who watches over you


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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4 thoughts on “who watches over you

  1. I love They Might Be Giants.

    Sending light, love, strength, sleep, all of it your way.

  2. Donna

    I’ve been a quiet follower of your blog for some time. It’s long overdue that I tell you how much I appreciate and look forward to your posts. I think about you and your family often… always sending strength and love. It always surprises me in situations like this where I feel so connected and concerned for someone I don’t even know. It’s a credit to your words and the way you put together the pieces of your life so eloquently… You should know that I and many others (possibly also quiet) are out there supporting you. By the way, I followed you on Instagram today too. You are of course more than welcome to follow me as well. Nothing extraordinary on my end… Mostly my kids, my cats, plants… and other randomness that strikes me as beautiful…

    • oh, what a lovely comment. I very much appreciate that you took the time to let me know. I DO always wonder who is reading along. . .

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