march on!

I’ll blog when I have a good picture to post, I think. I’ll blog when I am feeling less confused and rudderless. I’ll blog soon, I’ve been telling myself for days. But if you follow me over on instagram, you know that I have barely posted pictures over there. I don’t think I have even touched my actual camera in over a month. I might not have a good picture for a long time. And if I wait until I have something positive to write about, it might be longer still. I’m not completely negative, but life does feel a little like Wesley and Buttercup flailing in lightning sand and contending with rodents of unusual size in the fire swamp: one damn thing after another.

I find it hard to believe that we’re two and a half weeks past heart surgery. Did we really do that? Did that happen? Ulysses has the healing wound to prove it. Yes. But it feels like a dream. And now that we crossed that hurdle, what next? We learned that he had a congenital heart defect on his due date. Within the hour of his birth, we knew the specificity of his issue and that he would require open heart surgery in a few months. Those “few months” loomed hazy and obscure ahead of us. But we had a goal, as dreadful and undesirable as major surgery on an infant can be, it was a thing to plod toward and do. And now it’s done.

I did a lot of heart surgery research prior to my boy’s hospitalization. I admit to feeling pangs of envy over all the families I came across on the internet who just had that one scary terrible thing -heart surgery- to conquer and then, pow! a projected normal childhood! In our family’s case, the heart surgery was huge (a healthy beating heart is everything, is it not?) but invisible. We can’t turn in our Special Needs card now, broken heart successfully mended. No one can see his heart. His heart isn’t the part of him that makes strangers squint and peer more closely. His heart doesn’t make clothing him a challenge. His heart was, I admit now honestly, the least of my worries. Heart surgery was frightening. I was in an out-of-body haze for the five days we spent in the hospital with him. But I knew our surgeon knew what he was doing. I trusted that the surgery would be successful, that Ulysses would recover quickly. And that’s just what happened. I remember our cardiologist initially explained the necessary surgery as a “one and done”. He’d need surgery once and then he’d have, knock on wood, a long life with a healthy heart. I could wrap my brain around that.

Everything beyond the solid fix-it response to his heart defect, though, is blurry. We know he’ll need bilateral amputations. I say things like “knee disarticulation” now without flinching. The more time I spend with this little guy the more I am not afraid of choosing to cut off his legs. I see, even now as a pre-mobile baby, the way his tiny legs get in the way. It’s hard to dress him, tricky to change his diaper, and he’s still just a little thing. I can see, very clearly, how much these non-functional legs will hinder his development as he grows. What is unclear, though, is how we do get from here to there.

This last week took us back to the pediatric ophthalmologist. My three and a half month old has now had three eye exams. After our first ophthalmology appointment (also, I always thought I was a super speller, but that first H in ophthalmology was news to me!) we were charged with patching our boy’s “good” eye for a couple of hours a day. His left eye has mild corneal clouding (another very rare condition) and impaired vision. He does see with that eye, but not as clearly. The optic nerve is like a garden path, though, and in this case the hazy vision means the path is somewhat overgrown. If we don’t encourage him to use that eye often, the path could become lost completely. It won’t ever be a well manicured pathway, but we aim for it to always be passable. The challenge is that Ulysses has very sensitive skin and all of the eye patches we’ve tried cause an allergic reaction. We shuffled his eye issue to the backburner while we prepared for heart surgery, but now it’s a priority. We need to find less irritating eye patches and continue encouraging him to use his left eye.

In the meantime, we’re awfully consumed, this little family of mine, with how to move. It’s pure irony that my husband works in the Portland metro area and yet we live an hour away. When we lived in Arizona, we couldn’t wait to get back to Portland. We knew right away that Phoenix was not the city for us. We stayed long enough to have a second baby, make some good friends (one super great one in particular), and collect a lot of excellent junk (there’s no thrifting like phoenix thrifting). We didn’t quite make it back to Portland, though: he found work about an hour and a half away. Close enough? Maybe for occasional visits, sure. But he’s since moved on to a dreamy position where he’s appreciated for being the project managing rockstar that he is, and we are stuck being way out here. We’ve endured the current set-up for over two years. And now we have a special needs baby and a calendar full of city-based appointments. For every reason we need to move. But knowing what you need to do doesn’t make the actual doing any easier.

So that’s where we’re at, which is really no place at all, just this foggy limbo of restlessness and vague discontent.

A friend of mine (a phoenix friend, ha!) posted this little clip on ye olde facebook the other day and I thought right away, I need to share this! I watched and loved that movie Once a few years ago, as much as everyone else did, even as I usually disdain sweet romance flicks. It was a bitter kind of sweet, the mixed emotion salty kind that suits me best. Anyway, you know the song and the singer, but look who’s accompanying him! Yes, I have a longstanding crush on Eddie Vedder and, no, I’m not ashamed to admit it. Eddie sings and I swoon and a tiny part of me is always seventeen. I just really liked this. No shit, no roses, indeed.

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Categories: Uncategorized | 6 Comments

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6 thoughts on “march on!

  1. It is so sad you can’t be satisfied or happy enough here. While I can’t appreciate properly just what a struggle this is for you – I think we all try.

    • a lot of it is pure logistics. 2.5 hours of driving a day is too much, on top of a very long workday. we all want a household with a dad around, and available, a whole lot more than that.

  2. Well 2.5 hours is ridiculous. I am sorry that other things do not help make up for it. Still we are here in whatever way we can be for you.

  3. My original comment sounded way more snarky than I meant for it to sound. I am sorry April.

    • oh, no worries. I didn’t think you were snarky. I have the same exact thought all the time: just this pervasive wish that we could stay in our sweet little house and everything else would fall into place. but instead of falling into place we’re falling behind and farther away from our family values. sigh.

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