Fear and Faith
Image courtesy of Cheri Brunning - Castanet News
Once again, Violet and I have returned to the hospital for another round of treatment. And once again I sit here at my window, looking out at a world turned upside down, feeling helpless for those I love that are suffering another incredible challenge.
I to mine, and them to theirs.
The floods in BC have been surreal, especially on the backbone of a summer of fires and drought. Hard to believe that months ago evacuations were due to lack of rain and parched land. Now entire cities are empty, along with numerous grocery shelves.
But it isn’t all inevitable.
Maybe none of it is. Maybe the way we are behaving toward our planet is the cause for the extreme weather. Maybe we could be more proactive and navigate the way we treat our world better. Maybe. But one thing is for sure, we could definitely act in a way less motivated by fear. That I am certain about.
In our personal family world, we have been blessed these past few weeks with wellness. After completing an intense surgical procedure, Violet bounced back with amazing vitality, and we milked it for all it was worth. With an upcoming 9th birthday on the 25th, we knew Violet would be in treatment, and so once we found out she would be in good shape until admission, we planned activities to celebrate in advance. Being last minute, and a nasty highway away from our friends (at least, when there still was a highway), we planned an adventure to Chuck E. Cheese’s for the family. But we had a few unexpected surprise visitors, including one of Violet’s besties from home, and it ended up an incredibly memorable, deeply meaningful celebration (in Violet’s words, “the best possible birthday ever).
On top of that, Ronald McDonald House awarded us seats to a Canucks game, donated by Horvat himself, which Lucy, Violet, Grandma and I attended a few nights before. Amid strobe lights, animated music, and the pulsing energy of an enormous crowd, Violet got her first taste of NHL excitement, and I relived an old passion that I’ve long since buried under the distractions of parenting life for years (oh how I missed you, hockey!). And we topped off the week with a co-birthday party with Violet’s uncle, bringing together family that couldn’t make the arcade extravaganza with Chuck (including our sweet little dachshund Ella, recently widowed from our fur baby, Max).
So many things to be thankful for.
But Monday morning came quick, and as the treatment team came into the room one by one to address concerns and explain the upcoming procedures, the blissful haze of our break began to wane. Despite cheery voices and carefully selected language, the nurses and doctors and dieticians and specialists slowly but surely wedged a crack in between me and my feeling of invincibility.
The next month or so looks like this:
Monday was considered Day -7 of a 7 day countdown to Violet’s stem cell transplant. On days -7 to -5, Violet receives a chemo drug called Thiotepa – a particularly toxic medication that is excreted through the pores. For these days and for 24 hours after, Violet must bathe every 6 hours, including through the night, to remove these harsh toxins from the skin and avoid burning and damage. On days -5 to -2, she takes another chemo drug, Cyclophosphamide, in high doses to “consolidate” the preparation for the transplant. Then, after a day of rest on Day -1, we are moved to a highly sterile, isolated room for her BMT, which will take place on day 0.
And then recovery slowly begins.
During this treatment, her blood cell counts are completely wiped out of her system, hence the transplant of healthy blood cells into her body (which were previously harvested from her own blook months ago). But before these cells are engrafted into her system, she will be neutropenic for several weeks, meaning her body will not be able to fight off any infection whatsoever.
Without getting into too many details, Violet has already been through the ringer with infections, so these bacterial bodies are already likely floating around in her system. Once her T-cells are gone, the environment is ripe for nurturing their growth.
What this likely means is that Violet will be sick. Very.
So what does a mother do with this kind of information? What she did from day 1 – accept what she cannot change, and work with what she’s got. And, most importantly, with attention to the delicate balance that exists somewhere between fear and faith.
Because fear is an acknowledgement of what is, and faith is an acknowledgement of what will be (if you let it).
I keep thinking about those empty shelves in Peachland, those desperate people that are so motivated by fear that they have stripped the stock from the stores and left so many angry and helpless that just need a bottle of milk to get them by. I think of all the people around the world struggling in one way or another against the current of anxiety that someone will take away their piece of the pie and leave them stranded. Because there are lots of people out there ready to take away our sense of security if we let them.
And diseases. And environmental disasters. And harsh cytotoxic treatments, threatening to wipe out our ability to survive.
But we are not creatures of survival. We are creatures of meaning, and the point of our lives isn’t to
“get through”, it’s to thrive. And how do we do that, especially when the chips are low and the stakes are high?
We chose to trust. We lean into the faith part of the equation, and make calculated decisions that feel good, not desperate.
We buy our jug of milk and share with our neighbour.
We bring in jigsaw puzzles and Nintendo games into a transplant room and we play when we are up for it, and nap when we are not, and trust that all the pieces are working together to keep us moving in the right direction.
We trust because it feels good. Because the conditions may not be something we can control, but the meaning always is.
Faith feels better. And with a nod toward fear, an acknowledgement of its presence, we can contextualize our faith in the real world without letting it make our decisions for us, or own our perspective.
I hope everyone at home is keeping the faith that once again the dust will settle, the shelves will be stocked, the highway will be fixed, and the community will go on thriving. Those that have hoarded have lost the true value of what times like these bring – opportunity to care for one another and, in turn, experience the real meaning of this life experience. Thriving, not surviving.
Besides, I savoured two beautiful days of sunshine after that rain, even from a hospital window, and that was proof enough for me that I’m leaning in the right direction.