I am learning a multitude of ways not to teach and help Nathaniel. I wrote a lengthy blog post in September about starting to memorize bible verses with him. Seven months later, I have learned that approach did not work. Or perhaps it is better stated that in recent months my goals have changed, and so my approach needs to change too. If this topic is new to you, click on the link above to learn where we started.

I made a new AAC friend last month. Dr. Carole Zangari, who blogs at PrACCtical AAC, and I spent a few hours on the phone getting to know each other and discussing her recently published book, Tell Me AAC in the Preschool Classroom.  I have been desperate for direction for Nathaniel's education, and the program developed by Dr. Zangari and Lori Wise seemed promising. I have been studying the material daily since that conversation, and recently watched her webinar given through Saltillo. Dr. Zangari and I had a second phone meeting yesterday morning. At one point in our hour and a half conversation, I had to get up from the table and pace the living room floor; the excitement brewing inside needed a physical release.

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.

I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"

"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.

From under his pillow the alarm on Rich's cellphone went off.  Five forty-five am.  The shoulder I was using as a pillow moved, and then was gone.

"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.

Her question awakened a maternal instinct I had known five other times, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.

At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan. 

"Why don't you homeschool Nathaniel?" The question was the first thing my mom asked when I answered the phone early Tuesday morning. It was asked last Saturday by a college friend, who has close to thirty years experience in public school special education, after she read my blog post about a Christian school's denial to consider enrolling my son. It is a question Rich and I have repeatedly asked ourselves, and it is a logical one given that homeschooling has been our educational choice for our other children.  Answering the question and making any educational decision on Nathaniel's behalf forces us to reflect on his journey.

When placed in our home through foster care, Nathaniel was enrolled in early intervention services offered through our state Department of Education. We have homeschooled for twenty-five years. Our experience with public education was limited to our older two sons who attended while living at their mother's home. Despite the unfamiliarity, we continued the services. The intervention model identified the child’s greatest need and offered one therapist to address concerns. Nathaniel was assigned an occupational therapist. We loved her. However, together we quickly realized that Nathaniel had more needs than she could meet in an hour a week.  Speech and physical therapy were added. Nathaniel’s experience with early intervention speech therapy has been documented here. Not soon after we began sessions, we stopped them. We sought private speech therapy to tackle what we knew would be long-term communication needs.

I shared on my personal Facebook wall that we received our first rejection notice from a private Christian school for Nathaniel’s enrollment next fall. Someone commented, “I get how the school could make that determination. If they don't have a special education program with self-contained classrooms, then Nathaniel would have to be placed in a regular classroom. His medical needs and communication would most likely create classroom management issues.” The school’s reason "Our methodologies do not allow for a child to have a disability in the area of communication,” was the first hard blow of the day. The comment was a second and harder blow.

I knew as I walked out of the Pediatric Intensive Care Unit in November that Nathaniel would recover from the acute illness requiring swift intervention. His body was already responding to the IV fluids. However, I also knew that my heart will never recover. There is no ointment or medicine or surgery that can fix how it breaks when I have to pin Nathaniel’s little body to an emergency room gurney and hear him plead with his voiceless screams and beg with his searching eyes for the procedures to stop.