Enduring Love

I first started this project, Enduring Love, when I was pregnant with my second child. I set out to make images about the complexities of motherhood; how in becoming a mother, I shed a former identity and created something new. The pregnancy was hard, but I looked forward to my second daughter’s birth with excitement and relief. I thought about holding my two girls, these two sisters, and about the lives they would have together. When my second daughter was one day old, she started periodically crying out, fists balled, body stiff. Reflux, one nurse assured us. But a second nurse identified these episodes as seizures. She was moved to the NICU where doctors tried different medicines to stop her seizures. Meanwhile, she had over twenty seizures a day. She could not breastfeed or bottle-feed. She barely opened her eyes. Genetic sequencing showed her seizures are caused by a de novo mutation, which neither my husband nor I have. It’s a sudden change—like a typo or off-key note—in her genetic makeup. This tiny alteration impacts every aspect of her life. She may never walk, and she may never talk. I don’t know how long she might live. While our lives have changed in many ways, much