All in Our Family

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 remembering 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 year. Our day nurse at the time, Danielle, attended to Nathaniel while I prepared Grandpa's meal. Danielle and I slowing 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.

Augmented Alternative Communication and Bible Verse Memory

For the last three months, Nathaniel has benefited from a very brief time of rote drill or recitation with me every morning. Using his talker, we count to ten, say the ABC's, and practice questions and appropriate responses. For example, I will ask, "What is your name?" to which he selects the one button on his device to respond, "My name is Nathaniel." Drawing on this skill yesterday when we were at a Labor Day picnic, he introduced himself to new friends. Within the last month he has shared his name with strangers at a playground. I do not believe these small social steps would be taking place if we were not working daily to recite.

Just as young children frequently memorize nursery rhythms and songs through repetition, the preschool years are often the time when children raised in Christian homes begin to learn their first Bible verses. Spiritual growth is as important to us as Nathaniel's emotional, physical, cognitive, and social growth. For generations of Rankins, the tool to encourage spiritual growth has been memorizing Bible verses. As a child and young adult, my husband memorized Bible verses weekly using Bible Memory Association, now called Scripture Memory Fellowship. Our children memorized Bible verses weekly through participating in the AWANA program. When they were small, we memorized the Sermon on the Mount as a family. We used motions, not American Sign Language, but our own creative fine and gross motor movements to help with the memorizing. The children were three years old to eleven years old when we recited the chapters of Matthew as a family standing in front of our church congregation. I have sweet memories not only of their incredible ability to learn and share long passages of scripture, but of working together daily after breakfast on the verses. The discipline of daily scripture memorization was formative to the children's minds and characters; the words they memorized had value to their souls.

Finding Our New Pace

"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.

Vacationing at Lakeside 2016: Augmented Communication and Pointing

When Nathaniel was fourteen months old, our then speech therapist asked if he was pointing at things. She expressed the importance of pointing and joint attention in language development and stressed that these were precursors for further language growth. She advised that I should place Nathaniel, who was still new at sitting up, in the middle of the room with everything desirable out of reach. "Unless Nathaniel points to the object, do not let him have it. No toys until he points to them."

Nathaniel was perfectly content to sit quietly for full days without toys.

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.

Welcome to Love

We share a middle name. I did not expect that. Nor I did expect how quick and unannounced grandmother tears come. They showed up first in the shower the morning I knew my daughter was in labor and again standing by the sink in her kitchen a dozen hours later as my husband washed birth off his granddaughter's head.

"Can Dad wash her hair before you leave?" our daughter asked. She has watched her daddy bathe babies for two and a half decades. While she closed her eyes and rested deep on her pillow, her father showed her husband how to wash a little girl's hair. And I wiped tears.