we don’t have to talk, let’s dance


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


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)


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

heart surgery eve


Every parent has a lot they could worry about. Our children, all of us, are surrounded by potential beasts. But we trust odds and try not to think about worst case scenarios: the car crashes, the accidents, the unexpected illnesses. Because life would be miserable if we lived in fear. Because, probably, everything will be fine. And, still, that worry can consume us. We can linger on the What Ifs and feel the air in our lungs turn sharp and thin. Or we can make informed decisions based on the scope of likelihood; we can’t focus on the outlying few possible tragic catastrophes. But when your baby -your BABY!- is anticipating another open heart surgery, the worry is bigger than that. It’s no longer a case of improbable maybes. Such a serious surgery isn’t a distant made-up beast. Early tomorrow morning, I have to lower my baby into the belly of a terrifying beast. I have to give my permission for something violent and frightening to happen to him. I have to willingly hand him over, and pray that I get him back.

I cannot make my words pretty enough to help you feel comfortable with the heft of my dread. I am so worried.

Do you know what a delightful baby Ulysses is? Curious and amused, quick to grin, he is a tiny charming elf of a baby and I would do unspeakable things to save him from enduring this next week.

I wish your collective good thoughts could be cashed in for rest, because I know that will be in short supply for a while (has been already). But do know that if you’re reading this, and if you’re thinking something kind about that sweet smiling blondie of mine, I do appreciate you being here in this quiet space with me.

Categories: Uncategorized | 23 Comments

dearly beloved we are gathered here today 2 get through this thing called life


I hate sounding like a complainer. I hate complaining. I like to think I wake up every day and notice small things, good things, that, lumped all together, day after day, matter the most. But right now, this day, we’ve got some big things ahead, and I can’t think of anything else.

If we connect other places, you probably know by now: Ulysses needs another heart surgery. I want to say that this is a total shock. But I knew it was coming. I didn’t expect it to be so soon. And I didn’t much mention it because I couldn’t think about it; I couldn’t think about it because I had to pretend it might go away. His amputations and following hospitalization depleted us. It took us weeks (months?) to recover. Sleep rhythms were disturbed, he became fearful and needy. I am not at all ready to go through another major surgery. I have no choice (he certainly has no choice). And this time, I know exactly what we’re in for. He was three months old when he had his first open heart surgery. That was hard. How much harder will it be now, at sixteen months?

Can the timing of a surgery be ironic? Because one day last week the husband and I were whispering to each other, sending furtive texts back and forth, about sneaking away on a spontaneous road trip to the happiest place on earth. We had a one week window to plan a vacation. Maybe? Could we swing it? With mixed emotions, he’s leaving his current job (which he did love) for a new position elsewhere (for complicated reasons). It’s a good decision, the right, obvious decision. And we thought to ourselves: when the unused vacation weeks from the old company are cashed out, we could pay bills (we have a lot of medical bills, you know. it’s just how it is now.) or we could go on a vacation, the likes of which we haven’t been able to make happen for years. And we said, fuck it, yes, let’s. And we started planning it and we were so excited. A fun time for this little family of ours.

I hate hearing how people deserve vacations or time off or anything at all, really. I think we can’t ever tally up all of life’s experiences in a way that makes sense. There is no deservedness and there is no fairness. As long as there are hungry people in the world, as long as there are people without medical care, there is no such thing as “deserve”. We aren’t any of us entitled to anything. So I won’t say that we deserve a vacation. But we sure would have appreciated one. My hardworking, long commuting husband sure could have used a week in-between jobs to breathe and sleep and rest and recharge. That was our best laid plan.

One day we were looking up hotel rates in Anaheim and counting driving miles, and the next day Uly’s cardiologist tells us, “if he was my kid, I’d do it as soon as possible”. How’s that for timing?

The last time we saw the pediatric cardiologist, he said that unless scar tissue growth abated, we’d be looking at another open heart surgery soon. I had to dwell in the possibility of “if” and “hope” so I could get through Uly’s last big surgery. One thing at a time. But when we went last week and learned that instead of abating, scar tissue growth had increased, that his heart function had been compromised, we had no choice. We scheduled his surgery.

I’m disappointed about not escaping for a vacation, yes. I’m sorry that the husband has to trade his palate cleansing easy family week off for a week of intense sleeplessness and worry, of course. A hospital stay with a baby is pretty much the opposite of a recharging week off! But, more much than those things is this: I am so dreadfully anxious about going through such a terrible thing again. I would do anything to keep my baby from having to experience another major surgery.

Because I’ve done it once already I know how awful it will be. I think my anxiety is completely valid, given the seriousness of open heart surgery. I am already waking from sweaty restless sleep due to frightening images of my baby being cut open. Every instinct of a good parent says to protect your baby from any hurt and trauma. I spend my all of my days tending and nurturing and loving that sweet boy. He is too young to understand why this will be happening. Keeping him comfortable and happy -as he’s such a busy, engaged, and curious, sixteen month old- will be such a challenge.

Right now, at sixteen months, Ulysses is a face-scrunching, kisses making, music loving sweetheart. His repertoire of animal sounds he can make on cue grows each day. He carries on whole conversations with different inflections of the words “that?” and “uh-oh!”. He gives hugs and lights up like a halogen lamp when his dad comes home in the evening. He is a wonderful person, and I wish I could pause him like this. I worry about the effects of surgery. The finicky things like sleep regression. The big things like neurodevelopment. I worry. I’m his mama, of course I do.

Shortly after we woke up one morning last week, I saw that a friend of mine in Germany (hey Amy!) had posted that she played Prince’s Let’s Go Crazy for her kids and they’d gone nuts for it. Sometimes you just gotta dance, you know? And so inspired I pulled it up on my trusty Spotify. From the moment the spoken word part at the beginning started, that boy was into it. He loves a good dancing song, this one. I grabbed my phone and caught some quick video. Don’t mind the grimy Christmas pajamas. I don’t live my life like it’s a photo op. I just live my life and sometimes manage to take some pictures. Here we are fast approaching his third hugely invasive surgery in less than eighteen months. It would be a lot, I think, for any one person to experience ONE traumatic medical event in a whole lifetime (I have never had such a major surgery myself). But three? In sixteen months? Well, that’s a lot by any standard. And I don’t know how we’ll carry on through it. And I don’t know how we’ll recover. And I don’t know what comes next. I just know I’m glad that he dances now.

Categories: Uncategorized | 11 Comments

superlegs (and sleep)


If you’ve ever lamented the frustration of putting shoes onto a squirmy baby, I kindly suggest that perhaps you have never attempted attaching legs. The good thing is that Ulysses is overwhelmingly delighted by these odd plastic spheres (you should see him start to kick as soon as they’re attached!), but the fit is tricky and precise and requires just-so positioning. Prostheses are a science, but also a guessing game of trial and error. We’ve had his first set of legs for over a month now, and after a few adjustments with his prosthetist, I think we have a fit that will work for him. (you know, until he grows.) Not all prostheses are created equally. Each socket is a custom creation. His sockets use suction to keep his legs attached. Because he is a chubby baby, it’s quite a challenge to have sockets that fit so exactly as to create sustaining suction. Every time he shifts, his chub shifts and jeopardizes the fit! And without the suction, his legs fall off, defeating the whole purpose. The current purpose being foremost to balance.

Let me back up a minute here.

Yay! Uly has legs! I have seen my grinning elf of a boy standing up!


It was apparent, before and after his birth, that he would never walk. Those exact words were said to us, “he will never be able to walk.” And left as he was, that is true. Had we not chosen to intervene with drastic, major surgery, that would remain true. The legs he was born with were not walking legs. We knew from very early on that the only option was amputation. For some children, with less severe bone deficiencies, reconstruction is an available choice. For Uly, there was only amputation or never walk. It was that obvious, that clear.

I remember when we met our surgeon and therapists at Portland Shriner’s hospital for the first time, Uly was only a couple of weeks old, and they said he would have no trouble crawling. They said he would hit every developmental milestone until pulling up to stand. I remember that I spontaneously burst into tears because at that point, I was still so raw and scarred from his birth, I couldn’t even begin to imagine him crawling.

But they were right, you know. He was my earliest crawler. He is my fastest crawler. He is -BY FAR!- my “busiest” baby. He is the baby who gets into everything and wants to Go! Move! Do! all day.

That busy, fiery spirit will serve him well, because learning to walk with prosthetic legs is NOT going to be easy.

Walking might be a while yet. We aren’t in a hurry.

Right now, we’re working on balance. It’s a lot like coaching a baby to balance on stilts. No, it’s exactly like that because Uly’s first prostheses are essentially stilts. He has no grounding feet to feel and stand upon. We have artificially hoisted him up into the air and he teeters there, top heavy.

In our house, we’ve taken to calling them superlegs. I know that some families with children in prostheses (upper or lower limb) use the term ‘helper’ (helper arm or helper leg). But ‘super’ as a prefix seems to fit better to me. Extra, beyond, more. He has superlegs and we already called him Super Uly and we do think he’s Super. He’s learning how to do a hard thing that is far beyond the requirement expected of most babies. We clap and cheer when typically limbed babies figure out balance and standing and steps. And it IS thrilling! But take that same typical baby and strap them to some stilts, and our jaws would drop. Can you even imagine?! But, of course, that would be an exploitative stunt, and in Uly’s case, and for other amputee babies, it’s a crucial life skill. Walking comes in handy, wouldn’t you agree? So while we obviously aren’t doing this for the amazement factor, it IS amazing. My wee chubby baby who barely speaks a few words is learning to balance on stilts. It blows my mind, it does.


I wrote a while ago that before his superlegs were made, I had the option to provide his prosthetist with any fabric of my choice. The legs are plastic, but fabric can be added to the plastic molding for an extremely individual appearance. Every socket is one of a kind already, because no two residual limbs are ever the same, but there is truly no limit to what the exterior design can look like. I had a small freak-out about this. It’s not that big of a deal. The color or pattern won’t help him or impede him.  But it felt like a heavily weighted decision to me: I needed to choose something meaningful.

The fabric on Uly’s superlegs is from a purple woven baby sling, a sling that I’ve carried all three of my babies in when they were tiny. I’m a big believer in holding your babies as much as possible. Baby slings and babywearing and keeping little ones close are all common these days. When my fourteen year old was born, these things were less common. It would have been easy to default to what “everyone” did, but that didn’t feel right to me. I am tremendously grateful that I honed into my parenting philosophy (if you can call ‘instinct’ and ‘trust’ a philosophy) before my first was born because I believe that laid the groundwork for who our family has become. I still wear Ulysses frequently (every day! sometimes for hours a day, depending on his neediness!) but the one piece purple pouch sling I use for newborns has long since been outgrown.

So that’s the story behind the print on his new legs.

In other exciting Ulysses news, right about a month ago he started doing something so rare and wonderful I barely believe it myself. He started taming unicorns. Which is to say, he started sleeping through the night, like no baby of mine has ever done before. I would have been as surprised to find a mythical equine beast whinnying in my bedroom. Seriously. We sing and nurse and rock in the rocking chair, and then he sleeps. All night. For perspective, my older children did not sleep through the night until they were past three. That’s three years of me not getting a full night sleep myself, times two (ok, 7 years apart, but still). I was tired a lot, sure. But I kinda just figured that’s how my babies are. Ulysses is a game changer, in every way. I sure did not expect to turn this corner so soon, but I am so effing glad about it. Fingers crossed that writing about it doesn’t make it go away. Unicorns always spook and run if you try to take their picture, right?

(thanks for not minding about my quick, blurry photos. if i had a choice between a fake life and beautiful pictures or a solid, authentic life with blurry captures, i guess i’d take the blur. ‘leg time’ isn’t a photo op, it’s therapy, but i’ve tried to snag a few when i can, so we can remember, so he can see himself when he’s older. you were always so busy, i’ll tell him. we could barely keep up. that’s how it is around here. who sees the baby? where’s the baby? ack! what does the baby have? it’s like that. in the middle picture, he’s wearing a shirt i bought over 7 years ago when the big brother was born, on the back it says ‘Changing Hands Bookstore’, which is the indie bookstore we lived near and frequented when we were in Arizona. it was a cool shirt and i liked it, then. but it seems extra perfect now.)

Categories: Uncategorized | 9 Comments

i carry your heart with me (i carry it in my heart)


This morning I woke up to the bicycle horn honka-honka sound my phone makes when a text message arrives. Who was texting me before 7? It was the husband, already at work, who had just heard something that he had to share with me immediately. I squinted into the still-dark. Pistorius charged with murder. My heart sunk. And I’ve felt that sinking all day.

A year ago today, Ulysses had open heart surgery. I don’t know how a whole year has transpired. What do we have to show for a whole year of time? We are here. We are holding on. But I can’t measure this brand of accomplishment. It seems the fashion these days to clock every effort with a stopwatch and shout out any improvement for all to hear. But when I think of how solidly we stand together, this little family of mine, despite so much tough stuff (not just Uly’s surgeries, but boring challenges, too. like long commutes and long hours and finicky finances) I know we have done something remarkable and good.

Yesterday, I told a few close friends that I don’t want to hear any more inspiring stories about amazing amputees. I told them I want to know: what about the mediocre amputees? What about the amputees who don’t win races? Or climb mountains? Or pack large venues with motivational speaking gigs? What about the regular folks? What is life like for the limb-different individuals who don’t do anything very special? For the ones who orbit in small family circles and plod along in the same non-dramatic, stalwart ways that most of us do?

I went to bed last night remembering Uly’s heart surgery. I was remembering the irony of heart surgery on Valentine’s Day and how I’ll never not think of that boy’s heart on February 14th. I was remembering how it took our baby’s open heart surgery for the husband and I to talk about a subject so sad and painful. A fatherless man can grow up to be a wonderful dad. All the people who care about us, who love Ulysses whether they’ve ever been able to meet him in person or not, sent us so many sweet, appreciated messages that day. Last night I was remembering how much we comforted each other, the husband and I, by reading those messages aloud to each other while the baby was sedated and hooked up to all those tubes and machines.

For selfish reasons, I’ve certainly appreciated having Oscar Pistorius’ post-Olympic ubiquity as a handy reference point. Before Ulysses I did not know anything about congenital anomalies. I don’t expect other people, beyond the limb differences community, to know much. So it makes my explaining job easier to be able to point to someone famous. “Kinda like Oscar Pistorius” I have said, so many times.

But now what? I am deeply troubled by the death of a young woman. I want to believe the best. I am reminded that we can never know what happens in anyone’s home. Bigger than that, though, I reminded that humans are flawed and full of mistakes. Most of our mistakes don’t compel arrests and murder charges, though.

Most of us aren’t the headlining outliers. Most of us hover in the middle margins, whether we were born with typical anatomy or not.

So that sinking wrongness I’ve felt all day has been tempered with relief. We’re a whole year past Uly’s first open heart surgery (yes, first. we are bracing for another this year. I haven’t written about that much because I plan to ignore it as long as possible) and I don’t think I’ll ever quite get over that miracle of science and faith. In the build-up to his leg surgery this past Fall, and the ensuing aftermath, his heart defect was largely forgotten. It’s good to remember. We’re grateful he’s here.

I suppose I’ll keep referencing Pistorius, as a shortcut from hemimelia to amputation. I suppose I’ll keep feeling selfishly conflicted. I suppose we’ll keep plodding along.

Yes, if you’re wondering, Ulysses does have his first set of prostheses. But, I’m still too overwhelmed to write about them. It’s complicated.

(photo from a hike to Drift Creek Falls last weekend. a suspension bridge hidden away in the forest. how fun! I carried the baby on my back and thought melancholy thoughts like, “will Uly ever be able to visit places like this when he’s too big to carry?” that’s a rhetorical question. please don’t answer unless you’re Ulysses from the future with a time machine. and courtesy to e.e. cummings for the title to this blog post.)

Categories: amputation, amputees, pistorius, tibial hemimelia | 2 Comments

prosthesis is a noun; prosthetic is an adjective. prostheses is the plural of prosthesis.


We are counting down the days until Ulysses gets his first set of prosthetic legs. It’s exciting! Legs! Standing! Walking! We’ve been waiting so long for this! Yay! So why am I so dreadfully nervous?

I’ll tell you why. Up until now, Ulysses’ “special needs” haven’t necessarily been all that special. (yeah, I know how ironic that sounds, especially considering his major surgeries in his first year.) For most of our everyday life, though, which is largely at home, he is just like any baby. He might not LOOK like most babies but his development is fairly typical. He’s a busy, twinkling elf who likes oatmeal and chasing the cat. He’s tiny and portable and I scoop him up and onto my hip easily, like you do with little crawling babes. And, of course, my crawling babe has no lower legs. I don’t forget entirely about his differences, but it’s just who he *is*. Certainly, his legs, both before and after amputation, have impeded typical physical development. But, my seven year old didn’t start walking until fifteen months. Having a fourteen month old still crawling isn’t that big of a deal. But very soon we’ll be negotiating prostheses, making sure they fit right and are comfortable. Will they pinch or rub? Will he hate wearing them? Will pants fit over them easily? Will he still be able to crawl while wearing prostheses? Will it be awkward to carry him? Is it safe to have him in a rear facing car seat while he has them on? I have all these new concerns now. And it’s like we’ve reached the point of no return. Oh, sure, we crossed that point when he was born. And again when he had his leg surgeries. But prostheses? This is the real deal. And it’s such a big deal.


He had his residual limbs molded the day after Christmas, the day he had his last cast removed. At that appointment, his prosthetist told us that we could choose any fabric we liked to be used in the making of his permanent plastic sockets. Basically, they can plasticize any fabric and mold it into the shape of his limbs. Sockets are customized for an individual, and they connect to the “leg” portion of a prosthesis. Because he’s so tiny, the whole leg, socket and all, will be very small, so basically I could choose less than a yard of any fabric I wanted, to turn into the top portion of his new legs. I had a week or so to think about this, until we went back for his “check socket” appointment.

And that’s why I had an anxiety attack freak-out in the middle of a fabric store. I realized the inevitability of fabric chit chat (“can I help you find something?” “oh, you know, just deciding if I should go with a geometric or a whimsical print for my son’s prosthetic legs.”) and I didn’t want to talk to anyone about it. And nothing seemed good enough anyway. So I left. I left the fabric store without new fabric and thought I’d choose something old from my stash. But when I got home and looked on my fabric shelf, nothing was right. How do you pick a fabric for your baby’s legs? I know the color of his sockets won’t make any difference to how he learns to use these new legs, but it felt so important to me.

The night before we went back to Shriner’s to check his socket fit before the actual legs were manufactured, I made a decision. I would use something meaningful. I would use fabric that belongs to something well loved and sentimental. Instead of figuring out what pattern or color would be just right, I turned my thoughts to which scrap of textile memory to re-purpose. I didn’t have to think long. I had the perfect thing in a drawer in my bedroom, something that has been a part of our family for a lot of years, something that is lovingly remembered and appreciated. When I fetched it and folded it up to take to the prosthetist, I realized that I never would have found what I was looking for in a fabric store. I needed something that matters to me. I know it’s a small, silly thing. I know it won’t change anything for Ulysses. I would slice off my own skin to cover his legs, if I thought it would help, and that would still be a small, silly thing. But he will learn to stand up in legs that have already been infused somewhat with love and good thoughts. I know that’s a ridiculous idea, but give me this hippie dippy woo woo moment, because even secondhand placebo benefits should count for something. I mostly feel fairly unhelpful and useless over here. I must default to a team of professionals for Uly to do the stuff my other babies, and most all other babies, did without any outside help at all. It’s weird and hard having other people so involved and invested in something as seemingly simple as a baby learning to walk. I’m not accustomed to sharing this much of my babies with other people. So understand, that maybe me picking out fabric isn’t just deciding on something that looks cute. For me, I needed it to be something that would say: this is my baby, I am his mama. Ulysses is super and loved and important, don’t you know? Can one piece of fabric say all that?

So, what is this magical, mystery memory fabric? We go back to Shriner’s very soon for the big reveal. I hope that what I gave them was adequate for the socket manufacturing. I’m nervously anticipating what they will look like. The plan is to have his new legs end in solid, wide foundations for a while, before he gets feet (for putting into shoes!) so that Ulysses can learn to balance. I am prepared for that but I’m still so nervous. But I look forward to taking a picture, at that point, of the finished product. And then I’ll explain where the fabric came from and why it is meaningful to me. I hope you forgive my build-up without specific details, but I think waiting for a picture will make it better.

I know those of you who faithfully read here are excited right along with us. And I thank you for sticking with me, even though my posts have been sporadic. I promise I’ll keep plugging along with this blog if you promise to keep stopping by and thinking good thoughts about that twinkling elf of mine.


(recycled instagram pics showing a little of the prostheses process -say that three times real fast!- and the most recent picture of Uly I had in my phone; we were hanging out in a waiting room together for a few minutes the other day. I swear I intend to take some decent portraits, but he is so fast and squirmy. I feel successful when I know where he’s at and what he’s getting into; taking good pictures will require extra adult hands and ideal planet alignment.)

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it takes an ocean not to break


On the first day of this year, a blind woman in an Indian restaurant in Astoria, Oregon told me I had the cutest baby. She had a white cane and a service dog. I don’t use the word blind in an off-hand literary license sort of way. She was still dining as we paid and left and I gave her a quick, “have a wonderful day!” as we stood up and gathered bags and coats. But I wish I had said more. I wish I could have told her how much her comment meant to me. Ulysses is fourteen months old now and I think that was the first time a complete stranger made that kind of normal, casual baby compliment to me. I hadn’t noticed the absence until this exchange and then I realized how different it has been this go around. I started thinking of all the sad smiles I get now instead. And the embarrassed look-away glances. And certainly there have been kind outliers; but it’s generally a pitying, heartbroken kind of kindness. This lady probably didn’t notice Uly’s differences. But she said the regular words people say about babies to me.  I had to tell myself not to cry. The most ordinary things can be extraordinarily important.

It does seem that people, worried about saying the wrong thing, hedge bets by saying nothing. Ulysses looks different from any baby most people have ever seen before. I understand that he surprises people. Do you want to know a secret? Sometimes I’m still surprised, too. It’s ok to be surprised.  So, if you see a baby like Ulysses (and by ‘like Ulysses’ I mean, “different from other babies you’re accustomed to seeing”) I want you to know this: It’s ok to take a second to process. But then smile kindly. And if you bother to say regular boring old baby things, you are doing something more valuable and wonderful than you could ever know.

astoriabridge bridge columbiabridge columbia

(pictures from our spontaneous NYE overnight to Astoria. I thought we needed to be somewhere else for the first day of the year. The sky was clear, the sun was brilliant and we climbed up a very tall tower and pretended we were on the top of the world. maybe we are, if we stand in the right spot. post title from the chorus of the The National’s Terrible Love, which I’m listening to as I type. High Violet is still one of my best albums for background music, if what I’m doing is quiet and thinky.)


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if the fates allow


All the ornaments and festive trappings disappeared while I was sleeping the other night, like magic. The husband was on nightwaking baby duty (that baby. he does not sleep.) and I guess they kept each other from crying by boxing up Christmas, putting it all away. Thanks, husband. There’s something so terrific about having stuff happen when you aren’t looking. I get stuck in thinking that I’m the magicmaker, that I am the only one doing things when no one else is noticing. But that’s a little like standing in a fun house of mirrors and seeing my efforts reflected infinitely. I do good work, no question. But so does he. And I sure do appreciate it. It takes the both of us over here -not sleeping enough, grumbling a little, and trying really hard- to keep this ship afloat.

It was a merry little Christmas. We ate the cinnamon rolls and the egg casserole that we always eat. We opened gifts, we played games together. It was a sweet day for the five of us.

The day after Christmas, Ulysses got his cast off and THAT was wonderful. I am afraid that updating his recovery from surgery will be confusing since I haven’t yet bothered to write about the hospital stay, but I’m going to do it anyway. If you’re following along, he had both lower legs amputated, but there were two very different surgeries involved. He has two very different legs. I call his right leg his “short leg” because, simply, it’s shorter. His right leg was amputated through the knee and it was a straightforward surgery that required only soft-tissue healing. His right leg has been completely healed for weeks. But his left leg, his longer leg, his stronger leg, was a more complicated surgery. His Shriner’s surgeon fused bone together, to create a sturdier, weight-bearing residual limb, and bone takes longer to heal than soft tissue. There is not one way to amputate. Not all amputation surgeries are the same. And that’s why some people can be fitted for prostheses in just a few weeks post-surgery and some people in that same time frame are still healing. Ulysses had a cast on his left leg for seven weeks. That was seven weeks of difficult movement, wardrobe challenges, and no bathing. I am so glad he’s out of that cast. It’s been a long seven weeks.

He had such a happy, splashy bath that first night without a cast. He doesn’t talk much yet, but with all the splashing and kicking he was doing in the tub, I’m pretty sure he was telling me that he was glad that the cast was gone, too.

And that’s what I want this upcoming year to feel like. I’ve never had a cast, but I saw the way Uly stretched out in such relief after that fiberglass shell was pulled off his leg, the way he kept looking at us in kind of a dubious surprise. I thought about how we pretty much spent all last year preparing for and recovering from two HUGE, MAJOR surgeries. And I thought, I hope 2013 is the surprised stretch. I hope 2013 is the relief. It’s kind of a bum deal Ulysses was given, that’s the harsh truth. He will have to work harder to do stuff you take for granted. That’s not mama bear feelings, that’s fact. But how much easier will it be to do all the stuff he needs to do if we aren’t preparing or recovering? I guess what I’m trying to say is that this last year felt like shaky transitioning. I would like the new year to have less breath holding, fewer new worries, more trusting, and so much splashing.

Hey. Do you know that feeling you get when you are lying on the ground on a warm day, with your eyes closed, and your face turned toward the sky, and you can see the sunshine through your closed eyelids in a shadowy, orange kind of way and it feels like you’re floating and everything is fine forever? That’s what this song sounds like to me. You’ve probably heard this one before, I swear it was on a commercial or something recently, but I’m using to do my part in setting the tone for the new year. I want everything to be so fine.

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