It was Super Bowl Sunday and Dear Son was dressed in his football outfit ready for the big game. At ten weeks old, he was quite the handsome fellow. Dear Son, his Dad and I were invited over to my brother's house to see the game on the big screen television. I sang in the church choir, like I did every Sunday back then, and was discussing a somewhat disturbing thing that Dear Son had been doing. His arms would shake and he had some odd positioning. One of the ladies in the choir had suggested that I call the doctor and let him know what had transpired. Dear Son had just had his two month check up at the pediatrician’s office two weeks prior and I had mentioned it to him, however he did not comment on it. We were all set to leave when it began happening again. Suddenly, it became more violent, and we rushed Dear Son to the emergency room, all dressed in his football outfit. Little did we know, but Dear Son was having a seizure, and a pretty bad one at that.
Dear Son was a full term baby born weighing 8 pounds, 12 oz. with Apgar scores of 9 and 9. Prior to his birth, I had no indication that this child would be anything less than normal. He had breathing issues in the first twenty fours hours and the doctors were called. Soon, they notified me that he had turned blue and they needed my permission to send him to another facility. He also had episodes, which they described as seizures. He remained there for a week and had many tests, including an EEG and was released. They said the EEG was normal. I took him home.
At his two week appointment, I asked the pediatrician about him. Dear Son didn’t like rattles and not only didn’t he like them, they annoyed him to no end. In addition, he did not follow any items with his eyes. I asked if this was a problem and he said that kids do things as different rates and not to be concerned.
At his two month appointment, I explained these odd movements again. The pediatrician said nothing about seizures but did mention his admission at birth. I hardly remembered the part about the seizures.
So today, we were in the ER. They treated Dear Son with Phenobarbital and told us to follow up with our pediatrician. I did that, however Dear Son continued to have problems the next day, the day after that and so on. Finally, I asked for a referral to a children’s hospital.
Dear Son was transported immediately. He spent the next three weeks at a major academic medical center. It was there that they determined he was seizing nearly twenty four hours a day. They did everything they could to stop it and started him on ACTH therapy a few days into our visit. This began my wild and unintended visit into healthcare. His entire first year was a mumbo jumbo of doctor visit after doctor visit, tons of ER visits and endless phone calls. In July of that first year, in addition to all of his other disabilities, was his vision-his Visual Evoked Potential was done and it was determined he was “cortically blind”. (He later regained his vision a few months later through an odd quirk of fate.)
There wasn’t any one issue that was difficult. Heck, it all happened so fast. The doctor visits were so fast and furious that I could hardly enjoy my new bundle of joy, that I had waited for nine months to see. One of the issues that was difficult however, was the baby book. While other new mothers were busy writing down their baby’s first smile, the first time they rolled over, their first word, their first step, I had nothing. Absolutely, stinkin’ nothing to write in that damn book. I would come home from the doctor visits reeling with new information and wondering what Dear Son’s life would be like. I would hold that little baby in my arms and kiss his beautiful head. I thought, what the heck do I have? I looked at him with those beautiful blue eyes and Dear Son looked right back at me. I thought, yes, I do have something. He is absolutely the most beautiful little boy in the world. That’s what I have. So, as the old commercial said, “Don’t hate me because I am beautiful”......Dear Son would say, “Just love me because I am”.