Quiet Confidence

Quiet.

There is so much power in silence I have realized – power that I have minimized and taken for granted for most of my life.

Silence is the place where storytelling ceases and momentum slows and knowing begins.

This piece of Violet’s cancer journey has been so very different than the first. There is, of course, so much overlap. Familiar faces and places (this round we are in a bone marrow transplant room – the rooms specially designed with “security double doors” that partition an exterior entrance room to sanitize any items entering, maximizing hygiene and anti-infection protocols to avoid life-threatening contagions from interfering during a transplant. Violet spent several months in these rooms during her last round, clinging to life, but man, do they ever have the best view of the city!). Familiar side effects and fears. Familiar conversations with specialists that “delicately” handle issues pertaining to poor prognoses and expectations.

The main difference, however, has been the way I have handled it with everyone else. With society “at large”. With the incredible community that continues to support us up front and in the wings.

Last time, I was much more connected. I both isolated myself within these walls and clung to the conversations I was able to have with others online through my blog posts and text messages – the connections offering a kind of revitalizing energy to my terror and grief. I was able to navigate the intense guilt and obligation I felt with others for their generosity and overwhelming support by explaining and summarizing and sharing the daily insights I had about our experience. And I know it offered others a “way in”, which everyone has, no doubt, deserved and appreciated. I know how many hearts are invested in her outcomes. I know how much I want those hearts to be soothed and nourished from the side lines.

And yet this time I’ve had to acknowledge one powerful, central concept that has become absolutely critical – my emotional, energetic stability is paramount. Why? Because this time, there is so much current and momentum against us. There are too many expectations of the worst. Too many bad odds. Too many poor prognoses. Too many personal stories of tragedy to relate to. Too many loved ones that have lost in the exact same circumstances and so little evidence toward the contrary.

Except, dear friends, in my heart. And that knowing – that evidence – is only clear and confident and concentrated in that silent place beyond the stories.

I have been trying to write this damn memoir for years, and I know that the reason it hasn’t materialized fully is because I haven’t really gotten the “punchline”. I am, after all, still living out the pages and scenes of it as we speak. That’s a strange place to write a personal narrative when, after all, a good story is only as powerful as its ending. And when the hell does this one end?

But I think I’ve got it. And, ironically, this story I’m trying to write has to be written in silence, to be shared when it’s “done” and the timing is right.  

There is, of course, a story to be told now, and one that doesn’t need explicit validation and explanations. There are a million stories to be told in any situation – a million interpretations of what’s going on around us and what it means and what matters to us. There are countless stories in any given day in this ward that I could share that would reflect the horror and the beauty of a place like this, full of pain and suffering and love and gratitude. And at the right times, I will share them, when it makes the most sense.

Today the story is this – Violet is taking on this treatment like a rock star. We have just finished Round Four (her immunotherapy infusion finished in the wee hours of the night). Today they will wean her off of her pain and nausea med infusions and switch her slowly to pills, tapering her IV fluid intake so she can handle it on her own, and hopefully discharge us tomorrow. We will go home to heal, and although everything takes a day-by-day approach, if things are trending the way they have been this round, her healing will be much quicker and smoother than the last. With hope, she will have the strength to trick or treat with her friends this year before going back in for Round Five.

We have plans to get a scan in a couple of weeks. I don’t expect to be out of the weeds, but I do expect progress. This treatment has no set timeline – basically, since there is no default protocol for relapsed neuroblastoma, and often the “expectation” is that treatment is to prolong life, not save it, they intend to go at this as long as it takes, or as long as her body can tolerate it.

But see, right there – that’s where the knot in the gut shows up. Fear. The need for a story to soothe things and thrash against the tide of belief.

Quiet. I close my eyes. I remember. I remember that no specialist, no data chart, no study or story or comparison can take into full account for Violet. Just as no sporting odds dictate winners and no casino probabilities dictate cash outs. Each and every context in life is its own complex web of influence and expectation. And the upper hand I have over every single specialist that walks into this room, every doctor that has “insight” into her situation, every well-meaning grieving mother that has lost this battle before, doesn’t know Violet. Even I don’t really know her plan – what she came here for, what she plans to do with this one precious, fleeting life.

But if there’s any evidence to pay attention to that might indicate outcomes, it’s certainly not other people’s stories. It’s Violet. It’s the fact that every day in here she has used whatever strength and sober moment she has had to plan her birthday party, post marketing for her business around the floor, and work tirelessly on customer orders to save money for art supplies that will further her future skills and nurture her passion. It’s the fact that, despite it making her people-pleasing mother extremely uncomfortable, Violet is a “difficult” patient – one that many nurses are intimidated by – because she doesn’t cooperate for everyone else’s sake. She does things her way (with consideration and kindness, when that doesn’t interfere with her obstinate plans and medication side effects). She makes her own rules, full stop. It’s what makes her an “acquired taste” – something that I have deep appreciation and respect for, considering the lengths I have gone to and suffered for in my life to be everyone’s taste. And if you are lucky enough to see her for the complex, vivacious, creative, courageous, fiery light that she is, you dig in and get to bask in how overwhelming impressive of a human being she is.

She may not be everyone’s cup of tea, but my god, she sure is a favorite with most here. “You never have to guess what Violet’s thinking,” they say. “Man, that kid can communicate, and she knows what she wants. I don’t know anyone else that can tell me so precisely what she wants.”

Violet doesn’t need to validate herself. She doesn’t need to know the odds. Our favorite Head Pain Nurse in the hospital who holds Violet on a pedestal (she even brought her handfuls of gifts from a family trip to Ireland years ago – like, a lot of presents, including a Mr. Men and Little Miss book titled Little Miss Stubborn and the Unicorn, when Violet was still in her unicorn phase, that depicts a Violet-colored character with her arms crossed on the cover) asked me when we got back in to treatment, “Does she know how bad this is?” And I thought for a moment – if this doc, who is more invested in Violet than almost any other in the hospital, would ask a question like that – someone that I would otherwise lean into with complete trust in her assessment of Violet’s chances – then it really is true. None of us really know her. Of course Violet knows – she has commented 1000 times about how it's strange that she “hasn’t died” when all of her other little beautiful friends whose horrible disease came back did. She’s one of the most observant, articulate humans I know and sees every day, all around her, what all of this could mean. How bad it is. But to her, that’s their story. And as tragic as those stories are, she also holds my same belief that maybe there’s more to those stories than the tragedy (I say this with the utmost humble respect and loving kindness I have to offer for my dear comrades/mothers that have gone through this battle and are grieving in ways I can’t possibly understand). Maybe they had plans we don’t know about. Maybe, in the end, we all need to trust that despite the stories we tell about the horror of this disease, the unimaginable pain of grief and loss interwoven into the whole pediatric cancer thing, the uncertainty we ourselves will live with every single day regarding our own outcomes and experiences, there are other stories. Paradoxes within this experience. Light and dark, love and loss, pain and understanding.

In the silence, I have found I am able to slip into that place of knowing that somehow everything is alright. Somewhere, beyond the stories, is unconditional love and trust. And some days I feel it so strongly that nothing can sway my conviction. And that is where I am trying to stay. Because it has power, not just in my attitude and ability to get through this crazy shit, but actual transformational power. I am seeing bits and pieces – evidence – that is scaffolding my faith. And the less I feel the need to address the fearful stories, the better I am able to stand tall on this tightrope and cross this chasm of uncertainty.

But I think of everyone that is invested in this, too, every single day. I want to bring everyone along with us – keep everyone connected to this, as long as we are in it, so they know our gratitude for their love and support. That support is our buoyancy, and I hope my silence is understood not as a lack of love, but as a reminder of it. I know this is my job right now, for Violet, for myself, for everyone, to hold this place of knowing and conviction. I’m not always there, but I am often, more and more each day, and the evidence will continue to follow.