"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.

December has been a whirlwind of fun for our family.  Rich spent hours in the garage making three maple saddle stands as a Christmas present for Andrew; Nathaniel and I spent those same hours in the kitchen making yummy food for everyone. We were able to see all our children over the Christmas holiday and made some great memories. I love this photo of Nathaniel's first experience ice skating! Unfortunately Nathaniel is currently in the hospital with a virus. Rich is with him this morning to give me time to rest. I have enjoyed the quiet moments to reflect on my writing and reread some of this year's blog posts. Here are the top five most frequently read 2016 blog posts:

Nathaniel turns four tomorrow. Since it falls on Thanksgiving Day this year, we gathered family and friends a couple weekends ago to celebrate. This birthday carries some significance - the first that Nathaniel can eat cake. I decided on a Very Hungry Caterpillar theme to commemorate and had a lot of fun making with the preparations, especially making the cake decorations out of fondant. Nathaniel blew out his candles and then signed "awesome." Yes, Nathaniel everything about this milestone is awesome. Happy Birthday!

Original Post: October 2014. Updated: October 2015, October 2016

I think a lot about how to help Nathaniel understand and engage with the world and how to help the world understand Nathaniel. In this light, Halloween has been troubling me.

How does a child who can not speak and does not eat participate in Halloween?

We could skip it. There are many Christian homeschool families who avoid the holiday all together. We did at one point in our child rearing. In recent years Halloween has provided an excuse to spend time with our friends, Dan and Kelly and their seven children. October 31, 2013, Nathaniel's first Halloween, was a cold and rainy week night. After enjoying soup with our friends, we brought him home and missed the door to door part of the evening.  In 2014, we celebrated Halloween with Nathaniel's foster family. We visited a few homes and went home early again.

In the middle of setting up our camping trip on Saturday, I received an email that rocked our world - Nathaniel's communication app was released for iPhone and we were invited to be beta testers.

In the time it takes to brown hamburger and open cans of beans to make chili, the app downloaded and I synced Nathaniel's vocabulary from a recent Dropbox backup. On the next trip carrying things outside, I sat down next to Nathaniel on the retaining wall from where he was watching his brothers cut wood. I handed him my phone with Speak for Yourself open. Inquisitively, he grabbed it, stared at the home screen for a minute, and then said "CHAINSAW."

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.