On this very same day, just one year ago, Theodore was 6 days old. He was full of baby fat and smiles and yawns and soft cries. He brought light and love to my every breath, I was thrilled to be his momma.
But on this day, the neonatologist came in and gave us the results that changed everything. A few days back the MRI brain scan had been done and we were all waiting for a result that would promise a future. I was so expecting to take my boy home and tirelessly work with the needs he had. But God had a different plan, that had been hidden until now. The doctor asked if I wanted to look at the scans of Theo’s brain but I could not. I saw everything I needed to see, in the crook of my arm. He was beautiful, my son.
Sean came back from the room, the doctor shadowing behind him. I knew from his wet face that it was not the plan that we had prayed for. He put his arms around Theo and I and whispered, “i’m sorry.” The doctor sat heavily, showing her years of grief for all the babies she could not save. “Emily, the MRI showed that Theodore has only 10% of a brain, and of that 10%, its very….scattered….disorganized.”
I don’t get it, what does that mean? Can we fix it? Look, he’s doing so well!
“Emily, the brain does not repair itself. There is no growth from something that is not there. Emily, Theodore will be brain dead, he will be in a vegetative state his whole life. Without his brain, there is nothing telling his body what to do. Slowly the rest of his body will shut down. We can do surgery to make those things better, but they will get worse again. Its your choice, we will do whatever you tell us to do. We can let him go or we can prolong death with surgeries for the bowel.”
It was as if she was talking about someone else. Who was this boy she was speaking of?
She left the room for Sean and I to ruminate. But all we could do was cry. Theo was alive and happy, held in my arms, and death was looming at my door.
The decision was made for us, God had made sweet Theo to live for just 24 days. I was angry, confused. I’m still angry, asking WHY?!? But on that day our hearts took over and held our son. I wanted the decision in my hands, but instead Theo was in my hands. So we held him and he held us, for 18 more days.