Our oldest child is five years old. My wife’s pregnancy was normal for the first 6 months and was capped off by hiking a mountain. Then things got interesting. Her water broke at 27 weeks. For you men out there who have not had the incredible joy of becoming a father, that’s early. Really early, normal gestation for a human fetus is about 40 weeks. This unexpected event landed us in a new home in the nearest, capable hospital, 40 minutes away, for the next 54 days. I slept on the pull out chair and we got to know an incredible nursing staff whom we mutually Facebook stalk to this day :). Our son was born at 34 weeks by an induced labor. The doctors decided infection had been avoided long enough and he was a healthy weight. The NICU (Neonatal Intensive Care Unit) staff was on hand and we assumed he would be joining them for some period of time before coming home. By grace, he spent three days in the regular newborn nursery and came home with no significant health concerns.

His pediatrician expected developmental delays for the first two years as he was a bit early. Business as usual followed until we unexpectedly found out we were becoming parents again! What a great joy! As the birth of our daughter approached quickly in the Spring of 2012 our son had some interesting episodes. Right before our daughter was born the doctor order and EEG to determine if there was any seizure activity. The results confirmed that there was. Our lives abruptly changed, and we will never look back.

Our daughter was born on April 6^th, 2012, seven days after our son’s second birthday. An MRI brain scan occurred in May 2012 and revealed that our son had a brain malformation. Later that year it was diagnosed as a rare genetic disease, Isolated Lissencephaly, that is associated with Miller-Dieker Syndrome. Very simply, he has a smooth brain. A normal brain has lots of folds and creases that serve as pathways for signals to travel along so that we can function. He cannot walk or talk and suffers from patterns of multiple seizures a day. He is the joy of our lives and re-shaped our view of the world. He has brought us a different kind of normal and to an unshakable understanding of the will of God. The plans He has for our lives that exceed any self-manufactured attempt at happiness.