We had been in the NICU for 12 days. Those twelve days felt like an eternity. I didn't realize how many days we were there until a few months ago.
As we walked the hallways of the NICU, I felt like my legs were going to give up on me. My body was coming out of shock and realizing I had not been eating or drinking. It was as if I was numb. Some days I still think I am numb and fear that when I finally come back fully into my body, I won't be able to take on my life.
As we entered his room, there was a lot of light. I was delighted because he loves the outdoors, to be outside, so this would give him a little piece of the outside world.
The nurse came in. He handed me a binder with information on what to expect during this time. In there was a road map. It reminded me of candy land. It described the steps he needed to take to make it home. I remember reading "getting ready for school" as one of the steps to making it home. I read that, and I started crying and questioning, how? How would we get him there? The nurse said, "today is the first day; there will be good and hard days."
As I wiped my tears, I looked over at my son. He was in bed with his eyes open. He could not turn his head, so he looked up at the ceiling. The nurse said, " tell me about your son; what is he like?" The word that came to my mind first was willful. When I said that, the nurse said, " that's great, we love to hear that. Kids like that never give up".
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