So I’ve mentioned that my son was born in Aruba but I’m from New
Jersey. Naturally, you’re wondering how that came to be. The tale is
electrifying, I assure you. It involves a man, a boat, and a plan to
sail around the world. I couldn’t possibly do that story justice in
this forum, so I won’t even try. I’ll write about it one day…a rousing
sea shanty, perhaps.
Aruba is a lovely, sweet, simple island with one hospital. Complicated medical situations are referred out to Columbia. Gabriel went from being ‘fine’ to a complicated medical situation on a Tuesday. That Thursday my little guy, his daddy, and I were headed to Bogota, Columbia where we had an appointment with a Pediatric Ophthalmologist the next day.
Allow me to momentarily digress:
Evo (Gabriel’s Father) and I aren’t together anymore, but we do live together and he's one of my best friends. He's a great Father, but when fishing is good you won’t find that man on land. Now, comforted by the anesthetizing caress of time and a shift in the dynamic of our realtionship, I can find this a charming personality quirk but at the time it drove me batcrap crazy. I was basically the solitary parent of a premature infant, carless, internetless, and terrified. I knew that there was something terribly wrong with my child, but no one believed me. All of my friends and family were over 2,000 miles away. We were struggling financially, I’d recently had to hock my engagement ring for rent money…It was a terrible and lonely time for me, but Evo couldn’t understand this. He is incredibly self-contained. Sometimes I think he’s a bit like the ocean on a calm day. Beautifully tranquil, on the surface, but hiding much within it’s depths.
So, we flew to Columbia, checked into the hotel and had a conversation that went something like this:
Evo: When they take off the cataracts, do you think it will hurt him?
Me: I don’t think they’re right about that. I think it’s worse than cataracts.
Evo: No, they said cataracts.
Me: I know, I just have a really bad feeling about this. I think it’s worse than they think. I don’t think he can see at all. Even with cataracts he should be able to see something, right?
Evo: You worry too much.
(We may have had a sideline conversation about his idea of worrying being my idea of preparing for the future. I have no doubt that valid points were raised by each of us.)
Discussion unresolved, we went to bed. Evo and Gabriel slept the blissful sleep of the innocent while I stayed up late into the night biting my nails.
The next day Gabriel was poked, prodded, ultrasounded, CAT-scaned and given eye drops by the gallon. His medical records were analyzed and at one point a doctor opened his eye with some sort of metallic reverse clothespin from hell, turned out the light, stared into my child’s now bulging eye with a Klieg light and said in a stage whisper, “Oh, eso no es bueno.” I didn’t speak any Spanish at the time but even I knew that it wasn’t good.
The doctors ran more tests and then delivered the grim diagnosis I’ve already mentioned. Stage 5 ROP, rush disease, no hope.
Evo was crushed. He waited until we were back at the hotel and completely lost his shit. He was looking at the sleeping form of our eye drop sodden child and showed me his tears for the first time in our 5 year relationship. I remember holding him and telling him that it would be ok. I told him about every successful blind person I’d ever heard of and all the blind friendly technology they have these days and how it’s only going to get better.
Evo looked at me with his beautiful, liquidy chocolate, red rimmed eyes and said he’d give one of those eyes to his son. If I gave him an eye too, he’d be ok. Our son would be the Alaskan Husky kid with one brown eye and one blue. We’d just all lie down on surgical tables and play a merry game of musical eyes. He may have fancied himself in an eye patch, I’m not sure.
His sincerity was disarming. He’d convinced himself that he could fix it. While feeling more affection for him than I had in months, I had to burst his bubble. We had another conversation:
Me: They can’t do that. They’ve never successfully transplanted a whole eye.
Evo: Well what can we do?
Me: Nothing. There is nothing we can do.
Evo: But he can still see light.
Me: I don’t think it matters. His eyes are broken. They aren’t going to get any better unless we get a miracle.
Evo: How can you be so calm about this?
Me: I expected it to be worse, actually. I was worried that his brain was deprived of oxygen for too long the day he was born when he was having such a hard time. They were saying his eyes were fine, and nobody believed me – not even you, but he wasn’t acting normal.
Evo: If you though it was so bad, why didn’t you say something?
At that point I smacked myself in the head so hard that I blacked out for a while.
When I came to, Evo had come to terms with the fact that his son would slowly lose the little vision that he had and one day be totally blind. We left Columbia with a bag full of souvenirs and a new found sadness. We soon learned that the only cure for the sadness was Gabriel himself. His tiny, reaching hands were the only comfort for our anguished souls, his amazing development the only balm for our worries, his smile a light in the dark.
Aruba is a lovely, sweet, simple island with one hospital. Complicated medical situations are referred out to Columbia. Gabriel went from being ‘fine’ to a complicated medical situation on a Tuesday. That Thursday my little guy, his daddy, and I were headed to Bogota, Columbia where we had an appointment with a Pediatric Ophthalmologist the next day.
Allow me to momentarily digress:
Evo (Gabriel’s Father) and I aren’t together anymore, but we do live together and he's one of my best friends. He's a great Father, but when fishing is good you won’t find that man on land. Now, comforted by the anesthetizing caress of time and a shift in the dynamic of our realtionship, I can find this a charming personality quirk but at the time it drove me batcrap crazy. I was basically the solitary parent of a premature infant, carless, internetless, and terrified. I knew that there was something terribly wrong with my child, but no one believed me. All of my friends and family were over 2,000 miles away. We were struggling financially, I’d recently had to hock my engagement ring for rent money…It was a terrible and lonely time for me, but Evo couldn’t understand this. He is incredibly self-contained. Sometimes I think he’s a bit like the ocean on a calm day. Beautifully tranquil, on the surface, but hiding much within it’s depths.
So, we flew to Columbia, checked into the hotel and had a conversation that went something like this:
Evo: When they take off the cataracts, do you think it will hurt him?
Me: I don’t think they’re right about that. I think it’s worse than cataracts.
Evo: No, they said cataracts.
Me: I know, I just have a really bad feeling about this. I think it’s worse than they think. I don’t think he can see at all. Even with cataracts he should be able to see something, right?
Evo: You worry too much.
(We may have had a sideline conversation about his idea of worrying being my idea of preparing for the future. I have no doubt that valid points were raised by each of us.)
Discussion unresolved, we went to bed. Evo and Gabriel slept the blissful sleep of the innocent while I stayed up late into the night biting my nails.
The next day Gabriel was poked, prodded, ultrasounded, CAT-scaned and given eye drops by the gallon. His medical records were analyzed and at one point a doctor opened his eye with some sort of metallic reverse clothespin from hell, turned out the light, stared into my child’s now bulging eye with a Klieg light and said in a stage whisper, “Oh, eso no es bueno.” I didn’t speak any Spanish at the time but even I knew that it wasn’t good.
The doctors ran more tests and then delivered the grim diagnosis I’ve already mentioned. Stage 5 ROP, rush disease, no hope.
Evo was crushed. He waited until we were back at the hotel and completely lost his shit. He was looking at the sleeping form of our eye drop sodden child and showed me his tears for the first time in our 5 year relationship. I remember holding him and telling him that it would be ok. I told him about every successful blind person I’d ever heard of and all the blind friendly technology they have these days and how it’s only going to get better.
Evo looked at me with his beautiful, liquidy chocolate, red rimmed eyes and said he’d give one of those eyes to his son. If I gave him an eye too, he’d be ok. Our son would be the Alaskan Husky kid with one brown eye and one blue. We’d just all lie down on surgical tables and play a merry game of musical eyes. He may have fancied himself in an eye patch, I’m not sure.
His sincerity was disarming. He’d convinced himself that he could fix it. While feeling more affection for him than I had in months, I had to burst his bubble. We had another conversation:
Me: They can’t do that. They’ve never successfully transplanted a whole eye.
Evo: Well what can we do?
Me: Nothing. There is nothing we can do.
Evo: But he can still see light.
Me: I don’t think it matters. His eyes are broken. They aren’t going to get any better unless we get a miracle.
Evo: How can you be so calm about this?
Me: I expected it to be worse, actually. I was worried that his brain was deprived of oxygen for too long the day he was born when he was having such a hard time. They were saying his eyes were fine, and nobody believed me – not even you, but he wasn’t acting normal.
Evo: If you though it was so bad, why didn’t you say something?
At that point I smacked myself in the head so hard that I blacked out for a while.
When I came to, Evo had come to terms with the fact that his son would slowly lose the little vision that he had and one day be totally blind. We left Columbia with a bag full of souvenirs and a new found sadness. We soon learned that the only cure for the sadness was Gabriel himself. His tiny, reaching hands were the only comfort for our anguished souls, his amazing development the only balm for our worries, his smile a light in the dark.
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