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Three Years of Knowing Nathaniel

Three Years of Knowing Nathaniel

Three years ago this morning we met Nathaniel.

He was hospitalized the last week in June for a virus, and one of his physicians came by for a visit. It was primarily a social call. During our conversation we reflected on how little we knew about Nathaniel three years ago. I remember vividly meeting her for the first time in July, 2013. I remember how patiently she explained the airway surgery Nathaniel would need. Though the medical team knew his airway was complex, they anticipated reconstruction. Surgery would be the summer after he turned three - this summer. They anticipated a week in the hospital. They had good reason to hope that he would live tracheostomy free and gain vocalization. Three years ago today we started down a journey of medical complexity that we thought was temporary. Everyone thought it was temporary.

Rather than temporary and tracheostomy free and resolved, knowledge gained and decisions made this last year has rerouted Nathaniel's life and ours to a different path. This last year has been our most difficult yet. In the last twelve months, Nathaniel had six hospital admissions to address airway issues, received general anesthesia eight times, and had five hospital admissions for illnesses. We took five trips to Cincinnati for medical purposes totaling six weeks spent in or near Cincinnati Children's Hospital. This history is evident in my photos from this last year. Most of the photos of Nathaniel taken since July 2015 were in a hospital or during a medical procedure.

The attending physician on the floor during his recent hospitalization came by to talk one afternoon. "What is the plan for his airway?" he asked. When I told him that this was it, he replied, "I am so sorry."  The genuine compassion of a stranger gave me permission to acknowledge to myself how hard our journey has been and how sad our choices for his airway. It allowed me to feel how disappointed I am that the hope we all had for Nathaniel three years ago could not be realized. Our thankfulness for a safer airway does not eliminate this blow of lost hope. Thankfulness and disappointment coexist and are tangled like vines hanging from trees in a tropical forest. I reach for one and find myself swinging from the other.

As I looked beyond the hospital photos, another theme emerged between last year's medical experiences. Nathaniel climbing. I noticed photo after photo of Nathaniel climbing whatever hill was in front of him. This is what I have learned new about Nathaniel in this third year of knowing him - I have seen his determination. His relentless drive to keep moving up and on is a counterbalance to the disappointment we have faced this year.

Over this third year of knowing Nathaniel, I have also learned how much Nathaniel and our family have benefited from community. The slogan "it takes a village" in reference to raising a child has felt true for us this year. It has been almost a year since we set up his Facebook page, Hold My Words, and offered Team Nathaniel wristbands. The support and encouragement has been beyond what we expected, but exactly what we needed. Our daily up hill climb has been long and lonely. God has used our family, our friends, our faith community, our first responders, our nurses, our therapists, our physicians, our strangers, and our online followers to meet us in our hardest moments and help us keep on keeping on. We are grateful. Through the love and care of others, God has steadied the oscillating between thankfulness and disappointment; grace has allowed us to fix our eyes on the author and finisher of our faith and helped us to run with endurance this race that was set before us. Not the race, not the hill, not the journey we expect three years ago today. But one set before us. And the one on which we have learned courage, felt loved, and found joy. Thank you for being with us and for us through our third year of knowing Nathaniel.

Hold My Word Wristbands are available in children's and adult sizes.

Links that might be of interest:
A Year of Knowing Nathaniel
Two Years of Knowing Nathaniel

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