My roots are in the Chautauqua movement. My maternal and paternal ancestors owned cottages in the Lakeside Chautauqua on Lake Erie. My early childhood was punctuated by summer visits; by age eight, I was a year around resident in the same. Summers found my community overrun with vacationers enjoying the culturally rich environment. Wikipedia sums it up well, “The Chautauqua brought entertainment and culture for the whole community, with speakers, teachers, musicians, entertainers, preachers, and specialists of the day.” I have written in the past about how access to such professionals influenced who I am today; it predestined me to be a life long learner.

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.

The first word that comes to mind when I think of my mom is creative. She showed her love by making you something. After high school she worked at a fabric store. Sewing remained a life long enjoyment. When I was in high school she made every dress I wore to a dance. There was a plaid skirt and powder blue spaghetti strap silky top for my freshman year. A pink satin with fitted bodice and 1980’s puffy sleeves for my senior prom. I loved those outfits. But Mom didn’t do zippers or button holes.

We celebrated Nathaniel's birthday a few weeks ago; early because his actual birthday falls on the Thanksgiving holiday weekend. Five seems magical and unbelievable. It seems to have happened overnight, and at the same time like he has experienced too much to still be so young. A few hours before his party, Josiah took him to the back yard to take some photos. They too are magical. They show clearly Nathaniel's wonder and joy for living.

I typically use Nathaniel's quarterly GI appointment as a reason to write about his progress transitioning from g-tube to oral feeding. I skipped writing about April's appointment because there was nothing spectacular to share.  Nathaniel's extended PICU at the end of February required us to return to full g-tube feeds. He lost two pounds while sick and had no desire to eat orally when discharged. I write a bit about that recovery here.

I probably should have written about feeding through that season. The ebb and flow between success with oral feeding and relying on the g-tube has been very much a part of the transition.

I drove nine hundred and fifty miles across Missouri, Oklahoma, Texas, and New Mexico earlier this month. Rich and I won big at the only lottery we have ever played - the timing of a trip to Philmont High Adventure Scout Ranch. Scout troops put their request for a trek in a literal lottery eighteen months in advance. Josiah and Rich headed west by train with others from our local troop mid-June. Our personal win? Their one hundred mile backpacking trip ended on July third, the day before Andrew would participate in the 95th Maverick Club July Fourth Rodeo in Cimarron, New Mexico. Philmont sits just a few miles outside of Cimarron. Andrew took a full time cowboy position with the Scout Ranch last September. The opportunity to visit Andrew, see the guys come off the trail, and watch the rodeo called me west.

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.