I have been told, over and over again, that readers value my honesty. At times it feels as if that honesty is me whining about a particular situation, or complaining about the overall circumstance, but I have to remind myself that, no, in fact, you want the raw goods. And it's still good for me to get it out there. So here it goes:
We are both sad and tired.
For the last two days, I've awoken to my hero crying. CRYING. Not something he does (and not because of some false bravado ... just isn't a regular thing) much. Throughout all of this, we've had very few weepy moments -- mostly when we've done some hard talking about how to navigate life without him, whenever that may be.
For the past two days, Ian's expressed to me that he feels helpless. Like he doesn't know what the next step is (it's chemo, and it will arrive any day now). Like there are financial things he should be attending to and he's worried we're being overpaid by Social Security or somethingsomething and it stresses him out thinking we're going to be overdue on some account and also owe the government money we shouldn't have been getting.
He's sad about losing his wedding ring (although probably not as sad as I am ... I'm heartbroken and obsessed over a material symbol of our love and commitment. I know it's understandable, and also that it's a needless worry, but there it is).
He can't see much. He can't brain much/it's ridiculously hard to attempt to read and comprehend things .... for a normally voracious reader, this is a huge blow. Even watching movies is difficult, as it requires vision, plot comprehension, and not to be too overwhelmed by sight and sound.
He's sad that we're all sad ... that it is sometimes difficult to orchestrate interaction between him and the kids because it's just awkward. We've played a few games with them ... we STRUGGLED through Clue as a family, and Ian soldiered on, despite much confusion. Doing those things reminds him of what he's lost/missing, and that means it's bittersweet trying to interact with the kiddos.
I'm sad he's sad ... it's hard to witness. It's ... sad.
We're tired. He is exhausted after therapies, and after outings (which are all VERY GOOD for him and he needs to be out and about, stretching his extroverted self and exercising his mental muscles as much as his legs).
I'm tired ... I don't get a lot of sleep, and I have to stay up later than I'd like to give medication. I image that the sleep I do get isn't the best, either (this is not helped by the chronic pain I've had for a month).
I'm tired of being the Maize Family Coordinator, whose duties have expanded to include three therapists and a nurse, doctor appointments, pharmacy trips, phone consults with various agencies about all of the above, not to mention his social calendar (which is a GOOD thing. And it's not like he can do that himself. I'm just saying...).
All that is ... busy enough, but add on top "mom I need to make a diorama," "can you download this app so I can run my robot," "my lunch account is low," "can I go play with so and so," "do I HAVE to go to karate?" "you have a package at the post office," "are we going to church Sunday?" bathing Ian (which takes about an hour, all told, and includes shaving, which although I'm getting better at, is stressful for me), "it's time for your next dose of IV meds and a few pills," "please sign this form saying you've signed this form and fax it back to us tomorrow..."
I would LOVE to sit and read one of the many books on surviving trauma or cancer or suffering I've been gifted. I'm sure they'd be a comfort, or enlightening, or would provide an outlet for a good, hard cry. Or maybe I'd open up the paper and give a flying leap about some politician being an idiot. But I can't sit still for anything but sleep. My mind races so much with the things that need to be done that I look down and realize ... I've "read" a few pages I haven't even SEEN.
I sat Audrey on his bed the other day and we all chatted about how we need to be sure to spend time with one another -- even though it's weird and awkward and sometimes we just don't want to -- because we certainly don't want to look back and have regrets (yes, I went there with my 11-year-old. Carefully, so as not to make it about guilt. It still stung.). I asked her to try to think of ways we can involve him in our mundane, stupid stuff, so he doesn't feel left out and sad he's missing everything.
Assuming the ring is gone forever, do I get a replacement? Do I get a replica (that would be a challenge, as it was quite unique) or a new-fangled thing? And here I'm putting it in print: will it be as meaningful for the weary widow to clutch a ring she purchased a year ago to replace the one of 16 years? What's the point? But there IS a point. I just don't know what it is. And it causes me a pang of sadness to look at his naked finger, which I can't keep myself from doing.
This is the daily, difficult reality of our situation. It's the calm between storms, when no colossal medical event is happening, and we're just trying to muddle through, getting through each day, hour by hour.
And it sucks.