What Nathaniel's Grandfathers Taught Me About G-Tube Feeding
Rich's father lived with us when Nathaniel came home in August, 2013. He was ninety-two years old at the time and required assistance with meals. My days were punctuated by preparing, serving, and keeping Grandpa company while he ate breakfast, lunch, dinner. Our family talked at length about how a new baby with intense medical needs would intersect with the responsibilities we were carrying at the time for Grandpa. Grandpa participated in some of those discussions. He firmly encouraged us to move forward with fostering and eventually adopting Nathaniel. He expressed a trust not in our ability to manage the additional demands, but in God's ability to help all of us adapt and make room for a little one who needed a family. "I can make myself a peanut butter and jelly sandwich when I need to," I remember Grandpa offering.
Nathaniel qualified for private duty nursing support, and I was immediately faced with the question of how to use that help. Do I leave Nathaniel in his bedroom with the nurse for the hours I spend in the kitchen and with Grandpa? Or do I include Nathaniel in those times and try to merge his medical care and staff intimately into family life? His brief stay at the pediatric rehabilitation hospital influenced the decision strongly. The morning of Nathaniel's discharged, I met a Craigslist seller on my way to the hospital and bought a used high chair. Three hours later, Nathaniel was within cane's reach of Grandpa at the table. Grandpa and Nathaniel spent mealtime side by side for close to a year. Our day nurse at the time, Danielle, attended to Nathaniel while I prepared Grandpa's meal. Danielle and I slowly altered Nathaniel's g-tube schedule to match Grandpa's meal schedule. Daily at breakfast and lunch, she would warm her packed food and the four of us, plus any older boys who where home at the time, would gather around the table.
I did not realize the long term implication of a simple "how do I care for Grandpa and Nathaniel at the same time" question. I did not realize the decision to move Nathaniel and his medical equipment to the table three times a day would evolve into a personal theory on g-tube feeding. In our home, coming to the table was and is symbolic to coming home and becoming one of us. Placing Nathaniel at the table and adjusting his feeding schedule to match our meal times implied that while a g-tube feed was a necessary medical treatment, there was a deeper and equally important familial and spiritual nourishment we wanted to share with him.
It was messy on the best of days. Physically messy when Nathaniel's g-tube extension medicine port would open and dump formula all over him and the floor just as hot food was coming to the table. Emotionally messy in trying to meet the ninety-two year spread of needs represented in my home. But to the table we would come again and again, learning from the previous day's attempt and counting on the grace we prayed for to cover the food and our mistakes. In doing so, we created a space where each of us were seen and heard and loved. Shauna Niequist writes, "We don't learn to love each other well in the easy moments. Anyone is good company at a cocktail party. But love is born when we misunderstand one another and make it right, when we cry in the kitchen..."
Grandpa would sit at the table with Nathaniel until his g-tube meal was finished even if the dose took an hour or longer to administer. It is a practice we continue today. What each of us eat or how we eat is less important than eating together. Filling Nathaniel's belly is secondary to reassuring him that we are here and that we will remain. There is much in Nathaniel's life that we can not fix or heal. There are broken pieces that no one can put back together again. "But what I can do is offer myself, wholehearted and present, to (sit) with the people I love through the fear and the mess. That's all any of us can do." (Niequist) For our family that happens most often and best at the table. I was unaware of my commitment to the family table until recently when I saw the priority not just at our own table in our home, but the tables we influence and come to in other places.
Rich and I enjoyed looking over our daughter and son-in-law's baby registry prior to their baby showers last spring. We unanimously agreed - let's get them the highchair. I can not remember which of us commented, but "all their children will be able to use it" and "it would be nice to buy a high chair for each of our children's first babies" were statements made at the time. The first chair has a first occupant. Come to the table, sweet granddaughter, and learn that you are seen and heard and a valued participant in the family. Blaise and her parents live a few hours from us. We seen them frequently, but I am not close enough to offer weekly help for my daughter as she juggles motherhood and her career. My responsibilities for Nathaniel demand creativity in how to be a supportive mother to my older children and a grandma. I have enjoyed sending a handful of prepared frozen meals home with Bailee each time we are together. Come to the table, daughter, and rest.
Nathaniel and I arrived at the restaurant first last Thursday. I scanned the small dining room for a place to sit. A large table with a thick wood top and six chairs dominated the center of the room with smaller two and four tops circling it on the outside. Almost every table hosted at least one diner, the residue of the lunch crowd. Navigating between haphazardly left chairs with Nathaniel, the medical backpack, and a highchair to reach the one free table in the corner did not appeal to me. It was not big enough anyway; we were meeting my dad and needed at least three spaces.
"Mind if we take this end?" I asked the couple sitting at the far end of the large table in the center. They both smiled a yes. I pushed the highchair closer and put Nathaniel in the green seat. He immediately reached for his talker. "Grandpa Thayer," he said.
The owner of the restaurant glanced our way from a nearby table where she was eating her own lunch. "He knows who you meet here," she said happily. My Dad invites Nathaniel and me to lunch often enough that we know the owner on a first name basis; it makes me very happy that Nathaniel independently connected the restaurant to his grandpa and asked for him. He wants to share his table. Grandpa arrived; our food was served. Nathaniel reached his hands out to join ours in prayer. Our circle of three ate, laughed, and talked. Our physical appetite was the least important need filled. Like every pause at a common table, we left nourished by connecting, valuing, and affirming each other. Things that minimize the actual food at the meal. Things that can not be measured into a g-tube feed bag or prescribed by a doctor. Things that are passed from older to younger family members, generation to generation, while they sit together at the table.