About Vanessa
First things first: The video to the right is snips of Vanessa's life with her family, and is set to her daddy's favorite song for her. It has a tendency to create tears, so don't say you weren't warned!
Beyond inspiring us to help children with similar needs, Vanessa's two short years on earth left lasting meaning for many who knew her.
Unable to see or hear very well, and never able to crawl, walk or talk... still, in her own way, she was a teacher. She showed us that even the smallest things in life, things we might otherwise ignore, can bring so much joy. The subtle squeak of her car seat that made her laugh, a vanilla pudding sugar rush, or a quiet night on the couch with daddy listening to CD's on "shuffle," were the kind of simple things that meant the world to her. (Click here to share a laugh with Ness!)
That said, Ness also had her struggles in this world. With the days of laughter, there were days of frustration and tears. Emotion seemed to be the only form of expression that she knew... and like the joy, the expressions of pain came on just as easily, even mysteriously.
Her struggles began at birth. After a normal gestation period, some unknown cause had her heartrate dropping repeatedly during labor, leaving her body fighting for oxygen. There was a slight delay in making the decision to do an emergency c-section, but this small period of time was enough to cause bleeding and significant tissue damage in the left side of her brain.
Nessie spent 18 days in the hospital recovering from her difficult birth. Despite this rough beginning, she was initially a very alert baby, who seemed to have no problems. After a few months, though, it became apparent that her brain wasn't developing normally, her head size was small, and she was showing delay in all areas of development. She was diagnosed with cerebral palsy, microcephaly, and vision and hearing impairment. It was clear then that she wouldn't have a "normal" life, but only time would tell the outcome.
The biggest surprise was her death, because, despite her development issues, she was considered "healthy" in most respects. It was expected she would be handicapped, but there was no reason to believe she wouldn't live past two years. Ironically, her death occured during a time of good developmental progress. One example we remember well was when she fed herself cake at her 2nd birthday party. This was the first time she was able to grab food and bring it to her mouth...a milestone that brought the family hope that she would lead a productive life. And yet, 10 days later she passed away in her crib overnight for no apparent reason.
In all this mystery, one thing is certain: Nessie needed help to function in this world. Special equipment to help her sit and stand, different types of therapy to keep her body functioning properly, extra visits to doctors and hospitals, hearing aids, medications, etc. All of this requiring a great deal of time, and of course money. We were lucky to have excellent programs and health insurance for Vanessa's care, and one parent who could stay at home with her. But we have met many families who struggle with the costs of raising a special needs child, and as the child matures, these needs can multiply at an alarming rate. We believe Nessie would be pleased that we aim to help those families in her name. And we thank you from the bottom of our hearts for your support in this endeavor.