Recently one of our older children text late at night and asked if I had time to answer five very specific questions. I did. He called, and I answered the questions quickly. And then I asked, “Are you doing some kind of writing?” Having been his home school teacher, I recognized research mode. He shared that he was writing about what the resurrection of Jesus Christ means to him. The questions were focused on Nathaniel, and I curiously asked if he would share his work with me. And then I asked permission to share it with the world.

Nathaniel is back to baseline.

He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.

But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.

He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.

During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.

I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."

The team paused to give me time. All I could do was cry.

I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"

"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.

From under his pillow the alarm on Rich's cellphone went off.  Five forty-five am.  The shoulder I was using as a pillow moved, and then was gone.

"What if adopting Nathaniel means you can no longer do the things you enjoy doing as a family or individually?" asked the adoption case manager during our staffing interview.

Rich has just finished explaining his and our older boys' involvement in Boy Scouts of America, including the three backpacking trips to Philmont High Adventure Camp. There were fourteen individuals sitting around the table participating in our interview. They had interviewed other couples before us. They were charged with the task of selecting Nathaniel's forever family. Prior to this question, they had described Nathaniel's medical conditions and the many concerns physicians had for his future. The adoption case manager had explained that it was uncertain if Nathaniel would ever walk. "What if he can't hike and go backpacking with you?" the she pushed Rich a bit more. Nathaniel took his first steps nine months later, just a few months after we finalized his adoption.