Just over two years ago, I was told that the baby I was carrying would probably not survive birth. If he lived, he was not expected to live long. The known facts were incomprehensible and frightening; the predictions were even worse. It was as though the child I’d been anticipating had been pulled from my gut and replaced with a nightmare.
But he did not die. He surprised everyone by living. Despite legitimate fears and worries about his challenges, he surprised everyone by being so remarkably alive.
Ulysses is TWO now, can you believe it? I cannot. He’s zonked out on my back as I type (the only way to eke out a non-car nap for this boy is to wear him, still.) and the truth is that I’m a few days late in writing here (I had wanted to post on his actual birthday) because I’ve been so occupied with LIVING with him. That’s mother-of-toddler speak for: I don’t have time to write about my kid because my kid takes up all of my time!
No ultrasound scan could have determined that I would have a baby with such spirit and vim. No blood test could have indicated that he would be a busy, inexhaustible rascal, getting into everything in a flash. It’s been two years of heartbreak and wonder, two years of not sleeping, two years of swallowing stress and collecting bills and learning so much! It’s been a freefall through dread and inadequacy, a mountain climb without any gear. It has been hard. It has been a lifetime and an instant. Only two years? Two years already? Yes.
I put together a photo story of Uly’s first two years. If you have about five minutes to spare, you might like to a peek into his life, our family’s life. You might think about Ulysses as that little guy with limb differences, or of that baby who had a couple of open heart surgeries, or maybe as the toddler who is learning to walk on prosthetic legs. Those things are true. But I hope you also think about his grin and his sparkle, his impishness and determination. I don’t call him Super Uly for nothing, you know!
The slideshow ends somewhat abruptly, but I like to think that it finishes with visual ellipses. It’s been a full two years, but his story is barely starting. . .
(i used songs on the slideshow that are part of my experience with ulysses, and are very evocative, for me, in that regard.)
I shut the curtains now before 5 pm; any pretense of hanging onto some delusional fragments of summer ended more than a month ago! I held on for as long as I could, pretended that the warm lazy limbo was limitless, although such a freewheeling season is largely an idea, not reflective of real life. Even summer has its stresses and obligations.
I did not realize I was actively dreading Fall until it was upon me and I remembered, Oh! I’ve spent significant time in hospitals the last two Novembers. No wonder I’ve felt a vague sense of foreboding as the leaves changed colors, as the rain settled in, as the temperature dropped.
Today is the sixth of November, one year exactly from the date of Uly’s leg amputations. One whole year since I consented to having part of his body cut off and discarded. It was the right decision. It was not an easy decision. A year ago, he was in such pain, he had complications from surgery that made recovery slow and difficult. He had to go back into the operating room several times; his skin was dotted all over with evidence of so many IV pokes.
But now? Now that little elf zips around like a speedster with the aid of his prostheses and a tiny walker. (not all the time yet, or even most of the time. but we aim for “leg time” every day.) Our daily life is a cakewalk in contrast to a year ago. I have nothing acutely worrisome on my radar, and yet I still feel jumpy! I guess 2 nerve-racking Novembers in a row is enough to set a subconscious pattern of troubling expectation.
I took an intentional, lengthy break from this blog. I’ve taken a break from writing much at all, because my brain used all of its energy in keeping the regular stuff going and that has been good enough. It had to be good enough because that’s all I had. But now I have a little bit more again, or at least the gumption to keep at it. No duties have been allocated elsewhere, and no long-term concerns have disappeared, but I had some time to figure out if this blog is helpful (yes.) and if it matters at all (I decided that it does.) and whether or not I want to continue writing here (I do. even as I need to make writing elsewhere a priority). And I don’t mean to imply that it’s been all woe and worry in my life lately. It has not! I think I do a pretty good job of keeping on top of things, enjoying the good stuff and weathering the rough. And by “rough” patches, I mean the regular daily wheels, nothing unexpected gumming up the works. But it’s amazing how the regular stuff can ooze all over every minute of the day and not leave much space for anything extra.
Since the last time I updated: we took a few quick, nearby trips, the husband and I acknowledged SEVENTEEN years being married to each other, we went on a terrific road trip to southern California and back, I had a birthday, and Uly was fitted for his second set of legs.
And now we’re leaning into a steady Fall routine. And now I’m feeling grateful that we don’t have any hospital stays planned, and that I have this grinning sunbeam in my life:
(the top pic was a phone shot from last January; if the kitchen chalk wall isn’t full of a grocery list or a chores for the kids, I try to throw a thoughtful quote up there. this one is a favorite. and the bottom pic is a recent one I pulled off of instagram. hashtag super uly!)
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.)
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.
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.)
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.
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?)
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!
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.)
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.)
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.
"And since old Tom and the children could not know hurt or fear unless she acknowledged hurt and fear, she had practiced denying them in herself. And since, when a joyful thing happened, they looked to see whether joy was on her, it was her habit to build up laughter out of inadequate materials. But better than joy was calm. Imperturbability could be depended upon. And from her great and humble position in the family she had taken dignity and a clean calm beauty. From her position as healer, her hands had grown sure and cool and quiet; from her position as arbiter she had become as remote and faultless in judgment as a goddess. She seemed to know that if she swayed the family shook, and if she ever really deeply wavered or despaired the family would fall, the family will to function would be gone." - John Steinbeck, The Grapes of Wrath.