One year ago today we made what would be one of the toughest decisions of our lives. We decided to stop Broxton’s tube feedings.

When Nurse Jo and Dr. Shaw made their visit the morning of April 8, 2012, we just sat and talked. We didn’t expect for the outcome to be what it was. His hospice team was always so good at never pushing us to do anything we didn’t feel comfortable with. We were on hospice for a reason. We had a plan for our baby boy – we wanted nothing more than for him to be as comfortable as he could be until it was his time to go. The conversation started with Kody and I explaining, “Well, he’s been asleep for the last 12 hours. We didn’t wake him or start his feeds while he’s been asleep since he has been so peaceful. We figured if he was hungry, he would wake up. It was the first time he was peaceful in days. We were just enjoying it!”  Dr. Shaw smiled, but then she asked a few more questions, all of which she knew the answers to.  I now know she just wanted us to have that “eye opening” realization. The realization that his little body just could not handle the feeds anymore. That part of the end of life process is your body shutting down, one function at a time. I remember the look in her face when she saw the light bulb go off in our heads, as she never once said or suggested we stop his feeds. I remember starting to ask, through many tears and a shaky voice, “How long…” before she stopped me. She knew what my question was but didn’t want to put me through saying it aloud. She answered, “It could be tomorrow, it could be a few days, or as long as a week”.

I remember these days so vividly. I remember thinking in that moment that this will all be over in a week. And by “this” I mean the daily hospice visits, the feeling of not wanting to close your eyes, or leave the room because you don’t want to miss his last breathe, the pain our baby boy was feeling. We were unknowingly ready to let him go, to be free of pain, regardless of the pain it caused us.

One year ago we didn’t want people (other than our family) to know we were stopping Broxton’s feeds. We didn’t think people would understand. And they may not have. They still may not. But after one year, I am confident enough in what we did, at the time that we did it, to share how truly difficult, yet peaceful, that decision was.

A week passed and we continued to enjoy every waking moment. It wasn’t until 12 days later that we would feel what a broken heart truly means. Broxton gave us 12 more days. He fought for 12 more, long, slow, amazing, peaceful, sad, joyful days. He was the toughest, bravest little boy I will ever know. One year can go by so fast, yet so slow all at the same time.