Aftermath

Photo by Vladyslav Huivyk

Lately some of life has been…tricky. When I spoke with Social Workers and Nurses during treatment about how we would likely have to “rebuild”, it was tough to put that into perspective.

But we are most certainly in that process now, and it has come with its own unique, partially unexpected challenges.

Life has certainly been sweet in so many aspects lately. Time with friends, time as a couple, time to nurture our family unit in a way we weren’t able to for a long time. Businesses are building (and, for me, building back up). The anxiety and “panic” I was experiencing with such intensity for months has ebbed, and in its place I have found new opportunities to “get back into things”.

But that’s where things get complicated. “Getting back to things” is an interesting concept, and one we are all, as a family, trying to figure out how to do. Without a playbook, at that.

I’ve gone “back to work” and had my first termination meetings yesterday in over two years. As a Career Transition Specialist, part of the job can involve being present for these termination meetings to support teammates being let go, informing them that they will receive services to help them move forward. In the past, these meetings terrified me (as they do most everyone). They are extremely uncomfortable and require a certain sensitivity and confidence that can be an absolute tightrope to walk.

But in light of our experiences these past couple of years, and in the aftermath of enduring my own “bad news, life changing meeting” with Violet’s original oncology team, I took with me an entirely different energy yesterday. I wasn’t scared, or nervous, or panicked. I was calm and assured, knowing that I could empathize in a way I couldn’t before. With the practical knowledge that these individuals could receive news like this and, in the end, thrive because of it. That “bad news” is actually opportunity for growth and change and renewal. That I was there to offer them something, not take something away.

So, in this sense, I didn’t “go back” to work, but moved forward into a new way of approaching my work – a new way of being in this world.

The girls, too, have “gone back”, but school is an entirely different world than it used to be. And I feel for them. God, I feel for them. For Lucy, she spent a year at Ronald McDonald House as a social Queen, ruling the roost and feeling a sense of confidence and ownership of her space and her social network. And then she went back to Peachland, where everybody knew her but where she didn’t feel like it was her space at all. She missed kindergarten. Friends had friends already. Her understanding of how to make friends, how to fit in, didn’t apply the way it did before, and she’s been navigating that in her own way, struggling with her sense of identity.

This is something all kids go through in one way or another. Figuring out the world and social applications is tricky at the best of times, and that’s infinitely more true once you start going through puberty and all the messiness that goes along with that.

Violet is 10. She is 10, and a girl, and a sensitive, emotional one at that. Reactive. Stubborn. Passionate and impatient and dictatorial. Challenging personality traits for anyone trying to work through pre-teen friendships. But then there’s the cancer thing. The changes and struggles and post-treatment/trauma implications of it all.

When we were in treatment and the world was so incredibly generous with their support and affection, I remember thinking, “how long does this last”? Everyone has their own struggles and tragedies in life, and then the momentum of it wanes, and things move on. So, when, exactly, do things move on?

Because that matters. The timing. The “when”.

Violet has been struggling. At the discretion of conserving some of her privacy, I won’t get into the details, but it’s been rough. We are lucky beyond words for so many things. Mainly, Violet has beaten unimaginable odds with her physical health. Somehow, with every odd stacked against her, she has managed to achieve NED (no evidence of disease) and build back up her energy, her weight, her immunity, her vitality – even playing basketball with all the rest of her peers at a recent school game like she didn’t just go through 18 months of medical torture. You never would have known. Physically, mostly, it’s almost impossible to know that this time last year she was in recovery from back-to-back bone marrow transplants.

There are the scars. The short hair. The height (she’s shorter than her friends, and it could very well be a result of radiation near the spine or a delay in growth from chemo). She’s aware of it, but it doesn’t really make her stand out to others in any significant way.

But her mental and emotional coping strategies surrounding those things – surrounding everything – is evident to almost everyone.

As a parent this has been pretty…awful…to witness. Agonizing, on levels that are hard to talk about.

I’ve tried. Violet’s friends, after all, are children of my friends, and social conflicts between them have implications that are tough to manage. I’ve had to talk with them multiple times about challenges Violet is having with them, with her moods and attitude, that are causing pain and confusion.

It turns out, childhood cancer has so many layers of impact on a life it is difficult to compare it to anything else.

I try to take the “cancer” part out of our lives whenever I can. We don’t talk about it at home much (not for lack of trying – I do try to keep as open of a dialogue in this house about what we are all processing, but I can’t blame them for not wanting to go there). Violet and I opted out of a lot of “campaigns”, never setting up social media accounts to support her and never making too big of a public fuss about all of the organizations that helped save her life. I wanted to – mainly because it felt morally important to give weight to the ways in which we were impacted by all of it, and the need for these organizations and individuals we met to gain support as well.

But it was all too much for us. It seemed more crucial above all else to live in the world of the well – to focus on healing and health and life and lean away from the tragedy. After all, it isolated us so much from the life we had before.

But there just is no going back. We aren’t the people we were before. Some of that is positive. Actually, most is. Our lives and the depth of our understanding of life is so much richer. But it’s not all positive, not right now. Not while we are transitioning and trying to work through all of it. Right now, it’s messy. Right now, Violet is struggling big time.

And time has run out. For us as adults, it ran out way faster than I expected. Even with people close to us, we went from friends that needed love and support, to an emotional burden that wasn’t worth the effort (for those reading, I’m not talking about you). And it was so hard on me because I couldn’t blame them – we were “heavy weights” to deal with. We were broken and sensitive and dragging around serious baggage that we couldn’t hide or control. And we knew it, but there was nothing we could do. We needed to go through it, and we couldn’t expect the world to stop and make reparations for us. After all, everyone had already done so much.

We have limped along and dealt with the inevitable debris of the aftermath. But it’s agonizing watching our daughter, who has had to go through such an incredible injustice, try to navigate her universe now. Because there is no one to blame. Her friends, who are also 10, can’t possibly be expected to wrap their heads around it all and make space for everything that arises. After all, they’ve already done so much.

Violet’s broken and trying to put the pieces back together. She’s navigating the onset of puberty, crushes and broken hearts, social judgments and insecurities, pre-teen pettiness and pressures. And on top of it, severe PTSD.

From the outside, without context, she is a drama queen. She is a control freak. She is impossible to please and irrational in her reactions. She is a poison to what would otherwise be a positive environment.

On the inside, she is scared. And isolated. And hurting, so very, very bad.  

We all want to be understood, but how can anyone ever understand all that?

I’m trying to find the lesson right now, as there absolutely always is one. Really, there’s no injustice. There is always opportunity. I know that. And I need to remember that, for her.

We don’t need others to understand us. Because they never will. Even as I write these blogs, trying to precisely convey my deepest thoughts and experiences, everything is just open to interpretation. Some will think one thing about my words, about me, and others another. And that’s ok. It has to be. We can’t make people think or feel anything about us, even if we try.

So, my lesson to Violet lately has been this: the most important thing is where your heart is. Where your intentions are. You will always, no matter what, be misunderstood in some way. And it’s no one’s fault. Sometimes we intend to be kind and are seen as selfish. Sometimes we intend to be a friend and are seen as the enemy. Sometimes we slip up and act in ways we wish we didn’t, but it doesn’t define who we are. Our intention to improve, to be better, is at the heart of what matters most. We can try our best. We can keep working toward a better, kinder version of ourselves. But we are human, and no matter what, we will fail ourselves and others sometimes.

For a year and a half, the world saw Violet as a Superhero. Lately, her family and friends have been frustrated and tired of her inability to “behave”. To control herself. To perform. And I can’t blame any of us. She’s been difficult. But God knows, there’s a reason for it. But I know her. I know where her intentions are. I know where her heart is. And I have faith that all of us are going to make it through this – to find clarity amidst the chaos. To find confidence amidst the uncertainty.

We can’t ever lean into assurance that we will be understood, but we can understand ourselves. We can figure that part out – what our intentions are. What we mean to do in this world. And we need to live in that place, somehow, no matter what is happening without. No matter how we are being interpreted.

Our family is rebuilding, but it’s important we all recognize that it’s an inner project, first. It’s figuring out who we are now and who we want to be, and letting that be the way we find our fit.