A Corner Seat

BEFORES AND AFTERS (7/1/2022)

There is a post that I wrote some time ago where I talked about my child’s cancer diagnosis in terms of Before and After. How there was a life Before that was completely changed in the After. I spoke of that moment at that time as the single transformational moment of my life; as if my entire future was re-written in an instant. In a sense, it certainly was. However.

While I don’t totally disagree with three-years-ago-me, Older, Wiser, Sadder Me has come to realize that life is a series of Befores and Afters. That there is an ongoing list of these events that alter the trajectory of our lives and that some Befores and Afters are just more painful than others.

Right now I’m working on a work project that requires me to sift through hundreds of photos from this past year. In weeding through these, I’m inevitably passing through the personal photos as well. It’s breathtakingly painful, the series of Afters. After Transplant #2. After Relapse #2. After “Incurable” Was Spoken. After New Years. After Meds Stopped Working. After Hospice. After Death. I see the moments marching from August’s Incredible Hope to April’s Incredible Despair, and now into The Quiet.

This week I told somebody that I don’t believe anymore that life is really this tapestry of “good moments” and “bad moments.” That instead, I believe life is a series of events that just happen, which strung together, create a lifetime. I don’t know if that’s true or not because it sounds kind of bleak for me (even though I said it earnestly). Maybe it’s my attempt to stay closer to the precious highs and farther away from the crushing lows? I just don’t know.

But today? This week? This minute? Each time I flip to another photo in this year’s chain? The end of a series of photos with my daughter in them? That’s just another After. And it sucks.

My child is dying.

I’m sitting here looking at her and knowing she’s actively dying. She knows this. We know it.

I know who I am before this happens but I don’t know who I’ll be After.

If there’s anything I’ve come to understand about cancer treatment (specifically palliative cancer treatment) it’s that nothing is linear. We’re bounced around from hope to make arrangements to maybes and it all fluctuates like a giant pendulum. It’s gotten to the point where when we’re told nothing is working anymore I don’t quite believe it because something else appears. None of it is ultimately successful in the long run, but it keeps buying time so we’re hobbling along.

I always thought of myself as a fairly positive - albeit realistic - person before this mess started. I don’t know if I can say with any certainty anymore where I fall. I read the messages I used to post about finding the beauty here and appreciating the smaller things in life and I sardonically laugh. Because this is also the life that contains evil things that keep trying to kill my child and I don’t know how to reconcile the two sides. Maybe life isn’t either good or bad? Maybe it’s just an endless series of days that just simply are and we float along in them making thousands of tiny choices that don’t tip a universal scale. We love and we lose and we mess up and have wins, but ultimately we also die. I just don’t know.

I’ve thought a lot about religion and spirituality in the last three years. I remember learning somewhere that you’re not supposed to pray for specific things because you are not meant to understand God’s will; so pray that what must be will be and that we may have the grace to understand it. And then there’s the school of fervent prayer that says claim this healing in Jesus’ name! Lay hands and declare she is healed and it will be! And so many others! But you know what? At the end of the day I don’t think that any of those approaches get anyone farther than anyone else. My cancer parent groups are full of people asking to join bereavement groups. Children are still lost. Parents still ache. When I see the celebratory posts about end of treatment I read them with a sense of irony and think “I’ll see you back here at some point” because it certainly seems that once you’re snared by cancer you’re never freed.

I know this is dark. I recognize it and still I write these words with zero emotion because I have none. I did five hours ago. Emotion that spilled over my cheeks and down my shirt, but this moment? Right now? There’s nothing. Maybe that’s the blessing right now. To slip comfortably into numbness so that when I stare almost certain impending loss I look it in the face and say what else are you going to take from me because inevitably you will take it all?!

In 45 minutes I will have another conversation about changing the direction of my child’s treatment and my heart will unwillingly swell at a maybe and all the feelings will come crashing back. It happens every time.

A Corner Seat updated their business hours.

An Introduction

I titled this page “Surviving Loss,” but I’ll be honest: I’m not fully certain I will, in fact, survive this loss. I’m not sure I want to. In fact, saying I WILL seems nothing short of arrogant and unfair. But here we are.

Two and a half years ago I learned a very hard lesson about life. We know logically that it can end for a person at any age, but I think facing the loss of a child is something totally different. Children don’t die. People die when they’re old and sick after a lifetime of decisions and experiences. Not eleven yet old girls with big families who believe in God and goodness.

And yet here we are.

Hearing that this child has incurable cancer was a new kind of low. I think the day I heard the doctor say that this child will die within the next year was the last time I was able to fully make it through a prayer. Anytime after that, when I would try to pray it was just repetitive begging; please don’t let this happen; please let this child have a life. A full life. Just please.

There’s no bargaining because truly, I don’t feel like what I have to offer could be worth anything close to the value of this child’s future. It’s not apples to apples. It’s not the same. So it’s an endless loop of desperation that repeats each time I attend a church service. The times between are quiet.

I’ve heard of a crisis of faith but I would describe this more as a crisis of life. It’s not about hope. Or lack of hope. There’s neither optimism nor pessimism. What we have is a calendar of days that involve errands, hospital visits, work, fitful sleep, denial, and numbness. We don’t talk too much as a family about how this feels. I think not because we don’t want to talk, but more because there isn’t a way to verbalize all the feelings that would arise if we gave words to this life. There’s an understanding that some things are just to bad for words.

And this type of lonely. When we believed we were still in a fight that we could win, it felt like we were cushioned by the prayers of hundreds of people. Like if our faith wavered there was an endless supply that we could borrow to get us through. When things went south, people suddenly became quiet. Those who do still talk remind me that it’s not a desire to shut us out, but more an awkwardness of what is there to say to the parent whose child is supposed to die? It’s easier to talk about anything other than reality, but there isn’t a minute in the day that I forget what is happening. I live in this space and yet it’s the one topic people don’t want to hear me talk about because it’s just too much. They don’t know what to say because there’s no making this better with words. Such an unfair thing. But again here we are.

I started this page because I selfishly needed a space where I could write brutal and dark things without apology. I needed to find a place to put these thoughts that breed discomfort; where I can talk about things that just aren’t the natural order of life. Because if I don’t, I’m fairly confident that surviving this is more a question than a statement.