What Our Son's Ventilator Meant to Our Family During His Short Life

When one of your children has a terminal illness, the rest of the family unites to provide the necessary care. Sometimes family effort alone is not enough and you must depend on mechanical support. Our youngest son, Evan, had been on a ventilator for his whole life. Even at the age of 5, Evan’s older brother, Noah could operate the machine. Wherever our family traveled, the ventilator went too.

We always knew when the time came to shut off Evan’s ventilator for the last time, it would be a time of sorrow — a line in the sand we never even wanted to approach, much less cross. We knew at that time we would have to let the machine go back to the equipment company and it would be like losing a valued part of our family.

Last evening, just eleven days after Evan’s death, we did the unthinkable. Penni, Noah and I all put an index finger on the shut-off button and held it till the pulsing ventilator stopped.

“Hey, our fingers look like a star,” Noah, now 11 years old, squeaked out. My tears were held for a moment and Penni nodded her head to affirm Noah’s interpretation of three fingers all connected at their tips.

Many of you remember a story I wrote called “Dream House.” The story will live on, as author Denise Brodey included it in her anthology called The Elephant in the Playroom. In the story, Noah asked Penni if he could keep one thing after Evan dies. He wanted the ventilator. When she asked why, he said, “Because when I hear it running I know Evan is safe.”

We never thought that was unusual because every person who knew Evan was also comforted by the sound; personally, I always thought it sounded like gentle waves lapping the shore on a peaceful star-lit night. The vent would take a breath and then pass it on to Evan, a small click would follow. The cycle was set at 18 breaths per minute. The ventilator never took a day off and never let us down.

The night we silenced the vent, we circled around it. We stood around the bedside stand and I prayed. I prayed that another child would soon grasp life and grow stronger even if just for awhile because of that machine. Maybe another family would now embrace the machine we’d learned to count on as one of our own.

And then we pressed the button.

Silenced, the vent stood on its heavy metal stand with large casters. I’d always thought it looked like a friendly alien, kinda like R2-D2 from Star Wars. It even had a sci-fi name: the LTV 950. I have had many acronyms over the years for the LTV, but today mine is going to be “Live the Vision.”

You know, Noah was right when he said our fingers on the shut-off button looked like a star with three rays of light pulsing from its center. I can remember when we brought Evan home to die after his 252-day stay in the hospital. Even though we knew he would probably not live to see his second birthday, I always had the vision that he would accomplish things a father hopes for his son. Evan didn’t let me down, nor did the ventilator; they were both stars.

Yesterday was a very hard day for me. It was kinda funny though, once we turned off the LTV 950, I felt an overwhelming sense of peace. After I went to bed, I heard Penni laugh as she sat around the kitchen table with Noah and a couple of close friends. I haven’t heard that eruption in eleven days. I guess she felt a little like me.