Immediately, a story pops into my head about a little girl who dug up her guinea pig again at night, because he’d really been dead long enough by then. There you are as a parent, after a well-intentioned burial ritual. I don’t want that grave to turn into a place of pilgrimage. So I tactfully reply that that doesn’t seem like a good solution to me. “Well, Mom, then let’s cremate my eye just like Grandma O.” It’s clear that this little boy needs a farewell—a farewell to his right eye!
Nightmare or Reality
As parents, we want just a few things for our child: good health, a happy disposition, the ability to keep up in school, nice friends, and above all, lots of fun in a carefree life. As a parent, I’m 100% committed to that. You teach your child about life’s norms and values. We explain to them what’s good for them and what isn’t. We listen to them, ask them questions, and give them answers. Well, I could go on and on like that. And of course, your child is allowed to play outside, right?! You teach him not to just cross the street, not to go off with strangers, not to accept food or candy from people, etc. We also teach Ruben that life happens as it comes. People die, but babies are also born. People get sick, but they often get better again. Could we ever have imagined that our son would trip in the schoolyard and get a branch stuck in his eye? No, you don’t think about things like that! Let alone that this incident would ultimately, after a year and a half, result in the amputation of his right eye and that his life would never be the same as it was before… just being a carefree child. But in the end, that’s exactly what happened.
History
It all started around the end of October 2013. Ruben had fallen in the schoolyard and gotten a twig in his eye. After school, his eye was slightly red and watery. It didn’t hurt, Ruben said; it was just “a little irritating.” So we went home, went through our evening routine, and put him to bed. The next morning, the redness had subsided a bit, but it wasn’t quite gone yet. “Is it bothering you?” I asked Ruben. But he was already eager to go to school and said he wasn’t in any pain. Since my gut feeling was still telling me something wasn’t right, I decided to call our family doctor’s assistant on my way to work. She told me that if I was concerned, I should call that afternoon after school, and he could be seen that very same day. That afternoon, Ruben’s eye was red—redder than it had been that morning. He was also gently squinting his right eye shut. Less than an hour later, we were at the doctor’s office. He was given antibiotic ointment for his eye, and his eye was patched for 24 to 48 hours.
To make a long story short, let’s fast-forward a few months. The symptoms kept changing. We were referred to an ophthalmologist in Ede. For reasons that remain unclear, a secondary infection developed in Ruben’s eye over time. Whether this was related to the medication that was ultimately prescribed or to the delayed referral to an academic hospital is still unclear. Was it a fungus, a bacterium…? Perhaps we’ll never know the answer. In any case, a medical advisor is looking into it, because both we and Ruben are left with a number of unanswered questions. Anyway, we can confirm that, after much insistence, Ruben was finally able to be seen at the UMC. I can still hear the doctor there saying… “How did this escalate so much? What happened to that eye?” We tell the story, and I show him which eye drops were used. Well, all sorts of thoughts race through our minds, but there’s little time to dwell on them. There you are, with a pitiful little bundle of misery on your lap. Less than an hour later, he’s at the WKZ. In a single, darkened room with a quarantine airlock, and before bedtime, he’s already hooked up to a morphine IV and on a heart monitor.
In the coming weeks, dozens of eye drops and pills are administered, day and night, every hour(!), without any results. Despair reigns supreme, and when asked if things will ever get better, the responses are evasive. A biopsy is performed under anesthesia, but after flushing the eye, less than 12 hours later we’re no closer to a solution. The eye reacts violently, and the doctors can’t figure out why. Christmas is approaching—for us, no Christmas tree at home, no long shopping list, and no chaos in the stores; for us, no writing Christmas cards or visiting family.
On Boxing Day, Ruben undergoes an emergency corneal transplant. Waiting for the tissue to arrive takes hours; the tension builds, and eventually, around dinnertime, we’re sitting there waiting for Ruben to come out of the operating room. What a nerve-wracking experience—and he’s in so much pain after the surgery. We stay positive: from now on, we can focus on a successful recovery. That’s how it feels, even though it remains nerve-wracking. Ruben’s pain subsides; he starts to feel more like “our boy” again; everything seems to be going well, and we’re finally allowed to go home in January 2014. After spending more than four weeks living in a dark room and at the Ronald McDonald House.
Recovery or Decline
At first, everything seems to be going well, until the redness and pain return. The stitches are irritating him, and one comes loose. Another anesthesia follows; the loose stitches are tightened, and the loose one is removed. Hope! We gather all our positive thoughts once more and press on full steam ahead. But the worry persists. The parents of his friends no longer invite him over to play—imagine if something went wrong or he started feeling pain. Ruben is having trouble adjusting at school because seeing with a problematic eye causes difficulties. No more swimming, trouble riding a bike, low energy, and bouts of pain so severe that they trigger tantrums. We have to hold him in a firm grip to make sure he doesn’t gouge his own eye out. Still, we’re staying hopeful, trying to focus on the good things in life. But when you finally find out that the cornea is showing signs of rejection, it becomes really hard for everyone to stay positive. But we have to—and we will—keep going.
Up until then, every school break had been dominated by surgeries and recovery. We were at the hospital every week. The 2014 summer break was approaching, and the planned trip to France had to be canceled; a bandage contact lens was supposed to be the solution to the pain. There are huge blisters on the rejected cornea, and another transplant is no longer an option. It’s going to be a rainy summer for Ruben, because the bright (sun)light is a nightmare due to his photophobia. The lens falls out, rolls up, a new one goes in… we’re trying to stay positive. Maybe a tinted lens will help with the light problem, but no such luck. It looks like there’s a hole in his eye… Ruben is disappointed. It turns out not to be a good solution. Still, we’re mustering up our courage again! And in the meantime, he’s hiding under his cap, with ski goggles on his nose, facing away from the sun in the living room with the curtains closed. We’re living like moles underground, but fortunately, we’re together as a family.
The pain keeps coming and going, but then comes that one drop… The proverbial drop that breaks the camel’s back. “Either you come up with a solution, or just take my eye out,” Ruben tells one of the doctors. As a parent, the ground gives way beneath your feet. For a year now, he’s been saying just one thing: “I don’t need anything, except to keep my eye.” That’s why he faithfully endures everything—the ointments, the eye drops. Another anesthesia, another hospital checkup; everything he does, he does for that reason. The doctor in question barely reacts. Ruben looks at me and, after a year, finally throws in the towel. This is the first time he’s said he doesn’t want to go to the hospital anymore. He’s had enough.
Exploring
To get back to the story—because, well… unfortunately, it’s not over yet—I decide to look for someone with an artificial eye. Because when your child yells, “Just take my eye out,” he needs to know what he’s talking about. And since the hospital isn’t open to these kinds of conversations, Ruben will just have to experience it for himself. No sooner said than done—after countless phone calls—we get in touch with Petra. She lost her entire eye when she was 1.5 years old; she’s now 32. We make an appointment with her and drive to Hengelo, Overijssel. It’s not exactly around the corner, and it’s not something I’d normally do—just up and going with my family to visit a complete stranger to discuss something so personal. But you do it for your child. We meet a very warm, genuinely honest woman.
She was questioned at length, by Ruben and by us. Yes, we now know that a prosthetic eye looks almost real, but not quite. Yes, we also know now that people can look at you strangely. Yes, getting used to a new artificial eye is a bit harder than getting used to new shoes that you have to break in. A glass artificial eye can break. A prosthetic eye might also not be well-made, which makes you feel very uncomfortable; it can sometimes almost fall out; your prosthesis can get dirty and then you have to clean it; the fear that something will happen to your good eye is always there; and wearing protective sports goggles is a must. Having your good eye checked regularly is a must. Sometimes your eye is too dry and you need artificial tears; you don’t look particularly good without an artificial eye either, but… You can have friends, go to school, play sports, swim, learn, study, drive a car, go through life pain-free, have fun, be a person, be a child. Petra lives with a partner, has a wonderful life, has a positive outlook, and enjoys life to the fullest!
We talk about it at length and undergo tests at Visio to see how Ruben’s eyes function—and, more importantly, how he functions with just one eye. And it seems to be going very well. We didn’t just sleep on it for one night—we mulled it over for countless nights. And ultimately, as a family, we concluded that the pain must be eliminated, the sensitivity to light must be resolved, and the cosmetic aspect is of the utmost importance in order to give Ruben a good life.
In the meantime
We have the conversation at the hospital. At first, the conversation is warm. It restores Ruben’s confidence that they are listening to him. Unfortunately, it ultimately takes another half a year before the evisceration finally takes place. And in the meantime… a conjunctival suture is performed first, in the hope that an amputation might not be necessary. Unfortunately, this umpteenth surgery proves unsuccessful. The sutures come loose prematurely, the pain persists, his eye looks hideous, and the promised shell prosthesis that was supposed to cover it turns out to be impossible to fit at all. The ground is pulled out from under our feet. Ruben looks in the mirror and sees a terrible, still very painful, zombie-like eye. “I could never live with this!”
The Moment of Truth
A second opinion from Best Doctors America is needed to convince the doctors that the pain is a form of nerve pain and is unbearable, and that Ruben’s overall development will be compromised if a solution isn’t found soon. Finally, a date is set for the evisceration, and the countdown can begin. Ruben is completely ready, and preparations can begin because…
Back to the beginning of this story
Ruben wants to have his eye cremated, so this mom is going to take care of that. Or so I thought! At the first crematorium, they laughed at me. At the second, they said they’d call me back, but it basically came down to “don’t call us, we’ll call you.” My heart sinks, but I can’t give up. I’ve been fighting like a lioness for months. Eventually, I get in touch with an old acquaintance, Melissa: my heroine! She works at a funeral home and takes care of everything down to the last detail. The crematorium in Amersfoort is willing to help; we set a date, and coffee, lemonade, and dry cake are arranged. At first, a mini-urn would have been fine, except that all urns contain metal to screw the lid on (after the cremation). A small detail, but we found a solution to this challenge as well. As a family, we’re going to see Jan-Carel Koster, an artist who will create a beautiful wooden urn in the shape of an eye for Ruben. Wow! Ruben’s wish is going to come true.
Is that your own eye?
Or maybe not, after all? The hospital refuses to release Ruben’s eye. Unbelievable, but true. And maybe it sounds too gruesome to you… because who would take their child’s eye home only to have it cremated? Still, we believe Rubens’s wish shouldn’t just be brushed aside. He has fought, struggled, and lived on sheer willpower for over a year and a half. Now it’s over, and he wants only one thing: to say goodbye in a dignified way to his eye, his pain and sorrow—the part of his body that has been a part of his life for 8 years!
Weeks go by; we ask our personal injury lawyer for advice and send a written notice stating that we do not consent to the use of Ruben’s eye for scientific purposes. Ruben writes a letter to the doctors himself, and there are quite a few phone calls. Rage courses through my veins. What kind of nonsense is this? Your eye is yours, isn’t it? But nothing could be further from the truth—you’re at the mercy of your doctors. In principle, you have no right to your own body part. Fighting pays off, and eventually we receive the redeeming answer. We’ll get the eye back immediately after the surgery. I can’t put into words how the joy on Ruben’s face looked. He was finally able to bring a very difficult period to a dignified close—on his own terms! Documents have to be drawn up, the legal department has to review them, everything is signed by us, the doctors, and Ruben, and then the surgery can finally take place.
In the refrigerator
After the surgery, they hand me a little jar—it’s transparent. How gruesome! I don’t look at it; I put it in a plastic bag and drive home that evening with an eye in my purse. My husband is sleeping with our son, and while they’re there, I gather all my courage and place the remains of the eye in the refrigerator. An eye born of the love between my husband and me, an eye that had looked at me every day for eight years. An eye that had disrupted the life of my most precious possession—and for which we’d done everything in our power to save for a year and a half—was now sitting in the fridge…
The Cremation
The evening before the cremation was the moment when the eye was finally taken out of the refrigerator and we were going to transfer it into the urn. I’ve seen a lot in my life, but this was a moment I can describe as unbelievable, groundbreaking, and deeply emotional. As a teenager, I’d once had to dissect a cow’s eye in biology class. I took the eye home so I could show my mother what a lens looked like—she’d just had cataract surgery. This was a whole different ballgame, but I felt confident and grounded. A primal force took hold of my body. What a beautiful moment it was! I won’t go into details, but believe me… I’m so proud that we can go through this as a family and that we’re allowed to be so strong and vulnerable together.
The cremation took place on Saturday morning, July 4. It was supposed to be sweltering that day, but that didn’t bother us at all. Together with Grandpa, Grandma, our friend Joyce, and the three of us, we drove to the crematorium. The reception in Amersfoort was warm, respectful, and deeply moving. Ruben was shown how the cremation chamber worked and was allowed to operate the control panel himself. He even got to cremate his own eye! It was beyond belief!!! We wrapped up the service with some snacks and drinks, and that was when we were set to head back home…
Or maybe not?
What Ruben didn’t know was that an 8-engine limo would pull up at the entrance to the crematorium. Like a true VIP, he—along with the rest of us—was picked up and driven along a beautiful scenic route to a party venue in Ede. There, more than 70 friends, classmates, and family members were waiting for us. A huge party had been secretly organized, complete with three eye-shaped cakes, helium balloons, streamers, flowers, gumball eyes, snacks, drinks, ice cream, and gifts. Most of these were donated by companies that didn’t even know us, but were captivated by our story. “Celebrate life” was the theme! And that’s exactly what we did, surrounded by so many lovely people. With so much strength, love, understanding, compassion, and joy, we partied and enjoyed ourselves, before ending the afternoon tired but satisfied.
Eye prosthesis
In the meantime, Ruben has received a beautiful prosthetic eye from Frédérique Bak. It’s almost indistinguishable from a real eye. Ruben is making great strides and now has the confidence to remove his prosthesis on his own; he received two very nice new pairs of glasses as a gift from our optician, and he’s back in school full-time.
Trust in your strength!
Dear friends, enjoy life. Always listen to your gut, trust in your strength, and break through taboos. I haven’t regretted for a single moment that I fought like a lioness. I’m proud that we’ve broken taboos like the amputation and cremation of an eye. I’m also proud that we’ve lived life to the fullest and celebrated. And I’m proud of my family—and especially our son Ruben. Now, with his prosthesis, he can go through life pain-free. He can play outside again, he can be a child again… And no, life with an eye prosthesis isn’t all “hallelujah”—we’re still a long way from that. But after two years, we can finally look forward again!
