There isn’t an empty wall in our home. The hallway is covered on both sides with photographs of family. Our mantle, bookshelves, and piano are littered with frames (none coordinating), showing our family’s transformation from a young couple, to a family of three, and finally a family of four. Liam’s personality shines through 6 years of pictures. It was apparent even in his first snapshots that he would be a character: pursing his lips and laughing as a baby, posing beside LEGO creations and racing through sprinklers when a bit older. When my children were babies and sleepless nights were the norm, I would pace our hallway gazing at each frame in turn, reliving the moments I had chosen to display.
But there are certain photographs that aren’t on the walls, the mantle, or the piano. There’s a small collection in their own album, tucked into the drawer of my nightstand. They’re photos I need to keep but can’t display.
When Liam was two months old, I rode in the back seat with him as we drove home from Maine, just as I had on the ride home from the hospital after he was born — now, he seemed not much bigger. My husband, Jay, and I had been working at a theater there, something we had done every summer for a decade, and this was our first year there with Liam. He had been fighting a fever on and off, and our pediatrician recommended we take him to the ER to have his blood checked for infection. Despite the drive, I knew I wanted to go home to Massachusetts, to a hospital I felt familiar with.
In the car, I snapped a picture, thinking Liam looked like a little doll. His skin was like porcelain — no redness or blotchiness so typical of infants. Now it made him seem so much more fragile. Worry was beginning to bubble in my chest.
Had these been Liam’s last moments, I would have wanted to remember them.
When we arrived at the hospital, doctors pricked his tiny heel and told us they would run some blood tests. Liam fell asleep on my husband, and they slept together on the tiny exam table. I felt proud of my little family, and a bit foolish for dragging them so far for just a fever. So I felt compelled to snap a photo of the moment. I wanted Liam to look back on these pictures and know that his father would hold him and be there for him always.
The moment after that snapshot was taken, our world was turned upside down. A new doctor arrived in the room, one from an affiliated hospital in Boston. She told us Liam’s hemoglobin — a measure of the proteins in blood that carry oxygen — was dangerously low. Any lower and his organs would begin to fail. So the Boston hospital was sending an ambulance and one of their own nurses to get us and bring our baby boy in for a blood transfusion. This was equal parts reassuring and terrifyingly serious. Jay followed us, and I rode with Liam. In the ambulance, I peppered the nurse with questions.
“What do they think is going on?’
“Are we going to be in the ICU or the regular unit?”
And the one that terrified me the most: “Who is going to see him when we get there?”
I thought I was ready for the answer. I wasn’t.
“Probably Oncology. Hematology. Infectious disease.”
The sound of the tires on the road suddenly roared in my ears, and I was sure I would faint, leaving our nurse with two to care for. A quick turn jostled me out of my panic, and I steeled myself. It wasn’t the time for tears, for “what-ifs.”
There are no photographs from the ambulance. I was panicked, self-conscious, and everything was moving so fast. Looking back, I almost wish I had taken some. Had these been Liam’s last moments, I would have wanted to remember them.
Once we arrived at the Emergency Room, the nurse wheeled my precious boy out of the ambulance and up to the PICU. In our room, the lights were dimmed, and nurses moved quickly in and out of the room. I watched helplessly as they transferred his little sleeping body to a metal crib and began his first transfusion.
Machines softly beeped around us as he lay sleeping, wires and tubes running from him to the monitors. He had never slept in a crib, only with me, and my arms ached from his absence. Wiping away tears, and with nothing else to do but wait, I picked up my phone and snapped another photo.
“Why are you taking pictures?” I heard behind me.
Jay had arrived sooner than I expected. I hadn’t wanted him to see me cataloging these moments. Could he understand? Why would I want to remember my growing fear? Why would I want to remember any of this?
“Because this is happening,” I answered, more tears welling in my eyes.
I didn’t have the energy to explain everything I was feeling, but he held me and didn’t mention it again.
I took many more photos over the course of our two-week stay in the PICU. Some were scary, like the ones that showed the bruises all over his little dimpled arms and fragile hands, blown veins caused by botched IVs. Or the photograph taken before he woke up from his bone marrow biopsy, thick bandages on his hip from repeated aspirations. Some were sad, like Liam sleeping alone in his “crib jail” or the look of grief on my brother’s face when he came to visit and held his nephew, thinking of his own two healthy sons at home. Some were hopeful, including my favorite photos of this time: Liam’s first time lifting his head. With enough blood in his body, he finally had the strength to pick up his curious head and move it around on his own. In those photographs, Jay shines with joy and laughter, and Liam’s eyebrows are lifted in pure “I can’t believe I’m doing it” shock. Some of the photographs — the three of us together, Jay and I smiling — even made us look almost like a normal family. Looking at those, nobody would ever know we that had ruled out cancer, several viruses, a fatal disease in which the body attacks itself, and still had no answers. And if you don’t look too closely, you can’t tell Jay’s sitting on a hospital chair and has put a warm blanket over Liam’s tubes and wires.
It would be another 6 weeks before we received a diagnosis of Diamond Blackfan Anemia, a bone marrow failure syndrome that meant Liam’s body would never produce red blood cells on its own. Even so, I’m grateful I chronicled our stay at the hospital. Each photograph I took documents my journey through worry, panic, despair, and even hope.
And hope won out. Liam is an energetic six-year-old big brother who lives an almost completely typical life, other than the daily medications to keep his marrow producing blood and bi-annual checkups with a hematologist. We’re acutely aware of each and every day we have with him, as his life expectancy is still one third that of his healthy friends.
So these photographs that I can’t display but need to keep live tucked away at my bedside. For a long time, I couldn’t look at them. I felt so much guilt for not knowing he was sick, not knowing his body was slowly suffocating. How could I not see how sick he looked? My stomach still turns when I look at those pictures, a mix of painful memories, guilt, and anxiety about the future.
But I’m glad we have them. They are a reminder of how hard we fought as a family, how close we came to tragedy, and how lucky we are now to have walls covered with pictures of our smiling, rosy-cheeked, thriving little boy.
About the author
Kate Rodger lives in Lowell, Massachusetts with her husband and two children. She spends her weeks commuting with her son to her job as a special educator, and her weekends gardening, reading, dabbling in nascent theater companies, and spending as much time as possible with her family. She lives by the quote, “Today well-lived makes every yesterday a dream of happiness and every tomorrow a vision of hope,” and finds it especially relevant as she enjoys each day she has with her babies.