John TYler's Story

John-Tyler was born on his due date, January 30, 1996. Weighing in at a healthy 7lbs.12oz, 211/2 inches. Everything seemed just right. It was so different from when J-T's older brother was born 3 1/2 weeks early, footling breech, c-section, weighing in at only 5lbs 9oz. Life would be easy, better for this baby. It was an excruciating 19 hr. labor and I expected a "cone head" after the vacuum cap extraction. A cone head was exactly what he had but he also had beautiful golden hair and perfectly arched eyebrows. Beautiful, he was. The nurse commented," he's a long guy, I'm giving him an extra inch because of the cone head", we all laughed. How many times the over past 14yrs. I have replayed every moment,every word of that birth day, especially those references to his head. Two weeks after his birth I had a nagging feeling I couldn't shake.

J-T was starting to look different to me but I couldn't explain how. I would crawl next to his cradle and look at his face illuminated by the night light and stare, something is wrong with this baby. I tried to reassure myself ; his 18 wk. ultra-sound was normal, and that vacuum cap! At his two week check, the doctor was pleased at how much weight he'd gained. I asked about his head and the doctor, chuckled and said, "in about two weeks he'll look like a different kid." Over the next two weeks, I was tormented, J-T cried all night and slept all day, his head wasn't looking better, it was looking worse,it seemed even bigger. I sat in the rocking chair, crying, I couldn't shake that feeling of impending doom. My husband thought it was post-partum depression. The morning of his 4 week well check I ran down the stairs and grabbed a medical book off the shelf, I went straight to H for Hydrocephalus. There was the description but before I could read it, I saw the illustration of a "normal" infant head and infant head with "hydrocephalus."

I clutched my heart and gasped, "oh my God, that's exactly how John-Tyler looks." I read on and it seemed hydrocephalus was not the worst condition and there seemed to be a solution, a shunt. I was relieved, my baby would get help and he would be fine. The doctor was right, two weeks later he looked like a different kid. The kid he would diagnosis with hydrocephalus and send to CHOP for his shunt placement. Reality hit when he said, 'hydrocephalus is unpredictable, lifelong and requires neurosurgery." Back to fear and life long worry but I had faith he would be fine no matter what.

During his first few years he had a few bumps in the road, a hydrocele at 4mos. that needed surgical repair and a hernia at 2 years. Both were related to his hydrocephalus. Aside from that John-Tyler was the most joyful soul, always happy, waking with smile, never a cry. He was pure sunshine. He breezed through kindergarten with unbridled enthusiasm. He was funny, wise beyond his years and charming. His blue eyes changed to green and had such a sparkle, I would tell him his eyes "shined with the lights of the angels." First grade J-T seemed 3 beats behind his classmates. He was evaluated and was diagnosed with a learning disability. The remainder of the school year was a struggle it took almost the entire year for the evaluations to be complete. He also had a medical set back in Oct.of first grade. He had appendectomy and partial shunt revision. He missed two weeks of school and continued to fall behind. He started off second grade with an IEP and that made all the difference in his school years, he went from struggling to an academic success.

From 4th grade to sixth grade he received "A's" in every subject. His sixth grade graduation was marked with great pride and celebration as he received a Principal's Award for all A's for 5th and 6th grade and a President's award for all "A"s and "advanced proficient" on the NJASK, standardized test. He was also recognized in 4th grade with a character award for exemplifying good character and treating others with kindness. For his health project in 6th grade he presented a power point presentation on hydrocephalus and bravely revealed to his classmates that someone in their class had hydrocephalus.

Middle school began with some adolescent angst. J-T would have bouts of anger and self-consciousness. He would feel sorry for himself, feel ugly because of his scars and worry about his health. Academically he continued to be successful. While other boys played soccer, baseball and football, he found he wasn't very coordinated but he was fast. He could run. He joined cross-country and received medals in the county tournaments, finishing in the top 20 out of 200. He was on the honor roll every marking period and scored "advanced proficient" in science on the NJASK. He took pride in eating right, exercising and being fit. At his 8th grade graduation he received the "Presidential Physical Fitness Award."

He started high school this past September. He entered with hesitation and anxiety as does every freshmen but he was confident and determined. He joined cross-country and was getting his body ready to try out for his real love track. John-Tyler is more of a sprinter than a distance runner. Everything seemed to be going wrong for him this first semester. He lost 10 lbs and said he was too weak to run, his grades in every subject plummeted. At his well-check the doctor found he had a rapid heartbeat and sent him for blood work. The blood work revealed a problem with his thyroid. He went through weeks of testing and is currently under the care of an endocrinologist. Tests revealed he does not have the most common thyroid disease,Graves but thyroiditis. It seems a virus affected his thyroid but the good news is the virus will run it's course and his thyroid will eventually be fully functioning. He continues to take medication for the rapid heartbeat but that too should eventually resolve. I have every confidence that he will get through this storm, stronger and more determined.

John-Tyler has taught me more during his 14 yrs. than I could ever teach him. He taught me that after a bad day or perhaps bad week the next one will be better and that no matter what life has in store for him he will be okay and so will I. He taught me that every child has a story, some more daunting than others, every child deserves to be born and loved. John-Tyler has taught me how to live!