Super Uly

“don’t throw your leg at the cat!”

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I feel a little guilty every time I call Ulysses “The Baby”, even though, as the third (and final) child in our family, and with two siblings quite a bit older, he will always be the baby, to some degree. He’s twenty-one months old now: a toddler by any counts. But what do you call a toddler who doesn’t toddle? (this is not the set-up to a joke! I’m serious!) The very word conjures up wobbly steps and independence. Uly’s evolution to walking has been, remains, complicated and very dependent.

He is a toddler. He has all the parts of toddlerdom generally assigned to this age, minus autonomous steps. It has been a frustrating stage for him. It’s been a frustrating stage for me, too. The only thing separating Ulysses from other children his age is, well, the ability to run around. But typically-limbed babies aren’t given a lesson on wanting to walk. Nobody needs to tell a baby, hey! you want to stand up taller and get around like everybody else does! Babies just do it. Their bodies and brains work together to meet developmental milestones. But what happens when a body can’t keep up? The brain gets frustrated! Crawling is still his main self-ambulation, and I think he’s pretty much done with it. He’s a good sport, but there are times when he tries to pick up something large and move it, or reach for something too high, or just get out of my arms already, and he screams that impatient toddler scream. And there’s not always something I can do about it.

After the longest spring, and a gradual return to normalcy, this summer has seen us getting back to weekly physical therapy appointments, back to lots of prostheses practice at home. Uly has always been thrilled with his legs. His superlegs, his kicking legs, his walking legs, as we call them. But he can’t put his legs on by himself. It takes me a few minutes. And he can’t walk without a spotter close-by. And he can’t take steps without holding onto something, a table, his walker, my hands.

But, he’s walking! His steps are every bit as determined as any toddler you’ve ever met, if not more. Ulysses cannot yet take unassisted steps, but he is absolutely walking.

And we are so excited for this boy. It’s a long road ahead of us still. And I think that might be the undercurrent of my frustration. I am shy to talk about his legs and his walking, because I think there is a misperception that once an amputee has prosthetic legs, walking is a snap; heck, he’ll be running races in no time. While I certainly appreciate the encouragement and optimism sent Uly’s way, the truth is a lot slower.

Something clicked in the last couple of weeks and Uly understands now that his superlegs aren’t just a funny game we play sometimes. He has started to get it. He has started to ask to put them on. He says, “wah-wah-wah” (walk walk walk) and shakes the little basket where we keep his prostheses supplies. When he gets going with his walker, he is so freaking fast. I have to hold on gently to the back of the walker to provide a bit of drag, so he doesn’t run over himself!

But it’s still a very deliberate thing we do, leg time. He needs direct assistance, which is actually not unlike all the rest of the time, when he needs help doing the toddler things he is busy doing all day. I have introduced my little guy to several people like this, “so this is Ulysses, less bones, more spirit!” and that’s just how he is. Uly is a firecracker of delight or mischief. He is quick and busy and wants all the attention, all the time.  But that busy attitude in a baby-who-wants-to-be-running-but-can-only-crawl means the up-down-up-in-and-out-of-mama’s-arms stage feels infinite.

I’m starting to see glimpses of his future walking self. I’ve seen him let go from his walker with both hands, balance alone for just a moment, and then reach out for something else, a wall, or a chair. He is making significant progress every day.

I can get really stuck in the weeds of borrowing worry. Will he ever be able to play unassisted outside? Will he be able to negotiate walking on stairs? His residual legs are so hot and sweaty after one hour of prostheses wear, what will happen when he starts to wear them all day?

Those are valid concerns, but I have to stop myself from thinking too far ahead. When he was a newborn, I couldn’t imagine how he’d move around at all, and yet he turned out to be my earliest crawler, my most determined to Go baby.

We’re doing something completely new and previously unknown to me. We are so lucky to have a team of therapists and prosthetists helping him, and cheering us along. So I don’t have to invent the wheel. We have helpful professionals in our corner. But in my murky brain, it can feel solitary and unsure. The What Ifs and Hows can be overwhelming.

So we take it one step at a time. I’m sorry for the cliche but, how else can I describe the process of letting go expectations as my amputee baby learns to walk?

Although, if it were up to him, I think he’d be running already! Look at Uly go!


(forgive my wonky narrow video. I neglected to tilt my phone to landscape, too distracted by the adorable laughing baby hurtling himself down the sidewalk, and if you’re looking at my blog on an idevice, i’m not sure the video will play. darn it. Also, the title of this blog post? totally something that came of my mouth tonight.)

Categories: amputee toddler, Super Uly | Tags: , , | 10 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

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

genetics for dummies

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We don’t have a name for what affects my son.  We have a collection of abnormalities, both extremely rare (tibial hemimelia), less rare (ectrodactyly), and not all that rare at all (ventricular septal defect).  He has several other very unusual peripheral issues. Being able to rattle off a particular syndrome would not change who he IS. But I think it would be a slight relief. It would fill the awkward silent space that overwhelms new introductions. I could meet questions with a solid answer. But I hate myself for admitting that, for being weak against the perception of judgment. The truth is: anyone who needs to know what he “has” in order to gauge their response and acceptance is not someone who deserves to know any details, anyway.

Initial microarray testing has been, so far, inconclusive. I read the best analogy for genetic testing the other day (I can’t remember where I came across this, my eyes cross from all the casual research I do these days) comparing the process of locating an uncommon genetic abnormality to reading a huge book, like War and Peace, and trying to find one typographical error.

After my warranted freak-out with regard to the who? where? when? of his upcoming open heart surgery, we did explore other options, met with another pediatric cardiology practice. We considered everything, and we’re sticking with the original plan, with the same team, after all. But it feels like we’re making an informed choice now instead of being bossed into some arbitrary default. I really needed to feel like I was choosing something.

Lately most of my choices involve choosing to cloister myself and the baby away from everything as much as possible. And I know it’s not the most sustainable -nor healthy- choice, but it’s honest. We stay home a lot. I zip mister Six to his three day a week school, I run pertinent errands, I avoid almost everything else. Being around people is still incredibly difficult for me. I have this constant, panicky dread, like riding through a carnival haunted house, and that level of spook is hard to tamp down in public. Some of it’s my own crazy, some is the pragmatism of expecting inevitable unkindness or ignorance.

Having a specific diagnosis, a certain named syndrome, wouldn’t necessarily help others to understand and it wouldn’t change who he is, but it might clue us in on any additional concerns. Maybe there are no other problems. We don’t know. It’s hard to enjoy the regular stuff of his babyhood (and most of it is as sweet and dull as the life of most any three month old) when I’ve got this wormy nagging scrutiny always on the lookout for previously missed dysmorphic features. When is the last time you felt compelled to measure your baby’s philtrum?

Like any parent, I hope for “the best” for my children, some indeterminate soup of happiness and ease. But knowing that the playing field isn’t even, that my little babe is starting out with a lot of knocks against him already, muddles up the regular way of things. I have this internal battle, my ferocity and determination at odds with a consuming misplaced guilt. To anyone who dares put up any extra obstacles for my boy, harshness or assumptions or anything negative at all, I want to kick them in the shinbones. But then I feel guilty, so unbelievably filthy with guilt, for having shinbones myself. I have a baby born without shinbones. Can you imagine your life without lower legs? Your children’s lives? And I have read the triumphant stories, I have seen accounts of amazing amputees. I know Ulysses will learn how to use his body and I know he will amaze us. Yes. But it’s not “the best”.

You know how I said that my life feels like a movie now? How the days surrounding his birth felt so surreal as to have been scripted? How it’s all been so over-the-top? Guess which day he’s having heart surgery. Go on, guess. Out of all the days in the year, only a movie would expect anyone to believe that the open heart surgery of such a wonder of a boy would happen on Valentine’s Day. And yet. . .

I promise I won’t ever break down in your presence. It’s in my DNA to keep it together with a smile and a joke. And if I don’t have something funny to say I will at least be even-keeled. You might not think that this is hard for me at all. But you’d be wrong.

(maybe you already saw that picture up there on instagram. he’s 12 weeks old and i’m just now taking a deep breath and showing his hands. these are HIS HANDS i’m talking about. one of the most obvious parts of a person, certainly not a secret part. when i tuck his hands into his sleeves, it’s not because i’m ashamed. it’s because i want him to receive the same neutral kindness that any baby would receive. but he’s so squirmy now. waving his little arms around. there’s a special place in hell for anyone who is less than kind to this boy.)

Categories: ectrodactyly, Super Uly, tibial hemimelia, Uncategorized | 14 Comments

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