Readers, I struggled with this post. Not with writing it. No, that was the easy part.
I struggled because I try to keep this blog honest, but also somewhat light. And mostly because I know that people are most interested in hearing how our girl is doing. Those are the posts that generate the most likes. Generate letters and cards to Abi. Of course they do.
This is not that kind of post.
But Abi reminded me today of one of the reasons we started the blog in the first place. It was because last February we went on line trying to find a place that told us what this journey might look like. From the perspective of a parent. From the perspective of the patient. And we didn’t find much.
One of the reasons we started this was so that somebody else in a similar situation might better understand the coming storm, and by understanding, be somehow better prepared to weather it.
Sadly, our story isn’t all that unique. So this one is getting posted because maybe, just maybe, someone might read it and not have to discover some of the things on their own that we’ve already had to learn.
I’ve been diligently preparing for the approaching hurricane.
Shoring up the foundation. Replacing rotten wood. Reinforcing the crumbling concrete and adding blocks where the mortar was failing. Filling thousands of sandbags to deploy to the spots where the water came pouring in during the last cyclone.
This isn’t my first storm. I know where the leaks are.
This has been good work. Honest work.
The months with a truly and deeply trusted therapist. Intentionally aligning choices to values. Finding my vocation. Learning, finally, what it means to be mindful, and even occasionally feeling I might actually understand what it takes to approach that elusive state. Learning gratitude (not as easy as it sounds), and collecting raw nerve moments. Writing this blog. Sharing Abi with as many people who will open their hearts to her. Recognizing bonus days for the gift that they are.
The foundation is undoubtedly stronger than it would have otherwise been.
But even so, it doesn’t always seem stronger than it was nineteen months ago, when Dr. McGaughey said, “Cancer will almost certainly take your daughter’s life.”
In fact, I’m just as terrified today, maybe even more terrified today, that the house won’t stand. That the storm will wash it away, and me with it.
A friend works with veterans. Some of her stories of the trauma they’ve experienced are beyond the pale. Stories like this one:
“He tells you about how he lost his innocence when he asked a fellow soldier why the skeletons that they were digging up all had their mouths open. His buddy responded: “Because they were buried alive.”
How can I read this and not feel like my little story is so common, and that my trauma is somehow unworthy? Seriously. What’s my pain compared to that? I know that comparing trauma is a losing game. But sometimes I can’t help it. We all do it. Don’t we?
People lose their children. It happens. Most survive it. And yet, I’m fighting so hard just to hold onto some thread of hope, and not just for Abi’s survival. For my own, as well.
I’m not saying losing a son or daughter is, or should be, easy. Of course not.
But the affect somehow seems disproportionate. Like the affect is more a measure of my own strength, or lack of strength, than it is about what’s actually happening. Like people survive much, much worse.
But thinking about the stories of these veterans somehow helped me to realize something. I’m dealing with the thought of losing my daughter. But that’s not the hardest part.
No. The hardest part is seeing this person who is so dear to me go through the process of dying.
That's the unbearable trauma.
Of course that’s it.
I’ve been working hard to prepare for Abi’s loss. But the whole time, I’ve been ignoring the storm that’s been raging all around me. The storm that’s gained strength with every pound she’s lost. With every sleepless night. With every time she tries to speak, but can’t be heard over the sound of…anything. With every memory not collected.
The house isn’t stronger than it was. No. It’s weaker. Like the months of the approaching storm have eroded the very ground beneath the foundation. And I didn’t even notice.
This week, Abi said to me, “I feel like Christmas this year will be different. Like every gift people give me will just be a burden to them later. After I’m gone.”
Every gift, just another puddle for someone else to wade through.
Every gift, another trinket for them to tuck under their pillow, or to put into a box in their closet.
Every gift, a bauble to string onto their life’s chain, or a bead that gets lost in a bag of beads.
After I’m gone.
How do you hear one you love so deeply say those words, and not have the ground fall from beneath your feet?
Losing her will be hard. The process of losing her is harder still. After all, the fiercest winds are always on the leading edge of the storm.
The first cloud bands arrived last February. There have been breaks, but the storm has never truly diminished. Never altered course.
And it’s pushing, pushing relentlessly toward landfall. Gaining strength.
The only question is: What will be left on the other side of the eye?