The Girl Who Lived
I meant to write this much sooner because you inspired me from the moment I laid eyes on you. I was in the delivery room when you were born, along with the medical team. You had a rare kidney disease and suspected underdeveloped lungs and you weren’t expected to live for more than a few hours. It was my job, as a NILMDTS photographer, to capture the moments of your life with my camera. I knew these could be the only photos your parents would have of you and I felt the crushing weight of that responsibility.
The emotional atmosphere in the room was charged with anticipation, hope, fear and uncertainty. I was in the back of the OR watching as upward of 20 doctors and nurses in scrubs worked skillfully and compassionately and before I knew it there you were. I caught the moment when a team of doctors so adeptly inserted a breathing tube, many hands moving so fast, as you opened one inquisitive eye and looked up to see who was poking at you. Such a feisty little thing. Later that day I showed that photo on the back of the camera to your dad and remarked “she’s got game”. It really surprised me that you looked so strong, not sick and fragile as I was expecting.
I stayed with your father and proceeded to the NICU where you were tended to by medical personnel and prayed for by the hospital chaplain. I met your grandparents and aunts and uncles. Such a strong loving family you were born into. The hope at the time was that you would live for a few days but I knew that I would probably never see you again. A week or so later, another NILMDTS volunteer said she heard you were alive. I started following your progress online and began to feel a tentative sense of hope. I watched your life unfold as you grew and hit milestones.
You were The Miracle Baby.
When you were ten months old, I arranged to meet you again so I could hear your whole story and take updated photos. These photos show you with your huge blue eyes, cheeks that begged for kisses, and an easy smile that would melt a heart of stone, in no small part because you have wonderful parents.
They graciously invited me to your home and told me how everyday with you was a gift. You made them laugh and you made them stronger. You were so laid back and happy, despite the fact that your days were filled with 12 hours of dialysis, medications, blood pressure checks and frequent visits to the hospital. They showed me a picture of you two days after your kidney was removed and you looked like nothing ever happened. You were only two weeks old.
They protected you, cared for you and loved you with all of their being, and when you were five weeks old, they held you for the first time without all the tubes and wires that were helping to sustain you. While most parents celebrate first steps and first words, they celebrated every little milestone–a successful procedure and every month you lived. Their gratitude, strength and their love for you were palpable, and because of you, they were grateful for every single day.
Yesterday, I found out you left this world. I don’t know the details but the news broke my heart. I pulled up the file of the things I started to write months ago and I thought I would have to change the title. But as I gazed at the photos and listened to the recording of the stories, I realized the title was spot on.
In the short time you were on this earth, you created bonds between people who otherwise never would have met. You strengthened your parents’ love for one another and your extended family. You made doctors and nurses a little bit smarter. People came together to support each other. You taught us how to celebrate life everyday and you reminded us in this crazy world of uncertainty to give thanks for the small things.
If that isn’t living, then I don’t know what is. Thank you for gracing us with your presence and for that unforgettable smile. You are etched in my memory and I am honored to have known you.
Rest peacefully Julia.
Until we meet again…