I was laying next to Ben’s body, gently embracing him, when Maddy rushed in to room 115 of the hospice facility, absolutely shattered to find that her brother had died and that she hadn’t been there. Her face twisted in pain with tears flowing and words choking out “I’m sorry! I’m sorry! I’m sorry I wasn’t here!” I wanted to take her in my arms but I was afraid to let go of what I currently had my arms around, because when that happened, it was going to be permanent.

I know I can’t make her understand now, but watching Ben die was incredibly painful. Those last few gasps. The raspiness of the congestion in his throat from those damn mouth sores. The oozing blood on his pillow. Watching his beautiful brown eyes fix into a stare that I cannot help but compare to a factory reset. His eyes rolled, then stopped right in the middle as the last breath left him. Like he had been reset. He was no longer breathing. No longer moving. No longer living.

And there was not a freaking thing I could do about it.

But I was glad that she was out of the room when Ben left. Matt was there to hold her close as her sobs grew louder.  I continued to lay next to my dead son, gently touching his quickly cooling skin and counting the freckles that I had counted a bazillion times before, trying to commit them to memory, because I knew at some point, they would take him away.

I don’t know how long we were with him, but they gave us all the time we wanted. We kissed him, held his hands, smoothed his hair. Knowing this was going to happen. In denial that this just happened. How are we going to carry on now that this has happened? 

We finally told the nurses we were as ready as we were ever going to be to leave our Ben. They asked us to step out of the room so they could prepare Ben’s body for the funeral home to come collect him. We waited in the lobby by the nurses station. I knew they were changing him into a Nintendo shirt and some comfortable pants that Matt had picked out, but the only other thing I can remember is that my body was trembling. The adrenaline was making it too difficult to stand still but too challenging to move with any grace. People said things. I don’t remember. My eyes were glued to the door of 115, waiting for the stretcher to come out with my son’s body.

When the door finally opened, it did simply look like he was sleeping, but with each wispy fluff of the newly growing hair smoothed down like a little old man getting ready for a date. I couldn’t step closer to the stretcher. None of us did. We just looked at him from where we were standing. Like he was asleep and we didn’t want to disturb him. They were just taking him off for a little rest. At least, that’s how my coping mechanisms allowed me to process this.

The woman who came from the funeral home to collect Ben had him covered with probably what was standard funeral fare, but it looked out of place on Ben. It was a very heavy formal looking blanket, but it was easier to focus on that out-of-place blanket than it was to make my mind accept that my son’s body was beneath it. It was all so out of place. She started to gently wrap Ben’s face up in the sheet while we were all gazing at him and the hospice nurses all gave a collective head shake of “NO!” She quickly removed the sheet with a slight look of embarrassment that she had done something wrong.

Something touched my heart though, that this must be her first collection of a body, at least with family watching. And that soothed me somehow. This was my first time going through this, too. I’m not quite sure how to do this correctly either.

I think learning how to do this is going to be a life-long process.




Join the Conversation


  1. Sarah ,there are just no words… Sending love from Isle of Skye . Thank you for sharing your inner beauty ,tears and courage .


  2. Your words are heartfelt and heartbreaking. You have opened my eyes through your words and made me see that so much of my own experience with my own son fighting this horrible disease and subsequent end that maybe I am not as alone in all my feelings as I had thought. You bring me immense comfort and for that I am forever grateful. My son’s name was Terry and he was a beautiful red head with freckles too. Much love and peace to you.


  3. Sarah, it will be 5 years on December 10th. I’m still learning how to do this! My heart breaks for both of us. I think of you often and ask GOD for peace.


  4. Thank you for sharing your story you are truley a amazing mom im so sorry you had to go through this i lost my mom and dad to this evil disease Pleses just keep your head up sweetie


  5. But Maddy was there for him, waiting on duty like a sentinel. That his last breath slipped by her and she didn’t see is something neither of them could help. That was due to the flesh, not the spirit. The spirits were all together.


  6. Oh how I wish I was there to hug and hold you tight. Love 💗 Hugs and Prayers always coming your way.


  7. Oh how I wish I was there to give you a big hug- just remember we are all still here to listen and read through your pain. Love ❤️Hugs and prayers always


  8. There is nothing I can say to make this better but I so want you all to know that Ben and you all made us better human beings. Yes, Ben accomplished that and more even tho he was struggling to live. He lived better than most of us. He made a difference in this world. I’m 63 and I’m not sure I’ve managed to do that yet. God bless you my friend and thank you!


  9. There are no words my friend, even from someone who’s been through it. All I can say is that I’m sorry and that I love you.


  10. I ache for you all right now! I am so personally thankful that you shared your last moments with Ben with your Facebook family. As gut wrenching as it was to read, it felt important to me to know what you & Ben went through. I am so so sorry! 💙💚💛


  11. Hi Sarah I read most of your post about Ben’s and your family’s journey, and I don’t have enough words to tell you on how sorry I’m to hear that Ben’s is no longer here in this world with us. I hope that you and your family finds the peace and acceptance of whatever it is that your souls need to heal and continue. As a mother I’m with you in your pain and admire your strength. God bless you.


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