Between waiting for calls, taking calls, sending messages, checking for responses, and general stewing our Tuesday was pretty much consumed by a black cloud of bleh.
Not sure what I mean? Let me bring you up to speed.
Cee had an MRI on Friday, and the results aren’t great. The aren’t even good. Or so-so. The results are bad. Pretty much the results are bad.
We’re planning another trip up to Mayo the end of next week for more appointments, and depending on those appointments we might be looking to take a trip to Cincinnati, which boasts the best pediatric rheumatology department in North America. (Not sure how many pediatric rheumatology departments in Belize were in the running, but our doctor said “in North America” so we’re just going with it.)
As I mentioned earlier this week, our journey with SJIA is marked by questions. It’s doubtful that we’ll have answers even after next week, and it’s likely that we will have some tough decisions to make.
Although I am saddened by all this, one thing gives me peace:
Cee is not in constant pain. If she isn’t walking, she’s relatively comfortable and cheery. As long as she keeps those hips stationary (which she’s good at) and has a book, she’s happy as a clam.
She seemed pretty non-nonchalant when I told her that her MRI results weren’t the best.
Cee: Why were you crying on the phone, Mom?
Me: Well, I was talking to Grandma about your MRI results.
Cee: You mean, about the needing to have surgery thing?
Me: (choking back more d-a-m-n tears) Yes. I had just hoped you wouldn’t have to go through all that.
Cee: (shrugging) Meh.
And that was that. No tears (from Cee). No arguing. Just matter-of-fact resignation.
Now that Cee can read, she’s able to go anywhere and do anything through the pages of a book. That’s not a cliche. That’s her real life. So as long as we can keep her in books, she’s up for anything. Her acceptance of whatever life throws at her is admirable.
I’ve had some time to discern my thought from Mass this past weekend that Cee is not going to get better. I don’t know the scope of that statement; I don’t know how “not better” things are going to get. This could be the worst of it. Or things could get much, much worse.
Really, it doesn’t matter all that much. I’ve always known that SJIA has the same mortality rate as childhood leukemia.
I might only have one more year with Cee. I might only have two more years with Cee. Certainly I hope for seventy more years, but who knows the reality? Not me.
I can’t afford to waste time.
I’ve mentioned my love-hate (more like hate-hate) relationship with facebook. That’s where many people follow blogs, so I feel obligated to be there. But whatever. I’m done with it. If I’ve only got a year, or a handful of years, or even a decade, why am I spending any energy on kitten memes and angry tirades (from both sides!) about Trump? My life will go on without them. My life will be full and happy without them.
Consider this a public service announcement: If you follow me on facebook, you might want to subscribe via email (check the sidebar) or on Bloglovin in order to get updates.
I blog for me. It’s like (mostly) free therapy that comes with a community. Earlier this winter I dialed back from participating in ALL THE LINKUPS EVER!!! in order to be more balanced. Well– I’m going to dial it back a little more, with only occasional library haul posts and no more Just Enough Info.
I also blog for other families– families who are suffering through Mass with littles, families who are facing a diagnosis like ours, families who are open to life even when it’s not easy. Because I know how isolating all those situations can be, I will keep blogging. I will keep sharing the challenges of my family.
But I can’t afford to waste time checking to see what my cousin’s neighbor’s ex-boyfriend’s third grade teacher is up to. (PS–If you are my cousin’s neighbor’s ex-boyfriend’s third grade teacher, I’m not actually stalking you. It was just an example. Actually– how have you been?!?! Would you like to get coffee sometime? Do you have an insurance guy? I know someone reliable…wink wink)
I guess that makes me lucky. The unfortunate truth of being a parent is that we don’t know how long we’ll have with our kids. This is 100% true of all parents. Are you a parent? It’s true for you. It’s true for me, too.
What makes me lucky is the ongoing reminder of this truth. I *know* I can’t afford to choose selfish things over spending time with my kids. Not everyone else has realized this. Not everyone else gets a reminder every month when their child goes to the hospital for an infusion that lists “death” as a possible side effect. I’m not saying I’m perfect at making the right time choices (ha!), but that ongoing reminder sure does help to provide some marginal success occasionally.
Wednesday is the start of Lent. “Remember you are dust, and to dust you shall return,” we hear a hundred times as we wait in line to be marked with a symbol of that truth.
This year more than ever, I accept that reality. I am going to die. So are my children. And I’m not going to spend time doing dumb stuff. Okay. That’s not true. I’m going to spend LOTS of time doing dumb stuff like playing wolves and reading every Gerald and Piggie book ever published. You know what I mean. I have an idea of the things I do that are genuine self-care (like reading awesome blogs!) and the things that are time suckers (We are not in the market for a dog, so there’s no legitimate reason to browse the Humane Society site.).
This Lent I’m also going to work on embracing my family’s mortality. (Eesh. That sounds weird when I put it into words.) Seriously though, I want the idea that today might be my last day with Cee or the others to shape my choices. Rather than it being a morbid thought, it’s a joyful one. I am free to cut through the clutter in my life and focus on the heart of what brings true happiness.
I don’t exactly know how that will look moving forward. Probably some more staycations and Yes Days. Hopefully less
yelling raising my voice. And lots of poop jokes. (Moe will be four next month so the punchline of every joke is pretty much “poop.”)
I had Cee write the words on a bit of poster paper so I can see them all throughout Lent. Her kid spelling = <3
Yes. I am dust. And I’m going to spend as much time as possible with my loved ones until I return to it.
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Linking up with www.theologyisaverb.com and www.reconciledtoyou.com for #WorththeRevisit.