One year ago today I was sitting in the ICU of Scottish Rite children’s hospital. I sat next to a machine and counted the breaths it took for my child. I counted the medications that hung from the IV pole at his bedside…three antibiotics fighting the pneumonia that seemed to take over little by little, hour by hour; two medications to keep his blood pressure high enough to sustain his heart beat, several medications to keep him sleeping and comfortable, a paralytic that kept him still so that his little body didn’t fight what it needed to survive; blood from a stranger hanging, slowly dripping in hopes of better oxygenation to the body, and nutrition to fuel what seemed at this time to be an almost impossible recovery. I watched as jagged, erratic lines moved across a monitor of a machine recording his brain function, convincing myself of what those lines did and didn’t mean.

My mind took me back to just hours before when in an instant he went from stable to a room full of people standing over him, diligently working…doctors shouting “Do you need help?” and a nurse whispering “there’s no pupillary response.” I remember so vividly watching the color drain from his little body, watching the numbers on the monitor as they counted down and the feeling of fear as I was being dragged out of the room.

“Unstably stable” said the ICU doctor. “We take it one step at a time, as it comes.” “The plan is to wait, we’ve done everything we can.” I asked the most difficult question of my life that night.  I looked into the eyes of that doctor and asked if my husband who was traveling from our home was going to make it to see our child, thinking I was prepared for her answer. I remember dropping to my knees when she asked how far away he was.

I sat by the bedside of my child and I wondered if he would ever wake up and I wondered if he did, would he be the child that he was before this. The child who woke up everyday with a smile on his face, ready for whatever the day brought; the child who could read people and their emotions like a favorite book; the child who gave unconditional love like you’d never felt before; would he laugh at the same things, would he talk, would he remember, would he breathe?

I was no stranger to worry. I had worried about this child before he was even born. I worried about my inexperience as a mother. I worried about why his hair was curly. I worried as I waited for him to take his first steps. I worried everytime he stumbled and fell. I worried when the doctors couldn’t seem to help him. I worried we would never find a diagnosis. I worried when we had a diagnosis. I worried as he took his last steps. I worried at every doctor’s and therapy appointment. I worried hospitalization after hospitalization and surgery after surgery. I worried when he lost friends and didn’t seem to have a place where he fit in. I worried he was lonely. I worried he would feel cheated out of a life and dreams of a future. I worried everytime he lost the ability to do something. I worried about his limitations. I worried about every medical decision. I worried that he worried. I worried he knew too much. I worried he knew too little. I worried about his future.

As I sat by his bedside…I worried about a future without him.

That day, a year ago was June 18th. 18 days from that date, my son came home from the hospital. In a few short months, my son will be 18 years old. Tonight, I’m not worried, I’m grateful. I’m grateful for the endless amount of love he has given me. I’m grateful for the lessons he has taught me. I’m grateful for his strength. I’m grateful for the smile on his face everyday. I’m grateful for his laughter and optimism even in the most difficult of circumstances. I’m grateful for the opportunity to be his mom. I’m grateful that our paths crossed.