Despite a healthy pregnancy, our oldest, LJ, came into the world in crisis. There was fetal distress. There was an umbilical cord tightening around his neck. There was a ‘crash’ c-section and a spinal that didn’t take, There was the searing pain of an unanaesthesied abdominal incision. There was screaming. There was a newborn boy with blue skin, a dangerously low heart rate, and no breathing. There was a doctor’s voice calling out an Apgar score of three. There was also a team of professionals that resuscitated LJ and pulled him through those first few dangerous minutes. It was not pretty, but LJ and Lee both recovered beautifully.
Nine years later MJ came into the world following a high risk pregnancy. A pregnancy can be labeled high risk for many reasons, and there were a half dozen factors for which MJ’s qualified. As the day of a scheduled C-section approached, I decided to observe the surgery rather than just standing to the side. I wanted to see MJ emerge into the world in a safe, controlled delivery. However, when it came time, Lee was struck with fear as the memories of LJ’s delivery were too much to put aside. I immediately gave up my viewing position and sat next to Lee, holding her hand and providing comfort. It was where I belonged and where I chose to be.
The delivery went very smoothly and Lee was able to smile rather than scream. The doctors called out some Apgar scores that were high enough for me to know everything was OK. The doctor handed MJ to me to take to Lee. We had a few moments together but I was soon soon directed out of the room with MJ so the pediatrician could begin his checks. I handed MJ to him and found myself an observer again as the wheels in my mind began to spin. Everything looked OK but, perhaps due to months of hearing the term high risk pregnancy, I began wondering if everything was ok. “How do I know MJ is OK? He looks ok, but maybe it’s too early to tell.” At that moment, I realized that there was no way to know if he’s ok or or not. I could know that some things were ok, but I couldn’t know about everything. The realization of that moment is imprinted on my memory forever.
Three years later, Lee’s pregnancy with SJ had a few high risk factors, but there were fewer concerns than with MJ. The level of anxiety was so much lower that, as we drove to the hospital at 6 am for the last of the c-sections, I swung by Dunkin Donuts for coffee. We laughed with the nurses who tried to make me feel guilty for having a coffee as my wife was preparing to give birth. SJ’s delivery went smoothly for all and I carried SJ to the nursery where his oldest brother was waiting. It was a great day.
As I look back, it’s the moment after MJ’s delivery, when I realized that I couldn’t know if everything would be alright, that stands out. It was both liberating and frightening. I recognized that the future held no guarantees and that I better accept it.
Some might think that when MJ and SJ were diagnosed with ASD’s, I got my answer to the question of whether or not they will be OK. Some might think that the answer I got was “no”. Nothing could be further from the truth. Their future may be more clear than the day they were born, but it still cannot be predicted. The answer is not tied to autism.
In the eleven years that have passed since I first asked the question “Will my son be OK?”, I’ve recognized that it wasn’t even the right question to ask. Instead the questions to ask are “Are my kids OK today?” and “Am I doing things to make tomorrow the same or better?”
Yes, and Yes.