It’s past time for an update from me.
Long past time. Those Facebook ‘year-in-review’ cards are taunting me. Also, the mailbox full of Christmas letters, which is something we’ve always spent way too much time and energy on in the past (we are a ‘family of writers’ after all). ‘Tis the season to put on a happy face, some matchy-matchy outfits and show the world how fabulous it is to be me; surpassed only by the sheer joy that comes from being one of my well-adjusted children.
It’s a festive filter. Not lies so much as a iron-willed determination to focus on all the happy, and only the happy. Absolutely nothing wrong with that. I’ve often looked at a carefully staged family photo and been encouraged. Because we are those people, the best and the brightest parts of our lives.
But we’re also the dark and the ugly. The bickering and the yelling and the gritted teeth between flashes, the self-obsession, the focus on blemishes and fat and who-done-me-wrong, the jealousy and dissatisfaction and greed. Also, the heartbreak and grief and utter confusion, the disabilities and disappointments, the pain and suffering and dark nights of the soul.
No one wants that stuff on the record.
Which brings me to my lack of updates. I’m not sure where to start. I’m not sure what can be put into words.
Since our daughter’s diagnosis we were assured that we had the best possible prognosis (90% cure rate), a fact I didn’t realize I was banking on, until we got the news that she has an unusual mutated form of leukemia. The new number, 65%, is not nearly so bankable. Better than some, and ultimately, just a number… but it was a blow.
She responded well to treatment, although she did develop diabetes due to the meds. Shortly after our not so great news, it became apparent that she had picked up an infection from her latest bone marrow biopsy – skin, blood and, likely, bone infections, actually. Layered on top of that, a UTI and kidney troubles. A week later, a highly contagious, and frankly nasty infection called c-diff landed us in isolation. Add just a dash of liver function decline to keep it interesting.
Suffice it to say, we didn’t leave the hospital after the first month as planned. We ended up staying almost 8 weeks.
On Saturday night, we brought her home!
That’s the upside. The happy holiday snapshot that makes everyone smile. It is SO good to be home! We go back to the hospital every other day, but even that feels like a relief, because her immune system is non-existent right now, her meds are complicated and we are nervous wrecks – we’re happy to get her checked out, just to make sure. These people are on top of it, and they don’t mess around.
The other upside continues to be the support and love of everyone around us. We’re overwhelmed with gifts and food and encouragement from all kinds of people – ‘cancer swag’ is the real deal. Something about this kind of struggle taps into the kindness of all humanity.
Bureaucracy, not so much. But that’s a dark side story.
There’s a lot of dark side too. A lot of moments that don’t make the Facebook feed. We are living every parent’s worst nightmare, and there are very few moments that I’m not aware of that.
We’ve got our game face on most of the time. That’s what parents do. Get through. Research. Dole out comfort/attention/discipline as needed. Wrap up presents. Cry in the shower. Turn on the Christmas lights. Check to make sure she’s breathing.
I’m good at being a mom.
I’m just not so good at being a person right now.
I can’t read anymore, I don’t have the attention span. I spend a lot of time on Facebook instead. The stupid quizzes, celebrity news, whimsical quotes – that’s the depth I can handle. I’m forgetful and touchy and easily overwhelmed. I eat junk food, even when it turns my stomach. I don’t even make plans to exercise. Mostly, I’m angry. Not like usual, where I fuss and rant then feel instantly better. This is a low-level simmering that is far more toxic. So much around me seems pointless. And I am running out of polite.
For instance, the service industry: full of seemingly cheerful people who are paid to make inane small talk with strangers, has become a perpetual irritation to me. I used to be a cashier. It’s the job. Especially at this time of year. I get it. But it still makes my skin crawl. I’ve encountered several versions of: “What fun plans do you have this year?” and, “So, how are you getting into the spirit of the season?” and even, “You look sad, cheer up, we’re celebrating the Saviour’s birth – Christmas is the most wonderful time of year!”
I’ve started giving them an honest answer. Strangely, it doesn’t seem to be what they want to hear. My reality rudely interrupts their peace on earth.
I secretly enjoy their horrified looks. So sick of this pressure to be happy, happy, happy…
So here’s us, with the least inspiring Christmas update you’ve ever read. Have yourself whatever kind of holiday you need to have. Life is about more than just the merry. And that’s okay too.