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As I approach Joe’s third birthday, I’m accompanied by some almost-forgotten-but-all-too-familiar friends. I used to wake up on the mornings I would go see Joe with a delicate millisecond where I was just me, the person I had been before him. Then the light inside my head would flicker on and the weight would settle in, a lead blanket covering my throat, chest, and entire front body. I wake up with the same feeling now, wishing desperately none of it was true. I want to pick up this awful weight of sadness and anxiety and throw it to whomever is willing to catch it. Simultaneously begging for a break and knowing I’ll never, ever get one.

When I was pregnant with the twins and through the year after they were born was a period of something resembling a break from that feeling. Up until very recently, I was something other than just Joe’s mom. I had so much right in front of me to think about and take care of, I was less aware of my grief. I grew into a new role that was so encompassing and engulfing that I just allowed it to take me wherever it went. Joe moments were definitely more sparse, and that made me a little sad. But looking back now, I completely understand why that had to happen. I was not only too busy to sit around looking for signs of Joe, I didn’t actually need any of them. I was in a season where I needed to hunker down and protect my new family. In protecting and caring for them during the first year of their life, I was living my highest good. And Joe responded accordingly.

Now, the twins are 18 months old. They are able to understand everything we say, and they download the feelings behind our interactions. I’ve often thought of how much to talk with them about Joe, how much to tell them of his story, and what I want them to grow up believing about him. However, what I’m finding out right now as I begin to introduce them to his photos and videos and stories is that they already know him.

In the past, I have simply listed Joe as one of the many people who love them as they wind down for bed. I have said that Joe is their brother and he loves them and protects them. But a few days ago, I started actually talking about Joe, who he is, and showing them his picture. I pulled a picture down from their shelf to show Joe and me together, and the response was interesting. They pointed to both me and to Joe, which is their way of asking for the names of each person. I asked them if they knew who Joe was, and they both told me they did. I get that they probably didn’t know what they were saying, but I truly felt like they understood who I was talking about, and that it wasn’t all that abnormal for me to be asking. Like Joe was someone they already knew about and were familiar with. Who’s to say they did or didn’t really know? Either way, I decided it was appropriate to bring out more pictures and see what happened.

While they napped I laminated 4 pictures of Joe for the twins to look at. In the past, they have loved having pictures of their cousin, Jack, to carry around, so I set them up to do the same thing. When they woke up from their nap I showed them two of the pictures and the response Brooks had was pretty incredible. He immediately started kissing and hugging the picture. His interest in these pictures grew and grew over the course of the day and he actually started saying, “Joe.” Now, when he leaves his room, he puts both of Joe’s pictures in his bed and they’re the first thing he goes to when he comes back in.

Along with my sudden and undeniable gut feeling to give them more of Joe that day, during that same nap I decided it was time to finish Joe’s baby book. The summer after he was born I searched and searched for the exact right baby book - one that brought me joy. I finally found one that I loved and the woman who made them actually made it custom just for us so that I could tell his unique story in a way that I could cherish forever. This baby book brought me so much joy, just carrying around the blank book was enough to keep me happy for weeks. Writing in it, though, made me so anxious. I felt like anything I wrote would ruin the whole thing and I would no longer feel so magically about it. I remember when I first wrote his name in the book and it was like I had ripped the halo off an angel. The more I wrote about his actual life, the less I wanted to share and display it. I have been so focused on protecting Joe’s dignity and preserving his spirit that somehow putting all these photographs of him into a book and having to write words about them made me feel like it was a huge disservice to him. So I stopped. I stopped even touching the book for over two years. I even contemplated throwing it away, pretty convinced that I would never feel joy about it again. Then suddenly, after over twenty-four months, I knew it needed to be finished and I knew how I was going to do it.

I pulled out all the photos and fancy pens and tape I had gotten to make this keepsake three years ago, and without thinking too much I just started creating. I picked a photo, glued it down. I picked another photo, glued it down. And soon, I had made over 10 pages of a book I was completely crippled by for months and months and months. I realized I was the keeper of Joe’s story. A story so many other people have heard pieces of but would never fully know. As the story goes on and adds new characters and conflicts and resolutions, the beginning events almost blur away. It’s up to me to keep that story fresh, so that Brooks and Reagan can always come to it whenever they want to, so that they can make whatever meaning out of it they need to through every season of their lives. I had to write Joe’s story in a way that his twins could understand. It’s not for me or for Chris or anyone else; it’s for them.

Now that it’s done and I know its purpose, I am happy I took such a long break from it after all. There was a reason it felt wrong to write the date he was released from the NICU or to choose “milestones” from the NICU when they all ended up with the same ultimate conclusion. It just felt weird and forced for so long. And now, it’s a beautiful and respectful picture story for Joe’s twins to read whenever they are ready.

In a very real way, Brooks and Reagan have reawakened my Joe’s Mama-ness. They’ve reminded me that I am not only “Mother of Twins” as Chris likes to call me, but I’m also the mother of a child who didn’t live. He wasn’t meant to live, but this world does not understand something like that. I’m still figuring out exactly what it means in my life, and all the things I can’t yet see or know and have yet to happen will no doubt shape that meaning for me over time. But in this moment, in this season, I am exactly who I found myself becoming three years ago. When I was first learning how to be this person. All of those heavy, impossible truths are resurfacing, and I am ignited in my heart. Something great will come from this, I have just to follow the feeling as far as it will take me.

Joe on,



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