INCOMPATIBLE WITH LIFE - entry 1
I have a confession. Blogging is foreign to me. Being vulnerable is just short of terrifying for someone like me because I've always felt like it revealed a chink in the armor around my feelings. But, with a huge push from my best friend, and motivated by a feeling deeply held by my wife and me to share our son's story, here I am. Excited, nervous, anxious and ready to embark on this cathartic adventure and I hope along the way it might encourage a family dealing with a similar circumstance or lead someone to a helpful resource or simply reassure them that they aren't alone. So here goes, the journey of our son...my and my family's roller coaster ride of emotional highs and lows brought to you in words, photos and videos.
Never could I have imagined that the impending birth of our second child was going to kick off what would be the most challenging, unpredictable, humbling, emotional, terrifying and inspiring season of my life. And what better place to start than the very beginning...winter, 2011.
Routine. It was just a routine ultrasound. We couldn’t wait to find out what we were having so we could tell our oldest, Tyler, if he was going to have a little brother, or a little sister. We also wanted to get ahead of the preparation game so our "type A" personalities could plan the nursery colors and start buying baby clothes for the boy or girl that was on the way.
The ultrasound appointment started out like any other. As I watched the monitor, I had the same reaction - is that grainy blob a foot? Nope, that's the head. How about that smaller grainy blob? I can never quite make out the detail of an ultrasound, and kind of laugh on the inside when someone looks at one and actually says they look like mom or dad. Soon, the verdict was in...it was a boy! Tyler was going to LOVE having a little brother. But then something changed. I sensed the ultrasound tech was a little distant, but it wasn't enough to set off the alarms, so I headed into work for the day.
The first thing I did when I got back to the car was to get on social media and share the exciting news that Tyler was going to be a big brother! Five minutes down the road, my phone rang. It was Lauren, and she didn't sound happy. It was our son. The ultrasound showed major abnormalities with his spine and brain. They couldn't discuss much more, but said it was possibly spina bifida, and immediately scheduled us for a level two ultrasound with a maternal fetal medicine specialist two days later. That's when the first wave of helplessness overtook my soul.
A photo from our session with a photographer that donates her own time to photograph maternity and birth events involving pregnancies with a negative prognosis.
The questions in my head grew exponentially as the hours passed leading up to the ultrasound. Painful feelings were dredged up from losing our daughter, Eliza, in 2007 when Lauren's water broke at 21 weeks and Eliza didn't survive birth. We didn't want to lose another child. Lauren canceled a work trip to Dallas, TX, and our conversations of planning the nursery colors quickly turned into discussions of whether or not we could even stay in our current two story house if we had a child who wouldn't be able to walk.
In 16 years of law enforcement, I've arrested a lot of murder suspects, violent fugitives and have been on many SWAT search warrants and other tactical operations. None of that compared to the anxiety I felt the day of this level two ultrasound. What was going to happen? What are they going to find? What are we going to do? How are we going to get through this? How could this be happening?
The day finally arrived. The examination room was darker than previous ultrasounds, both literally and figuratively. It seemed fitting given the circumstances. I held Lauren's hand just as tightly as I had when she was in labor with Eliza four years earlier.
Once the fetal maternal medicine specialist finished the ultrasound, I remember him lowering his glasses before he started listing our sons issues. Posterior encephalocele, hydrocephalus, bilateral cleft lip, cleft palate, clubbed feet, an unknown issue with his fingers, and an incomplete closing of the backbone around the lumbar spinal cord. Not all of the terms were foreign to me, but it was overwhelming, especially taking into account the somber tone of the doctor's delivery.
The posterior encephalocele combined with the hydrocephalus was going to be his fatal anomaly. The encephalocele was a hole in the back part of his skull that failed to close and through which brain tissue was herniating. His condition was deemed "incompatible with life”. The doctor didn't think he would survive the pregnancy, and if he did, wouldn't survive long after being born. In the highly unlikely case he survived, the doctor said he would have no quality of life...he wouldn't breathe on his own, eat on his own, see, walk or be able to communicate with us. At this point, I needed to cut to the chase, so I asked the doctor if my son was going to die. The answer...yes.
I immediately began to cry, and it quickly turned into sobbing as I laid my head on Lauren's lap. I couldn't control my emotions, and in that moment, Lauren was my rock. The doctor eventually talked about our options, none of which were easy to hear. This was uncharted territory for us, and the road that lie ahead seemed riddled with impossible decisions.