Funnily enough, Jude hardly factors into this first memory. Before the visitor policy implementation became impossible for us, there was a time when Ariel, my mom, and I were visiting Jude together. Ariel and I met in Jude's room as usual, and then when my mom arrived, Ariel retrieved her and brought her in with no problem. My anger wouldn't be so great if more stories went like this. But alas, that's a fight in progress for another time.
We were all there together. I can't remember Jude at all from that day. I only remember what we talked about once it came time to get lunch. I love my mom so much, but she struggles with a menu. Things my mom does not struggle with:
But sorry, Mom, you struggle with a menu. Ariel and I listed all the wonderful places to get lunch in the Longwood area: Pokeworks, Anna's Taqueria, Bon Me, etc. She just couldn't decide. We teased her and eventually took her to Time Out food hall, where she could be indecisive on her own time and not interfere with my eventual hanger.
I love this memory because it felt like an experience we would have had at home with Jude, in the Cape, or anywhere in the real world. Yes, we were in the NICU, but it was like we weren't. We were together doing what we always do—teasing Mom. And she was a good sport. I loved it. I honestly can't wait until Stella and Ruby are old enough to tease us for exactly who we are. I aim to be as good a sport as you, Mom. I love you.
Another of my favorite memories was the first time I saw Jude do tummy time. I was in the NICU with Jude, and we were jamming to Taylor Swift, our usual. Occupational Therapy (OT) knocked and asked to come in. Erin, who I'd met previously on the floor and a very kind gentleman with a beard whose name I can't remember, joined the party. We didn't lower the music a bit.
Erin, and let's call him Swifty based on his knowledge and adoration of the GOAT, worked with Jude on his therapy. They held objects for Jude to grab at and worked with him to rotate his eyes and body from side to side. They encouraged him to bring his hands to his center. They treated him like a real baby and helped him keep up with his neurological milestones. And he was good at it!
But the best part was when they flipped him on his belly to do tummy time. I couldn't believe it. I had no idea he could do that; he was allowed to do that, any of it. He had a G-tube, and everything about him was so delicate. Seeing Jude rock tummy time was just incredible. "Betty," blasted while Jude lay on his belly, holding up his head, flexing those neck muscles I didn't know he had, and bobbing his head side to side with the music.
On my last visit before Jude went on ECMO, I was relieved to find Judy as his nurse for the day. So many incredible nurses cared for Jude, but Judy was THE nurse. Jude and Judy were a hot ticket. Judy took fantastic care of Jude but also of me. This was the day of the visitor policy meeting. I arrived early and had over an hour to cuddle Jude before the meeting.
When Judy was there, it was the closest I ever felt to normal, like I was actually taking care of him. We'd always chat, and she'd fill me in and do all his routine care, but she also gave me space to care for him. Judy didn't hover when I lowered the side of his crib. She trusted me to change his diaper. She shouldn't have.
I only changed Jude's diaper a handful of times. Obviously, changing a diaper is not glamorous, but for a mom who can't take her baby home, doing ordinary parenting things with her baby is heaven. NICU babies have a lot of cords and lines connected to them, measuring breathing and heart rate. Jude also had a line in his belly to his G-tube that he fed through. Changing his diaper meant getting all those cords lined up appropriately.
On a previous, solemn day, I changed Jude's diaper. This was Ophthalmology Day. Until this point in my charmed life, I'm pretty sure I'd only ever changed Stella's diaper. She has a vagina. I didn't know there were special instructions for changing the diaper of a baby who has a penis. If you're scratching your head now, it's pretty simple; you point the penis down. But I didn't know.
So, on this very serious and hard day, Neurology came to see Jude in the afternoon and had the power to absolutely devastate us. Ariel was on a plane, NP Avery and nurse Sam were with me, and Beth, a member of Ariel's hive, was on the phone. Neurology inspected him, and Avery held him as he peed all over her. They eventually gave a reassuring report, and Avery, Sam, and I laughed as they taught me about penises.
Back to Judy's day. Because of Judy, I knew that Jude especially hated a poopy diaper. They are gross. I wish Stella hated them more. So, he pooped, and I changed him and resumed our usual position. I held him on my lap with my feet up so we could look at each other. Yes, I believe he could see and was looking at me. We could stay like this forever. Those moments were perfect.
Then Jude did the best thing ever. He had a poop of epic proportions. Maybe I'm a freak, but you haven't lived if you've never had a baby poop in your lap. It is hilarious and intimate. This one had both vibration, sound, and length. It was a doozy. I again stood up and brought Jude to his bed, and when I opened up his outfit and diaper, I saw a complete blowout. My previous diaper change corralled nothing. I yelled for Judy to help. She came in giggling and took control. We changed him and his bedding and got him in a new lewk. It was wonderful.
I love this memory because it makes me feel like a real mom. When you're baby lives in the NICU, it is hard to feel like that. You aren't responsible for his care, and your time with him is incredibly limited. You don't wear him, push him in a stroller, or breastfeed him. Nothing is normal. Having him poop his brains out in my lap was normal. It was amazing. It was funny and personal, and Judy was there to help me and share the experience with me. I fucking loved that blowout.
Only in writing this did I realize my best memories are ones that felt ordinary. The moments when I was a mom with my baby boy and the hospital decor slipped away for a moment. His lines didn't matter, and his critical airway wasn't at the forefront of my brain and conversation. If I reach down, I know that the exceptional times are important and meaningful to me, too, even if they make me angry-sad instead of happy-sad. Jude showed me what I'm made of; our legacy is only beginning.
I asked Ariel to remind me of some happy memories when I was overwhelmed with anger and sadness. Without blinking an eye, she responded, "Jude and I just had dance parties all the time." I said, "What about times when I was there?" In hindsight, I realize how lucky Jude and I are that he created all these memories with me and also independent of me. Ariel doesn't even remember the first story I wrote. But she has a trove of memories of Jude. My Mom probably remembers that day and probably remembers different elements of it. My mom also has so many of her own memories with Jude absent of me.
Jude touched so many lives. He had a huge life independent of me and my visits. I'd venture to say he had the most loved 109-day life of any human being ever to be on this planet. He was the best of us.
Now, I'd like to do something different. I'd like to ask for something from you, my readers. I want to hear your memories of Jude. It could be an experience we shared. It may be a feeling that Jude elicits in you, or maybe it is something I wrote that was important and memorable to you. I would be honored if you are willing to share your Jude stories with me. If you're willing to share them with others, I'd love to post them in my next update.
Here is the call to action. If you're so moved, write to me. Please tell me if you'd like to keep your words private or if you'd like to use my little platform to share them. It is 100% optional, and your continued support and readership mean the world to me. Thank you.
These are some of my favorite Jude pics.