Ten Years

Ten years. Ten years since I’ve looked into his beautiful eyes, touched his soft skin, tousled his silky blonde hair and have seen his sweet smile. Ten years since I’ve suctioned his trach, changed his diaper, done stoma care and emailed his supply order to Apria. Some of these things I miss desperately and some I do not miss at all. Ten years feels like forever ago and like yesterday. 

After Jack died, people would say to me, “he’s still here, he’s in your heart.” And I would silently yell into the void, “He’s not here! I don’t feel him in my heart! I don’t feel him anywhere!” Those first few years, the pain of his absence was deep and relentless and grief was incapacitating. Today, the tears still fall, my heart still aches and I live with regrets and guilt. However, the relentless pain has dissipated and grief has become my constant companion. Most of all, ten years later, I can finally feel Jack. I feel the warmth and presence of his spirit surrounding and guiding me. 

The most profound connection I’ve had with Jack since he died was on his 25th birthday at a live storytelling event in New York City last November that was put on by The Nocturnists and Bellevue Literary Review. I was among five people chosen to share their story about "Taking Care." When I was working with the coaches on my story, I expressed that I didn’t want my story to come across as a sad story. One of the coaches told me that she didn’t see my story as a sad story, she sees it as a love story. That she understood this without knowing Jack or me really touched me. In working on my story, I had to dig deep in the archives of my memory of life with Jack. I spent a lot of time reading through my blog posts and reflecting on the memories and emotions I shared through my written words. Composing an oral story challenged me to think and share my words in a very different way than when I write. My one-on-one coach was patient and kind and it was a valuable learning experience for me as a storyteller. 

The night of the event, I was hoping that I would be one of the first to tell their story so I could get it over with, but no such luck. I was number four of five. Waiting in the “green room” until it was my turn was excruciating. When my turn came, I walked onto the stage and looked out to a pitch black room. The only thing I could see was a bright light that shone on the stage from the back of the room. Despite it being a small venue, the faces of the audience weren't visible, which was probably a good thing. The story I told takes place in Jack’s room, on a difficult night near the end of his life. As I spoke into the microphone, looking into the blackness, I felt physically transported to Jack’s room. Every word came alive – the scene was real, the emotions were real and Jack was literally in the room with me. I saw him and felt him in a way that words can never adequately describe. For nine and a half minutes, it was just me and Jack in that room. 

I couldn’t see the audience’s reaction to my story, but I’m told there were tears. Mark shared these words with me a few days after the event: “the audience was instantly transported to a place few people can imagine and they will be better off because of it.” I’ll take his word for it because I don’t think I will ever be able to watch the video of the event once it becomes available. I will forever be grateful for this opportunity, not because I got to be on stage speaking to a live audience (an introvert and perfectionist’s worst nightmare!), but because I got to be back in the room with Jack. I got to lay in bed beside him, hold his soft hand and listen to music with him. It was surreal. It was pure, unconditional love. It was a gift.

(onstage at the Leonard Nimoy Thalia Theater in New York City 11/4/2023)

Jack is a force and he continues to pave the path forward for me. Every time I think that I’ve shared Jack’s story enough and maybe it’s time for me to hang up my hat and move on from being “Jack’s mom,” opportunities show themselves and things seem to fall into place. There are too many instances to mention, but what I will say is that I don’t believe in coincidences, I believe in the power of Jack and God - a team that has kept me on my toes and taken me places I never dreamed possible over the last ten years. I don’t know when the ride ends, but I will continue to take Jack’s lead, listen and say "yes" when the opportunities present themselves. And when the time comes that the opportunities cease or I feel that our story has reached its end, I will be okay with that. Jack taught me that I get to choose whether I live the life I was given as a tragedy or as an opportunity. Begrudgingly at first, and now with open arms, I choose to live life as an extraordinary opportunity. 

Thank you Jack. I love you, I miss you, I’ll see you again my beautiful boy. 

ONWARD