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.
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.
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 the 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. I remember crying as I handed my parking money over to the attendant in the garage. I remember feeling rage that anyone leaving the hospital in tears had to pay for their parking. It was an intense time in our lives.
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.
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.
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.
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.