{"id":6565,"date":"2016-04-06T13:54:00","date_gmt":"2016-04-06T11:54:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/a-dazzling-farewell\/"},"modified":"2026-09-15T17:14:28","modified_gmt":"2026-09-15T15:14:28","slug":"a-dazzling-farewell","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/a-dazzling-farewell\/","title":{"rendered":"A Dazzling Farewell"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2016-04-06T13:54:00+02:00\">06 April 2016<\/time><\/div>\n<p class=\"wp-block-paragraph\">Immediately, a story pops into my head about a little girl who dug up her guinea pig again at night, because he\u2019d really been dead long enough by then. There you are as a parent, after a well-intentioned burial ritual. I don\u2019t want that grave to turn into a place of pilgrimage. So I tactfully reply that that doesn\u2019t seem like a good solution to me. \u201cWell, Mom, then let\u2019s cremate my eye just like Grandma O.\u201d It\u2019s clear that this little boy needs a farewell\u2014a farewell to his right eye!      <\/p>\n<h2 class=\"wp-block-heading\">Nightmare or Reality<\/h2>\n<p class=\"wp-block-paragraph\">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\u2019m 100% committed to that. You teach your child about life\u2019s norms and values. We explain to them what\u2019s good for them and what isn\u2019t. 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\u2019t 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\u2026 just being a carefree child. But in the end, that\u2019s exactly what happened.              <\/p>\n<h2 class=\"wp-block-heading\">History<\/h2>\n<p class=\"wp-block-paragraph\">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\u2019t hurt, Ruben said; it was just \u201ca little irritating.\u201d 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\u2019t quite gone yet. \u201cIs it bothering you?\u201d I asked Ruben. But he was already eager to go to school and said he wasn\u2019t in any pain. Since my gut feeling was still telling me something wasn\u2019t right, I decided to call our family doctor\u2019s 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\u2019s eye was red\u2014redder 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\u2019s office. He was given antibiotic ointment for his eye, and his eye was patched for 24 to 48 hours.             <\/p>\n<p class=\"wp-block-paragraph\">To make a long story short, let\u2019s 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\u2019s 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\u2026? Perhaps we\u2019ll 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\u2026 \u201cHow did this escalate so much? What happened to that eye?\u201d We tell the story, and I show him which eye drops were used. Well, all sorts of thoughts race through our minds, but there\u2019s 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\u2019s at the WKZ. In a single, darkened room with a quarantine airlock, and before bedtime, he\u2019s already hooked up to a morphine IV and on a heart monitor.<\/p>\n<p class=\"wp-block-paragraph\">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\u2019re no closer to a solution. The eye reacts violently, and the doctors can\u2019t figure out why. Christmas is approaching\u2014for 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.    <\/p>\n<p class=\"wp-block-paragraph\">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\u2019re sitting there waiting for Ruben to come out of the operating room. What a nerve-wracking experience\u2014and he\u2019s in so much pain after the surgery. We stay positive: from now on, we can focus on a successful recovery. That\u2019s how it feels, even though it remains nerve-wracking. Ruben\u2019s pain subsides; he starts to feel more like \u201cour boy\u201d again; everything seems to be going well, and we\u2019re 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.      <\/p>\n<h2 class=\"wp-block-heading\">Recovery or Decline<\/h2>\n<p class=\"wp-block-paragraph\">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\u2014imagine 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\u2019t gouge his own eye out. Still, we\u2019re 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\u2014and we will\u2014keep going.            <\/p>\n<p class=\"wp-block-paragraph\">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\u2019s 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\u2026 we\u2019re trying to stay positive. Maybe a tinted lens will help with the light problem, but no such luck. It looks like there\u2019s a hole in his eye\u2026 Ruben is disappointed. It turns out not to be a good solution. Still, we\u2019re mustering up our courage again! And in the meantime, he\u2019s hiding under his cap, with ski goggles on his nose, facing away from the sun in the living room with the curtains closed. We\u2019re living like moles underground, but fortunately, we\u2019re together as a family.           <\/p>\n<p class=\"wp-block-paragraph\">The pain keeps coming and going, but then comes that one drop\u2026 The proverbial drop that breaks the camel\u2019s back. \u201cEither you come up with a solution, or just take my eye out,\u201d Ruben tells one of the doctors. As a parent, the ground gives way beneath your feet. For a year now, he\u2019s been saying just one thing: \u201cI don\u2019t need anything, except to keep my eye.\u201d That\u2019s why he faithfully endures everything\u2014the 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\u2019s said he doesn\u2019t want to go to the hospital anymore. He\u2019s had enough.<\/p>\n<h2 class=\"wp-block-heading\">Exploring<\/h2>\n<p class=\"wp-block-paragraph\">To get back to the story\u2014because, well\u2026 unfortunately, it\u2019s not over yet\u2014I decide to look for someone with an artificial eye. Because when your child yells, \u201cJust take my eye out,\u201d he needs to know what he\u2019s talking about. And since the hospital isn\u2019t open to these kinds of conversations, Ruben will just have to experience it for himself. No sooner said than done\u2014after countless phone calls\u2014we get in touch with Petra. She lost her entire eye when she was 1.5 years old; she\u2019s now 32. We make an appointment with her and drive to Hengelo, Overijssel. It\u2019s not exactly around the corner, and it\u2019s not something I\u2019d normally do\u2014just 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.        <\/p>\n<p class=\"wp-block-paragraph\">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\u2019t look particularly good without an artificial eye either, but\u2026 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!        <\/p>\n<p class=\"wp-block-paragraph\">We talk about it at length and undergo tests at Visio to see how Ruben\u2019s eyes function\u2014and, more importantly, how he functions with just one eye. And it seems to be going very well. We didn\u2019t just sleep on it for one night\u2014we 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.   <\/p>\n<h2 class=\"wp-block-heading\">In the meantime<\/h2>\n<p class=\"wp-block-paragraph\">We have the conversation at the hospital. At first, the conversation is warm. It restores Ruben\u2019s 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\u2026 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. \u201cI could never live with this!\u201d         <\/p>\n<h2 class=\"wp-block-heading\">The Moment of Truth<\/h2>\n<p class=\"wp-block-paragraph\">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\u2019s overall development will be compromised if a solution isn\u2019t found soon. Finally, a date is set for the evisceration, and the countdown can begin. Ruben is completely ready, and preparations can begin because\u2026  <\/p>\n<h2 class=\"wp-block-heading\">Back to the beginning of this story<\/h2>\n<p class=\"wp-block-paragraph\">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\u2019d call me back, but it basically came down to \u201cdon\u2019t call us, we\u2019ll call you.\u201d My heart sinks, but I can\u2019t give up. I\u2019ve 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\u2019re 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\u2019s wish is going to come true.             <\/p>\n<h2 class=\"wp-block-heading\">Is that your own eye?<\/h2>\n<p class=\"wp-block-paragraph\">Or maybe not, after all? The hospital refuses to release Ruben\u2019s eye. Unbelievable, but true. And maybe it sounds too gruesome to you\u2026 because who would take their child\u2019s eye home only to have it cremated? Still, we believe Rubens\u2019s wish shouldn\u2019t just be brushed aside. He has fought, struggled, and lived on sheer willpower for over a year and a half. Now it\u2019s over, and he wants only one thing: to say goodbye in a dignified way to his eye, his pain and sorrow\u2014the part of his body that has been a part of his life for 8 years!      <\/p>\n<p class=\"wp-block-paragraph\">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\u2019s 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\u2019t it? But nothing could be further from the truth\u2014you\u2019re 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\u2019ll get the eye back immediately after the surgery. I can\u2019t put into words how the joy on Ruben\u2019s face looked. He was finally able to bring a very difficult period to a dignified close\u2014on 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.           <\/p>\n<h2 class=\"wp-block-heading\">In the refrigerator<\/h2>\n<p class=\"wp-block-paragraph\">After the surgery, they hand me a little jar\u2014it\u2019s transparent. How gruesome! I don\u2019t 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\u2019re 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\u2014and for which we\u2019d done everything in our power to save for a year and a half\u2014was now sitting in the fridge\u2026     <\/p>\n<h2 class=\"wp-block-heading\">The Cremation<\/h2>\n<p class=\"wp-block-paragraph\">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\u2019ve seen a lot in my life, but this was a moment I can describe as unbelievable, groundbreaking, and deeply emotional. As a teenager, I\u2019d once had to dissect a cow\u2019s eye in biology class. I took the eye home so I could show my mother what a lens looked like\u2014she\u2019d 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\u2019t go into details, but believe me\u2026 I\u2019m so proud that we can go through this as a family and that we\u2019re allowed to be so strong and vulnerable together.        <\/p>\n<p class=\"wp-block-paragraph\">The cremation took place on Saturday morning, July 4. It was supposed to be sweltering that day, but that didn\u2019t 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\u2026      <\/p>\n<h2 class=\"wp-block-heading\">Or maybe not?<\/h2>\n<p class=\"wp-block-paragraph\">What Ruben didn&#8217;t know was that an 8-engine limo would pull up at the entrance to the crematorium. Like a true VIP, he\u2014along with the rest of us\u2014was 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\u2019t even know us, but were captivated by our story. \u201cCelebrate life\u201d was the theme! And that\u2019s 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.       <\/p>\n<h2 class=\"wp-block-heading\">Eye prosthesis<\/h2>\n<p class=\"wp-block-paragraph\">In the meantime, Ruben has received a beautiful prosthetic eye from <a href=\"https:\/\/ver-ooginoog.nl\/en\/ocularists\/\" data-type=\"page\" data-id=\"843\">Fr\u00e9d\u00e9rique Bak<\/a>. It\u2019s 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\u2019s back in school full-time.  <\/p>\n<h2 class=\"wp-block-heading\">Trust in your strength!<\/h2>\n<p class=\"wp-block-paragraph\">Dear friends, enjoy life. Always listen to your gut, trust in your strength, and break through taboos. I haven\u2019t regretted for a single moment that I fought like a lioness. I\u2019m proud that we\u2019ve broken taboos like the amputation and cremation of an eye. I\u2019m also proud that we\u2019ve lived life to the fullest and celebrated. And I\u2019m proud of my family\u2014and 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\u2026 And no, life with an eye prosthesis isn\u2019t all \u201challelujah\u201d\u2014we\u2019re still a long way from that. But after two years, we can finally look forward again!        <\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201cMom, what happens to your eye once it\u2019s out?\u201d my son, who was 8 at the time, asked. \u201cI think it\u2019ll be destroyed.\u201d \u201cI don\u2019t really want that, Mom.\u201d \u201cCan we bury it?\u201d \u201cWell, I don\u2019t think that\u2019s such a good idea, sweetie.\u201d  <\/p>\n","protected":false},"featured_media":6567,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113],"class_list":["post-6565","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-personal-stories"],"acf":[],"permalink_manager":null,"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6565","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/6567"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6565"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6565"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}