amputation

super uly 2 years old!

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.)

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Categories: amputation, open heart surgery, terrible prenatal prognosis, unexpected | Tags: | 27 Comments

good thoughts

sunbeams

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:

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(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!)

Categories: amputation, gratitude, seasons | 6 Comments

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

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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

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