It's 4:20 AM and I feel restless. I've been up and down all night long, plagued by what can only be called a stream of bizarre and disturbing dreams. The weight of Logan's disease is pressing heavily upon me and I'm feeling not only the gravity of his condition, but mourning the loss of normalcy and worried over the future.
The reality of this particular treatment process, which I realized just yesterday, is that most of the time, the child winds up being a near-full time inpatient in the hospital. There's no '1 week on, 3 weeks at home' as I'd assumed. Between the fevers, the infections and the low counts, going home becomes a pipe dream that only the most fortunate can realize. It's not meant to say that I think anyone lied to me; I'm just wondering if I was simply too bombarded with bad news to fully absorb all of the implications of what we were being told from the get-go.
The baby is due just before Christmas. How will I make it here alone with him and the other two? Sure, people have offered up lots of help and I know they'd deliver, but the reality is that I want my family together. I want to not be struggling with coordinating calendars, feeling awkward over having others in my house during a time when I'm already feeling particularly vulnerable, sad, and well, fat.
It feels like a completely insurmountable situation, like a worst case scenario like you'd see on a reality show that makes contestants cope with awful circumstances in a quest for a million dollars. Only in this case, it's going to wipe out our savings, keep us apart and there's no paycheck at the end for putting our noses to the grindstone.
I could just spout the usual platitudes about God handling things - as a matter of fact, there's a Veggie Tales tune tooling around in my mind about just that subject right now - but given how things have gone so far, I just don't think He wants to handle them. I've hoped for the best every time I've had a chance for the past month, yet we've always gotten news on the bad side of the spectrum.
Well, maybe they'll get the whole mass. Nope, just half.
Well, maybe it's benign. Nope, very malignant.
Well, maybe this doctor in Boston who's had good success with AT/RT will have something to add. Nope, between Oakland and LA, there's been so much foot dragging that we still haven't gotten to send him our information packet. And no, they don't seem to get that this is our child and not just another interesting case study.
Well, at least he can come home for a few weeks between cycles. Nope, a week if we're lucky.
Well, at least he's handling the chemo really well. Nope, not really. He's 'average' - fevers, WBCs wiped out, blood transfusion. And that's after just ONE single cycle; effects are cumulative over time, too.
I know it doesn't work this way, but I'm starting to wonder what I did wrong to deserve this. It's very, very hard to hold onto vestiges of faith when you feel like God has all but abandoned you; when he's not answering your prayers in a perceptible way; when you're looking down the line at a future that seems... impossible to handle and heartbreaking beyond anything your worst nightmares could create.
Not to be rude, but please spare me preaching, because unless you've been where I am right now, thrown into a fire without an extinguisher, into a raging sea with no life jacket, you don't understand. You cannot understand. It's incredibly easy to say 'the battle is won! Have faith!' whe your faith has never been tested in this sort of way. And honestly, I feel like most never experience a 'test' of this magnitude. We're all different and yes, in some sort of sick way, this is part of a 'plan'. But I wish to God it wasn't in MY playbook.
I want my family back. I want to not look back on late 2010 as a black, dark period in my life that came to an end with the blackest, darkest event of my existence. I feel like I'm pleading for mercy, for signs, for some sort of palpable, meaningful good news, but am getting nothing at all in return. I am in desperate need of a miracle. I feel, at this precise moment, like God has turned his back on me, on Logan, on my family.
And there's no worse feeling than that.
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