Good Days and Bad Days

I’ve been doing pretty good. All things considered. In fact, I’d say if I were outside looking in, I’d give myself a pretty big pat on the back.

All things considered.

And yet, I’ve had my moments, too. I’ve been scared, impatient, full of guilt, full of anxiety. Totally, completely, utterly overwhelmed.

Yesterday they moved us up to the Oncology floor. The move we have been waiting on for almost four weeks. 

That’s a long time in the ICU, apparently. Not a lot of patients need to figure out how to store groceries down there. It does a number on the psyche - being in an environment like that for a long time. It starts to wear on you, as you can imagine.

But it’s also said that three weeks is the standard amount of time to establish a new habit. To “acclimatize” to new things.

And we are now at the three-and-a-half week mark. A new reality is starting to form.

I didn’t notice it until we moved.  After a glorious visit with family in the courtyard yesterday morning, soaking up the sun and snuggles, they got a (large) group of staff to help move our stuff to the new floor (I’m pretty sure we arrived with the clothes on our backs, didn’t we? Where did all the stuff come from? … And why did we get so lucky for all of it?). And let me tell you, the rumours are true. The Oncology floor is infinitely more comfortable than PICU.

For an hour or two, Violet and I basked in the deliciousness of change. The hallways are filled with light up here. Windows everywhere, and A/C, and HEPA filters turning the air into clear, crisp, breathable goodness. Her room – the walls covered in turquoise color, just like home, and the window wide open to reveal a beautiful view of the city below – is like a lavish retreat from before (complete with a door that closes! Privacy! Our own bathroom!)

We were given a tour, and introduced to new options like a patio (small AND large, with views of the North Shore mountains), a full functioning family kitchen, and a PLAYROOM! When we returned, they had set up her bed with a welcome gift – a new LOL doll and a Lego kit. More things to make her feel spoiled.

All things considered, I don’t think any family could be luckier for the context surrounding a situation like this. I have family here to help me raise my kid. We have friends offering unimaginable amounts of love and support. Strangers are chipping in to make sure we know we aren’t alone. And we have the best care facilities and team possible to aid her recovery.

But this morning, there was a new kind of sadness that wasn’t there before. Yesterday the Psychologist came to check in with us, to see how we are managing, and offer support. I found myself almost preaching about how I’m handling it – how it has been such a spiritual awakening, and that my primary perspective has sincerely been one of appreciation and gratitude. I could feel my anticipation at her approval - my desire for that pat on the back. Validation that I’m doing a good job.

She did give it to me, telling me that I am strong and should be proud. But she leaned more into another angle. She said, “make sure you give yourself space and permission to feel other things. You will get tired with all of this. It will wear you down, and you won’t always feel like this is a positive experience. It’s ok to be angry, or scared, or sad. It’s important, because it’s real and it a part of the process.”

It was an important reminder that I don’t have to be a superhero. Not all the time. And not for anyone, including myself.

Violet’s principal sent her a beautiful book as a gift last week. “Even Superheroes Have Bad Days.” The title speaks for itself. It a crucial message, not only for Violet, but for all of us. For my parents, who are starting over again raising an incredibly “spirited”  5-year old who is desperately missing her mother. For my husband, who is trying to juggle a full time job, keeping a new entrepreneurial business afloat, all of the errands involved in this mess, living an hour from the hospital in our trailer, and trying to carve out time for his wife, his daughter, his OTHER daughter, on a daily basis – a 2 hour drive combined with “visiting time” and dinner, in the tiny window he has between 12 hour shifts. For family members and friends that are feeling helpless, unable to visit or take any action that feels like a significant contribution to her situation.

In something like this, we are all superheroes, because we are all facing fears with courage and trust. Whether Violet is a close family member or friend, or represents the possibility that something so scary could happen to a person who is, each person involved in this story is having to dig down for a certain kind of faith that this story will turn out ok. And that it’s ok to feel scared and vulnerable.

I am sad today because we have moved into the next leg of this journey. I used to run long distances, and always divided the run into 4 stages in my mind. The first one – the initial stage – is incredibly uncomfortable. Muscles ache as they adjust to the strain. But the mind seems to approach the challenge with enthusiasm and resolve. “We can do this! We will get through this on top!” The second stage is different, though. You settle into the run, the pace, and have those first real thoughts that this will require stamina. That it is going to be a long haul. That the enthusiasm may not last as long as initially expected.

I need to settle into this stage and accept that the positivity may not always be present. Energy ebbs. People get on with their lives (we all have to). The initial drama weans as time moves forward. Things “normalize”.

But this is a good thing. We need to move on. Because that means we are moving forward. Violet, although almost completely isolated to a bed for over three weeks, walked herself all over the ward today. She played in the playroom. She got some fresh air. We talked about a routine. We started settling in.

Things will change. She will begin to lose her hair. We will start another round of chemo. She will have surgeries and radiation and infusions and immunotherapy and bone marrow transplants. There will be new things to fear, new challenges to tackle. But today we are doing alright, a little sad and a little more relaxed. And I think that’s the best we can ask for, all things considered.