Josh was born at 27 weeks. He did the "normal" preemie things while in the NICU: had a grade IV intraventricular hemorrhage (brain bleed)--and its accompanying spinal taps to relieve the pressure, retinopathy of prematurity--and its accompanying laser eye surgeries, and the like. The early days were a time of not knowing whether I'd be able to even touch Josh because of how sensitive he was to everything. But as the weeks, and then months, progressed, so did Josh.
Four months after being born, Josh was able to come home. I thought we had "made it." Sure, we had a lot of medicines, doctors' visits, home and office-visit therapies. But, we'd "made it." Josh was home. He was alive. He was doing well.
He was one year old when we got the diagnosis that he had cerebral palsy. This altered the future we thought we had with him, but it was a diagnosis we could live with. About this time, however, we also found out he needed "brain surgery" to even out the fluid in his ventricles.
It was the first time my world was shaken since he had been born.
The world I had envisioned for my son changed. My world had changed. I no longer could trust that we'd left the NICU behind us. Or that the son I thought I had was actually there. I held Josh so tight that day we got the call. I hoped that I could hold on to "him," to protect him from anything else that might ever happen.
Josh is just a few weeks away from 16. On August 6th, 2018, he had his first-ever seizure. This is remarkable in the fact that a preemie with a grade IV "brain bleed" can expect to have seizures. In the years following his birth, new doctors were surprised when we answered their question with "No, he has never had a seizure." Ever.
That day was the second time my world was shaken since he had been born. And the ground has yet to settle.
