There’s this restaurant in our neighborhood. A little family-run Italian spot. They’re famous for their flatbreads and “gravy” (southern people, this is what Italian folks call “spaghetti sauce”) and wine. It’s small and dim, but the walls are painted a friendly yellow and there are giant pictures of tomatoes and eggplants and basil on the walls. Behind the bar, there are dozens of delicious Italian wines. You need a reservation on the weekends, but you can usually snag a spot at lunch.

It opened after I was in college, but it quickly became our family favorite. Graduations, birthdays, impressing out of town friends, girls night out – it was our special-occasion go to.

And I absolutely, steadfastly, refused to take a date there. Logic being, if I were to take someone there, and it were to end badly, I’d have to give up my eggplant rollatini and – god forbid – free birthday cannoli and tiramisu. Memories of a crummy relationship might taint the place, and frankly, it just wasn’t worth it. Some things need to be protected.

Because I told this to Preston shortly after we started dating, we waited until we were engaged to go to Bella’s. Sure, we got occasional takeout, and we both knew it was just a silly rule, but we stuck to it anyways.

When we got married, we had our rehearsal on the officiant’s deck and went to Bella Monica, just us two. We drank wine and ate so much food we could barely breathe. It was a really special evening.

Since then, we’ve been dozens of times. They’ve taken the eggplant rollatini from being a weekend-only dish, to one that is on the menu all the time. *Somehow the sauce tastes exactly the same and the tiramisu is just as perfect as it has always been. Every year around my birthday, they serve pumpkin ravioli with beautifully crispy mushrooms and pecans and wilted spinach.

Tonight, just before the short thunderstorm, I picked up our favorites and brought them over to hospice house. We opened the doors and ate rollatini and listened to the rain.

But, as I was cleaning up, it occurred to me that, despite my youthful efforts to keep Bella’s emotionally untouched, I’d failed rather spectacularly.

We saved our tiramisu for later. Hopefully he’ll be alert enough to really enjoy it. And I’m hoping that eventually, I can eat there again and find the familiarity and comfort a favorite restaurant can bring. In the meantime, I’ll enjoy this final date night of Italian food and hockey in this strange room with distinctly less charm on this occasion that is special in its own way.

*editor’s note – I was totally wrong about the bankruptcy and owner shift! My apologies!!

Hospice house is a gentle and caring place. Nurses and aids come by to marvel at Preston’s tattoos. The volunteers know my strict rules about visitors. The maintenance crew checks in to make sure the playstation is hooked up and working. The social workers say things like, “OMG I love your sense of humor.” Even the doctors wonder aloud about how we’re still so optimistic.

We’re still us. Still the little family that fights so hard for our good moments together. Preston still puts up with my “memory making” crafts with a glad heart – even though it’s brutal. Conor can’t help but ask to be timed to run laps around the labyrinth outside. I’ve made friends with basically everyone. And Preston is making jokes even in the midst of unimaginable pain and anxiety.

I think that is generally true, though of course, I only have my own perspective. But I think that even when you’re deep in crisis, you’re still going to be you. Your essence doesn’t change when the world around you does. You might have to re-center yourself more often, or need to be reminded to eat more than swiss cake rolls, or need chemistry to help you get through the day, but you’ll still basically show up the same way you always have. It might even magnify it a little bit.

There are a whole lot of people out there sending all of their love and holding us close and thinking about us a lot and thanking their lucky stars that they’re not in our shoes.

But look, you might be someday, and the foundation you’ve built – the person you are – that’s who has to carry you through this. If 2004 me had to show up and figure this shit out, man, we’d all be in a tough spot. (and don’t even get me started about 2004 Preston – that kid was a loose cannon.)

Our little family built our coping skills by practicing. By engaging professionals when we needed to. By prioritizing careers that gave us time to be together. By developing deep and real relationships with our family and friends. By being honest with one another about our needs. By supporting each other’s essence and hobbies and shortcomings. By sticking close most of the time and granting space when we needed it. By never ever – not once – forgetting that the only thing that actually matters is that we love each other.

People say all the time – maybe even once a day – maybe you’ve even said it – “I don’t know how you do it.” And the answer is that we’ve been loving each other and those around us deeply and it’s cheesy as shit, but it carries you. You can only ever fall but so hard. You build this structure of support coming out from every angle – family, friends, colleagues – and everyone shares just a little bit of that weight and somehow, you stay suspended.

Dear friends, know that we feel held up by your love and your deep desire to help. Know that your well wishes are not going unheard and that it is keeping us from sinking. Know that when your time comes to have to navigate the shitty stuff, we will hold you up right along side us and we’ll figure it out.

Be exactly who you are and make friends and laugh and keep moving and you’ll be OK.

The oxygen machine is off. I could let the thermostat get above 68 and turn off the ceiling fan. I can sleep with the lights off. My alarms for 10:30, 2:30 and 6:30 meds have all been turned off.

Preston made the very courageous and loving decision to move to the Transitions hospice house today. It became clear that his care needs were exceeding what we could comfortably provide at home, and he wanted our house to continue to feel like a safe space for both me and Conor.

The whole hospice experience has been strange, but mostly good. The people that we’ve worked with have been great – so thoughtful and empathetic and helpful. If you’ve never experienced it closely before, it’s worth knowing more about so maybe it won’t feel so scary for you if you ever have to deal with it.

Once you make the call, they come in and tell you that they’re taking your person off any “get better” medicine. It’s just a comfort game. It all goes through your insurance and they become your pharmacy and physician and mental health providers. They send a nurse out about once a week, and all sorts of other folks check on you. For us, the nurse practitioner was the one that did the “heavy” stuff – the “this is how long” and “this is what will happen” and “here’s what we’re going to do” stuff. She was a miracle worker. Got the drugs managed in a way that Preston really did have a solid 6 weeks of feeling pretty decent.

They also have a case manager who helps with stuff like getting supplies delivered. P’s been on oxygen a fair amount and also had walkers and tray tables and such.

But mostly, the care is up to the family. So, things like getting to the bathroom, changing clothes, getting clean, that’s on us. And I feel like I should have an honorary pharmacy degree trying to keep up with the dozens and dozens of pills. Dillaudid and Ativan and Dexamethasone all look remarkably similar. I got really excited last week when they brand of Dex they sent was green instead of tiny white pills. (It’s the little things.)

Friday, a nursing assistant came to help get P a shower, and that was our first big clue that we were turning a corner. His left arm was difficult to move, and it was hard to stand up – even for a few moments.

At first, I was vehemently against moving him to the hospice house. Like, maybe even a little angry about it. After all, “I CAN DO IT MYSELF” has been my personal motto since I was about 3 years old. Besides, our village is great. Jim and Erin help out a lot, dad is right down the road, Ray and Debora, Kevin and Brandy, Rebecca and Zach – and that barely scratches the surface! We could do this. And we would and it would be a privilege.

But P looked me in the eyes very sincerely and asked that I go along with him on this. And he was right – as he often is.

I find myself absolutely devastated that he is not here, and won’t be again. It’s heavy and hard. Every object makes me sad. I hate this giant bed. Picking out the right t-shirts to send with your beloved for his final weeks on earth is a certain kind of hell I wouldn’t wish on my worst enemy. Do I go with band shirts? Sentimental? Old favorites? Ones we don’t want to get messed up? (I went with a nice mix and I’m currently draped in his Comeback Kid hoodie.)

And yet, it’s a great relief knowing that someone else is making sure the pain meds are taken and meals are made. That he can maintain his dignity and get help from professionals to use the bathroom. That they’re 100% equipped to make sure that he is comfortable. He had an hour and a half long massage tonight from a massage therapist who volunteers once a week. He has a button to push for any needs and a pump for constant pain meds.

And I just couldn’t give him that here.

And he couldn’t give me the gift of just being able to hold his hand. To – for the first time in a long time – worry less about his physical being and more about just being.

I can take a trazadone tonight, get a good night’s rest with no medicine alarms going off, and tomorrow I can sit with him and we can talk or watch something or just be. And Conor can visit after school and tell him about his day and go visit the sheep in the pasture next door. And come home to a house that is quiet and warm and filled with wonderful memories. And a few of the really hard ones can stay down the road.

My husband is very kind and very brave. This is all so impossibly difficult. Somehow, he manages to keep doing the next right thing, and so will we.

Thanks to all of you for holding us so close these last few weeks. We feel your love and it means so much.

I’ve decided to invent a new kind of afterlife. I just don’t like the options we have presently.

Some place in the clouds with harps and robes and Christians definitely ain’t where it’s at. (no offense to the lovely Christians in my life, but I dig a little variety.) I mean, what do you even do all day? Harp is a really hard instrument to learn.

I used to sort of like the “What Dreams May Come” version – where you end up in some place that makes you happy and you can become whoever you want to be. It has potential.

And The Good Place is my all time favorite TV show and it definitely has its appeal. Jeremy Bearimy timelines, you go when you’re ready, plenty to do and lots to learn, Janet… generally pretty solid.

Reincarnation isn’t for me. Mostly because the idea of sentient beings being accidentally squashed or eaten or chopped down is just too stressful.

Generally, ghosts seem like a viable option, (side note: in my 4th grade spelling bee I misspelled the word “ghost” and it haunts me to this day and it’s my blog I can make a stupid joke if I want to.) But the problem with them is that they’re not always able to interact and are tied to a particular place or have to solve some mystery.

From a visual perspective, I don’t think you can come up with anything more stunning than what Disney pulled off for us in Coco. The colors! The celebrations! The neon glowing Alebrijes! Yes, please.

But a once a year visit? That’s just crap.

I mean, that’s the problem with all of these, and I can’t for the LIFE of me figure out why – if we get to make up all sorts of ways that explain what happens to us when we’re dead – that the all involve being separated from the people here on earth. This, to me, is stupid.

Humans have had great ideas of where we go! Stars (Ray and Evangeline anyone?), Valhalla, the underworld, planets, generic paradise, The Summerland – they’re all super creative. I mean, sometimes it gets a little dark and tortury, but generally speaking, we’ve had some pretty solid ideas.

But there’s no “I’ll always be with you” option, and this irritates me.

And so, I think there’s a real case to be made for a reinvention.

So maybe we take The Good Place but we add in some “Dia De Muertos” flavor where they can come down and visit. Or! This isn’t exactly the afterlife, but maybe we take the “Inside Out” concept where your people are in there helping you make decisions, bringing up good memories, providing guidance. Add in a ghost element here or there, with some physical haunting or the occasional “sign” that they’re with us.

But like, let’s build some framework around it, right? Because I don’t like the idea that I’ll have to stick around here another 30, 40 years before I get to hang out with Preston after he “passes on” so who’s to say I can’t just decide that “passing on” is for suckers and he’s actually just following me around? Maybe not watching *eveything, but just generally hanging out. Ghosty, but not stuck in a place.

I know, I still have some things to work out. I mean, who decides who gets to hang around? And like, what if they get bored? Can they hop around and visit other people, or are they just stuck with you? Can they interact with other people, and does it get crowded? Does the living person have to grant consent to be followed around or are they all just being invaded by rando dead folk? Is it a privilege? Punishment?

Look, there are a lot of pieces that I still need to figure out, but what I’m saying is that I really don’t like the idea that – whenever the time comes – Preston will be in one place and I will be in another, so I’ve decided that he’s staying here somehow and I’ll work out the details later.

Er, rather, “Transitions.”

It’s fine. I think. Everyone is nice. The first week was wild – someone coming and going all the time. Nurses, supplies drop off, social workers, medicine… it was just a lot.

Now there is something of a rhythm. Pain meds are managed and P feels pretty OK as long as he’s lounging in bed. Thankfully, it isn’t making him sleep too much, and we’re able to spend a lot of time together. We’ve watched a lot of Adam Sandler movies, old 90s classics, and Brooklyn 99.

Conor had a great Spring break with his cousins (what a blessing it is that he’s so comfortable with them!) and now that he’s back, we’ve found some evening routines that work. On nights he doesn’t have baseball, we heat up some of the yummy food either family or doordash have provided, and we pop something fun on TV and eat upstairs in our room. While C is at school, I’ve been working on a lap desk next to P while he watches TV. He’s keeping up with work and even taking meetings.

Somehow it’s hectic and very chill all at the same time? I’m not sure I can explain it.

It feels like we could just go on like this forever.

But of course, that’s not how this works.

So there’s a lot of administration of it all – auto-pays and subscriptions to cancel. Tickets for a planned adventure to Boston to sell. Discussions about finances, and which car to keep and how to distribute tools. Memory-making crafts to assemble and pictures and videos to take. Presents to buy and advice to give. And, oh yeah, we need to find time to have fun and say all the things and let people say what they need to say, too.

Alright. That’s all I’ve got right now. Season 4 heist episode is on.

Anticipatory grief is an absolutely bizarre and insulting piece of the human emotional condition. At best, it is inconvenient. At worst, abso-fucking-lutely devastating. 

I’ve been floating around in this space for a solid 6 ½ years, though I didn’t have the words for it early on. I was just as irritated by it then as I am now. I lamented to my therapist at the time – “But he’s still here! Why am I walking around imagining what it will be like when he’s gone?”

I get mad just thinking about it. Why do our brains feel the need to have a grief trial run? “Oh, let’s make sure she’s already invested in the proper waterproof mascara so when the time comes, she’ll be set.”

And it certainly can’t be, “Well, if we practice enough, then we’ll just be really good at it and it won’t hurt nearly so much down the line! We’ll be ready! Quick, she’s daydreaming about the next vacation – let’s remind her it’s not a given and that it can be gone at any moment! Queue the waterworks!”

Conor and I went to the River for about 24 hours last weekend, with the plan that Preston would join us for a couple of days. That didn’t work out, but those few moments at the River were incredibly difficult. I found myself sobbing and desperately digging through my purse to find more than the single emergency xanax I keep in the small zippered pocket of my wallet. (don’t worry – I now carry at least 3 at all times.)

It felt like watching a movie where someone keeps flashing forward. “Oh here’s the fishing rod he won’t use again, and the fancy filet knife that won’t be need and the granola bars that won’t expire until after he’s gone…” 

I hate the feeling of crying. It isn’t cathartic for me. I don’t like the way my breathing hitches and my face gets splotchy and my nose runs. And when I can’t turn it off, it just makes me angry and makes me cry even more. (side note: yes, I am aware that these are things I should probably work out with my therapist, but we’ve had more pressing matters of late) 

So I really don’t see why we can’t just save the grief for the sad bits. If grief is supposed to be helpful – to help us work through the trauma of losing a love one – let’s just let it serve its stated purpose, instead of trying to come on stage entirely too early. It’s rude.

If you were wondering how I was holding up the answer is, “Not that great!” but I’m getting a lot of solid sad practice in, so I’ll be an expert soon enough.

This is one of those posts I’ve been composing in my head for the better part of 6 ½ years, always sort of thinking I’d never really have to. But, here we are.

Let’s not beat around the bush. Preston’s cancer is no longer responding to treatment, and so we’ve made the difficult (but correct) decision to move to hospice care. The cancer has invaded nearly every part of his spine and he is very uncomfortable. He’s managing the pain with medication, and is still very alert and Conor and I are enjoying as much time with him as possible.

Hospice means a lot of things, but the best way I’ve had it articulated was in a conversation with the leader of Conor’s support group. She said, “This means our hope is changing, and our goals are shifting. We’re not focused on getting him better. Now our goal is to make sure he’s as comfortable as possible and able to enjoy whatever amount of time we have left.”

You’ve got questions probably. Here’s what we know:

1. He’s at home for now. As long as his pain is managed with pills, he can be home. The point at which IV medication is required, he’ll go to the Transitions Hospice house in Raleigh.
2. Conor is doing OK. He is fully read in. It was the most difficult conversation I have ever had. When we told him the scans had not gone well he said, “We’ll make the most of what time we have left.” It breaks my heart that he really doesn’t know life before Preston’s cancer. And yet I’m very grateful that he has built the skills to articulate his feelings, talk to therapists, ask for what he needs, and appreciate time when we’ve got it. What a remarkable kid.
3. I’m also OK. I’m leaning heavily on Preston’s parents and the Mann clan. We’re still very much in an administrative piece of this – getting nurses and social workers in, trying to get the right equipment, making sure the we have enough meds. When it slows down, I suspect my needs will look different. Work is a respite because it is a place to put my overly-active brain. My board and colleagues are incredibly supportive. I listen to a lot of predictable romance novels. Luna and I go on long walks. Preston and I are watching movies and TV we’ve seen before. I’m trying to remember to eat.
4. We don’t have any idea about how long.
5. No, we’re not asking for additional opinions or seeking alternative/additional treatments. Please don’t suggest them.
6. We’re not ready for visitors, and may not be. Thanks for understanding.

We’ve had a lot of requests about how to help. Thank you. Here’s the bit – it’s all pretty overwhelming right now. And I don’t even really know what we need. But, here are some thoughts:

• We’d love to capture your well-wishes, memories, reflections. But *PLEASE* don’t send them to our regular emails or phones. We need to engage with the content when we’re in the right headspace for it. The very best email is pscwillcox (at) gmail (dot) com. If you have a fun Preston story, please send it there. If you have pictures or videos, please send them there. If you want to send a resource, idea, or good wish, please use that email. If you have a specific note for one of us, feel free to put our name in the subject line.
• Please don’t send anything to our house. We do not need gifts or flowers. Cards are OK. But they better not be too sappy.
• If you’d like to contribute to our “Joy Fund” a friend set up for us, you’re welcome to do that. We’re using this to provide additional opportunities for fun, particularly for Conor. Games, movie rentals, craft kits, other experiences. No pressure – this is not a fundraising ask. We’re OK. But here’s the link: https://braid.co/p/v3f9x0mo
• Door Dash/Uber Eats/ Grub hub e-gift cards are all good, too.
• We’re not doing a meal train. It’s too much to coordinate. We’ve got several folks who are making sure we’re fully nourished.

I’ll try to keep this space updated. I promise to ask if we need anything.

It sucks mightily. We’re scared and anxious. We’re trying to balance “SAVOR EVERY MOMENT” with “DO THE THINGS” with “THIS MAKES ME FEEL SLIGHTLY BETTER” and it’s different every second of every day.

OK, that’s all that I have the energy for right now. More soon.

With love,

Sarah