life

sour grapes

grapes

Today was the eighteenth anniversary of the day I got married. Today was the seventh anniversary of the day we signed the closing papers on our house. Today I made my eight year old cry when I told him we would not be going on our annual camping trip. Today I have been thinking a lot about the quick blink of passing time, about unexpected settling, about disappointment.

For the record: this has been a rotten summer. The older kids have declared it “the worst” but I can’t even whisper superlatives without worrying about superstitiously tempting fate. Oh yeah? You think this is bad? Just wait. I know it doesn’t work like that, but I am spurned into a practice of gratitude anyhow. And even if I can’t avoid difficulties simply by focusing instead on whatever is vaguely good, I can try not to make it harder. Life can be hard enough.

Seven years ago, we moved into a house that had a recent but poor exterior paint job. We intended to paint as soon as possible. Turns out, it wasn’t possible until now. Turns out, we might be attempting the impossible.

We would have deferred this task longer, if it weren’t for chunks of our house beginning to crumble away to dry rot. We’ve had a lot of other stuff going on over the last few years; we put it off as long as we could. And, like everything we do, we’re doing it ourselves. I wish I could tell you it’s all for DIY bragging rights, for industriousness, for hubris. But the truth is that we can’t afford to pay someone else. It’s not glamorous to talk about finances. But I have never aspired to glamor and I know other families must be in the same predicament. We are a one income family, and while that income is decent we have a lot of expenses related to some rough blows we’ve had (a year of unemployment, lengthy hospitalizations) and keeping afloat feels like accomplishment. Any extra costs are not easily absorbed.

We are losing a whole summer to this project. The husband even took off a week of work and spent the equivalent of his usual (50 or so hour) workweek power washing and sanding and scraping. We might not even finish by the time the rains start (we live in Oregon: it’s wet here) but at least the house will be waterproof and the walls won’t wash away.

We didn’t do anything special for our anniversary. Heck, we didn’t do anything special for our marriage, so I guess it’s tradition. We don’t have the time nor money (nor extended family) for special. Frankly, when regular life is so tight and stressful, we don’t have the energy for special.

Tonight the husband and the two oldest are sleeping outside on the trampoline. It was the teenager’s idea, and the eight year old wanted to do it, too. But he was kinda nervous so the dad said he would join them.

This isn’t where I envisioned we might be, eighteen years ago. But I know that my marriage and family aren’t going to wash away. We might have rough times, we certainly have areas that aren’t lovely, but we keep at it, and we patch it up, and we do the best we can. And, in doing so, we set a new precedent for our children. We will always be there for you, we tell them, in everything we do.

It’s a bummer that we can’t go camping this summer. It’s a bummer that the only thing we hoped to do was a simple camping trip, and even that proved to be too much. We have good reasons to be very disappointed. And we have many terrific reasons to be very proud. My children know they don’t have to shoulder the burdens of this world alone. We have given our kids something that we didn’t have. We have given them stability and authenticity. It might not always be wonderful, but it’s always real. It might not always be fun, but it’s always dependable. I think that counts for a lot.

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(grape picture snapped today in my backyard. august is all about sour grapes, literally and figuratively. if you’re wondering: yes, we were practically babies when we got married. he was 23 and I was months away from my 21st birthday. i was going to post a picture of the two of us together, but i couldn’t find one. not even one! although, we didn’t even have our picture taken together the day we got married. civil service at a courthouse. we had no attendants or witnesses of our own. same as it ever was. the husband doesn’t know I took that pic of him today and he’s asleep and certainly doesn’t know I’m posting it. I think it’s ok, though. it’s a good capture of our life lately. he’s way up on a ladder sanding, sanding, sanding. he’s a good, solid, loyal person. i’m glad he’s mine. and, I hate to jinx myself, but I am going to try to write in this blog more regularly. maybe even tomorrow! I have a lot updates about Uly to share. somebody is still reading out there, right? maybe?)

Categories: life, Uncategorized | Tags: , | 18 Comments

it’s just an illusion caused by the world spinning round

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Last night was the first night we put Uly to bed without a bandage of any kind covering his chest wound. Maybe we’ve quietly crossed over some vague delineation between wound and scar.  It isn’t raw and bloody anymore; I don’t think we can accurately refer to it is a wound. But it’s a doozy of a scar.

I finally removed the last remaining medical supplies out of my office, which was serving as some kind of ad hoc nursing supply closet. When I ask the older children to clean in-progress art projects off of the table, it’s not because we need the surface for dressing changes and a nurse visit, but probably because we’re about to eat.

It’s back to normal around here. Ulysses was removed from the wound vac  a month ago. Without that beeping albatross, we have been free to do as we please. Actually, I mean, we have been free to do the boring stuff people do without too much foresight or frustration.

But sometime back there, while we were extolling the merits of tegaderm and taking inventory of saline syringes, summer happened. Do you ever look at the google street view of your home address? The actual front view of my house hasn’t been updated since google first unleashed the feature, but our cross street picture is more recent. I can virtually click myself down my street and jump ahead in time by several years. The old pictures have a grainier resolution and washed-out color. The new pictures are of sharper quality, more vivid. The difference is a jarring surprise. There is evidence of the work (six years worth!) we’ve put into our little yard. We’ve transformed a dull city lot into a lush agrarian corner and, despite my orwellian mistrust of google, seeing the contrast so easily is both amusing and gratifying.

Summer feels similarly surprising to me this year. I know what we’ve been doing, but it feels like we got here in one quick click.

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I am so sporadic with updating that I feel embarrassed every time I return. Like driving away from a party and realizing I forgot something and not wanting to turn back, for fear that the hosts have already gone to bed.  Hi, it’s me. I’m so sorry! Hate to bother!

I might not ever stop feeling awkward but I do aim to get back into a more consistent rhythm here. I have so much to tell you!  Maybe if I wrote more I wouldn’t want to listen to The Flaming Lips Do You Realize? on repeat in the car for several days in a row. Pretty sure my kids are permanently scarred for hearing their mother sing, “everyone you know someday will die” so many times in a row. (not really. they were singing along, too. it’s true, you know.)

Categories: life, Super Uly | Tags: , | 3 Comments

the middlest

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I jokingly tell people frequently that large sibling age gaps are one of the best kept secrets of family planning. You only get the joke, though, if you realize that we didn’t actually plan it this way. The great irony of family “planning” is that we can’t, not any of us, know what the future holds. It’s a gamble, a cliched leap of faith, and if our “plan” works out, we pat ourselves on the back for being so clever. But, for those of us on Plan B, or so, we know that the truth is a whole lot messier. If you have the exact number of children you wanted, spaced apart like you wanted them to be, it wasn’t your good planning that made it happen that way.

I read an article the other day, something about studies indicate the most stressful, the most challenging, increase in family size is from two to three children. Hmm. When I was pregnant with Ulysses (two whole years ago! whoa!) I thought we’d avoid stereotypical birth order dynamics. I wasn’t pulling Pollyanna expectations out of my backside: it truly was a breeze to add number two. He was a cherub from birth. My pregnancy with him was a cakewalk. He was born at home easily, all ten plus pounds of him. I threw him in a sling and took him wherever I needed to take his big sister.  Adding a new baby to the mix was as easy as anything. And I looked forward to a similar scenario while we were expecting number three.

But, you know. It wasn’t easy. I couldn’t simply bring the baby to the older children’s activities; the baby had so many appointments right from the start and the older children had to adapt to his schedule. A mere three months after his traumatic birth, Ulysses had his first open heart surgery. That kind of thing throws a wrench into the works of any machine. Although, to be fair to the wonder baby, the machine was more complicated, too. Every child is born into a different family, even if they have the same exact parents, in the same exact home, as their siblings.

Now my first boy, that cherubic bear cub,  is seven and sandwiched between a teenager (need I say more?) and a surprising baby with special needs. He is the least squeaky wheel.

When he was about two, he started calling himself Worker Boy. He introduced himself as Worker Boy, insisted I do the same, and refused to answer to anything else. He has always been a boy with a job to do and a mind set on finishing it.  He called himself Worker Boy for years. (hello, friends reading along! remember Worker Boy?) While the snappy name eventually faded, I think it continues to describe his demeanor well. He has always been solid and dependable, a rock. I have said before, without humor, that I want to be like him when I grow up. His wisdom would be something to admire in an adult, but is a remarkable trait for child. He is a long, deep thinker, observant and insightful. Book-ended by more dramatic siblings on either side, though, he could get overlooked. I worry about that. Which is to say, I don’t let it happen. All the wheels in this house get oiled, whether they request it by squeaking or not!

I go into his room before I go to bed, to switch off his lamp. His dad reads to him every night before bed. I am the daytime read aloud-er, but the husband reads at bedtime.  They’re reading the Boxcar Children series now. When the husband says goodnight, he presses play on the boombox on the desk; the boy falls asleep listening to whichever of his favorite books he has in the player that day (Trumpet of the Swan? The Hobbit? The Horse and His Boy? a Redwall book? we’ve amassed a decent collection of audiobooks and he knows them all well and listens to them constantly like familiar, lulling friends).

By the time I walk back there, several hours later, the story has stopped playing. It’s quiet. His good cat is always on guard at the foot of the bed. And even when I’m in a hurry, maybe the baby’s crying across the hall, maybe the kettle’s whistling in the kitchen for that one last cup of tea, I think for a second about him, and our day together. Did I give him enough?

Family planning might (if you’re lucky), grant you a certain size of family. But you can’t plan circumstances. You can’t plan personalities. My family isn’t quite the shape I set out for it to be. I thought, when we started this family journey, I’d be at the helm of a large crew, feisty and bookish. But three children, spaced widely apart, is less organized than a crew. Their interests and abilities are far apart. I am always pulled in wildly different directions. But we can, and did, plan what kind of family we wanted to be. And that’s not a luck thing, that’s a choice. We choose to be a family who want to know each other. I want to know my kids. I choose to know them when they’re little so that I will know them when they’re big. And if they don’t come to me, that’s not their job. I go to them. My seven year old, my middle child, my worker boy, might spend so much of his time in his quiet thoughts, that I could shrug my shoulders and say, eh, he knows where to find me. But it is never the job of a child to do the work of building this relationship. I go to him. I seek him out, I plop next to him on the couch and squeeze him, I tell him I love him every day.  I don’t want him to assume that he’s loved. I want him to know it undoubtedly.

I like to see what he’s left out on his desk. He is serious about his drawing work, his head bent over such tiny, detailed pictures. He leaves them arranged just-so, unfinished, but ready to get back at it tomorrow.

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Categories: birth order, choice, family, family planning, life, love | Tags: , , , | 13 Comments

we don’t have to talk, let’s dance

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Can you believe that Ulysses has had a wound vac for nearly SIX weeks? And he still has it? Time is such a fuzzy, meaningless thing when you’re measuring days by nurse visits. Every three days the sweetest nurse ever comes to our house to change his dressing. We totally lucked out on the home health nurse front, and were assigned someone wonderful who lives -surprisingly!- just a few blocks from us. Isn’t it funny how you can live in a small town for so many years and never have met someone before?  Uly is not at all happy about being held down on the dining room table twice a week, but his wound is finally shallow enough that his hollering is certainly more about protesting than pain. We used to give him a mL of oxycodone before changes, and he doesn’t need that anymore. Progress!

You know that saying, “the days are long, but the years are short”? I have been thinking about that quite a bit. We’ve been thrown into some kind of exaggerated slow motion parallel universe wherein time CREEPS by in the day to day, but then whammo! Another month is nearly over again and where did it even go? It disappeared in antibiotics and drainage tubes and appointments and laundry and meals and so much stir craziness.

But I do know that we’ll look back and barely remember. I do think that we’ll have better days soon.

And maybe that is why I’m listening to the new Edward Sharpe and the Magnetic Zeros song on repeat. I can’t wait until the whole album is released in July; they’re one of my favorite feel-good bands to listen to when I need a boost.

And! while I’m talking feel-good boosts, I have to share something that came to my attention just yesterday. I almost couldn’t believe it when I saw it because I truly thought interpretive dancing to Landslide was my own unique thing. I don’t think there exists any video of me, but if someone in my house is mildly down in the dumps and needs a quick rescue: I sing Landslide seriously while earnestly dancing or doing something unrelated and ridiculous, like, say, juggling a heap of invisible melons. It a perfect mix of silliness and poignancy and will generally even snap the teenager out of a funk. Or maybe she pretends so I’ll stop sooner. I imagine this man’s mother would implore him to put on some pants, but I am still amused enough to share.

 
(quick pic of Uly and I in our natural habitat, which is the bedroom rocking chair where I attempt at least once a day to weasel a nap out of him. next time I should brush my hair and do it on purpose! I am not photogenic but I am honest. And, what if I accidentally tapped into some kind of a cultural meme in which exaggerated dancing to Landslide is a thing and I didn’t even know? Is it a thing? do you do it, too? no? it’s just me and this guy, huh?)

Categories: life, Super Uly, wound vac | Tags: | 3 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

these are the days of miracle and wonder (and don’t cry baby, don’t cry)

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Hey, it’s been a while. Last month kicked my ass.

There is no good time for your baby to have open heart surgery. It’s a scary, dreadful thing. But you do it because if you don’t do it, your baby will die. What would you do to keep your baby alive? Yes, YOUR baby. The one sleeping near you now. Or maybe the one who isn’t a baby anymore, but you remember that babyhood like it was yesterday. (Where did the time go?) You would do anything.

In the last month, Ulysses was sedated under general anesthesia four times. He’s been under general now about ten times total. It does not get easier. It might keep getting harder, in the way that everything we do is some kind of a dance with statistics. He was fine last time. But this time? Will he wake up? You always wonder. Even when the re-entry is rough -and for Uly, it always is- I want to cheer when his eyes open, even when they’re the panicked eyes of fear and disorientation. I put my lips right up in his ear and hum the same lulling hummy song I’ve hummed to all of my babies, trying to break through beyond the  drugs to where he is.

I guess I’m glad I didn’t know going into into it that last month would be so hard. You can’t plan for rare complications. Very few children develop post cardiac surgery wound infections. Among those who do, fewer still have the infection reach the bone. By the time his chest was re-opened, the infection had spread to his sternum, pulling the bone apart that had been split and wired closed just the week prior. His taciturn surgeon reiterated how much such an infection would have hurt. But I’m the mama. I knew my baby was hurting. I watched the clock and kept track of when morphine was due. It wasn’t even enough. I would have done anything.

So a few days,  a week at the most, turned into seventeen nights in the hospital. Seventeen nights of sleeping a couple of hours a night, in several minute increments. I overuse the word hard when describing this experience. I remember thinking about this when he had his amputation surgeries last November. I thought how hard that was but when I say  “hard” what does that even mean? How do you define this kind of hard? Is it the hard of letting my baby be carried off by a stranger? Is it the hard of pacing hallways while I wait for an update from the operating room? Is it the hard of standing on my tippy toes at his bedside, leaning over and nursing him awkwardly for hours at a time, because it’s the only thing that comforts him a little? It’s emotionally hard but it’s also physically grueling. It’s a vaporous, worried hard. It’s a tangible, muscle aching, exhausted hard.

It’s not home like usual yet. We have a nurse who comes to our house twice a week to change the dressing on his wound vac. Oh yeah, Ulysses was discharged with a wound vac. Don’t worry if you don’t know what that is; a few weeks ago, I’d never heard of one either. It’s basically a suction machine that is attached to my son’s chest by a four foot tube. His wound his filled with foam which is taped up with a special filmy tape which is adhered to a tube which extends to a small box that provides a constant, 24/7 gentle suction. It’s just as cumbersome as it sounds and I kind of hate the thing, but I can’t deny it’s working. Every dressing change finds his wound remarkably smaller. This technology didn’t exist that long ago. A lot of infected tissue was removed from his chest. The alternative to the wound vac would be months and months of messy dressing changes, slow healing, more risk. He’s going to be left with one heck of a scar.

The whole household is in the throes of an exaggerated kind of cabin fever and general out of sort-ness. I am not sure how we’ll get everything to rights again, and I don’t even know how much longer until Ulysses is free from devices and medication. Another month?

But we’re home. And we survived. And his heart surgery was successful and I caught the ensuing infection quickly enough that it didn’t spread to his bloodstream, and my other children deserve trophies for being so patient and adaptable, and we aren’t bankrupt yet. I have more to write about his hospitalization, things I learned and how I’ve changed, but maybe I’ll save that for the book. (I’m not really writing a book. but that sounds better than “life has been so stripped down to the barest essentials that writing was a luxury I couldn’t afford. and now I’m trying to get back into the habit. but I’m depleted in every way and even this tiny quiet blog overwhelms me.”)

(smiling Uly above was still in the hospital. I made small updates via instagram all last month, so you’ve probably seen that picture already. blog title from the chorus of The Boy In The Bubble. I believe that there are some things that everybody should be able to agree on. Some kind of great, equalizing truths of humanity like Be Kind To Others and Paul Simon’s Graceland. my sons and I had a dance party to that album this afternoon and I’ve had all the songs in my brain the rest of the day. for weeks, Uly was hurting so much he couldn’t even sit unsupported. He still hurts some. He stops himself from coughing and is careful with his movements. but he was dancing today. he is a wonder.)

Categories: life, open heart surgery, Super Uly, unexpected, wound vac | 5 Comments

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