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.)