A young facebook friend asked an honest question about Nathaniel last week, “Could he possibly die, Kim?”

I had posted information about a doctor’s appointment and diagnosis, a newly found hole between the Nathaniel’s upper heart chambers. The question was genuine and filled with concern. I crafted an answer that tried to delicately balance between the truth of mortality rates for children with a tracheotomy and trusting in God.

The question has stayed on my mind. It has taken me back twenty-five years to a hot June night in 1990. I shifted between nestling against Rich’s chest with his arm wrapped around me and rolling onto my right side away from him. He would have slept soundly through my tossing until I deliberately woke him up.

“Will she die?” I asked.

Tomorrow is Nathaniel's second birthday. I have looked forward to the milestone since our adoption interview. Everyone at the meeting was hopeful that Nathaniel's trachea abnormality would be surgically corrected by his second birthday. Nathaniel's trachea abnormality dominated the conversation that day. As last year unfolded it became evident that trachea surgery is still a long way off. The hope of "by the second birthday" is now hidden away in our prayers for an unknown day.

Nathaniel was scheduled for hand surgery the last week in September. He was diagnosed last spring with "Thumb in the Plane of the Hand" on his right hand. It is exactly what it sounds like - his right thumb is in the same plane as his other fingers on his hand. He does not have thumb opposition with the right hand and the web space between the thumb and index finger is not as deep or wide as it needs to be. The finger painting photo above shows the abnormality pretty well. Consequently Nathaniel's grip with his right hand is very different. He tries to hold things between his index and middle finger using the thumb and index as a claw. Frequently he initiates play or grasping with his right hand and then transfers to his left. More often he just lets his right hand rest and uses his left as the photo below, taken last week in the St. Louis Children's Zoo, shows.

Every crumb on my floor has the potential of ending up in Nathaniel's lungs.

I type that sentence and do not know what else to say. There should be something funny inserted here. But facing the gravity of life with this child, I struggle to keep it light. Twice today he has picked something up off the floor, put it in his mouth, and then had a coughing spell that required immediate suctioning.

Daily I am realizing new ways that knowing Nathaniel aspirates will affect our lives. Daily I am realizing how out of the ordinary it is not to be able to eat anything. A playmate's veggie straw snack can not be shared. Explain that to two toddlers who heard "Let's share," for most of their play date when tugging at toys. Sometimes things make so little sense that repeatedly stomping your feet is the most logical answer.

We stopped Nathaniel's oral feedings at the end of July. For the first few weeks, he would grab at our food or sign 'want' when he saw his puffs container. I tried very hard to schedule the needed swallow study as soon as possible so that he did not lose his desire to eat or lose the skills we worked so hard to develop while we waited for the test.

Nathaniel was seen by therapy services at the children's hospital for a swallow study in January 2014. At the time, the evaluating speech and occupational therapists felt his eating skills were too premature to conduct the test. We were sent home with instructions to work on eating. By late spring Nathaniel had improved, but he coughed and vomited every time he ate orally. Our weekly occupational therapy sessions worked on feeding as instructed, but never addressed the coughing and vomiting. We sought an occupational therapy evaluation with a different therapist who strongly suspected that Nathaniel was aspirating. Precious time lapsed in waiting for the second evaluation, waiting for that report to be sent to the doctor, waiting for the doctor's order to be submitted for a new swallow study, and waiting to schedule the study.