A Little Light

A few weeks ago, I picked up Charlie and Millie from summer camp and surprised them with lunch in town at our favorite burger place. Charlie loves a good cheeseburger and Millie could beat grown men in a french fry eating competition and also this made for one fewer meal I had to prepare at home so we were all pretty jazzed to be there.

This restaurant happens to be super small so when we entered, we headed straight to the counter to put in our order before finding a table. We found ourselves behind a young man placing a large takeout order. He was hot and sweaty and dirty and had obviously been working outside and appeared to be taking food to the rest of his crew.

After paying for our burgers and fries, I thought it best for the kids to wash up because who knows what they do at summer camp but it probably should come off of their hands before lunch so we headed to the bathroom. Upon returning to the little dining room, we were greeted by what could only be described as a mustard explosion. We stopped in our tracks and kind of did that cartoonish double-blink with our eyes. On one side of the restaurant, mustard was everywhere. On a couple of the tables, on the walls, the chairs, the floor. Bright, yellow mustard painted all over the place. And, all over the shirt and jeans and hands of the young man with the takeout order who we were behind in line when we arrived and who was obviously the point of origin for the mustard detonation.

In the short time we were in the bathroom, this customer’s order had come up and he had obviously attempted to add some ketchup and mustard to the burgers in the bag before heading out the door. At this restaurant, both of those condiments are in big red and yellow plastic squeeze bottles. I don’t know if the lid to the mustard wasn’t on tight or maybe, since the restaurant had just opened for the day, the temperature change from the cold refrigerator storage and the super warm dining room caused some sort of volatile buildup in the bottle which led to the explosion? I’m not sure but my CSI splatter analysis suggests the latter. It must have been absolutely spectacular.

What was even more spectacular is that no one was helping the young man clean it all up. He had grabbed a couple of napkins and was futilely trying to wipe the mustard from his pants but he mostly just looked overwhelmed and embarrassed. Two of the six tables in the restaurant were occupied – one with parents and their teenage children and another larger family with a few adults and lots of young kids. It was, without a doubt, impossible to not notice what had happened which made it so surprising to me that no one was moving a muscle to assist. Everyone had witnessed it and then just… continued on. Like nothing had happened.

I assigned Charlie and Millie to an open table that wasn’t dusted in mustard and went to help, interrupting the lady at the counter to ask for some paper towels and then returning to start wiping up the tables and the chairs and the floor while the young man looked at me and tried to explain that he had no idea what had just happened. I reassured him it was all okay and after several minutes, we had made some good progress. An employee eventually emerged to help. We all worked together a little bit longer and had most of it wiped up in short order. When we went to throw the mustard-covered paper towels in the garbage, the young man looked at me, smiled, and said, “I’m going to smell like mustard all day now.” I laughed and offered to hold the door open for him as he left with his tray of drinks and paper bag filled with burgers and fries and most likely, too much mustard.

Then, our order came up and the kids and I devoured our food, talked about how crazy that mustard thing was, and left in search of ice cream.

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So much going on in this world right now makes me feel completely and utterly helpless. Not hopeless. I haven’t lost hope. But, it feels like there isn’t enough helping going on anymore. I think that’s what brings me the greatest despair. The lack of genuine compassion for one another. Sometimes, it feels like no one has the space or the patience to just be kind.

I can donate my time and I can donate my money and I can speak passionately and I can listen empathetically and I can educate myself and I can advocate for others and I can rearrange our entire November vacation to be home in time to vote at our local precinct in the mid-term elections because I’m a little leery of absentee voting and it just seems better to be there on that day to vote in person, right?

I can do all of those things. And, I can show my children how to be helpers. How to put yourself in someone else’s shoes. How to imagine a situation – a life – that is different than their own. How to see a need and then fill it. How to clean up mustard with sub-par, non-absorbent, eco-friendly paper towels.

In the tiniest, seemingly inconsequential of ways and in the biggest, most significant of ways, helping others, compassion for others, kindness for others, matters.

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Snippets

We skipped straight from winter to summer this year. We were robbed of spring. It’s been hot and the air is filled with humidity and there has been a lot of rain and everything is damp.

My naturally wavy hair is reflecting the atmospheric conditions and this morning, while preparing school lunches for the kids, Charlie looked at me, tilted his head studiously and said, “Your hair is sticking up everywhere. You look like Albert Einstein.”

“If Albert Einstein were accidentally electrocuted.”

Cherish. Cherish every moment.

I was in the emergency room with Henry one evening last week. Our visit stretched into the wee hours of the morning while the staff diligently worked to determine why he was in so much pain.

At one point, in order to more comfortably perform a diagnostic test, they administered pain medication to him through an intravenous drip. Henry’s relief was almost instantaneous and he marveled aloud at how quickly the drug had worked.

“I can’t believe how much better I feel already,” Henry declared.

Having been given the same drug in the same emergency room last summer for an interminable migraine and having found the same tremendous fast-acting relief from pain, I looked at Henry and said a little too excitedly, “I KNOW, RIGHT? AREN’T DRUGS AMAZING?”

It wasn’t until the nurse looked at me a little wide-eyed that I realized I may have sounded a bit overly enthusiastic for pharmaceuticals. It was so very late and I was so very tired. I tried to course correct by launching into a brief summary for Henry of the nation’s current opioid crisis and the challenges we face in fighting the devastating effects of powerful drugs. Then, I inexplicably gave the nurse a knowing wink but somehow this just made everything tragically worse and significantly more uncomfortable.

I’m pretty sure the nurse thought the D.A.R.E. t-shirt Henry was wearing by sheer coincidence was merely a prop.

I find thunderstorms mostly delightful so on Monday afternoon, when the skies turned dark, I told the kids to put down the small screens and join me in my bedroom for a good old-fashioned storm-watchin’. When the rain began and hindered our view out the windows, Henry asked if we could go sit in the garage, with the door open, to watch the storm. I hesitated momentarily because I had definitely heard some thunder but agreed it would be fun so we relocated to a decidedly more hazardous location.

Since we’re responsible parents, we made the kids sit towards the back of the garage. You know, for safety.

Within minutes, everything went from FUN to DOOM. I remember hearing Bob slam the garage door shut and I remember thinking the big bay windows were definitely, most likely, positively going to break from the hail and I remember being in disbelief at how loud it all was and I remember hustling everyone to the basement.

Charlie, no one’s fool, was already down there. With a blanket, a book, several stuffed animals, and a flashlight.

The worst of it was over in a few minutes but our home is a mess. Shredded window screens, damaged roof, punctured siding, mangled trim, dented everything. We’re fine. It will all be fine. But, still. That was SOME storm.

While I was at the drug store late Saturday night, buying all manner of items to soothe the never-ending parade of symptoms and ailments that have descended upon our home of late, I picked up a pint of my favorite ice cream. Showing an unreasonable amount of restraint, I didn’t open it that evening. Charlie took notice of it in the freezer the next afternoon though and asked, rather slyly, what my intentions with that ice cream were. I explained I was saving it.

“For another time,” I replied.

“Oh, come on, mom,” Charlie pleaded. “It’s Mother’s Day. Doesn’t that mean you have to share?”

I chuckled and said, “Charlie. That’s not how it works.”

But then I thought, yes, that’s pretty much exactly how it works. Every time.

The Other Side

When Henry was little more than a week old, I noticed each of his eyes had a single white spot right in the middle. The spots weren’t exactly symmetrical but there was one in each eye. A pair.

Henry had begun to open his eyes for longer periods of time, focusing on what he could in the world around him. I noticed the white spots while I was feeding him and we were gazing lovingly, exhaustedly into each other’s eyes. Him, undoubtedly wondering who this lady was that wouldn’t stop crying and me, wondering if I would ever sleep again ever in my whole entire life.

I wasn’t concerned because I was way too tired to be anything but tired but I do remember getting up from the chair we were sitting in and peering in the bathroom mirror to see if I, too, had white spots in the center of my eyes. My sleep-deprived mind had thought maybe it was a structural thing in the eye that I had simply forgotten we all had? But, no, I did not have white spots in my eyes.

Henry’s pediatrician at the time was part of a very busy group practice near our home. When I took Henry for his two-week checkup, the scheduling backup at the office meant we were seeing a doctor we had not seen prior. He was a founding physician of the practice and his son worked there as well. He was older and kind and patient and when, almost as an afterthought, I mentioned the white spots in Henry’s eyes and did he think those were supposed to be there, he took a closer look and casually exclaimed, “Oh, I see those, yes. He has cataracts.”

We never saw that doctor in the practice again and I’m not exactly sure why. I remember reading about his passing a short time later and thinking that the randomness of our appointment with him was one of the more fortuitous events in our lives because he referred us to the pediatric ophthalmologist that would eventually save Henry’s vision.

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Ten days after that newborn checkup, Bob and I took a wee baby Henry to Children’s National Medical Center to have his cataracts officially diagnosed. I remember Henry nestled in a bucket car seat we had borrowed from friends. I remember meeting his ophthalmologist for the first time – a man that would feature so prominently in our lives for more than a decade. I remember wishing I had written down more of what the doctor had said. I remember being a little scared and mostly being really, really sad.

And, I remember exactly what Henry was wearing that day – a onesie and matching pants given to us from a neighbor. The little shirt was covered with knights slaying dragons.

For the next three years, we continued with regular, frequent appointments with Henry’s ophthalmologist, tracking the progression of the cataracts and trying our best to determine what, exactly, Henry could see. Wrestling a toddler through an hours-long ophthalmology appointment is just as fun as it sounds. There’s the waiting room wait, followed by blatant coercion to cooperate in the exam room, then the application of stinging eye drops, followed by more waiting, and finally wrapping up with yet another lengthy exam. It was challenging and difficult. Henry once accidentally punched the nurse administering the eye drops. I never seemed to bring enough of the good snacks or the right toys. But, we eventually got into a routine and each appointment was a little easier than the last. Plus, the waiting room played non-stop Disney Junior.

Shortly after Charlie was born, in the summer of 2009, one of these routine appointments turned up the presence of secondary cataracts in both of Henry’s eyes. His congenital cataracts had changed as he had grown and the situation was more pressing and his condition more serious. If Henry’s clouded natural lenses weren’t replaced, his vision would be further compromised. And, compromised vision in a young child means that the critical connection between his eyes and his developing brain would also be compromised.

Surgery was inevitable and, following some intensive testing to rule out genetic disorders commonly associated with congenital cataracts, Henry was scheduled for surgery on the first eye – his left – the following May, when he was four years old.

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My memories of the nine months between Henry’s diagnosis of secondary cataracts and his first eye surgery are cloudy. I’m convinced it’s a trick my mind plays to safeguard my heart from how absolutely overwhelming life was at the time. We had just completed a whole-house renovation, I had shifted from full-time to part-time work, Charlie had surgery to repair a birth defect that included a rather complicated convalescence, and we were in the beginning stages of Bob’s heart health journey. In one particularly unimaginable day, I checked Bob out of the cardiology wing of our hospital after an overnight stay for a heart procedure and we walked – very slowly – to the children’s wing of that same hospital so Charlie could have an emergency ultrasound due to a post-surgery complication. I have no idea what the receptionist in the children’s imaging center must have thought at the sight of us. Charlie, agitated in the stroller, Bob wearily slumped in his chair, hospital bands still affixed around his wrist. Me, staring blankly ahead, willing all of this to just be over, please be over.

But, by May of 2010, we were ready to fix Henry’s eyesight. We had seen some very dark days and, like seasoned warriors, we were ready for the new battle ahead.

However, Henry’s first surgery did not go as planned. Cataract surgery in young children can be difficult since the eye is so malleable at that age. It took his doctor three attempts to get Henry’s new artificial lens to sit in Henry’s eye correctly. It was a long and worrisome surgery followed by a long and difficult recovery.

The three biggest challenges in recovery being to prevent Henry from touching or rubbing the eye, to encourage Henry to open and use the eye, and to administer steroid drops directly into the eye which is akin to wrestling a grizzly bear to the ground but being, you know, gentle about it. I remember having to pin Henry to the carpet, his arms restrained under my knees, my left hand gingerly opening his delicate, damaged eye, my right administering the drops while he screamed and thrashed. We’ve both recovered from this trauma but just barely, if I’m being honest.

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Two months later, we did it all over again with his right eye.

Weeks after that second surgery, a suture from the first surgery popped, a rare complication necessitating an under-anesthesia repair. I discovered the popped suture BECAUSE YOU COULD SEE IT STICKING OUT OF HIS EYEBALL. Let that sink in for a minute.

Three months after that suture repair, another suture in the OTHER eye popped, requiring ANOTHER under-anesthesia repair. Henry’s doctor was amazed. We weren’t. We were just really tired.

At this point, Bob and I were getting pretty good at the dividing and conquering part of parenthood. One of us would remain with Charlie while the other was with Henry. Since the suture repairs were pretty quick, I was taking Henry to these procedures solo. Before I even had time to properly organize my purse, he would be out and in recovery. We had the whole process of out-patient children’s surgery down pat which, frankly, is a skill you never expect to acquire.

Several months later, the development of a membrane in Henry’s eye – kind of like scar tissue – meant another round of invasive surgery. It was impacting his vision and had to be cleared out.

A year and a half later, Henry had the same surgery on the other eye.

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The intervening years since Henry’s last surgery in 2012 have been filled with eye patches and regular checkups and the occasional emergency appointment and lots of new glasses and the inevitable replacement of those glasses when they’re broken by a renegade sibling and also some long lectures on caring for one’s glasses and a bit of wondering when Henry will be old enough to manage contacts.

For the most part though, the past few years have been a lot less stressful for Henry than the few that came before. I hope the painful memories recede for him and the better ones rise to the top.

But, my memories haven’t faded. I remember how difficult things were. I remember how hard it all was. How scared we were. I remember bracing myself at every appointment for bad news. How often there was bad news. But, I also remember how good I got at caring for Henry. How his condition made me more confident as a mother. I asked questions and sought solutions. I advocated for him. I remember how Bob and I worked so well together. I remember family that would drive long distances to help us. Friends that worked at the hospital and would distract us on surgery days. Neighbors that would ply Henry with gifts in an effort to encourage him to open his eyes.

All of these memories melt together in my mind, a mix of worry and exultation, of sadness and relief, of thankfulness and exhaustion. They’re tucked away but they’re still there. Right below the surface.

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We haven’t had an appointment with bad news in more than five years now and so, earlier this month, Henry was officially discharged from the care of his pediatric ophthalmologist. Very nonchalantly, after almost twelve years to the day of treating Henry, his doctor announced that he didn’t need to anymore. It took me by surprise. It makes sense though. Henry won’t need additional surgery until his late teens. It seems a prudent time to find a local ophthalmologist that can see him through from here. But, still, the finality of it all, the finality of our journey took my breath away. I refrained from making things awkward by crying or hugging his doctor but I did thank him profusely for his diligence. Though, Henry and I both hugged the nurse on our way out. He apologized, again, for accidentally punching her that one time.

For so long, I’ve wanted to write about our experience. To record the history of our journey, reflect on the tremendous frustrations, dwell in the depth of our gratitude. I never did. I never could. I realize now that was because I couldn’t think about it, couldn’t focus on it too much when we were in it. When you’re in it, the journey is about something else entirely. The rest of it, the reflection, comes when you’re on the other side.