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.

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2018 Manifesto

1. I will CALM DOWN about October. The arrival of fall fleece weather causes such a frenzy of excitement that I over-schedule every corner of October to take maximum advantage of no longer sweating the instant I open my front door. October then becomes this giant blur. It begins with a couple of mums on the front porch, a giant scarf around my neck and the first hot beverage of the season but it always seems to end in a frantic fit of exhaustion and shame when my kids find me shoving one more snack size Kit Kat in my mouth before I set fire to all of their Halloween candy whilst yelling, “WE FORGOT TO GO TO AN APPLE ORCHARD!” October is crafty in that it promotes itself as this super chill month full of deep breaths and crisp fall air but in actuality, you never stop moving the entire time before tumbling into November and then Thanksgiving which bleeds into the December holidays and then you wake up sometime in January five pounds heavier with wrapping paper stuck to your pajamas. It all begins innocuous enough. I’m on to you, October and I will not fall prey this year.

2. I will step away from the news at regular intervals so as not to fall into a pit of depression and despair, believing that the destruction of mankind is imminent and all hope has been lost.

3. I will invest in me.

*insert tremendous eyeroll here*

But, lo, I am firmly in my forties now and no longer as physically resilient as I once was. Basically, stuff on my person hurts. So, this year, I’m striving to fix what’s broken. That means, I’m going to wear the stupid brace at night to help alleviate the carpal tunnel syndrome I developed while growing three children with my body. I’m also going to do the stretching I’m supposed to do to help alleviate the plantar fasciitis I developed from excessive hiking to get some alone time away from the three children I grew with my body. I’m going to make the appointments and take the supplements and drink the water and get that weird bump behind my ear looked at so I can be as healthy as I can be for me and for the three children that wrecked everything when I grew them with my body.

4. I will finally figure out how to make the theme song from “Parks and Recreation” be my phone’s ringtone because it is delightful. I should probably ask Henry how to do this, better preparing him for the years and years he’ll spend down the road exasperatingly troubleshooting technology for his parents.

5. I will make a HUGE punch list of the home improvement items around this house that need to get accomplished so we can actually accomplish them. Bob and I talk all the time about our to-do list, casually mentioning over breakfast that the laundry room needs painting or the basement curtains are still waiting to be hung or the crack in the hallway needs patching. Frankly, someone needs to write all of this stuff down because we are easily distracted and inevitably one of us gets busy with something else or decides to take a nap or retreats with a book or goes shopping instead, forgetting all about the laundry room, the basement and the hallway. Then, the next weekend, we LITERALLY have the very same discussion about the things that need to get done around the house. It’s all very counter-productive. Bob asked for some sort of a master list some months ago so we can go room by room as time permits to complete the work and I love a good checklist so I’m going to make this happen. I’ll probably laminate it, to be honest.

6. I will show my kids new places and new things. As much as I love to lament parenthood, I think my kids are pretty much the coolest people on the planet. They’re so interesting and they love to learn and are so curious and they’re getting easier and more fun to take out in public. Bob set a goal of traveling into the city frequently this year to show them a new museum or exhibit and I’ve set a goal of two vacations with them to places that none of us have traveled before. This year, I really want to focus on more experiences and less stuff.

(I’m also in that post-Christmas deep regret stage as I try to organize and find space for the hoard of presents I brought into our home so, we’ll see how this one pans out is all.)

7. I will be generous with my time, resources and talent. I’ve been thinking a lot lately about how to better the lives of those around me. Not just for my husband and my children, but looking beyond that. I’d like to figure out how to extend generosity – in whatever form that takes – farther out in the circle. I have a certain set of talents and expertise and I have friends that are extremely talented and super smart in other things and sometimes, I feel like if we could just pool our gifts, combine our resources, we could make lives better. Easier. Lovelier. Kinder. For ourselves and for others. I’m going to figure out how to build that community of generosity this year. I feel like the world could use a lot more of it.

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Roadblocks

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There’s a boy in Millie’s kindergarten class that pinches her bottom. The pinching began in August, shortly after the school year started. They’re six. Not nearly old enough for the action to be considered perverse. Still, Millie was bothered by it enough to mention it to me. I promptly contacted her teacher and they took all appropriate and necessary action. They were responsive and apologetic. I met the boy at a classroom party not too long after and as I helped him make a puppet from a paper lunch bag, he leaned over and embraced me at least ten times. He is a hugger. A toucher. A pincher.

While Millie was home sick last week, she brought up this boy again. He was back at it. Pinching her bottom. She still didn’t want him to. “But don’t worry, mom. As long as I remember not to sit next to him, he can’t pinch me.”

Her words stopped me short. I paused from my work and looked with a weary resignation at my daughter.

How we learn. Learn at such an early age to navigate the unwanted attention and behavior of others. We make accommodations. We change seats or classes or sides of the street or busses or phone numbers or ourselves. Sometimes, we change ourselves. We gently and strategically and sophisticatedly and expertly maneuver around a problem. Like a boulder blocking our path, we learn how to carefully make our way around the problem instead of jackhammering right through it.

We had the entire family at a big social function recently. We had a fantastic time and made some lovely new friends. At the end of the evening, as we made our way to leave, one of them stooped down and asked Millie for a hug goodbye after shaking hands with Henry and Charlie. He was kind and jovial and he meant absolutely no harm but I wasn’t surprised when Millie quietly and respectfully declined his offer.

While I fumbled with my coat, I heard him reply, “Well, I’ll just have to take it then,” as he swooped down and embraced my daughter in a bear hug she had not wanted to receive.

My God, those words. Why did he say those words?

We learn early on to pleasantly decline. To demurely defer. To softly and deftly say no thank you. To carefully choose our words and actions and emotions when our path is blocked. We accept and tolerate and withstand when instead we should be screaming and kicking and fighting.

And, sometimes, we learn early on that saying no doesn’t even matter.

Every woman has a story. Every single one can tell you tales of unwanted attention or harassment or mistreatment or inexcusable advances or unconscionable behavior. I am so amazed at the women brave enough to finally tell their stories. I’m not at all surprised there are so many.

I had wished a future for my daughter that was different. That didn’t include any of these stories. I am dismayed that, in fact, she already has some.