I belong to a support group of parents whose children have craniosynostosis. Most of the parents post with glee, "We are on the other side!" after their child has survived surgery to fix cranio. I understand the joy and relief of knowing that your child has made it through a major surgery, but I guess I wasn't fully prepared for what "the other side" truly means. To me the other side meant Oliver would be free from his birth defect, have a normal, round head, and I would only have to think about craniosynostosis once a year at his check ups. I have realized over the past four months that cranio is treatable, but not curable. Oliver's skull is like the Earth's crust: constantly changing. Ridges develop and then blend in while small bumps appear and recede. One day his skull will look round and another day I will be worried about elongation. I constantly analyze his head. I keep thinking about the day my doctor finally mentioned Oliver could have craniosynostosis last November. Oliver, Pearl and I walked to the park, and I called Glenn and my mom crying. I watched Oliver playing with other children and noticed for the first time how unusual he looked. In one way I think I was lucky. For four years I looked at Oliver and saw nothing but perfection. Had he been diagnosed at birth, I may have never known how that feels.
It hasn't all been sunshine and roses with Oliver accepting his head. His incision got infected and we had to shave his head. People are now able to see his bumps and ridges and scar more easily and ask questions (which I welcome). Oliver, on the other hand, is sick of talking about his surgery. He doesn't even want to throw lightning bolts from his scar anymore. He wanted to know why we didn't ask Dr. Fearon to make his incision wavy so he could spray water at people instead. I made up a story about choppy water and we are cool again.
Because Oliver is small and has an different head shape, we worry about bullying when he gets older. Glenn and I were both small kids and dealt with occasional bullying. Oliver has been interested in martial arts so we signed him up for a Brazilian Jiu Jitsu class. The great thing about BJJ is that size does not matter. A smaller opponent can take down a larger based on skill alone. Oliver loved his first class!
We found out that Oliver can fall gracefully:
And he knows how to avoid a pile-up. Oliver is the joyful child in white near the end of the line.
So, that's where we stand with craniosynostosis. I'll be back to post about farm life again soon! Meanwhile, Oliver will probably be hiding under his favorite hat, and Pearl with either be eating or sleeping or doing both at the same time.