Floating

I am tucked into a corner in our new Bone Marrow Transplant (BMT) room, looking out another pane of glass at a sparkling city beyond the gray rooftops of the hospital. Today feels strange. Sad, maybe. Or “slow”. It feels like emotion isn’t really a player. Or maybe there’s so many that they all cancel each other out.

At 12:36 pm Violet completed her last stem cell infusion. It is a “rescue” from the chemotherapy she completed a few days ago that has, once again, wiped her marrow clean. She is already having side effects – nausea, skin rash, thick mucus and mouth sores – but no vomiting, which isn’t like her. It’s a win when you compare things. I try not to, but when it makes you feel ahead of the game, there’s value.

Today the clouds are shifting in psychedelic shades of gray, dark on one side of the sky and soft on the other, letting the light flow through across the tracts of blue and brightening the windows of the city skyline. There are seagulls today, too, floating in the sun on an imaginary pillow of air. They look peaceful. They are giving me a gentle anchor for my gaze.

I don’t do this much, if ever. Stare out blankly onto a vista and let my mind drift. It’s soothing. 

I try not to think of the millions of emails I could send, the millions of thank-yous I should give, the millions of tasks always awaiting in the wings. Even in here, there’s always too much to do.

Violet isn’t speaking to me. The anxiety that has come with her treatment is palpable and deep. There are pros and cons to anything, and I often look at the babies in this ward and think, “how could anything so awful happen to such a sweet, tiny, innocent being.” But the blessing with the young ones is that they don’t really know what’s happening. They don’t need to make meaning out of it. They are able to stay mostly in the present moment, battling the pain without aggravating the suffering with the stories in their head.

My little girl is full of imagination. And fear. So much fear.

Yesterday her imagination translated into anger, and it was visceral. I took it like a punching bag, grateful for the role - the “job” I can do to ease that suffering, even just a little bit. But the irony is that it doesn’t ease that “helpless” feeling, because it doesn’t make her feel better. She lashes out, then agonizes about the pain she causes, and then explodes again, over and over.

So much frustration spilling out all over the place.

This is messy business. The past few weeks have been a culmination of all of the suffering and sacrifice this family has endured through this long, arduous journey. Deep pain has surfaced in streams of emotions that have been hard to keep within tight boundaries of decorum and equanimity. We’ve gone through a lot, and under the best of circumstances most family members would crumple under the weight of simply being this close together.

But we’ve had layers upon layers of obstacles. Not to mention, now…Covid.

Maybe it’s not the “bad word” it once was, as it seems that most people I know have now fallen to the illness. But around here, it’s terrifying letting it out of the bag, as our living accommodations (both in the hospital and at Ronald McDonald House) are so heavily influenced by our health “status”.

A positive test is a stamp on our credibility – our ability to move freely within the ward, or even keep our room at our residence across the street.

But Lucy’s emergency trip to the hospital turned out to be a positive Covid diagnosis. Normally they wouldn’t even have bothered to test her. So many kids are sick with such manageable symptoms that testing is just a complication at this point. Yes, kids are getting sick. Go home, nurse the fever, drink lots of fluids.

They tested her because of Ronald McDonald. And Violet. And here we are. 

Stamped.

So now, despite Violet having 2 negative tests, we are on lockdown in our room at the hospital. And yet they won’t test me. Because what’s the point? If I had it, I’m 4 weeks past initial symptoms, which is way out of the window of contagion. And yet with the stamp on Lucy, we can’t leave. Our freedom (what little we have at this point) is gone.

And I am still eyeball deep in recurring headaches and brain fog.

There have been so many challenges that keep piling on us that I am starting to really realize how bottomless our reserves can be. It is a constant reminder that life is entirely interpretation. We choose how to react. We are choosing even when we don’t realize it. We take for granted the choices we are making all the time.

Things have shifted for us. The threat of being expelled from RMH due to their new vaccine protocols have changed our priorities and view. Now, with still no resolution regarding how long we are able to stay, we are having to make new plans. We have “bottomed out”, and all of us still battling the emotional and physical rollercoaster Covid has presented need a new game plan. We can’t keep going down this road as we were. We can’t keep living in a tiny room terrified of touching anything or exposing ourselves. We can’t keep existing in this reality that is entirely determined by the policies and perspectives of others, living in a mask, afraid.

We need to go home.

Violet is now beginning recovery from this last intensive chemo treatment. In 6 weeks from today, she will have to begin her radiation therapy. But the treatment is only a half hour a day, 5 days a week, for a few weeks. And it doesn’t take place at this hospital (it happens at the Cancer Centre down the road). It is not critical that we stay at RMH, and if Violet is well enough to leave the hospital in a month from now as predicted, we will have 2 weeks of “freedom” before radiation.

It is a window, and with this change in tides, it is one we need to capitalize on.

We have been renting out our home, and Matt has requested to move back March 1st. He, at the very least, will go back home and do what he can (and has been doing) to manage a full-time job, building a business and keeping a roof over our heads (at least, a roof waiting for our heads). Lucy, who has been living with my parents at RMH, can go back to the Okanagan with him, potentially, and they and Matt can collectively take care of her while Violet and I finish radiation in Vancouver. Maybe, depending on the highways, we can travel back on the weekends to visit. Because God knows I am getting really sick of being away from my other daughter. It’s tough to explain to a 5-year-old with Covid why her mother can’t cuddle her to sleep yet again.

I’m tired. Mostly, this illness has taken my last remaining hints of sanity and clarity, leaving me wasted on the couch staring at the sky.

But I’m grateful for it. We’ve got it, and now we don’t’ have to be afraid of it anymore. It’s been a common theme in our lives this past year. “Here, look at what you can do! Bet you didn’t think you could ever handle something like that! One less thing to be afraid of.”

I’m tired of being afraid. I’m tired of being tired. But I keep reminding myself that on the other side of all of this is a kind of strength – a kind of knowing – that most people don’t get to have. It is a deep understanding that we are capable of so much more than we know, and have so much less to fear than we can comprehend. We don’t need to listen to our fears because they are false advertisements of weaknesses we are only imagining. They don’t keep us safe. They trick us into not living full lives. They are archaic systems of protection that we don’t need any more. Our imaginations are tools to be used to enhance our life experience, not nail us to the floor. It is crazy, when you see things this way, to realize all of the wasted time we spend as human beings fearing outcomes that will never be, fearing threats of others that are not real – anger and resentment and regret. Such wasted time.

This seagull is floating on something unseen – this invisible force lifting him and carrying him through the air. And he just opens his wings in trust. Today I’m paying attention, sitting at this window, staring at the sky. And it is anything but wasted time.