Nathaniel and I left his Cincinnati Children’s Hospital check up last May with an interesting recommendation from his ENT: look beyond the pediatric community for information and support. I had arrived with questions about Nathaniel’s options for voicing. They shared of another patient with a laryngotracheal separation who learned to use esphageal speech. They also expressed a great deal of hope that given the right support, Nathaniel had a good chance of voicing.

Six.

We are celebrating Nathaniel’s sixth birthday this weekend. I’ve probably said it about each year, but it is unbelievable that he’s six. When you parent and love a child who has bore labels like “prognosis: poor,” “failure to thrive,” and “unadoptable,” every year is a milestone. When that child has survived multiple episodes of sepsis, respiratory failure, accidental trach decanulation, aspiration pneumonia, medical formula intolerance, and dehydration, every birthday is significant.

When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.

"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.

had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.

In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.

It was during the second session of developmental language group that I realized another layer of complexity because of Nathaniel's inability to produce any audible noise with this vocal cords.

He can not scream to protect himself from others or get help.

After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.

A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.

Nathaniel pulled out his tracheostomy tube tonight. A first since airway surgery. The setting was close to what I have always imagined to be the worse possible. We were northbound on Interstate 44 returning to the St. Louis area from visiting our daughter and husband. The highway had just widened to three lanes. I was driving; our van was in the middle lane with semi-trucks on both sides of us. Everyone was traveling around seventy-five miles an hour. Rich was beside me in the front, trouble shooting a problem with Nathaniel's talker. We had just driven trough one of many hard rains. I heard velco and Nathaniel's breathing sounds changed.