Diane’s story

Five years ago after a trying pregnancy, my son Colin was born. He had the ten fingers and toes and the healthy weight. His temperature was a little low, but for the most part, he was doing great. But when the nurse put Colin in my arms, I instantly knew something was wrong. It was part intuition, but mostly the Lord subtly preparing me for what was to come.

Colin had problems with sucking, which meant he couldn’t eat. He also started to have seizure-like episodes. Eventually, he was transferred to a different hospital and into the neonatal unit. After a week things started to look up for him. He was able to eat, and his seizure-like episodes disappeared. But one night after Chad and I came home from visiting Colin, we watched the videos that we shot of him that day. I watched myself holding him, and I saw an expression on his face. I know it’s odd, a 6-day old baby with an expression, but I saw retardation. Again, it was as if God was over my shoulder saying, “Diane, look at him; open your eyes and your heart and accept the gift I am giving you.”

When Colin was released God put everything into motion. His pediatrician figured it worked itself out. Then when the appointment was almost over, Colin had one of the episodes. The doctor got very upset and sent Colin to a neurologist. That was the best blessing ever; for the first time I had someone agree with me that something far more serious was wrong.  Blood work after blood work, and having a pediatrician who kept saying nothing was wrong with him, we finally had a diagnosis. On November 9, 2004, at eight months of age, Colin’s neurologist diagnosed him with Smith-Magenis Syndrome.

That was almot five years ago, and the past five years certainly haven’t been the easiest but it could have been worse. If I hadn’t had the support from God, holding my hand, guiding me through the situation with Colin, I wouldn’t have had the strength to get through this. If it weren’t for the faith and love I have for the Lord, and Him for me, I wouldn’t be able to see the best qualities in Colin or the laughter…For example, how can a parent clean up after a child who just cracked an egg over the dog’s head for the sixth time and still think it’s funny?

I hope you enjoy my interview as I explain more about Colin and our wonderful life with him.