew I desperately wanted.

I arrived at Children's and was told that the idea to take the baby up to the roof-top garden was nixed by the doctors so instead I waited a little while and then was escorted back to the little man's NICU room.

There I met his mom, who was holding him, all 4 pounds 10 ounces of him. Dad was taking a shower down the hall so I started by photographing her and her son. Just the simple moments. Her looking at him, his sweet face, his hands, his feet, etc. He was so beautiful. Perfect. He was so cute that it was easy to ignore the wires he was hooked up to. Helping him breath. Monitoring his heart. Nourishing him.

Easy to ignore but hard to see. Hard to know he was so sick. That is the moment I started praying. For him and his family. His momma.

Dad came back in and we all laughed about thetube socks his mom packed for him. Snapped a photo of the socks so they could remember the laughter that filled the room. Laughter is so important.

Shot for a while longer while dad held him before leaving to go to my already scheduled session with promises to come back right afterward in hopes we could get permission to go to the garden.

On my way to my next session I stopped at a gas station in downtown St. Louis for my soda and started laughing out loud when on the wall next to the bullet-proof glass protected cashier they sold socks. Ankle socks. So I bought a pair and stuffed them in my camera bag.

Two hours later I was on my way back to the hospital. A bit engorged and starving. Called to check on the kids and thank my mom again and again for keeping them so long. All day is hard with them.

As I stepped off the elevator and into the waiting room of the NICU I was greeted by a dozen or so family members of the sweet little man. Grandparents, Aunts, Uncles, Cousins and friends all filled the tiny space. I introduced myself as we all followed behind the team of doctors and nurses it took to get this little guy up to the roof-top garden. His bed, the machines and monitors all accompanied us also. It was quite the caravan. I photographed the whole way up.

And never stopped once we were up there.

(Except to pause and silently touch Dad's arm to get his attention. When he turned I just handed him the socks as he smiled. Humor is ok. Laughter is good.)

The garden was gorgeous. They sat together on a porch swing rocking him, singing to him, smiling with him and showing him the world. A world he had never seen before. His first moments outside.

Because of the bright sun, the time of day, the location, etc. I needed help creating good shade and didn't hesitate to boss around the doctors and nurses. I had at least 10 people at a time holding little hospital blankets up shading them from the direct sun so I could get good portraits of the baby boy with everyone in his family. If I had stopped to think about who exactly I was ordering to hold a blanket a little higher I would have shut up immediately, but at that moment all I cared about was getting good photos for this mom and dad. And truly, the photos I took of all those doctors and nurses laughing while holding those blankets show the joy of the moment.

The joy was also captured in the smiles and laughs mom and dad shared.

Not to say it wasn't sad. Because there were also tears. But when looking, later, through all of those images the overwhelming sense of joy is what resonated with me. And love. Oh my goodness the love for this baby was incredible.

Normally on a NILMDTS session we go once. I've never gone twice. But I did b/c it was what this family needed. And this family was more important than my family or anything else in that moment. (And luckily the hospital had nursing pads I could use since Grayson hadn't nursed all day!)

I left that night telling them that if they needed me, for anything, to not hesitate to call me. I gave them all my info, the family and the nurses, so I could be reached by anyone.

I got the call the next day to please come back.


Found a sitter, sped down there.

I greeted the family once again in the waiting room and headed back to his room. Where I stayed in the corner, shooting, while each person came in to say goodbye.

For the first time ever I broke down in front of the family. Mom handed me a kleenex and Dad told me it was ok. They comforted me.

You can't help but put yourself in their shoes. Imagining your mom saying goodbye to your son.

It is not easy.

But you are not there for yourself. You are there to serve that family. To capture the moments they want to remember. And it's ok to be sad. You are going to be sad. It's a child. Of course you will be sad. But just keep shooting.

After the goodbyes we walked, once again, up to the garden. This time the caravan was smaller as the family stood by the elevators and watched us pass. Steadfast in their love and support.

Mom and Dad took him to their favorite spot that overlooked the park. They read to him and sang to him. They talked to him. Hugged him. Said goodbye.

The nurses unhooked him.

The machines stopped breathing for him.

He smiled.

And died.


It was the hardest moment in my life thus far, but again, it was not about me. Not one small iota was about me and so I captured the moments to the best of my ability. Capturing moments the family wasn't there to see, moments mom and dad wanted to remember.

Because this was his life. His beautiful and amazing life that in 7 and a half short weeks changed the lives of countless others. And it needed to be documented. Recorded. Remembered.


Each NILMDTS session is different. Each baby has its own story to tell. Each family has different needs. This family wanted every moment photographed. Some don't even understand why they are allowing us to come in at the suggestion of hospital staff or family members they are so bogged down in grief and exhaustion. And that's ok. Because no family, to my knowledge, has regretted having these images later.

Is it easy? No.

Is it worth it?


The photographs we give families are the best and maybe the only photos they will have of their baby. Thi
s is a gift that is priceless. And only trained and professional photographers can give it to them in a way that is right. Professional photos not snap shots. Fully edited. And free.

Everything is completely free.

If nothing else I want to encourage all of you pro-photogs out there to consider giving of your time to Now I Lay Me Down To Sleep. I promise you, you will never regret your decision to give back in this way. It will be hard and sad and challenging. But God gave us each this gift for a reason and I believe that the reason is not just to feed our families, it is to give back too.

And for those reading this that are not photographers I just want to spread the word. Everyone knows someone who has suffered the loss of a child. The more people that know about NILMDTS the more families we can touch.


The one image I am going to share with you is this. Mom and Dad are holding their son as he is preparing to greet the Lord. And as I was shooting I was in constant prayer that God would guide my hand. When this image came into my lens I felt God so strongly I burst into tears. He was there that day.


And the quote that they used at the funeral made this photo even more important:

"Preach the gospel always and if necessary use words."

7 thoughts on “NILMDTS

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  4. I was familiar with Seamus’ story but I hadn’t yet read this entry until today. I think in retrospect after having met Tom and Sharon at the photo-shoot for Seamus; it is a good thing. Had I known the details I would have likely been overwhelmed with emotion. I so appreciate how you told this story Jodie and even more I appreciate what you all did/are doing in light of your experience. It meant so much to interact with Tom and Sharon but it means so much more having a deeper understanding of just how hard their journey has been and continues to be. Thank you for letting me/us into this sacred and deeply painful experience it’s humbling and challenging to be let in. thank you

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