August 31, 2018 WALK A MILE IN MY SHOES

Many people have never heard of Williams syndrome--a rare genetic disorder caused by a spontaneous deletion of  26-28 genes on chromosome 7--that occurs at the time of conception. Williams syndrome affects 1 in 10,000 people in the United States. Complications of Williams  include delayed development, cardiovascular disorders, scoliosis and many other significant health problems. People with Williams are unique in many ways but a hallmark of Williams is having personality plus.  These special people are overly friendly and affectionate to everyone. They don't understand stranger danger-- believing instead that everyone is their friend.  They have excessive empathy, anxiety, phobias, and attention issues. I have to admit that I had never heard of Williams syndrome either--that is until my brother called me about twelve years ago to tell me that his son was being tested for it. When my nephew was about three months old, doctors discovered that he had VSD--ventricular septum defect-- a 10 millimeter hole in the wall of his left ventricle. Luckily, his heart doctor recognized it as a symptom of Williams and recommended they see a geneticist. At the tender age of twelve, the poor kid has had 19 surgeries because he has scoliosis and he has been shuffled around to more doctors than most people see in a lifetime.   So why is he lucky?? He has parents who educate themselves on the subject and work hard to make sure he has every advantage in and outside of school. He has had OT, PT, speech therapy and attends school where he learns social and life skills. He has parents who will ensure that he reaches his highest potential and a family who loves him-- accepts him and will continue to care for him in the future. If you are interested in learning more about this syndrome then you should read The Boy Who Loved Too Much by Jennifer Latson. 

After reading a review of this book, I decided to read it so that I could learn more about Williams. Although I learned more than I bargained for about genetics and research-- the most important thing I learned was about the unique challenges parents faced when their child had Williams syndrome. Latson wrote this book after spending three years with Gayle D'Angelo and her twelve year old son, Eli, in their Connecticut home. Eli was diagnosed with Williams when he was young after missing several developmental milestones. His parents divorced when he was about 5 years old leaving Gayle a single parent. Between medical appointments and schools meetings, Gayle was forced to change jobs because her employer had no empathy for her situation. The challenges Gayle faced were endless too. The vigilance to keep Eli safe was constant --she never left his side unless he was at school. The worry about "inappropriate behavior" and phone calls from school were a mainstay.  Just being his advocate at school and doctors appointments--making sure he had every possible service was mind boggling. I learned so much about what it was like to be a parent of a special needs person--things  I could never know or understand unless I lived it.  Bless you all.  Seriously, I walked away from this book thinking--Never judge anyone until you have walked a mile in their shoes!! Do yourself a favor and pick up a copy of this book. It will change your life and humble you. Its only 260 pages--or a 4 mile run--worth every page.