Starting My Second Book

I did something Monday that I have only done once since July 30, 2013. I drove alone with Nathaniel in the van. We went to the park and took a walk. We stopped by Barnes and Noble. We were away from the house for almost two hours.

It felt so good to be out together. Alone. Together.

When Nathaniel first came home, we had enough private duty nursing shifts that I was rarely alone with Nathaniel even at home. Day nurse Danielle went everywhere with us. If she wasn't working, I canceled appointments and adventures. When we moved to only night nursing, the older boys started to tag along when we needed to go somewhere. Often they would sit in the van while I accomplished the task at hand. While some families have to rely on grandparents to help with a special needs child, we were (are) fortunate to have older children committed to Nathaniel's care and safety. In recent months, a few friends have stepped in and helped get Nathaniel to doctor and therapy appointments. Day by day, it worked out. Sometimes I found someone to help with transportation; sometimes I was able to postpone. Many times someone else ran the errand for me.

To set the record straight, there are no trach police, or doctors, or nurses, or agencies who prevented me from driving alone with Nathaniel. I would not do it.  Not after observing his airway emergencies. They were scary enough in controlled settings, like the multiple times his trach tube came out when we were changing ties around his neck. A new trach and ambu bag were steps away. He was already on his back with his neck extended. There were other people to help. Even so, it was bewilderingly how quickly Nathaniel's rosy pink skin was exchanged for white and then for a light ashen color. As desperate as I have been for the freedom to do things away from home without being accompanied by nurses or begging favors from family and friends, an airway accident wasn't something I wanted to experience alone with Nathaniel while flying down the highway at sixty miles an hour in rush hour traffic.

I can go places alone with Nathaniel now. I have seen his trach tube come out.  He keeps breathing.

Our Monday stop at Barnes and Noble was significant. For three years I have carried a softbound gray blank book to make notes about Nathaniel. I started using it the week we started our foster and adoption classes in 2013. Notes from class fill the first few pages. Then a sketch up of our family's life book that I created for our soon to meet adopted child. Then pages specific to Nathaniel. The first are literal cut and pasted explanations of his conditions from web pages and medical journals. I had not met him yet, but I needed a place to store everything I was learning.

There are pages of notes from therapy. Pages where I listed future appointments and checked them off month by month as they happened. Without much effort I could find the page where I took notes as a critical care doctor from ICU sat with me, and I had my first "be prepared to make quality of life decisions" conversation. Pieces of my heart were left on pages like that one.

There are stickers we collected from the receptionists. And doodles we made while waiting for doctors. There are glued in quotes and motivational sayings. There are hundreds of dates and weights recorded; Nathaniel's progress marked by pages, notes, and ounces. My gray book contains difficult and good news. There are lists and lists and lists of questions. There are answers. There are only a couple pages in the book left.

Nathaniel and I went to Barnes and Noble to buy a new book. Our Monday outing, Nathaniel and I going somewhere alone, and really all of post surgery life so far has marked not just a new chapter in our lives, but a whole new book.

We picked a blue one.