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The morning after we heard the fireworks was our first morning without Joe. Lying in my room, in my bed, with my husband, breathing the same air I always had, surrounded by the same stuff as every other morning, I was completely lost. Time was shoving me forward against my will and my only instinct was to tear a hole in the universe to get back to yesterday. Time… “Reality…” It was paralyzing. I knew the world in an entirely new way now, a way that only a handful of people have ever known it. Nothing about the physical world made sense to me or comforted me. The logic of this world was brutally matter of fact, but the facts occurring in my life didn’t add up. Facts of this world could not explain what I had gone through. I had experienced something beyond the black and white, scientific, evidential, tangible-proof explanations of our experiences. The week I spent with Joseph revealed an entirely different reality from the one I had known for thirty-one years, yet here I was having to exist in the stubbornly unchanging, insufficient physical realm.

Our dear friend, Juli Thompson, came to the NICU to make these amazing portraits of Joe and our family. We are so in love with them and our family will cherish them forever.

That first morning at home was uncharted territory. I was suffocating in my body, my senses unable to reach the place where my child had gone. I wanted to believe the promises I had made before he left Chris and me, to will myself to focus on all the amazing miracles he brought us… but that morning I woke up mourning my physical loss. Being human was suddenly the stupidest thing to be in the entire universe. It was altogether lacking everything. I wanted to crawl out of my stupid skin. I wanted to scream at the top of my stupid lungs. I wondered if at any moment I would just completely and irreversibly lose my stupid mind. I looked around and saw all of my familiar things, but the lens through which I looked had changed. Permanently. I was, in a word, devastated. And I didn’t know how to cope.

Luckily, I have Chris. His steadiness eased me that morning, bringing me back into the reality we had already chosen to believe. It was still my job to be Joe’s mom, just in a different way than I expected. I was still his mom despite all of the things I didn’t have and didn’t get to do. I was still able to love that baby with all the fierceness of the entire animal kingdom. So that’s what I did - I got up and carried on being Joe’s mom in the only way I could.

I began by introducing Joe to every room in our house. I talked to the air as if he were walking right next to me. I took him through each space, explaining what we did in there, making it his. I thought that if I could make every inch of our home belong to Joe, it wouldn’t feel so empty and foreign to me but I would instead feel safe and at peace there. I showed him his room, our bathroom, the kitchen, even the front porch and backyard. I told him I would be looking for him everywhere I went, hoping he would somehow let me know he had found me. Actually I more than hoped it, I clung to the idea. I ached for a sign from him that was undeniably created for me, telling me he was home. Chris had already gotten his, now I needed mine.

Friends came over that day to hear our story and provide much needed company. It was while they were with us that I walked outside alone to let our dog, Griffin, out. I love our backyard in the summertime - we spend a lot of time out there eating, talking, dancing. The most significant thing about this space is that at night the trees surrounding our house are filled with thousands of fireflies, giving the atmosphere the most magical feeling. It is one of my favorite things about my house and I look forward to the fireflies coming every summer. Of course I told Joe about the fireflies while I was outside that day. It was the last weekend in May, so while there hadn’t been any lightning bugs out yet, I knew they would be coming out someday soon and assured Joe that we would enjoy them together when they did.

I painted this firefly piece in August 2016 in Cape Cod, MA

We had dinner at Chris’s parents’ house that night and came home after dark. I was outside with the dogs while Chris took care of some things inside, which was not our normal routine since I had just had a c-section. He had been taking care of the dogs exclusively since they can be a little energetic, but that night I felt fine enough to go out with them. I was standing in the driveway, not paying attention to anything in particular when I saw one firefly floating past me only a few feet away. ARE YOU KIDDING ME?! I ran after it, yelling/crying/exploding/trying to catch the little guy, but after only a few lights, it was gone. At that point Chris came running outside, concerned that I had injured myself or maybe had an emotional breakdown, but I was beside myself with joy and relief. Joe had given me my sign - I knew he had found me.

I can’t do the feeling justice by trying to explain it in words, but that moment was a turning point for me as a mother, as a woman, as a wife, as a human being. Somehow I understood that this human life is exactly where I’m supposed to be, even with all of its stupid limitations. I knew I was meant to be here while he was meant to be there… wherever that actually was. I could communicate with him, and that meant there was so much more to be discovered between us, and perhaps we weren't so far apart after all.

I live for Joe moments. They remind me to keep trying, keep loving, keep living. While I’ve learned how to remain in touch with him as time has gone on, this first Joe moment was a crucial, defining moment in my life, and it was only the beginning.

Joe on,


Photo 1: Juli Thompson

Photo 2: Aubrey Wallen

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