November 24, 2009
It was just a regular stop sign, a red octagon with bold white letters – STOP. I’d probably seen thousands just like it in my twenty-nine years. But this one was memorable. In fact, it’s my clearest memory of that day. It was so much more than a traffic command. It represented the end of more than a road. It represented the end of the life I thought I was leading. It represented the end of the life of the daughter to whom, I thought, I had given birth. The road beyond that point would be unfamiliar, twisting, and scary. A road I didn’t want to travel. So, I sat at the stop sign.
The stop sign was at the end of the hospital driveway. The hospital where we had just heard the news that something was not right with our beautiful, smiling baby. How could anyone think that my pink and white, sleeps through the night baby was anything less than perfect? I had stenciled forty-four peach colored bears around the walls of her room. Each held a yellow flower. Peach and white gingham decorated her crib. I had read every book. I had drunk my milk. I had done everything right. What did I miss?
They said developmental delays, “See a pediatric neurologist.” I had never heard of a pediatric neurologist. He said, “Let’s do some tests.” There was no diagnosis, but he said, “I believe your daughter will not develop cognitively beyond the age of seven. Let’s do more tests.” A year later came the diagnosis – Leber’s Congenital Amaurosis. Can you repeat that?
I did the research. That’s not my baby. My baby can see. My baby has healthy kidneys. What do you mean, she’s ‘atypical’? Please be wrong. They weren’t.
In hindsight I know that even though I was hearing things I did not want to hear, I had been the first one to know that there was something wrong. I had read every book. I knew that her development was not progressing correctly. I just wanted someone to tell me that I was wrong. Me, the type A, perfectionist, know-it-all wanted more that anything else in the world to be wrong. I just wanted everyone to be wrong. We weren’t.
Because I had picked up on a problem and started asking questions before anyone else, Lauren was in therapy and receiving care very early. Yet, I treasure those first four untainted months. Months when I was blissfully ignorant of the way her life would unfold. Months when I simply enjoyed this new life that was enriching my own. Months of joy, before a stop sign would represent the end of our lives as I had planned, dreamed, and expected them to be.