Tag: suzanne

Cookies and Creativity and the Quarantine Slump

Cookies and Creativity and the Quarantine Slump

Okay, at this point of quarantine, you’re in one of two camps: #1: You are a person who’s settled into this “new normal,” and are content and calm. You’ve weeded the flower beds, laid down fresh mulch, and are considering a fresh coat of paint 

Easter During a Pandemic: Well, That was Different

Easter During a Pandemic: Well, That was Different

Quinlan was in my bathroom Sunday morning as we were getting ready to go see my mom. It was Easter. We’d giggled over the baskets and laughed through the backyard egg hunt and baked and eaten the Resurrection Rolls, but we’d also watched a lot 

Coronavirus: He’s the Only One Calling this a Vacation

Coronavirus: He’s the Only One Calling this a Vacation

So here we sit, in the middle of the apocalypse (Kidding, kidding! It’s merely a terrifying plague!), wondering if this is what Orwell had in mind when he began writing fiction–no, not Orwell! Our present crisis is too scientific for Orwell. Maybe the guy that wrote The Martian? I don’t know. All I do know is that tomorrow’s literary agents better prep themselves for lots and lots of dystopian novels coming their way, because the writers of today suddenly have a LOT of time on their hands to produce–that is, if they can snap themselves out of their shock-induced paralyses to put down the bag of potato chips and write.

Did you do your panic shopping? I was looking for lentils at the store a couple weeks ago because the internet told me I needed them, and ended up buying cans and cans of garbanzo beans instead. What am I going to do with this many garbanzo beans, you guys? It’s not like I can make hummus–the internet didn’t tell me to panic-buy tahini.

I have to hand it to many of you, because from the looks of the yards my neighborhood, you thought ahead when this all started and raided Lowe’s for gardening supplies and DIY projects. I’m a bit jealous, but only a little: I, too, had thought ahead and spent my precious moments raiding the state wine & spirits store before it shut down. (WHO’S THE SMART ONE NOW, CRAFTY?) It’s just how we’re all processing these days: we’ve all watched too much news, then turned off the news, then turned it back on again because life cannot go on with ease unless you’re monitoring the daily report of Covid-19 cases in your county. (We’ve 84 today, up from 77 yesterday, if you want to trade numbers).

And I’d love to bet (I won’t, because I spent all my money on wine and chick peas) how many of you have googled the following in the past couple weeks:

Can I still order take-out?

(Answer: Yes! But wear a mask/have it delivered contact-free/maybe just cook instead and save yourself the stress?)

Should my children play with the neighbor kids?

(Answer: No! Hell, no! And we’ll all pretend we didn’t see you, Leah, allowing them to do so for the first week of this thing.)

Is it okay to visit my terminally ill mother?

(Answer: Not at all, really, but home care providers will tell you it’s okay despite their absolute, collective fear of contagion because you only have so much time left with said mother, but maybe make sure to bring some extra soap when you come over?)

How much wine in one day is, exactly, considered bing-drinking? 

(Answer: The old rules disappear under stay-at-home orders, duh.)

But, to circle back to that question, what if it’s only 1 in the afternoon and I’m already reaching into the garage booze fridge?

(Answer: Are your kids using all your devices and there’s suddenly dried mac and cheese in the cracks of the hardwood floor and nobodynobodynobody knows how to hang up a bath towel or reuse a glass or shut the door upon leaving the house and you can’t find the cat now and you’re out of milk but terrified to go to the store? Crack that sucker open. There’s also no judgement under stay-at-home orders.)

Our kids are doing remote learning, as I’m sure most of yours are. Right now, they’re enjoying it–it gives structure to the day, at least for them. I can’t get any of my own work done, because I’m ferrying between work stations and cries of “Mom! Mommy! Mom! Mom!” but it’s okay. I like being with my children. I don’t like that I’m already behind on the emails, and actually making sure they’ve submitted their work seems to be a Herculean task for me. And I’m not going to tell you that my kids’ “special” classes keep falling through the woodwork, and don’t even get me started on the advanced calculus some of these 4th graders seem to be doing, but…it’s good. It’s good, it’s good.

Are you cooking and baking a lot, too? I was, during the first week of this: cheese and chocolate danishes, kale chips, and (it felt like) thirty different kinds of muffins and banana bread all hit the table before lunchtime one day. We’ve had bbq-rubbed pork chops, Italian-marinated grilled chicken, Asian-inspired dishes, Mediterranean seafood bakes with shrimp and fennel. I keep trying to sneak in vegetarian meals like days of yore, but the other members of my family turned into Neanderthals during this time of crisis. I started doing deep-dive spring cleaning that first week, too, because being busy meant I could avoid what was going on in my head: windows were washed inside and out. Rugs were shampooed. Hardwood floors were scrubbed on hand and knee. But I got three whole rooms finished before the kids tracked wet footprints through the dining room (why were their socks wet? Do I want to know?) and the cat barfed chunks of her food on the rug. David spent his evenings that week removing, washing, and replacing all the screens in the house (and only has to replace two of them that he accidentally dropped/tore/gouged!). He lost rock-paper-scissors and cleaned up the cat barf.

But that was the first week. Things, as we all know, can change on a dime.

During the second week, reality hit (well, whatever this reality is? I don’t know! Whatever it is I don’t want it anymore), and the energy in the house waned. There was a lot more sitting happening. My social media break ended, and my face was firmly planted back in front of my phone screen for more hours than I’d like to share (The news! The news is so scary! I have to see the news!). I didn’t actually text anybody or anything healthy that encouraged human contact and connection. I just watched a lot of CNN.

By this week, the third week (or is it the fourth?), the energy fell flat to the floor like a wet handkerchief full of the tears of my despair and we haven’t quite been able to pick it up yet. The first week, we hiked and played soccer and basketball and ran together. This week, I found myself picking Triscuit crumbs off my sweatshirt in a silent house because every single one of us was staring at a separate screen (granted, David was actually working on his, but…the percentage of useful participants in this house most days is not large).

But here’s the heart of the energy shift: it’s my mom. In a nutshell, this situation is–well, it causes paralyzing anxiety, that’s what. Mom is on hospice at home, still with full-time caregivers, most of whom, thankfully, are her usual, trusted aides. I walk in fear of them getting sick. Mom’s not doing very well. There’s been a call to the paramedics this week, and two other emergency calls from the caregivers to their company yesterday for back-up: Mom doesn’t have any strength in her body to support herself anymore, so if she starts to slip to the floor, there’s no stopping her, and one person isn’t always enough to get her back up again. We’ll have to see what the next day or two bring us, but Mom isn’t bouncing back like she has in the past. She has trouble finding her words sometimes. She’s not drinking as much as she should. We are far enough away from her last Avastin treatment that there’s no more chemical “fight” left in her system, and every day I eye the calendar wondering how many days or weeks she can hold out on her own. I borrowed her iPad a few weeks ago so the kids could do their schoolwork, and when I opened it yesterday and saw that she’d put a picture of the kids as her lock screen, I burst into tears. I feel like I should be used to this by now. I’ll never be used to this.

With the pandemic, I don’t know how to straddle this line between “Stay at home!” and “Your mother is dying!” I want to see her all the time. But the health of so many other people is at stake: my mom, my kids, the caregivers and their families and their other patients, Mary and Tim, the hospice nurse and her patients and family and other patients. My gut says to stay away. The spider web is large, and if one of us gets caught in it, the rest will, too. But my mother is dying. And every single caregiver, the caregiving administrators, the hospice providers: they all talk to me and say, go, go visit. They say, be with her. So, during what Cian now calls our “covidcation,” we visit her. The caregivers welcome us with open arms (well, as open as they can be. Social distancing, you know). They sit and chat. They check their temperatures and wipe down the surfaces with Lysol. They hug my mother to lift her up and rub her feet and give her sponge baths as always. They, I think, are heroes. I won’t hug my mother when I greet her and make the kids wave hello from six feet away, and we wash our hands so often our skin has cracked by the time we leave the house. My heart breaks when I think of the elderly in nursing and hospice facilities separated from their families. This isn’t how we’re supposed to say goodbye.

I think we’re all–you, me, all of us–are sitting here stunned, in need of heating pads on our necks because of the whiplash we’ve collectively experienced. We all looked at China and thought, “Oh, that’s awful, what’s happening to them!” and then we looked at Italy and thought, “Oh, that’s awful, what’s happening to them!” and then within a week of that we looked at each other and said, “OH. This is awful.”  I pray that if you’re reading this you and your family are healthy and well and financially stable and simply riding out the storm as best and calmly as you can. If you are an essential worker, my heart goes out to you. We don’t watch TV news when the kids are around, and they’ve calmed down remarkably about the coronavirus now that they’re away from the school gossip. They just do their schoolwork and play outside and squabble about dumb stuff. There’s basketball and scooters and Legos and way more sugary cereal than David would like them to eat. The girls got sunburned two days in a row because they stayed outside so long and I guess I didn’t realize that you can still get sunburn during a pandemic.

The kids miss their friends. (I miss my friends.) They miss going to restaurants. (I miss restaurants.) They ask about summer plans and camps, and I can’t answer them. They ask about how widely the virus has spread, what’s going on in the outside world, and I either tell them too much or not enough at all. We walk the dog a lot, and we talk. (We’ve been monitoring the neighborhood park to see if the blue bells beside the creek have begun to bloom. I’m sure my Instagram will have updates because what else do you have going on, right?) It’s already strange how, in a neighborhood full of kids, the yards are quiet but the sidewalks are so full (I never knew so many of our neighbors had dogs!). It’s strange that I worry about running out of milk and eggs and, of course, toilet paper when I’ve never even questioned the privilege of having to worry about them before (somebody write your novel about THAT). It’s strange that my mom is sleeping at night in a hospital-style bed in her dining room a half hour away and all I want to do is whisk her to our house so we can all be in our bubble together, but that’s not the way she wanted her story to go.

Cian made me a house out of sketch paper a couple weeks ago: he colored it and cut it out and taped it together. This house seems to stand on a shore line, and there’s an ocean there with waves and a sandy beach, and the house itself is set in a big field of flowers. It’s a lovely setting, really. But then you look closer and you realize the house is actually on top of the ocean itself, and the safe shore of sand is as far away as possible. Cian, in that wise way he does sometimes, managed to capture everything we, and possibly many families, are feeling about this moment.

Hope they stocked up on their chick peas.

Mom’s Decline, and A Little Psychological Sewing

Mom’s Decline, and A Little Psychological Sewing

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 

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

Mom Gave Us a Scare, and this is the Closest I Get to Writing a Condensed Version

You guys, it’s been one roller coaster of a few days concerning my mom. (As of this writing, it’s all good–or as good as it can get outside of the brain cancer thing–so please don’t worry.) I have no idea how to break the week 

Mom’s Decline: Definitely Not How We Wanted It to Go

Mom’s Decline: Definitely Not How We Wanted It to Go

“Well, this isn’t how I thought it was going to go.”

Cian said this to me the week before last. He was lying in bed beside me, and the clock said it was about four a.m. He’d been up since the middle of the night with what I thought was the stomach flu. See, Quinlan had started a barfing marathon a few nights before, then it fell on David, Saoirse, and me simultaneously like an avalanche of awful a couple of nights later (because like all things evil in the storybooks, the stomach flu descends during the night). So when a poop bomb went off in Cian’s room at one a.m., and continued to go off for the next three days (it turns out it was the actual flu this time. Silly us!), well. We were used to digestive grossness by then.

Cian, though? Well, our poor buddy was in shock.

And so it became the theme of our January: this isn’t how we thought it was going to go.

My mom had her brain MRI last week, with a much different follow-up than usual with her neuro-oncologist and his nurse afterward. It’s not good news, friends.

The Avastin treatment Mom has been receiving is finally failing to keep the tumor’s growth at bay. She’s been so weak and tired for no other real reason than the cancer itself (who’da thunk, right?). You know already that her coordination has gotten much worse: she has a hard time moving her feet to walk, and needs prompting on basic cues for simple tasks she used to do on her own (she has a hard time telling her feet what to do to walk, for instance, or sometimes needs direction on doing things like drinking from a straw or putting on lipstick). Her coordination has been impacted partly because the growing lesion is in the occipital lobe of her brain, which is where all our visual processing happens. When that center is impacted, our brains can’t tell our feet and hands and muscles to do what they’re supposed to do. In addition to this, as I understand it, the tumor’s expansion is starting to cut off the pathway of communication from Mom’s right brain to her left. This has scared me and Mom enough that Mom asked me to call her doctor to find out what, exactly, her time is going to feel like from here to the end. The nurse predicts a lot of sleeping, and less eating, and maybe even loss of verbal communication. But for the sake of my poor soul, we’re just going to ignore that last part for a while.

When I say all this, please know that Mom is fully cognizant of what’s happening. Once she’s up for the day, she can hang out and chats and laughs just like usual–she just gets tired more easily, and when she gets tired, she gets more confused. Last Sunday she wasn’t able to make it to Mass or Saoirse’s basketball game at one p.m., but we all got her out to lunch (it took an army, but we did it) and afterward at home she was laughing with the kids as they played a trivia game in the living room with her and her caregiver Myine. So it’s not like she’s bedridden or sleeping constantly or anything like that. It’s just…well, it’s just that she’s finally at the end of what her physician called “a fairly good run.”

Mom and I have been doing a lot of talking. She wishes she’d been able to take one last vacation. She wonders what it will feel like. Today, she wished she could just “go” now so that she doesn’t have to spend the next several weeks thinking about dying. She worries about her sister, and who will take care of her cats, and reminds me that my brother is a good guy and I’m a good woman. When the doctor was explaining all of this to us last week, I saw my mother looking to me and Mary for our reactions. I had been staring into space. Mary’s eyes had been red. I cried on the phone with her once, but can’t do that anymore. She needs me to not get sappy. But this was the very first time in sixteen months Mom’s been told by her doctor how long she might have left to live.

It was so hard.

It’s good that Mom’s talking about it. When my dad was sick, he didn’t say much. He and Mom never, she said, talked about it. I had one heart-to-heart with him–I’d been leaving their house after a visit, and I remember standing to one side of my car, and he was on the other, and my pregnant belly felt huge, and Dad was thin and wrapped up in a coat. I asked him, in a way, if he was ready to go. At this point he’d been fighting pancreatic cancer for over a year, after a diagnosis that was so shocking I’ll never forget the look on his face when we found out (it was in an elevator at Johns Hopkins, and he’d read the word “malignant” on a report). And he said yes, he was okay with it, but he was very, very sad to leave us. I later told Mom this, years later, and she shook her head: “No, he wasn’t,” she said. “He wasn’t ready to go.”

Mom has turned down the offer of another, super last-ditch chemo–something called CCNU that would extend her life by another couple months but make her feel terrible. She will continue with the palliative infusions of Avastin every three weeks, which has been working to keep her brain swelling down. Her joints and muscles hurt, but her head, thankfully, does not. I am looking into hospice care, and hospital beds, and having more tough conversations with her. I just heard that she’s having trouble swallowing her medications, and try not to feel fear. Instead, I will buy her a pill crusher. I will not cry in front of her, but I will tell you that I will cry in Wegmans, and in front of a nice mom named Steph who most definitely probably did not expect me to randomly cry at band pick-up, and with my mom’s caregiver Melody, who gave me a hug that broke the dam (why yes, this all did happen during today’s daylight hours. Banner day, I’ll tell you!).

Her’s the bottom line of all of this: last Wednesday we were told we can hope to have several more weeks with Mom–maybe even three months. We know that we are lucky. Even if I had assumed Mom would still be here to see eight grade graduations, Saoirse’s first day of college, my next book published with a dedication to her. Even if I had thought we’d finally get her on that one magical vacation.

Even if this isn’t how we thought it was going to go.

I was talking with a friend Saturday who has a very sick relative, and she told me how he’s held on to life despite the odds. She’s amazed by it. But even if someone has the faith in life after death, it doesn’t negate how good life is here, right on earth, with our loved ones and our sunshine and our food. Of course they want to hold on. Even when it’s bad, it’s still so very good. Even when it’s scary, there’s somebody close by who loves you. Very few people, I’ve realized, are ready to go while there’s still more life to live. Mom was right about Dad.

Mom needs us to walk her the rest of the way home. So no crying on the phone for me (I might still allow Wegmans, because Lord knows I can’t control that). She has us–her family and the caregivers who fight for shifts for her, and those cats that she loves so much even though they still sometimes poop on the stairs. She’s got an army behind her.

Whether she’s ready or not.

Despite the fact that this is most definitely not the way we thought this was going to go.

We are here.

 

 

Mom’s Decline: Where We Are

Mom’s Decline: Where We Are

I was on the phone with my mom the other day, laughing about my parenting skills while David was away for work. “I’m really good, Mom,” I told her, “really patient and calm, right up until about six o’clock.” She laughed, because she remembers. “But 

For Mom and for Quinlan, a Field Trip

For Mom and for Quinlan, a Field Trip

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