That afternoon, as I was in the NICU with her, the pediatric neurologist came up to see her and talk with me. I listened to his explanations, and then he asked if I had any questions. There was one thing from the day before that was not mentioned in the conference room meeting, but I had read online that night. But I couldn't speak it. I took a few long, deep breaths and finally got up the courage to ask the Big Question. I could only manage a whisper...
"Realistically, only through early childhood," was his response.
I looked over at my sweet, tiny baby, sleeping so soundly, so perfectly beautiful, and I couldn't believe it. He left, and I just stared at her, touching her softly with my hand. She was three days old, and I was just told our time with her was short.
I had to be discharged from the hospital that day. It was about time for me to leave, so I had to go back down to my room and gather my things. I left her on the 14th floor and somehow made it back to the 12th floor, back to my room, started to fiddle a bit with a few of my things, and then I melted.
"I don't want it to be real. God, please, don't let it be real!"
I could deal with a child with special needs, the extra care, the extra work, all that comes with that. Yes, it'd be hard at times, but all kids take work. But to have to think about losing her and not having much time with her was more than I could take.
"I just don't want it to be real."
But, every morning since then, I wake up, and it's still real. And God's grace greets us each morning in a new and fresh way.
One of my favorite verses since college has been Lamentations 3:22-23. We praise God for His mercy and love.
"The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness."