Great Expectations

I went all the way to Vegas and all I got was this swollen ankle….

And two mangled fingers. And wisdom.

OK, that’s not true. I got to escape, literally, the realities of the past year and indulge in a fantasy world for a few days with good people and delicious food.

But it came at a cost, as things can. Or maybe that’s not the way to look at it. As always, there are endless angles on every subject. And as usual, I like to play around with my options.

So, Matt and I went to Vegas. A dear friend was celebrating his 40th, and after years of avoiding “indulgence” as a couple for a myriad of reasons (finances, COVID, cancer, typical parental guilt at leaving children behind), we just bit the bullet and used the travel points we’ve been saving for years to pay for the trip. We love these friends, and it meant a lot to us to demonstrate that, as well as do “something for ourselves”. It seemed necessary, all things considered. Non-negotiable.

But the trip happened to fall only days after Violet completed her scans. Right down to the wire, we didn’t even know if we’d be able to go. Maybe I would be right back in a hospital room on the eighth floor, watching Violet hooked up to a chemo bag instead of my watching the Blue Man Group juggle things across a stage.

As I have for almost two years, I tentatively released my white-knuckle grip on my world and trusted that it would all align. Because either it would or it wouldn’t. Those are life’s only options.

But we got the amazing news that Violet was clear, and our incredible oncology team pulled unimaginable strings so that Violet could get her line out in time and we could go on our “well deserved vacation.”

And then, the moment we got home, days before departure, Violet got sick. Really sick. But, like normal kid sick – an ugly seasonal flu. But when you have spent 18 months checking temperatures 20 times a day, prepped to race to Emergency at the slightest sign of a fever, it doesn’t feel normal. It feels absolutely terrifying.

Let go of the wheel, Shawna. Loosen your grip.

The morning we were set to board, 15 minutes after we should have been out the door, Violet started throwing up. “Mommy,” she begged me from the toilet. “Please don’t go now.”

I won’t get into the emotional struggle I had with this one, but you can use your imagination. Over 550 days attached to my critically ill child and now I’m about to walk out on her to go drink in Nevada.

Anyway, she barfed and rallied, as she does. Bounced out of the bathroom and waved me off for a fun vacation, cuddled up to Grandpa on the couch with a big smile on her face.

But as we drove to the airport, the universe kept showing us manifestations of what was going on inside our heads. A deer got sideswiped right in front of us just as we were leaving town. The parking lot at the airport was full. And our anxiety was peeking so bad that both Matt and I were struggling to breathe.

At this point it is worth mentioning something – Matt and I have clinical issues with anxiety. Matt’s is so bad that, years prior to this, he had to fly home from our family vacation to Disney World because he was crippled by panic attacks. It’s a reality we have managed through life the best we can, and one that is difficult to describe to anyone that doesn’t experience this kind of extreme mental anguish. It’s real, it’s debilitating, and it is incredibly misunderstood. But nonetheless, it is what it is, and we do our best to manage it so that we can enjoy life at its fullest, relatively speaking.

But combine that prior ailment with the PTSD we are currently experiencing from our “situation” this past year or so, and we are like walking time bombs.

We all have expectations in life. We expect things from our friends, our family, our jobs, our children. We expect things from the events we plan and the projects we put out into the world. We need expectations because they help us to define how we feel about things – how we prioritize, make choices, lean into or away from things, protect ourselves. They are inevitable.

But when our expectations are inflexible, we become vulnerable to shifting winds, like rigid twigs in a hurricane. Snap.

I tried to approach this trip with as little expectation as possible. There was momentum and we were going, whether I was completely aligned with the idea or not. So, my job was to get malleable in my thoughts about it to avoid being broken by unpredictable circumstances.

And god knows, Matt and I are already so very broken right now.

As an aside, at the end of Violet’s scans, as she was wheeled into the operating room to finally get her central line removed, our Nurse Clinician (who has been the oak through all of this on the medical team) sat down with me to chat. I looked at her and suddenly a tsunami of emotions exploded out of me like some dam within had completely, abruptly given way. She put her hand on mine and looked in my eyes. “Shawna, everyone handles this differently, and I have watched you go through this unimaginable hell with grace and composure unlike I’ve seen in my 30 years of doing this. But I will tell you something – some parents find that this is the hardest part of the battle. You have been in survival mode, and now it is “safe” to let down the walls. But even though it seems like this should just be a celebration, it will probably feel like the opposite. You may be more afraid than you were the day they brought her in here. Because that fear from that first day, and every day since, has been muted and buried in order for you to be brave and strong. And eventually it has to come out and be processed.”

I cried harder than I ever had before.

“The thing is, everyone, including you, has expectations. They think you should be over the moon. You should be relieved, or whatever. But there is no should here. You are going to feel what you feel, and that needs to be ok. It is crucial it is ok that you let yourself just be, and process this in any way that comes up.”

Shoulds. Expectations. I knew all of this, but it hit me real hard that day.

So here Matt and I are, at the airport, meeting our friends who are ready to roll, ready to get their drink on, ready to celebrate. And we felt those shoulds like never before – like anvils on our hearts. Because we love them, and we committed to this trip, and we were supposed to be celebrating, goddammit.

OK, Matt and I are not Vegas people. By our fourth trip there, we have figured that out and then some. And maybe we should have paid more mind to that. And we had already recognized that we are likely going to be those kind of parents that fall completely apart after the fact. We should have known that it was going to be anything but relaxing and rejuvenating. But that’s ok – it was going to be an adventure, and if we were open to whatever it brought and didn’t stay rigid, we could dance in the breeze and survive.

Crowded planes. Flashing lights. Noise and smoke and traffic. If there is any place that is the complete opposite of a hospital room, it’s the Las Vegas strip. We both felt pummeled by stimulus right off the bat. To be honest, I was petrified. But by god, I’m a warrior of silver linings. We had great company, a hotel bed to ourselves, and every kind of food we could think of available outside our doorstep.

Long story short, we made the most of it. We played and danced and bonded. We cried and consoled. We ate, and ate, and drank (though both of us were over the booze part by day two) and went to shows. We even played some slots, which we never do, and I won a couple of bucks, which I never collected.

But no question, it was hard. Harder than we wanted our friends to know. But on the other hand, we were there with people who have been with us through this battle. So, we had a safety net if we should fall – we could lean into them if it all got too much.

Which it did.

The whole time there I kept thinking of our Nurse’s words – “it is crucial that you let yourself just be.” The weight of trying to perform for others was heavy – keeping it together in public took everything we had.

But it got to us. We had an emotional night. A heavy one. A therapeutic letting go. Tears and words came spilling out of us one night after we returned from an awkward evening, and Matt and I got to vent. To process. It was messy and loud and wonderful. So needed.

But it ended with Matt’s fingers crushed in the bathroom door (PS – be careful when closing heavy Vegas bathroom doors. Know where your other hand is positioned). The weight literally exploded my husband’s fingers. Not the kind of drama you want at two in the morning on a Friday night in Vegas. Needless to say, hospitals aren’t really a great option. We chose bandages and superglue.

In the morning, roughly patched and ready for another round, we took a few deep breathes and Ativan and went back out into the wild world. Without expectations. Matt and I found an incredible breakfast and slipped into the Cosmopolitan pool. We laid in the water, closed our eyes, and savoured the relative peace we found there. No smoke. No pulsing music. No partiers. Peace and quiet. Perfection-ish.

Without too many details, despite our best efforts to stay loose and keep rallying back, the vacation ended on a sour note nonetheless. After leaving the Blue Man Group (great show, though we didn’t see the ending), I missed a stair when leaving the building and ended up sideways on my ankle. Security came to take care of me, wheeling me to a cab and ensuring my safety back to our resort. By the time the second wheelchair got me to my room, my foot was fat as hell, and black and blue.

Not much of a story to tell. I wasn’t drunk. I wasn’t partying. I wasn’t even anywhere of interest (just an empty exit stairwell leaving the building). “What happens in Vegas, stays in Vegas.” Unless it’s just a boring old story.

We left with broken bodies and broken hearts, but more wisdom to add to the tome we have been writing through all of this. Maybe just emphasis on key points we have been etching into our hearts. You can’t control your world. Not the conditions around you. Not other people. Especially not other people. Only your own attitude. Only your own openness to find value in what’s in front of you. Value in experiences. Value in people. Value in what you have, not what you don’t.

Vegas may have been an inevitable train wreck – an ill-timed attempt at indulgence – but nothing is ever wasted. We had an incredible time, messy and emotional and painful and beautiful. We learned things about ourselves and others. We grew together as a couple in ways I didn’t expect we would. We found beauty and pleasure in unanticipated places. And most of all, we allowed ourselves the opportunity to feel a lot of things we have been too scared to feel for a long time.

We could have done it in private – behind closed doors in the safety and security of our own homes, without the judgment of a world that can’t possibly understand. But we didn’t, and that’s ok. Because it doesn’t matter if it got messy. It doesn’t matter that it resulted in some demolition. Maybe that demolition needed to be done so we can rebuild anew. Maybe this journey is, strangely, just beginning, in some unexpected ways.

We got home to our beautiful children that were pacing at the door to hold us. We got to embrace the people that love us and nurture our souls and never expect us to be anything but ourselves. We got to cry ugly tears with them when we returned and it felt so damn good to feel safe in that messiness.

In one week today we will be on a plane to Disney World. Violet’s Make a Wish request was a trip to Florida, and we get an all-paid vacation to the most “magical place on earth.” At least that is what we are supposed to expect. I say, let it be whatever it will be. Maybe Matt will have to fly home again (yes, we are trying Round Two…). Maybe the stimulus will be too much and we will have to hide on our rooms the whole time. Or maybe it will truly be the most magical experience of our lives.

Whatever it will be, will be. And it will be life. That is the only expectation needed.