My name is Caroline, and I am a single mother. My firstborn, Elizabeth (right), died very suddenly of MRSA pneumonia 16 days after her 2nd birthday. I was 8 months pregnant at the time with her little sister, Cecilia (bottom left). By the time Cecilia was 10 months old, NIH scientists had diagnosed her with a very rare genetic disease called Senior Loken Syndrome, which causes both blindness and kidney failure. Simultaneously, NIH confirmed that Lizzy’s death was unrelated to Cecilia’s condition. Cecilia was born blind from a disorder called Leber’s Congenital Amaurosis. Currently, Cecilia has no symptoms of kidney disease, but it will likely manifest by adolescence, and she may need a kidney transplant to survive.
I began this blog four days before the birth of Cecilia in an attempt to just have a location to dump my grief. In the past year, it has served as both a therapy blog and an ongoing chronicle of our story. Now, I hope it can become a resource for other parents who have lost their children or for anyone who is experiencing the isolation and devastation of grief, in whatever form it has taken. I also hope it can be a way for family and friends to remain updated about Cece’s condition.
But, mostly, I hope that this blog will serve as a memorial for Lizzy, who is with me and Cece in everything that we do. I hope that it can serve as a way for Lizzy to remain present in our lives, even though she is no longer physically present on this earth. And I hope it can be a place where family, friends, and strangers alike can remember, honor, and learn from her most precious life.