Just a day after we were told there was nothing left that they could do for Sam, but by some wonderful, miraculous twist of fate, Sammy showed us he had a purpose here on earth. It was not his time to go and he was going to be here to teach us all something amazing. I made a deal with God, that September 8th, when I was told Sam was dying, I told Him that if He would just let my son stay with us, I swore I to do something truly wonderful in return. My life then took on a whole new meaning. I didn’t think much about this new meaning and what I would be facing; I just wanted him to live. I wanted so badly to believe that everything was going to be okay, but we were clearly not out of the woods yet, not by a long shot and for the next days, weeks and months I would fight the fight along with Sam.
I was not able to bring Sam home to his nursery, not for a long time. His nursery became the corner of the NICU complete with monitors, hanging food bottles, alarms and lots of tubing. I could not hold my baby or feed him a bottle. He was ventilator dependent with no ability to eat the way a normal, healthy did. He was much too fragile to be removed from the crib. The only people that were allowed to hold him were the clinicians. As much as I knew this was necessary for Sam’s survival, it still felt like a violation to me. I was his mother, and I could not rock him or comfort him. I had no way to bond with my own child or have any say in what his care was going to be. This was all up to the neonatologists, nurses and respiratory therapists. They were his caring for him, but they were strangers. I could now only watch as the clinical team performed every bit of my son’s care. I felt helpless. My baby and I were separated by all of the complex machinery that was keeping him alive. It all felt so incredibly unnatural – I hated the fact that I needed permission to touch my own child and even when I did, he didn’t respond so I had no way of knowing if he could feel my presence. All I wanted was to take him home and for things to be normal.