Hours later thegeneticist came to his mom and dad to tell them what Cornelia deLange Syndrome is and what they should expect from this baby. He would be small and grow slowly. He would have mental retardation and developmental delay. He had severe arm deformities that could not be fixed. He would have visual , speech and hearing impairments. He would have feeding problems and stomach difficulties. He may never learn to eat, smile, laugh, speak, walk, or even know his own mother. A long life was not guarenteed and it was possible that he wouldn't live past early childhood.

As you can imagine his mom and dad listened in stunned silence feeling as if their world had just been shattered. They held no joy in their hearts for this baby who was so severely disabled , and hoped that his and their suffering would end quickly. Little did they know then that this baby who had shattered their world would soon put it back together again, not in the same way it was before his birth, but in a new and better way. Their lives were about to become stronger, richer and more fulfilling because of this new baby.

Despite their fears and overwhelming grief they took this baby home to meet the rest of the family. Sisters Rachel and Grace, Nana and Pop Pop, Grandma and Grandpa, and lots of aunts , uncles and cousins. His whole family was sad and scared but all fell instantly in love with this tiny little boy. With that love the tears and fears started to diminish. That love opened their eyes and hearts to the possibilities that their special challenges would bring.

So began the start of a new life for this family. Days in those first two years were often stressful as the mom and dad struggled with their grief and the medical difficulties that the boy faced. Eventually though, the grief was replaced by joy as this boy with a strong will made his way into their hearts.