To understand Johnathan’s life we have to start at the beginning. This is also the beginning of my life as a mother with a bigger purpose as to the meaning and understanding of what life was all about. My son had an original due date of December 25, 2012, however he was breached and didn’t have room to turn around. I had a planned c-section on December 19, 2012. At that time I suffered a loss of natural childbirth. I had spent months practicing Lamaze breathing and positions with my trainer (Mom) in preparation for hours of labor. However, Johnathan had other plans on how to enter this world. He had a mind of his own even before he left the womb.
Shortly after the hospital pediatrician examined him we learned that Johnathan might have a condition called craniosynostosis and a possible heart murmur. While the murmur dissipated the skull remained closed in the frontal metopic region of his skull. We would need to consult a pediatric neurologist to confirm this. We first traveled to Syracuse when he was a month old where the doctor pronounced this condition as a severe case. She told us that Johnathan would need open skull surgery right away. She would proceed to cut him from ear-to-ear across the top of his skull, break his skull like a jigsaw puzzle, and proceed to put the pieces back to allow growth for his brain. She gave us a 10% mortality rate and asked us to start donating blood now.
At that time, I knew enough to say it was an unacceptable operation and that I would research other less invasive procedures. It was then I found Dr. Proctor at Boston Children’s Hospital.
He is an expert in the field of pediatric neurology and a world-renowned pediatric neurosurgeon. I emailed him along with Johnathan’s scans and he asked me to come to Boston that following week. After we met, Dr. Proctor explained the endoscopic procedure and helmet therapy that would follow. When I asked what the mortality rate for this procedure was he informed me he had operated on children with brain tumors and had not lost a single patient. It was then I started breathing easier and we scheduled Johnathan’s surgery for March of 2013.
Johnathan’s surgery was a great success and he awoke on March 18, 2013 with a smile on his face.
He was released the next day and a month later he would receive a fitted helmet to wear. He wore this helmet every day continuously and like a warrior he accepted it. He would have monthly fittings and wear two different helmets until he turned 1.
It was not until he was a few months older that we noticed that Johnathan was not reaching his developmental milestones. We assumed that he would learn these things in his own time and proceeded to have an Early Intervention evaluation to address our concerns. At that time, he was found to have a delay in fine motor skills and speech. Johnathan was provided weekly therapy for both and his skills were improving. By the age of 3 he scored out of the need for OT and was soon building castles out of Legos and getting his hands on everything he could touch. He had a knack for dissembling things and putting them back together the way he saw fit.
Johnathan started attending Pre-K and started making friends. He touched the hearts of all of his teachers and therapists. He could put a smile on anyone’s face and wanted people to be happy. This is how his nickname and our affinity for yellow began and Sunshine prevailed.