All in Airway and Respiratory
"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 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.
When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.
had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.
In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.