juvenile brain tumor – Crying Over Spilt Milk

So the beast in the background has been growing. Fuck you tumour!

The last month has been peppered with amazing and devastating moments that I’m too tired to go into right now, so I’m turning again to the music that seems to capture the great swings in motivation and insight that come with medical trauma and treatment and caregiving. To sum up…my daughter continues to flourish and laugh and improve on that great wave of rehab from her stroke, like only a three-year-old can.

However, the big bad in her brain has been growing and now we’re into 70 weeks (that’s right, 70 weeks of low dose, but still scary) chemo treatments to keep it at bay. This is the first round of this kind of treatment, and on the day-to-day, it’s not supposed to be terrible. But, it won’t be the last. The goal is to “only” do this three or four times over the next fifteen years, until her body, and hopefully the tumour stop growing. It sucks.

While I can’t say that this whole experience has made me any more optimistic than I’ve ever been (I don’t think anyone has ever described me this way.), it has hammered home, again and again, the need and benefits of channelling whatever I’m feeling into conscious empathy, and striving to not be a turd, even when I’m angry…which I am…a lot of the time. You never know what someone is going through, or has been through, or might have to face in the next 24 hours. Friends, family, professionals who work with you and your friends and family, people you don’t know, but cross your path, or get in your way, or treat you poorly, or plain old screw things up.

Shitting on someone, even when you have every right to feel miserable and angry and bitter, rarely, if ever, improves any situation. Even truly crap situations are a lot more bearable (for everyone) if you can rally to find the humour, or the love in it, or if you can simply put yourself in the position of your fellow great stinking pile dwellers. Some of them are also just trying to make it through the day, or have had a lot of “days” to get through.

Mindfulness is a term that gets bandied about, and I will disclose fully that I’m no expert and I don’t always achieve it. I may even be misunderstanding it (I’ve done no research on this.), but here is what it means to me now, and how it applies to a few things I’ve learned in the last 9 months.

I am mindful that everyone has their own situation they are dealing with. Everyone. The doctors, the janitorial staff, the nurses, the admin person who sounds irritated that I haven’t brought the right forms. The teacher, the daycare worker, that family member who always says the wrong thing at the wrong time. Everyone is trying to get through their day or life and has moments that are hard or easy and those moments may be interpreted differently than I would, but they’re still experiencing them. I’ve frequently been on the edge this year, and sometimes it’s the simplest caring, supportive, or even just civil gesture that has helped me step back.

So, I’m trying to be better. Trying to be aware. Trying to smile and be warm, even when I can’t be positive or nice.

I am mindful that I need to identify and express that sometimes I’m angry at everything. If I can say to my partner or child, “I’m having a really hard time right now. This isn’t about you. I’m trying to calm down and work it out.”, they usually get it and the snowball of emotion and snippiness can be stopped. This goes both ways. As a family, it’s not something we’ve consciously started doing, but it’s become an essential communication pattern for getting through some really hard times.

I am mindful of the ripple effect I have on those who deal with me, interactions big and small. I believe we receive better care because we try to treat the people in our medical world like they’re people. I believe my family is still standing because we’re all trying really hard to understand what each other is going through.

The trying part is key. It doesn’t always happen, but trying is the thing. Here’s where I loop back to the song. Give it a good listen.

A Better Son/Daughter by Rilo Kiley

It’s a bit of a confessional at times:

Sometimes in the morning
I am petrified and can’t move
Awake but cannot open my eyes

And the weight is crushing down on my lungs
I know I can’t breathe
And hope someone will save me this time

an anthem at times:

And sometimes when you’re on
You’re really fucking on
And your friends, they sing along
And they love you

but it’s the aspirational rally cry that really gets me:

But you’ll fight and you’ll make it through
You’ll fake it if you have to
And you’ll show up for work with a smile

And you’ll be better and you’ll be smarter
And more grown up and a better daughter
Or son, and a real good friend

And you’ll be awake, you’ll be alert
You’ll be positive, though it hurts
And you’ll laugh and embrace all your friends

You’ll be a real good listener
You’ll be honest, you’ll be brave
You’ll be handsome and you’ll be beautiful
You’ll be happy

Out of all the muck and the fear and the shake ups, I am trying to be a better person. I’m trying to learn and grow and do all the things you’re supposed to do so you can still walk and live and love in the face of life shattering events.

Cheers to Rilo Kiley for giving me a sing-along to help me.

As my (max 12) readers know, this blog started out as a place to vent my frustrations and share my experiences navigating the world as a parent of a kid with multiple food allergies. “Crying Over Spilt Milk” felt like a clever and convenient pun because the bane of our allergy world existence is the dairy allergy. It’s pervasive and a pain the ass.

But in the last few months, the meaning of the blog title has shifted for my family and I. Shit has gone down. The world has toppled over sideways and we find ourselves in a parallel dimension that overlaps our previous life from time to time, but will never really run the same course again.

I debated about keeping the blog alive. I’d already gotten a little lazy about posting, but had heaps of ideas to discuss: I wanted to write about life in a zombie apocalypse with food allergies (pros and cons). I wanted to lament the fact that my daughter will have to bring her own snack bag when she gets drunk with her friends as a teenager (no late night poutine for you…cooler bags are cool at the club, right?). I wanted to humble brag about all my work-arounds as she moved into the world of kindergarten, and bitch about the false solutions that are offered to allergy kids in the public school world (clearly I have some anxiety building up about this).

I might still do those things, but for the time being, it all seems pretty frivolous and fluffy, which isn’t bad…just not where we are at the moment.

At the end of March, my daughter, then 2.5 years old, seemed to come down with a bug that got worse over a week or so. She threw up one morning, then she was fine for the rest of the day, just a little lethargic. Then she was tired and head-achey and whiney. Then she got wobbly. Then her hand began to shake. A trip to the ER and an assumption that I’d be sent home as a paranoid mom later, and we were on a wild, no fun roller coaster that included the diagnosis of a sizeable brain tumor, debulking surgery (to identify and remove as much of the “mass” as possible), a post-surgery stroke, paralysis on her right side, a permanent shunt to treat hydrocephalus, and now, the start of a long but pretty remarkable rehabilitation crusade. Plus…multiple food allergies. Like I said…world toppled over…parallel dimension…all that.

Clearly, I’ve over simplified things there, but that’s the trailer. We’re still living the series.

“Crying Over Spilt Milk” has come to mean something different to me in the last few months. It’s not a clever pun. It’s an idiom that sums up how our family is trying to cope with the way our lives have changed as a result of all this. Shit happens. Shit happens to good people. Shit happens to little kids. Shit happens that you cannot prepare for and for which you cannot assign blame. Crying over spilt milk is not only OK, it’s necessary. It doesn’t change anything, but you should definitely NOT not cry over it. Crying over spilt milk helps you accept what has happened and let go of what was in that glass. It’s gone…you’re not going to fill it up with the same milk (because who knows what was on that counter…that shit is messy). You just have to figure out what you’re going to refill it with.

This blog, from this point on, is about that.

Tag: juvenile brain tumor

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