This is an unexpected post to be in here. I didn’t think I wanted to talk about my involvement with now I Lay Me Down To Sleep. I’m so proud of the work I do for this organisation and I want people to be aware that death can happen to little people, but I also don’t want people to think I deserve to be honored because of what I do.
In January last year a friend got in touch and asked me whether I would be able to provide a session for a baby who had been diagnosed with a chronic illness which meant she didn’t have a long time to live. I couldn’t think of anything that I would rather do than provide people with photos that would last forever. This was how I met Juliana.
Juliana had underwent minor surgery just before Christmas and suffered an adverse reaction which left her in hospital for weeks. Further testing revealed she had Spinal Muscular Atrophy (SMA) type 1, a genetic disorder for which life expectancy was very short. Up until this point her parents had no idea that Juliana had anything wrong with her. When I met her she was almost five months old. The moment I saw her I wanted to sweep her into my arms and hold her. She was so beautiful.
Her parents are so in love in with her. I looked around their house and Monica told me the story of her pregnancy, all highlighted by the pregnant photos on the wall, I learned about her birth, and I embraced the love that filled the room.
I didn’t know what to expect when I said I wanted to do this shoot. I didn’t know what would happen when I turned up on their doorstep. But when I got home and I saw the photos I had taken, I was humbled. I felt it, I lived it, I breathed it, for just a moment, I was there with them, feeling their love, looking at their life, capturing these moments for them. I shed so many tears looking through their photos, so many feelings bundled into this one shoot.
After Juliana’s session I was moved to do more. I had thought for a while that I wanted to do something that gave back to the community I live in, something that could make a difference. What do you do when all you do is take photos? I mentioned to a friend that I felt I wanted to do more, and that I had heard of an organisation which took organised for photographers to go into hospitals to take photos of babies who had either just passed or were about to pass, and she told me the name of the organisation and that they were here in Frederick!
I applied, and I was accepted. So now I am proud to call myself part of the Now I Lay Me Down To Sleep organisation. I take photos for families who are suffering the most devastating loss, and I hope to give them just a small token, something to make the pain a little bit easier to bear, if not now, then in years to come. I AM proud of what I do. People ask me how I can do it and all I know is how I feel. If something like this were to happen to me, I would hope there would be someone like me there standing by, willing to help.
Juliana passed away very recently. My heart aches for her parents but I know her spirit will live on forever in the hearts of all of those who knew her and were touched by her magic.