Calling 911 brings help, right? For most of my life I have understood that to be true. Growing up in a small Ohio vacation town as the daughter of a police officer and volunteer firefighter I was familiar with the world of emergencies. Multiple summer mornings I woke to the scanner tones and heard the dispatch give our address as the location of the call. The first few times it happened I flew out of bed in a panicked pursuit of a stricken family member only to learn it was someone at our front door looking for help. Symptoms of a heart attack. A fishhook caught in an arm. Heat stroke. A Lake Erie rock thrown at the back of a head. Our porch steps were an open triage unit if the police car was parked in front of the house. If my step-father called for additional help and a transport to the hospital, our small yard filled with black cases of medical equipment, a gurney, and the guys who graduated high school a couple years ahead of me who were now volunteering. 911 called. Help arrived.

That paradigm might have been turned completely upside down on Nathaniel’s first night home.

Nathaniel and I achieved a milestone recently. I had been out grocery shopping and he was home with our private duty day nurse. As I walked through the front door I called my usual to him, “Nathaniel! Mommy is home!” He ran to me. Arms out stretched. Smiling broad. A first.

We had our first snow today!

All morning I wanted to get Nathaniel outdoors, but it wasn't until after his nap that it happened. When adding the second layer it occurred to me that I didn't know if the trach goes in the coat or stays out? Do I zip the coat tight to his chin? In the end, I zipped and went out. Just keeping the hat and mittens and boots on was challenge enough. (Snow pants? Didn't I buy those last fall? Where did they go?)

When the sun shines in January, my home is flooded with light. Designed by a carpenter in the 1950's our house has wide overhangs that protect the rooms from direct sunlight in the summer, yet allow the warming rays in through out winter. The two feet of extra roof saves us in heating and cooling costs all year. There is cozy spot on the couch in the living room where the sun shines in almost hot in the early afternoon. It is a good place to spend Nathaniel's nap time. Reading. Writing. Editing photos. Drinking the last of the morning coffee. It is a good place.

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.