gratitude

good thoughts

sunbeams

I shut the curtains now before 5 pm; any pretense of hanging onto some delusional fragments of summer ended more than a month ago! I held on for as long as I could, pretended that the warm lazy limbo was limitless, although such a freewheeling season is largely an idea, not reflective of real life. Even summer has its stresses and obligations.

I did not realize I was actively dreading Fall until it was upon me and I remembered, Oh! I’ve spent significant time in hospitals the last two Novembers. No wonder I’ve felt a vague sense of foreboding as the leaves changed colors, as the rain settled in, as the temperature dropped.

Today is the sixth of November, one year exactly from the date of Uly’s leg amputations. One whole year since I consented to having part of his body cut off and discarded. It was the right decision. It was not an easy decision. A  year ago, he was in such pain, he had complications from surgery that made recovery slow and difficult. He had to go back into the operating room several times; his skin was dotted all over with evidence of so many IV pokes.

But now? Now that little elf zips around like a speedster with the aid of his prostheses and a tiny walker. (not all the time yet, or even most of the time. but we aim for “leg time” every day.) Our daily life is a cakewalk in contrast to a year ago. I have nothing acutely worrisome on my radar, and yet I still feel jumpy! I guess 2 nerve-racking Novembers in a row is enough to set a subconscious pattern of troubling expectation.

I took an intentional, lengthy break from this blog. I’ve taken a break from writing much at all, because my brain used all of its energy in keeping the regular stuff going and that has been good enough. It had to be good enough because that’s all I had. But now I have a little bit more again, or at least the gumption to keep at it. No duties have been allocated elsewhere, and no long-term concerns have disappeared, but I had some time to figure out if this blog is helpful (yes.) and if it matters at all (I decided that it does.) and whether or not I want to continue writing here (I do. even as I need to make writing elsewhere a priority). And I don’t mean to imply that it’s been all woe and worry in my life lately. It has not! I think I do a pretty good job of keeping on top of things, enjoying the good stuff and weathering the rough. And by “rough” patches, I mean the regular daily wheels, nothing unexpected gumming up the works. But it’s amazing how the regular stuff can ooze all over every minute of the day and not leave much space for anything extra.

Since the last time I updated: we took a few quick, nearby trips, the husband and I acknowledged SEVENTEEN years being married to each other, we went on a terrific road trip to southern California and back, I had a birthday, and Uly was fitted for his second set of legs.

And now we’re leaning into a steady Fall routine. And now I’m feeling grateful that we don’t have any hospital stays planned, and that I have this grinning sunbeam in my life:

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(the top pic was a phone shot from last January; if the kitchen chalk wall isn’t full of a grocery list or a chores for the kids, I try to throw a thoughtful quote up there. this one is a favorite. and the bottom pic is a recent one I pulled off of instagram. hashtag super uly!)

Categories: amputation, gratitude, seasons | 6 Comments

who watches over you

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Today I felt sorry for myself. I stood above the baby while he cried, arms raised to me, mamamamamamamamamamamama, and I thought What Is This All About Anyway? It’s been over two months since I’ve slept more than a few hours at a stretch. My days are full of mitigating the frustration of a baby attached to a small electrical appliance (plus all the regular stuff going on around here). But when the baby in question is of toddler age and mind, yet still with the mobility of a baby, that frustration is greatly increased. He can’t say: Hey guys, I would really prefer to be more upright and running around; his language skills aren’t up to that level, but I can tell he it’s what he’s feeling. He doesn’t really know that other babies his age are walking. But his brain is discontent with crawling. And, lately, the crawling is impeded by tugging along a wound vac. He turns a corner, or climbs up and over the bottom shelf of the coffee table, and the darn thing gets caught and Uly pulls the until the tube is taut and then he screams. Mamamamamamamama.

Sorry, baby, for using your understandable frustration to launch myself into the throes of an existential crisis. But if I’m going to grumble about having basically lost two months, so far, to his cardiac surgery and ensuing complications, I might as well add in questioning the great big meaning of life altogether.

And so I had a little It’s Not Fair freakout today. And it’s NOT fair. And that’s nothing I haven’t realized or declared before. Life isn’t fair. It’s not fair for me and it’s probably not fair for you and how that unfairness is distributed is also not fair. Maybe your sliver is bigger than you need. Maybe you still think it’s not enough.

It’s been a while now of leaving the house only for appointments, of cultivating some kind of circumstantial social pariahdom. It’s been isolating, is what I’m saying. It could drive a person off the edge!

But wait!

I did feel overwhelmingly exhausted (in every way) today, but I have good people in my corner, kind friends who believe in me, and Ulysses, and our whole little family. If they think we’re worth cheering for, and I respect their opinions and trust their judgment otherwise, I think perhaps I should step back a bit, look at this from their perspective. I am so in the thick of it, I see the drudgery and sleeplessness. I can’t always see the grace and accomplishment. I don’t usually think of myself as having done anything special, or beyond, or remarkable. But, we’re nearly two months into this extra upheaval and I am just now having a feelings-gone-berserk freakout? Maybe that is worth something after all. Maybe I should be gentler with myself. Maybe I’m doing ok.

So, thank you, friends, for being so kind to me, to the lot of us. I have scattered friends across the country, and nearby also, who brought or sent gift cards and care packages, cards and encouragement. It makes a difference. I appreciate you all very much.

I swear I didn’t mean to be such a slowpoke about acknowledging my sincere thanks for all the good folks we know, but I also swear I had no idea it was going to be this long and tough! I might indulge in a little unabashed pity partying now and again, but my usual guilty sensibilities always kick in soon enough. I won’t let you down.

(still life in bathroom. blue canary in the outlet by the lightswitch! thank you to sweet jenny, in arizona, for knowing just the right thing. blog title and night light referencing Birdhouse In Your Soul, naturally.)

Categories: gratitude, life, Super Uly, unfairness, wound vac | 4 Comments

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