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Nora Left Eye Lopes, Part 3

(Continuation of Nora Left Eye Lopes and Nora Left Eye Lopes, Part 2)

So last I left you, Nora was doing great but sporting a somewhat funky-looking cyst on the corner of her left eyebrow, at one of the sling surgery incision sites (there are four such sites, two on each eyebrow. The other three sites are completely fine and healed, barely visible). Here’s a diagram of the situation on her left eye, for visual learners:

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As mentioned previously, the cyst does not seem to bother her at all (except when we have to clean/medicate it), but the problem with leaving it be is that it is constantly opening and reforming, and every time that happens, it runs the risk of becoming infected. That would be crappy for many reasons. I don’t think I need to explain them.

Plus no one needs a cyst permanently sitting on their face. Life is hard enough.

In a last-ditch effort to get rid of the cyst (we’d already tried various topical steroids and antibiotics, to no avail), the surgeon prescribed an oral antibiotic. He hoped that this would do the trick– if not, it would mean that it’s the silicone sling itself causing the chronic irritation, and so it (the sling) would have to be removed.

So Nora took the oral antibiotic and the cyst went away and we all lived happily ever after because LIFE IS RAINBOWS AND BUTTERFLIES AND UNICORNS THE END!!!!!

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Bwahahahahahahahahh jk guys. But you knew that.

You’re on MY blog, not [insert name of someone I’d hate]’s blog.

Life never gets tied up in a neat little bow, so here we are at the next boulder in the road. Get out your chisel. (Is that what one uses to break through a boulder? Listen I’m not outdoorsy nor have I ever used a tool).

The cyst remains. And while we’ve grown so used to it that we’ve considered giving it a name, starting a college fund and raising it as our own, the doctor feels it needs to go. And the only way to do that is to remove the sling (you know, the one holding her eyelid up).

So we have another surgery scheduled for Monday. Yes, this Monday. July 22nd. Because some people go to The Hamptons in the summer, but honestly we prefer the bright florescent lights of Children’s Hospital of Pennsylvania, Day Surgery Division.

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Same doctor. Same hospital. Same general anesthesia. Same crippling anxiety thought spirals of hell positive attitude leading up to it.

The doctor seems hopeful that because there are two slings in the eyelid (refer to professional diagram above), the inner sling will be sufficient in keeping the lid up. If the lid DOES droop, to the point where it could affect vision, he will be able to discern that mid-surgery, and we will then have the option of putting in a replacement sling in a slightly different location (all this can be done in that same surgery). The downside to this is that Nora will then have three incision sites in that one brow. And, of course, the chance of another cyst-like reaction at the new incision site.

The good news, again, is that the surgeon seems confident that the one remaining sling will suffice (especially since this was the better, less droopy eye to begin with), and that removing the troublesome sling is not going to affect the cosmetics, or her vision, at all (then why did he put it there in the first place? Standard procedure? Slightly better chance of symmetry with the other eye? IDK guys I guess I missed the day they taught that in the medical school that I didn’t go to).  Furthermore, he feels that if he DID have to put in a replacement sling, the likelihood of a cyst forming again is small, especially since the other three incisions healed so nicely.

His confidence seems promising, and the odds do seem to be in our favor– however, this is only the THIRD time in his TWENTY YEAR career that he has had to remove a sling, so I’d say my faith in odds right now is akin to my faith in Eric’s hair-regrowth shampoo.

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Thankfully, Eric remains positive and hopeful (regarding both the surgery and his hair), so I don’t have to. This is a marriage strategy and not an accident. It’s written in our ketubah: “In sickness, and in health, Emily will constantly assume the worst and Eric will keep the entire ship afloat by himself, so help him God. He’ll also get Emily iced coffee and egg salad and never comment on how much she’s sweating.” It’s all there in Hebrew.

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So that’s where we are. One of the four silicone slings will be removed on Monday. The surgery is slated to take 120 minutes, from prep to finish. I will eat my feelings next to the hospital’s frozen yogurt machine, which likely still has my chicken-nugget-greased fingerprints on it from February. Eric will wander around introducing himself to various dogs.

Nora, I assume, will handle it better than both of us, because she’s still zero years old and life is just a series of eating, pooping, and maniacally swaying to Queen:

 

And I’m sure all this hardship will make Nora stronger, and it will all work out in the end, just like it did for Freddie Mercury.

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No, I’m kidding. Obviously. I DO believe this will all be fine, I’m just sorry my sweet little tater tot has to go through this. AGAIN. I’m not necessarily confident that this is the last time we will deal with this issue, but I AM confident we’ll be able to look back one day and this will all seem like a distant memory and a minor roadblock. I know that day will come, because, no matter how hard life has been at any point, and no matter how hopeless things have seemed at any  given moment, a good dose of distance and perspective has always made the value of the struggle seem crystal clear.

But right now it’s surgery-anticipation mode, so I’m sorry, I’m just not there yet. But I will be.

And until then, I’ll cope in same way any other loving, caring, fiercely devoted mother would.

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Nora Left Eye Lopes, Part 2

(A continuation/update of Nora Left Eye Lopes )

Yesterday I received an email from a reader asking me about the progress of Nora’s ptosis, and it dawned on me that I never actually posted an update on the blog. I’ve kept friends informed through Facebook, but hearing from this woman (who also has a baby with congenital ptosis) made me realize that I owe an update to blog readers as well. I am always hopeful that my experiences can help and provide information/insight for others, so here’s the spiel (I tried my damndest to keep it short but, choice of husband aside, I’m pretty bad at keeping things short. Ba-dum ching! url):

Soon after my last (and also first) blog post about Nora’s ptosis, we had our next ophthalmologist appointment. The diagnosis up until that point was “mild” ptosis in her right eye that was (so far) not impacting her vision or development. We were told to patch her left eye in order to force her to use the right one, with the purpose of maintaining vision in that eye and preventing Amblyopia, aka “lazy eye.” This patching phase is when she earned her “Nora Left Eye Lopes” nickname. Because, I mean, just look at this photo and tell me she is not one badass bitch:

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You can’t, right? I know.

So yeah. We left that first appointment thinking this was a relatively minor issue that we’d just have to watch, and if down the line we wanted to consider surgery for cosmetic purposes, that would be an option. Thankfully, the ptosis was not severe, and surgery was not something we needed to even have on our radar yet.

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So imagine my surprise when I took Nora to the next appointment (Eric was traveling for work) and was told that, in fact, BOTH eyes had ptosis (I kind of already suspected this, but also kind of talked myself out of it and chalked it up to my BFF, Paranoia, rearing her ugly persistent head). The doctor classified the right eye as “severe” and the left as “moderate.” No “mildness” about it. While Nora’s vision was thus far intact, the extreme head-tilting she had to do in order to see would likely start to affect her physical development.

Surgery was recommended.

The good thing is that even though this was not at all what I expected to hear, I remained totally calm. I listened to the doctor’s words and stayed completely composed, because instinct kicked in and I knew I had to be strong for my baby girl.

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I cried like a little bitch.

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The recommended surgery was Bilateral Frontalis Sling, where an internal silicon sling is inserted to connect the lid muscles to the eyebrow muscle, so the brow muscle can lift the lids for her. Using silicon as the material for the sling is usually only a temporary solution– as a baby’s face grows, the silicon does not grow with it, and therefore the lids typically start to droop again after a period of time. An alternative material to silicon is a thigh tendon  (aka “fascia lata”), taken from the child’s leg through a very small incision. This is typically a more permanent solution, as the tendon will grow with the child’s face. It also has the added benefit of not being a foreign object in the body, and therefore infection or rejection is unlikely. Unfortunately, the tendon can not be used until about 3-4 years of age, because it is not developed enough before then.  So our only option at this point was silicon.

Luckily, through the amazingness of social media (Facebook gets a bad rap but I’ve already nominated Mark Zuckerberg for a Nobel Prize), we were able to locate and be connected with one of the top doctors in the country for this kind of surgery: Dr. William Katowitz at Children’s Hospital of Philadelphia (CHOP). During our consultation with him, he agreed that Nora’s case was severe, and surgery was scheduled for February 21, just a few days shy of her 6-month birthday.

The nice thing about waiting for a surgery date to arrive is NOTHING.

THERE IS NO NICE THING.

I thought I was handling the anxiety of the approaching date well, but in hindsight I was just channeling my anxiety into other aspects of my life. It was anxiety just the same. I didn’t eat well, sleep well, or think well for months. Wine through a straw helped. Until it inevitably didn’t.

Finally, the date arrived. We drove to Philly the night before, stayed at a hotel, and arrived at CHOP around 8am the next day. Here’s a visual summary of surgery day:

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Nora was a brave (re: oblivious) little saggy-cheeked champ, Eric befriended every dog he came across, I ate my feelings/smiled so I didn’t cry, and then I sang to Nora post-surgery and mentally transported myself to a place where I wasn’t staring at my bloodied, swollen, groggy, whimpering child.

Seeing her after surgery was terrible. It was a long car ride back to NYC. I sat in the back with her, but covered her car seat with a light blanket as she slept, because I couldn’t bear to see the evidence of what we had elected to do to her. Yes, it was medically advised and yes, it would probably be better for her in the long run, but in that moment all I could think was “I caused her this pain.”

Well, no worries, because as it turns out, my daughter is a fucking warrior.

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We got home and she slept through most of the night, waking only once for a bottle because, due to the anesthesia, she hadn’t eaten in about 24 hours. After a 3am feed she went right back to bed and, I shit you not, woke up like this:

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Happy as a goddamn clam.

For real, WHO MADE THIS CHILD?! It seems that somehow, despite the fact that I carried and birthed her, she inherited zero of my DNA. Because if it were me, I’d be handling the situation with exactly this much grace:

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As you can somewhat see in the photos of Nora above, the surgeon tied the sling at four separate incision sites, two on each brow. He then put in a temporary stitch on the bottom of each eye, for the purpose of keeping her eyes cinched tight post-op, in order to prevent her from scratching a cornea.

Two days after surgery, we returned to CHOP and he removed the temporary stitch. The results took my breath away (it was at this point I realized I hadn’t, in fact, breathed in 2 months):

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Nora instantly stopped tilting her head back, and we were able to see, for the first time, just how beautifully blue her eyes are. I praised Jesus. Yeah, I’m jewish, but still. This felt like a moment for Jesus to be involved. Allah, Buddha, whoever Wiccans worship– everyone was welcome at this prayer party.

Since then, Nora’s eyes have “settled” a bit, which is to be expected with this surgery:

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As far as I’m concerned, her eyes now look typically-developing.  Yes, sometimes her right eye still looks “droopier,” especially when she’s tired. And yes, there’s still a little bit of a “sleepiness” to them, but it’s so minor I’m pretty sure I’m the only one perceiving it. She sometimes sleeps with her eyes a bit open, which we were warned was a possible side effect, but it has not had any consequences other than to kinda creep us out.

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So all in all, a huge success with virtually no complications!!!!!!

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Not how my life works.

About 3 months after surgery, Nora woke up with a swollen eye, and one of the suture sites on her brow looked irritated. We went to the opthamologist and they gave us some cream and didn’t seem too concerned. Weeks later, the irritation had only gotten worse. We went back to the surgeon at CHOP.

It turns out that a small cyst has developed, a minor and fairly common healing complication. The cyst varies in its appearance, and every so often it pops, draining some pus and blood (I know, gross– but this is actually a good thing). Some days, it looks like nothing more than a small little scab on her brow. Other days, it takes on a life of its own.

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Fortunately, much like the dude above, Nora is blissfully unaware of its presence and, in terms of cosmetics, gives a total of zero fucks. Ah, to be no years old.

It isn’t causing her any harm or discomfort, aside from when we have to put hot compresses on it, squeeze it a bit, and apply the cream. That, she does not care for (#grossunderstatement).

The doctors seem hopeful that the cyst will eventually resolve itself and fully drain on its own. I’m not so sure. It continues to fill, pop, scab, and then the process begins all over again. If it doesn’t improve soon, we will have to consider surgery as an option.

I know– another surgery?! Whhhhhhyyyyyyyyy? Especially for such a minor thing that only seems to be a cosmetic issue at this point?

Well the problem is, the more the cyst opens, the more likely it is to get infected– and if it DOES get infected, and THEN the surgeon goes in to remove it, there is a much higher chance that he might have to remove the sling, too. And if that were the case, we’d have to wait for the cyst surgery to heal, and then do ANOTHER sling surgery. Granted, this is a worst-case scenario, but the fact that it’s even in the realm of scenarios makes me want to ugly cry, Kardashian style.

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So nothing’s perfect. Which falls under the category of “duh.”

But overall, we are so grateful for the surgery and the results, despite the non-perfection. Nora can see. People no longer look at her and wonder if something is “wrong” with her (you might think that’s me being cray, but I actually had a former student’s parent, pre-surgery, ask me exactly that– “Is she ok? Is something wrong with her?” It was the first time in my life that I considered murder as a viable conflict resolution tactic.)

Nora is now completely thriving in all areas of development, and she’s just the happiest little rope-a-dope. I mean look how thrilled she is about a banana that I bought on the street for 15 cents:

And yes she’s eating that banana naked because do you really expect me to feed AND clothe her? What am I, a wizard?

So that’s where we are in our ptosis journey. We have the possibility of cyst-removal surgery, as well as the eventual possibility of fascia lata sling surgery to replace the silicon sling a few years down the line. All that being said, Nora is happy, healthy, and thriving– we are thrilled with our decision to surgically treat her eyes, and have never looked back (no pun intended).

A huge thank you to ALL those who have supported us along the way (and there have been so SO many of you). The brightest, most silverest (back off, spellcheck) lining of this whole experience has been a renewed faith in the human spirit. Anyone who thought they might be able to help, did. We were connected with the best doctors, given the most helpful advice, sent the sweetest gifts, notes and kind words. There is simply no way to accurately express my gratitude, so in lieu of the perfect words, please accept this photo of Nora making the world’s most absurd face:

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The end.

(are YOU exhausted? I am)

 

 

Family Planning

Therapist: “So, you and Eric are talking about starting a family soon?”

Me: “Well, I mean, yeah. Not right this moment, but soon. We’re married and we both want kids and I’m not getting any younger, so…”

Therapist: “Yes, you’ve said that. But what about right now makes you feel more ready than when we’ve talked about it in the past?”

Me (thinking): “Well….we came up with a hilarious way to announce it on Facebook.”

Therapist:  img_2021-5

Me: “Oh, is that not a sign of readiness?”

Therapist: img_7086-2

Whatever, lady. Like anyone’s ready for this shit.

I Am Miserable In This Photo

I want to apologize.

Last weekend I went to a Phish show and posted this photo on Facebook, for all of you to see:

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In it, I am fucking miserable.

Surprised? I’ll bet. Nothing says “My life is so happy and fun, guys!” like an open-mouthed, wahoo yell-smile, indoor sunglasses, bright lights, and background spirit fingers.

(For the record, Eric is exactly as happy as he looks. If he had a tail, it’d be wagging. Which is why he is the absolute necessary img_7492 to my img_1179-5.)

The second after that photo was snapped, my face fell back into its previous anxious contortion. That entire afternoon and night, I just couldn’t calm down. I didn’t feel present. Everyone around me was excited, and I couldn’t get on board, not matter how hard I tried. I felt disassociated, stuck in my bell jar, uncomfortable in my body. I was trying to move to the music but just….couldn’t. Everything about me felt awkward, disconnected, and out of place. And so, the self-defeating but all-too-predicatable marathon of thoughts began swirling through my brain, a loop so familiar that I carry a VIP pass to this particular ferris wheel ride of misery: “Why can’t you just relax, Emily? Why can’t you just have fun like everyone else here? Why do you have to be such a goddamn downer? JUST ENJOY YOURSELF FOR CHRIST’S SAKE, THIS IS SUPPOSED TO BE FUN! STOP BEING THE ABSOLUTE FUCKING WORST!”

(It’s weird how this strategy never works.)

Those sunglasses? Not a cute, bright-lights-at-Phish gimmick.

They were necessary to hide my tears.

Now brief side clarification– my misery that night had NOTHING to do with Phish. Phish critics might think, “Of course you were miserable at Phish, it’s a crowded shitshow.” And yeah, it sure is! But truth be told, I actually like Phish. A lot. Ok, not nearly as much as the die-hard, 100-shows-and-counting phanatics I’m usually with, but I do have an appreciation for the music, the people, and the scene. In fact, I had been to a Phish show 8 days before this one and had a genuine blast. My mood was stable that day, and the music and crowd were in sync with my dopamine levels. I got lucky. I should have posted a photo from THAT show. At least it would have been authentic.

So why did I choose to post a “joyful” photo when I felt shattered inside? I’m sure there are a million different answers to that, all of which I will analyze to death with my therapist next week, so she better buy at least 3 hats, 2 helmets, and hold the fuck on. But I’m in touch with myself enough to know that the main reason is this:

That photo represented how I wanted to feel.  And maybe if that was the image I projected to the world, it would, in some way, become the reality.

 

But shame on me. I know better.

I know that when I’m down, a filtered, look-at-me-having-fun photo feels good for one moment and one moment only. Then I’m just part of the problem, a problem that I’ve always been so conscious and critical of.

It’s no secret that social media can be harmful to self-esteem. I’m not making any groundbreaking statements in that regard. The constant comparison to other people’s happiness and success, which is generally the majority of what gets posted, makes us feel badly about our own less-than-perfect lives. We’ve all experienced this. It’s insane how we can scroll through a news feed and, even when we KNOW, intellectually, that what we see is not capturing the true, more nuanced reality of our peers’ lives, we still, on some level, process it as such. Our visual perception, paired with our own insecurities, trumps our rational mind every time.

That is why I am so disappointed in myself for posting a photo that projects fun and joy, when inside I was torn to pieces.

This helps no one.

Especially not myself.

I know better than to communicate an inauthentic truth. I know what it does to my mental health when I try to put forth a version of me that isn’t real, and the possible damage it can do to others who struggle. It’s the main reason I have this no-clear-theme-and-sort-of-all-over-the-place mess of a blog– a mix of stories that highlight my imperfections, struggles, and staggered journey. Yes, some of my expereinces are joyful, and I’m always thrilled when I get to share that. And I will continue to share that, as we all should– when it’s genuine.

But a lot of the journey is hard. And awkward. And sad. Anxiety-and-guilt-ridden, scary, uncomfortable, confusing and head-in-hands frustrating. So I try my best to capture that, too. Not push it down and cover it up with a camera-ready smile. Because if I’m doing that, if I’m masking the struggles, I’m just another “Look how great my life is ALL THE TIME!” social media monster. We have enough Kardashians out there eating us alive, ass-first.

The thing is, my life really IS great, guys.

It’s also a category F5 shitnado.

I promise an online presence that continues to project both these realities.

Forgive me?

 

 

 

Adventures in Marriage Licenses

So Eric got a new job recently, and HR informed him that in order for me to be on his health insurance plan, we would have to get actual documentation stating that we are domestic partners. This came as a surprise, because at Eric’s last job they were like, “Oh, your girlfriend wants health insurance? Cool! Health insurance for dayzzzzzzz!” We literally didn’t even have to show proof that we were living together. I’m not even sure we had to prove we were human beings. I could have been Eric’s pet hamster Chubbles*, and they would’ve covered me. For whatever reason, they just took our word on the honor system, which is the way it should be. (hahah no, I’m kidding. That is DEFINITELY not the way it should be. If it was that way, I would have put myself on the health insurance of every person I’ve lived with since college, including that summer subletter who drew a huge penis on my window).

So we went down to the City Clerk on Wednesday and diligently signed our Domestic Partnership license. It was a beautiful day. The clerk could not have been less interested in us, and was scrolling on Facebook the entire time she processed our paperwork. Which immediately made me like her. I was super hopeful that when the license printed, it would accidentally have one of those creepy FB stickers on it.

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But alas, no. Disappointment abound.

Meanwhile, Eric and I tried to make small talk with her, as an attempt to engage her in this somewhat meaningful moment in our lives.

Us: “We’ll be back here in 5 months for our wedding license!”
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Us: “Thanks yeah we’re excited too!”

This lady was the physical and spiritual embodiment of “Ain’t nobody got time for that.” We gave up, took our license, posed for obligatory photo and left.

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Clap, clap, done! Easy as pie! Right?

Wrong. That’s not how my life works. You should know this by now.

Eric skipped back to his office, Domestic Partnership license in hand, only to find out that HR had given him false information– “Oooooh, our bad. Turns out domestic partnership only gets your partner covered if you’re gay.” And apparently, shouting back, “Ok, ok– we’re gay! We’ll be gay!” doesn’t solve the problem.

What DOES solve the problem? Getting married.

Eric: “But we’re basically married!”
HR: “When is the wedding?”
Eric: “June!”
HR: “Cool. She’ll have health coverage in June.”
Eric: “HAVE YOU MET HER?! SHE NEEDS IT NOW.”

Ok obviously the conversation didn’t exactly go down like that, but the point is that the rules insist we show legal intent to wed (aka, get a marriage license)– and I, as someone prone to mental/physical/invented health issues, cannot wait until June for coverage.

Can I get temporary insurance until then? Yes, of course. For a CRAPLOAD of money. And what is the point, if we are getting married soon anyway? Why not just get the license a little earlier? We already live together and love each other and occasionally want to kill each other and that’s all marriage really is, right? (If not, don’t tell me. I’m a learn-the-hard-way kind of girl, which is why my life tends to be a complete disaster but also interesting).

So, with the most romantic of reasons driving us forward, we went back to the City Clerk this morning to obtain a marriage license. (No, this does not mean we are married. This means we have a document to prove INTENT to marry. Everyone calm down, Mom.)

Not many people get to experience the City Clerk office twice in 3 days, but I guess most people just aren’t as lucky as we are.

Gun emoji.

So there we are this morning, sitting in our seats, waiting for our number to be called, and, like all couples about to take that first legal step in joining their lives forever, we were on our iPhones playing Words With Friends.

With EACH OTHER. We’re not heartless sadists.

As I sat there waiting for Eric to play the next word, I took a moment to look around and do some people watching. There were several couples there who were getting not just a license, but having their official ceremony as well, so they were wearing nice white dresses and suits. Naturally, I then questioned my own appearance, which led to an existential downspiral (aka, a typical Friday morning). “Is it ridiculous that it didn’t even occur to me to look nice for this event? I just threw on jeans, a sweater, Uggs and headed out the door. Does that say something about my maturity level and my preparedness for marriage?”

“Oh, Emily, stop it,” I counterpointed in my head, because having full conversations with myself is normal. “That’s just your anxiety going into overdrive. Yes, you’re dressed casually, but so are most people here. You’re a perfectly mature, responsible adult who is more than ready to enter this very significant stage of life.”

And that’s when I spotted the gigantic glob of Junior Mints melted into my pant leg.

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Yes. It’s as big as it looks.

Some background context here, because I’m sure you’re having difficulty understanding how it’s humanly possible that I did this to myself without noticing:

Last night, Eric and I went to see Dear Evan Hansen on Broadway (fucking phenomenal, by the way). And like all people watching a show with themes of loneliness, pain and depression, I like my trauma with a side of  Junior Mints.

Kramer gets it.

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At one point during the show, I accidentally dropped one of the Junior Mints (again, Kramer-style) while attempting to put it in my mouth. I thought it fell on the floor and so I quickly forgot about it– but, apparently, it got squished between the seat and my leg for the rest of the night, where it slowly melted (because, as you can always assume, I was very sweaty) and spread across my pants. And yeah, I did wear the same pants two days in a row without washing them. You do it too, so SHUT UP.

“But how did you not notice it when you were getting dressed this morning, Emily?”

Because it was early, I hadn’t had coffee, and in general I am not a noticer of things.

“But how about when you took them off last night?”

I AM VERY BAD AT LIFE, OKAY?!

Which brings us back to this moment in the City Clerk’s office, when Eric and I are about to be called forward to sign a marriage license, and I have what appears to be a giant ball of (minty fresh!) shit spread across my pants.

Eric suggested I go to the bathroom and try to clean myself up.

I suggested we take a photo.

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Needless to say, the papers still got signed (not by an officiant– just by us, Mom!) and Eric is still willing to marry me.

Now let’s see if I can make it down the aisle without a giant shit stain on my wedding dress.

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* Chubbles = actual former pet of Eric’s