Tag: Quinlan

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 

It was the Girls Novice Championship, and We Talkin’ about the Game (with apologies to Allen)*

It was the Girls Novice Championship, and We Talkin’ about the Game (with apologies to Allen)*

* 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 

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 after six?” I continued. “Nope, I’m done. That’s when the shutters get closed on my brain and the patience goes out the window.”

My mom was listening to me. Sometimes she pays only half a bit of attention to me, especially when the TV is on in front of her (sixteen months into brain cancer, and she can still tell me everything going on in the news), or her caregiver is in the room, or when she’s simply tired or extra-weak that day. But that afternoon, she was listening, and talking, and it almost felt like old times.

“Well,” Mom said. “It takes a lot of patience to have patience!”

When I started to write this update last week, my post was a bit different than it is today. I was going to tell you what I tell everyone who asks: she’s hanging in there. (One acquaintance looked at me straight on after I told her this last month and went, “So, it sucks.” I almost cried. Because yes, yes. It sucks.)

What “hanging in there” meant is that, according to her December scans, her cancer had come back and was slowly spreading, but it wasn’t necessarily bad news, because she was physically holding steady and doing fine, and yay, isn’t that good news? Mom, her neuro-oncologist said, just needs to exercise more. That would help her. He told me afterward, in private, that her decline will be a gradual process–we won’t walk into his office one day after a scan and find that the cancer is everywhere.

It’ll just feel that way, I suppose.

Mom’s Christmas was so much better than last year’s, when she was at the very end of her six-week daily radiation/weekly chemo treatment and felt absolutely exhausted. Last year, all she did was lie on my couch and stare at the TV most of the day. We tiptoed around her, thinking it was the last time we’d have her at Christmas. This year, she sat in the very same spot, and needed a wheelchair to get from the front door to the living room, but she drank mimosas and giggled at the TV and ate (a little bit, mind you, and mostly cookies), and–most importantly–she was able to hang out and talk and laugh. It felt special. And she had a strong couple of weeks with us: we travelled with her to Maryland to see her siblings and their families, she went to dinner and Christmas Eve mass with us and my brother and sister-in-law, we took her and the kids to the movies (Frozen 2, because she had “no desire” to see Star Wars, and after Frozen said that maybe Little Women might be more her speed), and we took her out to lunch to help Cian celebrate his seventh (seventh!) birthday. She drank a margarita and ate most of an enchilada, and was more present for the day than she’d been in a long time. She did well, considering. It was wonderful. I found myself logging every moment in my little brain filing cabinet, because, well. Things have shifted.

David, the kids, and I snuck away (it feels like snuck away, anyway, because we haven’t done this sort of thing since Mom got sick) after the New Year because Santa dropped off some tickets for us to see the Notre Dame women’s basketball team play at Pitt (Santa just knows his audience, doesn’t he?). Tickets were five bucks a pop and David had points for a free hotel room, so off we went to Pittsburgh for the night. We had dinner at Southern Tier Brewing down by the stadiums, and ran into friends at the game. Notre Dame beat Pitt, and the kids got to meet the players afterward and get their autographs, and I do believe that’s the first time I’ve ever seen my girls starstruck.

(“MOM.” At one point Saoirse was staring at Mikayla Vaughn, who was dribbling down the court. Saoirse leaned over to me. “I want to be THAT tall when I grow up.”

Friends? Mikayla is six foot three.)

The kids were over the moon that we stayed in a Marriott (“A HOTEL! It has a BREAKFAST!”), and the next day we were at the Carnegie Museum of Natural History by 10 a.m. to ogle dinosaur bones and the sparkly mineral/gem collection. By lunchtime, we were all famished, I suggested noodles, and a quick Google search led us to the best meal we’ve had in ages at a Tiawenese restaurant in Squirrel Hill. It was an incredible 36 hours. It was special. It was us. And then it was over.

After Christmas, Mom started to have more difficulty waking in the morning, sleeping till about eleven o’clock or so, and she would head up to bed around nine or nine-thirty at night. That has progressed, and now she sleeps until twelve-thirty or even two p.m., and even then has to force herself to start the day. Last night she started up to bed at eight. Her body is so weak that she can’t walk a yard (with a walker and her caregiver) without sitting down. It takes her about an hour and a half to get from her bed to her chair in the living room each day. Her appetite, which was always small, has dwindled further: a protein shake, some Cream of Wheat for breakfast (er, lunch), maybe peanut butter on a slice of bread for dinner, and if we’re lucky, a lemon cupcake my Aunt Mary brings her. Sometimes, she’ll eat more (she had a bacon and scrambled eggs and toast the other night for dinner and it was the best news I’d gotten in weeks), other days less. We still try to bring her meals–chicken noodle soup, a homemade waffle–but they go uneaten.

Mom gets confused and more fatigued as the day goes on. She forgets things: how many children I have. Quinlan’s name. She asked me if her nephew, who’s married with three children, lives alone. I took the girls to see her yesterday, and they were quiet when we left. They told me that they used to be able to talk with Grammy like they talk to me, and now, she doesn’t speak to them at all.

It’s so strange. And frankly, it’s lonely. I’m sad a lot, and grumpy, and a little lost. From what Mom has told me, it’s kind of how she’s feeling, too.

I broke down to David on Saturday. Mom’s caregivers had called to let me know that her legs kept giving out from underneath her. It was snowing and sleeting outside, but all I wanted was to go down to her house and see her myself. He asked me what I had expected to happen as time went on, and I told him: not this. I never expected her body to give out before her brain. I say this full well knowing that her brain is what controls her body, and that I should not actually be surprised, but I don’t know. I think I expected her to go crazy, or go blank, or something else equally horrible first. To watch her be cognizant and aware of her body shutting down breaks my heart. And I can’t put her back together.

Mom has a new scan scheduled for tomorrow, followed by an appointment with her neuro-oncology team. I’ve spoken with them a couple times leading into this. It could be–what we’re all anticipating–the tumor causing this decline. It could also be her body just too full of medications and chemo toxins to deal. It could be lack of nutrition and exercise. It could be depression. This could just be the new normal, but one we’ll be able to ride out for a good length of time. Or it could be, well, a sign of what we fear.

I have never actually wished for someone to have depression before this moment.

When David asked me what I expected, I think he was looking for pragmatism, but my answer is–and has been– purely emotional. To be honest, I didn’t expect to still have Mom with us at this point, so now that I have it, and now that I’ve gotten used to being happily surprised at each appointment, I want to keep that going. She’s been so weak for so long I think it’s her sheer determination and stubbornness that have kept her body working as it does. But she, too, is dreading this appointment tomorrow. She doesn’t want to know what it might tell her.

I’ve been losing my mom for almost a year and a half now, but I still want to hold on to what I have left with her. It’s been almost a year and a half of grieving, but I don’t welcome the grieving yet to come. I’m not ready to be a person without her parents (I’m already down one, you know).

I’m certainly not ready to not have my mom.

The road ahead of my mom–of me–is one I dread walking. But then I recognize that we’re already on it (which is probably why I’m so tired?). What do I expect? A lot of bad things, quite honestly. A crap-ton of sadness. An overwhelming wave of new responsibility when I’m already struggling to manage the one I’m already on. I can’t tell you there’s a whole lot to look forward to. It’s a lonely feeling.

But that’s where we are now. Tomorrow we’ll hope that Mom can get up and out of the house, that the appointments will give us some answers, and that we’ll have, maybe, a better idea of how much road we have still ahead of us.

I’ll keep you posted.

We’ve Turned the Page on the Calendar, and You Should See the Bruise

We’ve Turned the Page on the Calendar, and You Should See the Bruise

Let me tell you a little bit about how 2019 and the entrance to 2020 have gone. We had a snow storm in our area last week, primarily because David was away for work, and when David goes away for work, the skies decide it’s 

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 

Almost a Year After Mom’s Diagnosis, We Find Ourselves Back at the Beginning

Almost a Year After Mom’s Diagnosis, We Find Ourselves Back at the Beginning

Hi, everybody. Are you good? Did you have a nice summer? Or have you forgotten summer now that most schools are in session so you’re busy pulling out the sweaters and warm boots because YAY I DON’T HAVE TO SUNSCREEN THE CHILDREN ALL THE TIME NOW?

I hear you. I mean, I’m not in a hurry, or anything. But the mornings are now quiet without the singsong of our neighborhood birds. The light is different–almost flatter, if that makes sense–and the air outside seems subdued. The season is changing over, quieting down. And I think I’m happy with that–I love autumn–even if, in my world right now, a quiet season doesn’t always mean a quiet life.

I owe you an update on my mom. I’ll post something more detailed soon, but in a nutshell, she’s beaten her prognosis (we’re now almost a year out from her diagnosis), has completed treatment (other than a twice-monthly chemo infusion to keep her brain swelling in check), and is working to get her muscles stronger so she can walk unassisted. The children are spending a ton of time with her, and readily admit they’re trying to soak up as much of it as they can. They are sad. They ask a lot of questions. Nobody really knows what happens next except for what we’re afraid will happen next.

We had a beautiful weekend around here last Saturday. It was supposed to be a day at home for chores, but David and I procrastinated on that silly notion (which, if you’re a grown-up, know it just means we paid for it with the avalanche of overwhelm that followed. But cheers to poorly scheduled family time anyway!) and decided to take the kids for a hike. After a change of plans when I realized the hike we really wanted to take was three hours away, followed by a car-in-the-driveway impromptu planning session courtesy of Google Maps, we ended up at a place called Waterfall Trail.

The name makes you think the trail leads to a waterfall, right? Like, that it’ll be a slow build-up to a beautiful sight that makes the exertion worth all the effort? Let me just tell you: this trail needs a lesson in tension-building for good storytelling, because here’s what happened: we parked, walked along a short pathway from the parking lot, crossed a bridge, and lo and behold, there was the waterfall. (It was a tough hike. Two hundred yards long!) We made the most of it–walked past that waterfall (because we were hiking, dammit, whether we liked it or not. I turn into Clark Griswold sometimes) and burrowed deeper through the woods on vague trails while the middle child declared repeatedly that a walk without a body of water as the destination is a pointless walk indeed and the older child squealed at bugs and branches and darkness and smells and the terrible reality of being on a hike with just her annoying family. The youngest, meanwhile, didn’t stop grinning, once exclaimed that “This is the best day EVER!” and chattered the whole time about bears and dinosaurs and that muddy patch and that rock and “Mom, I really have to go to the bafroom–can I pee on those leaves over there?”

We climbed rocks and slid down hills. I fielded complaints that I’d only brought nuts and dried fruit for them to eat instead of Jersey Mike’s subs. The kids splashed in the creek and the dog lay down for a nap (also in the creek I don’t understand). Cian built a dam and Quinlan found a crayfish and Saoirse came over after a while to sit next to me and chat. I got an apology and a hug from the oldest for complaining, and the middle told me this wasn’t really the best day ever but the water wasn’t so bad, and the youngest asked when we could come back again.

Sunday, I drove down to my mother’s house in the morning to pick her up, then brought her back to our church to meet up with David and the kids for Mass. We’ve been doing this most of the summer as she’s gathered strength. I wheel her in and we sit in the very front pew (which means no napping during the homily I have turned into the best Catholic EVER), and go to brunch afterward. The girls usually join us for the trip back to Mom’s house after that, and we hang out for a bit–talk, catch up with Mom’s caregiver, watch a little TV–before heading home for our own Sunday night routine. Every time we leave, the children tell me how much fun they had, and thank me for “letting” them go see her. This past Sunday, I told the girls that I love that they say that–and said something to the effect that it makes me happy they enjoy being with her even if she can’t do as much as she used to with them. Quinlan said, “Well, just because she’s sick, it doesn’t mean we love her any less, right?”

This has been a summer of back-and-forth, of climbing rocks and sliding down hills. While we can take a good guess about what lies around the bend, right now we just have to keep walking. Last Saturday, one of the trails we took abruptly ended in a snarl of weeds and overgrown brush, so we had to turn around and find another way. One child wanted to find the water, another just wanted lunch, and the other was content to lead the way into the unknown. I feel like Child #1 and #2 most of the time–just let me sit and rest and know it’ll all be pretty in the end already–but I want to be like Child #3. I want to be content enough with the walk, and to trust I’ve got good company along the way.

Just because she’s sick doesn’t mean we love her any less. For me, it’s not knowing where we’re going that’s the tricky part.

The Easter Bunny Shakedown, or Why Some People Make Fun of Religion

The Easter Bunny Shakedown, or Why Some People Make Fun of Religion

Quinlan walked into my office the day after Easter, pursing her lips like she does when she senses deep, deep injustice in her presence. “Mom,” she said. Her tone was accusatory. “The jelly beans that were in our Easter baskets were the same ones you 

The Mighty Shows Up: It’s Quinlan’s First Holy Communion

The Mighty Shows Up: It’s Quinlan’s First Holy Communion

My youngest girl received her first holy communion this past Saturday. If you’re unfamiliar with Catholicism, all you need to know is that this is a Big Deal in Catholicland. It’s the beginning of a kiddo’s journey to adulthood, the first of many decisions she’ll