Knowledge Is Power

Novelist Frank Herbert wrote, “The beginning of knowledge is the discovery of something we do not understand.” Nothing could be more true for parents of a child who has just been diagnosed with a disability. I remember the day we were told that Livy was going to be a very “special” child. She was about a month old and we were in the hospital with her. Her neurologist at the time came over to us, handed us a document and asked us to read it. In short, the document said that Livy would have severe disabilities and probably only live for about 2 years. Need I describe our devastation? I think not.

From that point on, we have been on a journey to educate ourselves as much as possible about Livy’s condition. We started with the internet scouring blogs and medical sites. We read books and talked to other doctors. What we wanted was a second opinion and to find out what was causing her continuing deterioration. After our second opinion and a three month stint at another hospital, we had a partial answer as to the why. But we were still not satisfied with the what to do about it part. So we continued our research and found a third hospital only 3 hours away from us. The team of neurologists that assessed Livy had experience with other similar children. We went through a whole new round of tests. Due to their progressive nature, the doctors at Shand’s Hospital in Gainesville have now operated on Livy twice and we have seen improvements that although are small for other children, are major for her.

Olivia will be 5 on December 15th. Had we not educated ourselves as much as possible, we may have stuck with the initial doctor and sadly settled for the first diagnosis. Knowledge in conjunction with a tremendous support system is your best weapon when dealing with a life changing medical situation. As parents, we are our children’s biggest and most important advocates. Doctors may be incredibly intelligent but they do not know your kids as well as you do and tend to forget about the overall picture. Always trust the little voice whispering in your ear telling you something doesn’t sound right. If you don’t comprehend what a doctor is conveying to you, find out what it means. I believe that a lack of understanding causes fear. Fear in a dire situation causes poor judgment. I have promised Olivia as her father that as long as she fights on, so will I and will always try to be as fearless as possible.