Twenty two years ago our second child was born. Outwardly beautiful and perfect, a true bundle of joy. Unknown to us at that time she was afflicted with Aicardi Syndrome. We had no clue exactly how this innocent little person would change our lives, our hopes and dreams, and shape us all into who we are today both individually and as a family. She came here not for us to teach her but for her to teach us.
Aicardi Syndrome includes malformation or complete absence of the corpus callosum and other brain deficits, retinal lesions with other eye abnormalities, scoliosis and other skeletal problems, and intractable seizures. Life expectancy is shortened with the literature (at that time) stating 3 years maximum.
Recently we celebrated Hillary’s 22nd birthday by taking her to a street fair in a neighboring town. The weather was perfect with low humidity, air temperature around 70, a light breeze and a bright sun in a deep blue sky dotted with puffy white clouds. As we wheeled her through the crowd occasionally one of the vendors leaned over to talk to her. We told them it was her birthday and she ended up with a small collection of trinkets—stickers, key tags, and a balloon. She enjoyed the extra attention and we had a nice time. When we returned home we had chocolate birthday cake and ice cream which she loved, and some gifts wrapped in brightly colored shiny paper. She enjoyed looking at the gifts but lost interest as we opened them and showed her what was inside. Sometimes she’s a funny girl! Over all she enjoyed her special day very much.
We have learned through Hillary that slowing down and enjoying the simplest of things is a good way to live, birthday cake is meant to be enjoyed without guilt, and every year survived should be celebrated for the gift that it is.