Here are a few lessons I’ve learned over this Pandemic Thanksgiving + start of Covid Christmastime: On the Wednesday before your it’s-just-us-this-year Thanksgiving, it’s really nice to cook the big meal with your kids while also not stressing about cleaning the house for company. …
I was talking with my brother, Paul, sister-in-law Sarah, and David this week, when Sarah and I got to chatting about writing. She’s diligent, writing 500 words every morning at her computer before starting her work day, and it impresses me. (She also walks miles …
I thought maybe I should spare you an update this week, because I’m in a crappy, crappy mood (a friend asked Sunday how Mom was doing, and do you know what I said? “Oh, she’s totally dying.” The poor guy looked like I’d slapped him in the face). Mom has been declining again–no sooner did we pull her off hospice than she started acting like, well, maybe that wasn’t the best idea. She’s grown progressively weaker, and has become just sort of older-seeming. (This cancer of Mom’s likes to keep us on our toes, but I much prefer the happier surprises, you know?)
On Saturday, David and I had made plans to take the kids to see Mom in the afternoon and have a movie day. The kids were excited–they’d settled on Jumanji, because “cake makes me explode!”–and Mom had been looking forward to it. We went tumbling into her house around 2:15, a big bowl of freshly-popped buttered popcorn in hand, but Mom was nowhere to be seen. The house was quiet, and I could see a tray with an empty coffee cup and bowl sitting on the counter in the kitchen, so I knew she was alive (you’d have wondered the same thing). I found Mom upstairs–she hadn’t yet made it out of bed, though she was dressed, and her caregiver was with her. Mom was propped awkwardly on her pillows because she couldn’t support her weight, but her feet were on the floor. Her hair was a mess, and her eyes were barely opening, but she was chatting with Mary on the phone and laughing at the expression on my face. She couldn’t understand why I was so alarmed. Her caregiver, a kind woman who fills in on some weekends, was clearly overwhelmed–she hadn’t known what to do with her. The children, who’d come up to say hello and give her a hug, were shocked. I’ll never forget the look on Quinlan’s face–I’d forgotten that they’ve only seen Mom sitting up and ready for them.
It turned into the strangest afternoon. Another caregiver, one of our most trusted ones, came in to start her shift, which I’m not ashamed to admit was a massive relief (David and I were struggling to get Mom toward the bathroom at that point–he was afraid of hurting her and I just didn’t know how to maneuver her well enough. Mom’s usual caregiver came in and in two seconds managed to complete what we couldn’t in 20 minutes). We took turns hanging out upstairs with Mom as she tried to muster the strength to come downstairs, until we all finally gave up and wheeled her into my tiny old bedroom around 5 p.m., where she could watch the small TV she keeps in there. The kids looked at me and whispered: “Does this mean we’re not having a movie day?” Instead, David got take-out and we all crammed into the room with her to have a picnic in front of HGTV–it was Love it or List It, and for once, we all liked the couple’s old house better. Mom’s caregiver curled up on the daybed to chat while the kids and I wedged in beside each other on the floor (prayers may have been said that Quinn and Cian didn’t start throwing elbows), and David retreated back to the living room to give us a bit of space. Mom was in great spirits, considering the circumstances. The rest of us pretended to be.
It will surprise no one to hear me admit that things have fallen apart. We got an email from Quinn’s teacher that even though she’s been pulling in great grades, she’s become more disorganized, and more easily distracted. We’ve had issues with Saoirse very recently–some sneakiness, some attitude–that would seem characteristic for any 12-year-old except that they aren’t characteristic for her. The little ones have been struggling with sleep again, and have nightmares when they do. Quinlan’s nervous stomach pains are back. When we sat down with Saoirse last night to talk with her about her behavior, she broke into tears: it’s Grammy, she said. “I’m so nervous about Grammy.” And then David and I were on the couch with our arms wrapped around her wondering how the heck we’re supposed to take away the pain of a grieving child when we can’t handle it ourselves.
I’ve told David that I think I hit the emotional wall in December. We’ve been running and running headlong through this with my mom, and I just…hit the wall. I don’t know how to explain what that means other than, I suppose, I’m exhausted. I spent the first 14 months after Mom’s diagnosis struggling with the fear of losing her, and the worry about those sudden phone calls, and trying to manage All the Things–the kids, the mom, the paperwork, the phone calls, the bills, the scheduling–but with that horrid panic that ran through it all. All of those Things are still there, of course, but now it’s followed not by panic, but by the fatigue that comes with knowing what is inevitably coming soon: we’re here. We’re nearing the end of the road, and I’ve resorted to snarky comments to well-meaning friends. Because now I’m turning to my aunt, who is struggling with all of this, too, and David, with whom this marriage has seen much better years than the past one, and to our poor kids, and I’m realizing how this watershed has taken out more than just me. Saoirse isn’t just handling fear and grief: she’s struggling with the lack of routine, the tension that builds and breaks in the house, the constant sense that everyone is on edge. Her life, too, got flipped upside down in 2018: her mom is away from home a lot, there were no more vacations, no planning ahead, and her dad is stressed out. And it’s easy for David and me not to notice it because she’s a kid who tucks it all inside and, as the first-born, is trying to keep things perfect so everyone stays happy.
This is all kind of like an earthquake, maybe: the house has stopped shaking, but a lot of stuff is still falling off the walls.
David and I sat beside Saoirse on the couch last night, our arms wrapped around her. I asked her: “With Grammy, are you scared about how it’s going to happen, or sad that it’s happening, or all of the above?” Saoirse had her head tucked into my chest, and I felt it nod. “Yes,” she said. David looked at me over the top of her head, and I saw what he wasn’t saying: a) this is the hardest parenting thing we’ve had to do so far, and b) we’ve got to do a better job of it. So add that to All the Things: helping your own parent die in a way that’s graceful enough to make sure your kid knows that, no matter what, she is still safe and loved and that her family will be okay through all of it.
Man, this is hard.
Paul and Sarah come in later this week to be with Mom for a couple days, which will be a wonderful. Mom has a big scan tomorrow with a follow-up with her neuro-oncologist right afterward. I can’t imagine we’re not going to reevaluate Mom’s Avastin treatment–the cancer center is refusing to give her another infusion unless she gets surgery to get a port (her veins are too weak for an IV), and we need a hospital bed back in the house immediately, which can’t happen easily without hospice in place–but I’m certainly not going to volunteer that she stop it. Because as much as I’ll say that I think we’re almost there, Mom has surprised us before.
I told you she keeps us on our toes.
I’ll keep you posted, friends. David and I took a break yesterday from work (him) and Mom-related phone calls and emails (me) to take a walk with the dog, and we found ourselves, as we often do on these walks, making daydreamy plans about the future. It seemed almost like a reckless act in the face of what we’re living in right now, but the sun was shining, and the air was warm, and Mary and Tim were with Mom, feeding her homemade cookies and trimming her hair and keeping her company. Things may fall apart, but I think we also find a way to stitch them back together, as best we can.
My hope is that our kids will grow to realize this, too. That Saoirse and Quinlan and Cian will know: even in loss, the family left behind will be okay, together. And even when the stuff is falling off the walls?
We’ll catch them.
* Because you know this was running through my head the entire time I was writing this post. To say my mom has rebounded from the flu nicely is like saying an ice cream sundae is best made with hot fudge: holy understatement, Batman. She …
SO. Let’s catch up, shall we? Quinlan, our second kiddo, is in 4th grade, which is The Project Year in her school, aka The Year That Just Might Do In The Parents Yet. One of the fall projects she was assigned involved visiting a place in Pennsylvania as a tourist, and her teacher sent out a list of options that ranged widely in distance and cost. But you know how life goes: by the time I got to the online sign-up sheet (The world of online sign-up sheets is cutthroat, man. Other parents make me nervous), all the cheap/local options were taken, so I started eyeballing two other places that have been on our family’s “wanna see” lists for a while now: Fallingwater and Longwood Gardens. When I broached the ideas to Quinn, who really just wanted to go to Hersheypark and call it a day (ALL READY TAKEN, QUINN), she asked which choice would be one at which her Grammy could join us.
Fact: Fallingwater is stairs upon stairs in a wooded forestland. Problem: my mom is in a wheelchair. Conclusion: Longwood Gardens, here we come.
We chose Columbus Day for our adventure, solely because our weekend days are now consumed by Soccer Saturdays and Church with Grammy Sundays and sometimes Oh No It’s Tournament Weekend for Both Girls Help. But: the weather was beautiful, David and my uncle Tim (he’s the husband of our Aunt Mary) took off work, and I arrived at my mom’s bright-eyed and bushy-tailed (that is: bleary-eyed and completely panicked about how this day was going to go) at 9:15 to pick her up. She was only halfway through her coffee before I shuttled her out the door (Longwood Gardens has timed entrances, people. We had places to go!), and the poor thing spent the entire day wondering where we could find a Starbucks.
Now, keep in mind this: Mom had a fall just three days prior, and it was a doozy. Her back was all scratched up and bruised, there was a cut on her face from where her eyeglasses got knocked into her cheekbone, and she was sore from head to toe because she has basically no muscle left to absorb a fall. But if you know anything about my mom by now, it’s this: a) she’s a trooper, and b) if there is an event that involves a meal served by someone else outside of her own kitchen, she is IN. So off we went.
It was a good day, friends. I mean, it was a long day, and even simple tasks like getting Mom from a wheelchair into our minivan makes me break out into a flop sweat because she’s so weak we kind of have to act like shoehorns to get her wedged onto the seat. And David and Tim and I were taking pictures left and right because this, I think, was a day to remember. At one point, after seeing one plant too many, Quinlan turned to me with a scowl: “Why are we even at this place? I didn’t want to go here.” I didn’t mean to snap back, but I said to her, “You wanted to go to a place where Grammy could get around. That’s why we’re here.” I didn’t want to lay a guilt trip on her–but this day was good. Yes, we only saw half the grounds, and yes, we had to stick to the paths that were wheelchair accessible. But their cafe–while expensive enough to make me wonder how badly we needed to pay for next week’s groceries–was delicious, and the conservatory was gorgeous. Plus there was a really neat water show at the fountains, and my mom got to talking to a guide who showed the children a cool water-based plant that recoiled at touch. At the end of it, Saoirse was on board: “I want to go back. There’s so much more to see there!” And she’s right. I want to go back, too.
As for Quinn? I don’t think she was in the mood to answer the question.
Mom, a few months ago, was raring to travel. She wanted to go to the beach. Take a cruise. Take a trip to Disney World, which she’s always wanted to do for the kids, who only this year have expressed an interest in it (read: Star Wars). But she wasn’t (isn’t) strong. Every place we researched seemed impossible for somebody in her position. And it broke my heart with guilt pretty much every day of the summer because we weren’t doing something.
But last week, we went to Longwood. And afterward, to a brewery (food not so good, but Mom liked her beer, so what can you say?). And my aunt and uncle graciously took her back home that evening from our house so we could tuck in the kids on a school night, and when the caregiver called me with the regular nightly update she said my mom was so happy because of her adventure with us.
This is all a heart break, I’ll be honest (David recently said to me, “Your posts haven’t been so…funny lately.” I WONDER WHY, DAVID). But there’s such joy in it, too, I swear: each of our kids vying for a spot to push their Grammy’s wheelchair around (“It’s MY turn! You already got to push Grammy!”). My uncle snapping pictures left and right. Me, turning around to see David leaning over to hear something my mom had to say. The kids, all bent over a pond with their aunt, rapt as a guide explained how some plants, like the touch-me-not they saw, defend themselves from harm.
Here’s what I’m learning: to go with it. To trust that I’ll know what to do when the time comes to do it, but for right now accept what is, if that makes any sense at all. To buy stock in Bio-Freeze because that stuff is amazing on the tired old knees of ladies with brain cancer. To tell myself that I’m doing my best with taking care of mom and the kids and the family and the groceries and that it’s okay to not be perfect, and that it’s okay to be sad. To remember that David is here for me. To be grateful that my mother-in-law will let us know when it’s been too long since we’ve seen her (I’m totally serious about this–she’s so patient and not nag-y and dear golly does she have reason to be), which snaps us out of the bubble a little bit. I’m also learning that: a) the kids are totally capable of staying on top of their laundry when Mom and Dad can’t, b) grocery delivery can be bonkers expensive but sometimes worth it, c) family members with cameras are the best members of all, and d) every road trip with three kids, one lady with brain cancer, and four overwrought adults should always end at a brewery.
That touch-me-not plant we saw? Mimosa Pudica is its proper name. We learned that it closes up on itself when a threat comes along, retreating, but after a moment or two opens back up again, same as always. You don’t need me to explain the metaphor.
That is all. We did it.
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