Un-Nesting

Brady loved waffles, so much so that he named his pug Bucky Waffles. I still have his favorite waffle recipe taped in our kitchen cabinet.

We had so many lasts. The problem is, you never know when you are experiencing one.

About eight weeks before Brady died, I changed his G-tube button. There are multiple pieces involved in a G-tube. The button is the small, surgically placed port on an abdomen; Brady’s sat on the left side of his stomach. They deteriorate and need to be changed about every twelve weeks. He hated having it changed, but it was a necessary ritual. They got leaky if you waited too long.

I used to take him into the office until one day the doctor looked at me and said, this is ridiculous. You are completely capable. I’m going to teach you how to do this, it’s like changing an earring! And you know what? It is, somewhat wildly, a bit like changing an earring.

Still, Brady dreaded it. I dreaded it because he dreaded it. It was uncomfortable because it was also not at all like an earring change. But it was undeniably easier at home: quicker, less buildup, just the two of us. And if it plugged (which it occasionally did), we could replace it without any emergency drama.

Once, he got so tense in anticipation of the switch that when I pulled the old tube out, he clenched his stomach and gastric juices went flying across the room. I screamed. His eyes got enormous. I shoved the new button in while we were both sweating and, if I remember correctly, swearing like the scene in A Christmas Story. When it was complete, our eyes met. We dissolved into laughter. That was our rhythm: endure something awful, then find the absurdity in it.

The last time I changed the button, it felt so ordinary. They had adjusted the size; he had grown, and it seemed slightly too long to me, but it was an easy switch. I told him by the next button change it would fit better. I had no idea it was the last time we would do that together. There was no swelling music, no whisper from heaven telling me to pay attention. Just another Tuesday task in a life full of Tuesday tasks.

We had so many lasts like that. The last corn maze. The last time he roller skated. The last time he laughed at Jim Carrey. The last time I tucked Bucky onto his lap and helped him scratch his pug. The last time I kissed his head goodnight.

It is probably mercy that we don’t know when we are living a last. But as I’ve been sorting through his things, I spend a lot of time thinking about this topic. When I was pregnant, I used to aggressively nest; scrubbing baseboards, reorganizing drawers, preparing the house for new life. I can still remember how strange it felt to wake up desperate to clean and prepare. This feels like the opposite of that. It’s more like un-nesting. Not making space for someone to arrive, but making space for their absence. Sometimes an un-nesting window opens, and I feel capable enough to address the things I willfully walk past and deliberately ignore.

His fingerprints are everywhere. In the obvious places: the drawer that once held syringes and feeding tubes, the cabinet lined with supplements, the shelf where I kept ingredients for his food. But also the corners that can ambush you: neck pillows to keep his head upright stashed out of sight, a laptop under the couch, a hospital bag in the basement I had not opened since the morning he died.

I don’t want his fingerprints erased. Brady is stitched into the fabric of this house and into our lives. But some of the objects he needed were never really him. Some of them were just what he endured. We decided early on to keep his room and his treasures intact, but to slowly remove what we have dubbed The Villains: the equipment that marked his decline more than his personality.

This week, when I felt an un-nesting window crack open, I decided to remove some villains. I started with his Tobii Dynavox, a fancy eye-gaze speech device. This is essentially a mounted tablet that allowed him to type and speak using only his eyes. In theory, it was supposed to be his voice. In practice, he found it exhausting.

Moments after our unsuspecting physical thearpist showed Brady where to find “body parts” on the speech device.

Brady personally chose most of these phrases.

Using your eyes as your only reliable muscle is brutal. Jumping page to page searching for vocabulary required a lot of brainpower and made him tired. He wanted conversation, but the device felt like work. By the time it finally arrived, after the obvious insurance fight to secure it, he only had a few months left with us. He had wanted it desperately. And then, when it came, he was just too tired to use it.

Still, we programmed it with some of his favorite movie lines: You’re embarrassing me in front of the wizards. I will take the ring to Mordor, though I do not know the way. It’s forced conformity that’s killing the kids!

And, by request, we created some insults aimed at his sisters. Mostly though, when people came over, he would go straight to one word. Penis. Penis penis penis penis penis. Any time I tried to demonstrate how the unit worked, that was the word he chose and would hit it on repeat until I turned the volume off. Then he would laugh so hard he’d trigger a breathing episode. This was classic Brady.

After he died, it sat next to his chair for a while. Then it moved to the basement. But our washing machine is down there, and every time I saw the speech unit, I wanted to throw it against the wall. Not because I didn’t value it; I was actually very grateful for this machine. I just hated that he needed it. I hated that his voice had to travel through an iPad. And I hated that insurance once required me to demonstrate why he needed it; as if a giant wheelchair and a motionless, voiceless body were not evidence enough.

Anyway. I didn’t throw it at the wall. I passed it on to a little girl, and Brady saved someone else an insurance battle with this donation. And it felt good and also made me cry when we drove away.

I also decided to tackle his G-tube drawer. It was still filled with little extensions, medication syringes, and odds and ends like little plungers to unclog rogue strawberry seeds. The syringe from the night before he died was still attached to his final extension. A bit of water was still clamped in the line. I had given him baclofen before bed, assuming we would spend the next day watching Lord of the Rings. Instead, it was the last time I used his G-tube. Those lasts, sneaking up on me again.

Our pantry was always stocked up on basics for Brady’s blended food. Coconut milk, pumpkin, chickpeas, coconut oil, brazil nuts. And so much peanut butter. Brady loved peanut butter. Even after he couldn’t eat, we had a rhythm. When we reached that aisle at the grocery store, I would grab a jar and place it in his hands. He would hold it while we shopped, probably imagining the day he could eat it again. He always wanted to hold it, so we bought one every time. We don’t need that much peanut butter anymore, and I gave six jars away yesterday.

The freezer still held bags of G-tube food I had made just before he died. I had so many systems; thaw schedules, inventory management, backup supplies in case the power went out. As a result, we had bags of food stashed in several freezers. Throwing it away felt awful, so it just sort of sat there. Finally I decided seeing it every time I opened the freezer felt worse. So I left it all on the counter the other day, knowing I would forget about it, which I did. By the time I remembered, it was thawed and ruined. That made it easier to throw away. Brady had watched Return of the King in the kitchen while I cooked that batch of food. I always made each dog a plate of lamb and sweet potatoes, which they ate when we were done. The dogs loved G-tube food day. I had no idea it was the last one.

There’s a children’s book we used to read called Let Me Hold You Longer by Karen Kingsbury. We loved it and read it all the time when my little trio was small. I can still recite most of it. We celebrate first steps, first foods, first days of school. But what about the lasts? The last time they ask to go to the park. The last time you comb their hair. The last time they crawl into your bed. It asks, over and over: Would I have held on longer if I’d known it was your last?

I had a massive home library when my kids were little. During an earlier un-nesting season, as toddlerhood made way for grade school, I let most of the books go. But I kept that one. The book ends with a prayer: Let me hold on longer, God, to every precious last.

I didn’t know. None of us do. And it is probably mercy that we don’t. Because if I had known, I might have tried to grip everything too tightly instead of simply living it. But isn’t this how it works? We arrive empty handed. We leave empty handed. The equipment gets donated. The drawers empty. The peanut butter is given away. Only love is permanent.

If nesting is hope for the future, then un-nesting is trust that we will be okay. Trust that letting go of what he endured does not mean letting go of him. Trust that I loved him fully inside every ordinary Tuesday. Trust that even without knowing it was the last, I was already holding on as long as I could.