My name is Ellen McIlhenny and I’m starting this blog to chronicle the process I go through to write a book about my family’s life journey with my 21-year old son Ben. This should give me about ten years of material, because I expect it will take that long to complete the book. However, if by chance my frequent bouts of “writer’s block” start to diminish and I do finish it sometime in the next year, I plan to continue writing about (hopefully) helpful hints on navigating “the system”; that is, if there is anyone out there listening by then. Ben was born with a rare chromosomal disorder called trisomy9p t(9:21). Simply put; there is an extra piece of Ben’s number nine chromosome located on his number twenty-one chromosome. It’s so rare that it doesn’t even have one of those fancy syndrome names. It left Ben with an intellectual disability rated in the moderate range. In addition cerebral palsy has put physical limitations on Ben that can sometimes be quite frustrating. He is non-verbal with the exception of a few words, and to my delight, “Mama” happens to be his most used. When Ben was born internet access was not commonplace as it is today and what little information that was available came in the form of just a few case studies provided to us from the medical professionals. We were certainly in uncharted territory. Input from other parents on what to expect was non-existent. Today we are blessed with a blogosphere of parents and caregivers who are willing and able to help young parents through the initial shock when they realize that their child will forever be different from his or her peers; not to mention the additional medical care involved with these very special children. It is not my intent with this book to offer any great expertise on how to deal with this unique situation, but it is my hope that I can help some to understand that those many thoughts and feelings which accompany this kind of news are normal. Ben is a blessing to our family. His forever innocence and unconditional love have given me so much more than I will ever be able to return. Each morning when I enter his room to wake him, I bend down and whisper in his ear, “thank you God, for Benny”. His eyes open wide and he greets me with a hug and a “Mama”, as if he hasn’t seen me in years. Who could ask for more? Note: This blog is a chronological account. If our story interests you; please take a look at the older posts. It all starts on Ben’s very first day.