Two days ago the biggest worries on my mind were: securing funding for speech therapy, my children’s potential texting addictions, and getting my butt out the door for book club.
In the space of a single phone call that all disappeared. In fact, it feels like the ground beneath our feet disappeared too. A cosmic upending. As if some powerful hand has shaken our world like a snow globe. We are left dizzy, reeling, surveying the damage to our orderly plans and expectations. And terrified.
Was it God?
Or something less mysterious, some faceless force?
I blame Leukaemia.
Our 10-year-old daughter has it. Our tiny, charming, iron-willed sweetheart has this disgusting disease.
She wasn’t sick that day, the morning before we got the call, just infuriated as I forced another routine blood test on her. Screaming and betrayed by it, as usual. Then happy as a clam 20 minutes later, also, as usual. Everything seemed normal that day. She hadn’t been sick. We had no warning, no foreshadow, just a punch in the gut when we least expected it.
I’m writing to make some sense of all this. It’s moving so fast. And my brain is moving so slow. That feeling when you walk into a room to get something, but you can’t remember what. The fog. I feel like that – all the time.
They kept asking us “do you understand why you’re here?” Over and over. Were they expecting more tears? Are we doing this wrong? What a stupid thing to think at a time like this. But I need to know we’re helping her, somehow. Even by going through the right motions in the right way.
We must looked stunned and stupefied. Which, of course, we totally are. But I’m hoping it plays as competent and calm.
There are already sparks of hope in the story, hints of Providence and amazing wonderful generous people all around us, holding our world, and us, together. There will be more, I know. I’m grateful. I’m making a list.
But I don’t need to write about that, not now. Maybe not ever. There are already lofty, inspiring stories out there aplenty. After all, kids with cancer = sentimental goldmine.
Which, you know, kind of pisses me off. I’m so sick of being brave and inspiring and wise. Since I’m actually weak, scared shitless, and incredibly ordinary. In thousands of ways I cleverly conceal. Because who wants to be known as the mom who just fell all to pieces and swore in front of her kid (and in her prayers, and on her blog) and yelled at her shell shocked husband for sleeping too much and not helping out enough?
Well, not me. That’s for sure.
So I’m writing to process, to make sense in my own mind of all that is happening so quickly. And hopefully get through it with less yelling and falling apart, and more loving my family.
The best I can at least, because it is happening so fast. And I’m pretty sure when this stuff happens we’re all weak, scared, and incredibly ordinary in the face of it. That’s life.
Right now I’m hoping that they can surgically implant a tube near my daughters heart, so that we can pump powerful drugs right into her bloodstream. The sooner the better. That’s right. Two days ago we were planning for Halloween and tonight I’m praying for chemo to start ASAP. Surreal.
Feel free to follow this journey in my blog, but don’t expect the pretty version. So far this experience is raw and exhausting, yet somehow closer to the pulse of life than usual, with gusts to boring and mundane. A bizarre mix. That’s life.
Our daughter, meanwhile, is the hero of the story. As usual.
So here’s us, in the well staffed, cheerfully decorated hell that is children’s hospital.