Benjamin Robert Gerlach, June 30, 2012 – May 2, 2016

This day five years ago began as any other day that Benjamin was in the hospital. Except this time, he was a bit more serious, was intubated and had been transferred from our suburban hospital to Lurie Children’s in downtown Chicago. It would end in a much different way than I ever expected.

There are a couple of things I’m thankful for on that day.

-Ben’s pulmonologist was on rotation as the Attending in the PICU. He had been Ben’s doctor since the NICU. He knew us. He knew Ben. He was in charge and I felt we were in good hands.

-We were fortunate enough to get a room at the Ronald McDonald house near Lurie. They were full and we were initially on the waitlist. We got the call and were given a room so we could have our whole family conveniently near the hospital. We lived 36 miles from Chicago which can easily be 45 minutes to an hour drive. A free room in a place with meals and amenities for families made this process easier.

-He saved me from the heartbreak of seeing his heart stop without preparation or notice. I had been by Benjamin’s bedside all day every day, watching his monitors. Singing him songs. Reading him books. Holding his hands. Massaging his feet. Moving and bending his legs. All of the things that I would do for him on any normal day. Only this was different. He was sedated and ventilated. But I know he knew I was there. Because that night when Rob and I were trading places (I would stay with Ava and Colin overnight, Rob would stay at the hospital) and Benjamin was by himself, his heart stopped. He coded and needed to be revived. The doctor called me to say he had an “episode” and I needed to come back to the hospital. Not really knowing what that meant, I woke my other two sleeping three-year-olds and headed back with them half-asleep still in their pjs with no shoes. We arrived and were met in the lobby by the chaplain who took us up to the PICU. My husband was waiting for me in the hallway, and he finally asked the doctor “is there any chance?” to which the reply was “I’m sorry, he’s gone.” We got to his room and the determined team of nurses was surrounding his bed, taking turns on pumping his chest to keep his little body alive until I could get there. They had been doing this for more than half an hour.

They put me, his mom, in the chair next to his hospital bed. His care team was prepared for what was happening because I was not the first mom to ever lose a child here. The cold plastic hospital recliner was already waiting for me by Ben’s bed. I sat down as they stopped CPR to bring him over to me where I could hold him until his heart slowed and eventually stopped beating.

And just like that, my boy was gone.

It’s been five years… but today is just as meaningful for our family. This morning, Colin suggested we make it a celebration and bake Benjamin a cake. So that is what we will do. Celebrate his life. And eat cake. He loved the sun on his face and the breeze in his hair. So wherever you are today, look up into the May blue sky, say his name and smile.

For Ben.