The plane takes off. Out the window, for a moment, squares of
vividly green farmland are framed by cloud kissed mountains before Cali,
Columbia is hidden by the miles. I recline my seat a relaxing 2 inches,
take my 5 year old’s hand and feel - for the first time in years - that
the worst is behind us.
I’ve cunningly positioned myself on my son’s right side, the lens that covers his transplanted left eye, is reminiscent of a Porcelain doll. There is no sparkle of soul, no joy de verve, no life of any kind in the prosthesis. Over the years, I’ve gotten used to the fact that my little boy never looks into my eyes, but not being able to look into both of his is a new and disturbingly Chuckie-esque experience.
We’re rising to flying altitude and hit a spot of turbulence. My little guy laughs and asks if I can ask the Pilot to do it again. He’s a smart, funny, joyful, willful, amazing child. He’s been almost totally blind since birth.
June 23, 2007 at 7am found me meandering to the only hospital in Aruba, in my fiancee’s work van, seven months pregnant and experiencing some unusual pain. I had diagnosed myself with Braxton-Hicks contractions as a worst possible scenario, but was leaning toward violent broccoli induced gas. I was happily anticipating another two months of ice cream fueled baby preparations. I fully expected to be surprised at my baby shower later that day. I was dead wrong.
By the time I reached the hospital I had been in labor for hours without knowing it. I was dilated, not fully, but enough to cause serious concern from my doctor. The next thing I knew I had an IV port, a hospital bed and was becoming alarmed at the way the phrase ‘bed rest’ was being casually tossed around. I still wasn’t all that concerned. I couldn’t be in labor. It was impossible. Labor pains are agonizingly painful, and honestly – I just felt like I had to poop. I was more concerned with my inner Abibliophobiac, how was I going to score her enough reading material for two months of bed rest.
I settled into bed, laid a hand on my baby, read a little and then dozed off. I was woken to more appropriately agonizing pain and then… my water broke. I noticed right away that it smelt strange, infected. As my hands trembled for the nurse call button I was aware, for the first time that my baby was in serious trouble.
At exactly 7pm that night, via emergency C-section, my son was born. I was strapped to a gurney, dead from the waist down the first time I saw a flash of my child. He was too pale, far too tiny and completely silent. They took him to an incubator in the corner, outside my range of vision and ignored my faint voiced questions while a surgeon sewed the hastily hacked gash they’d cut in my abdomen.
The pediatrician finally told me that I’d had a serious infection, my baby and I were both very sick. I couldn’t process his words. I hadn’t felt sick at all, just gassy. His mouth told me that the next 72 hours were critical for my little boy but eyes held only pity. The doctor said I needed rest and I’d be able to see my boy in the morning but he didn’t believe that. He didn’t think my baby would live through the night.
I was doped up and delivered to a maternity ward. Babies, in various stages in contentment were swaddled in gender specifically colored blankets next to their sleepily beaming mommies. I was freaking the fuck out. My son’s Father and other people were there to see me but I wasn’t there anymore. I was lost in my sedated mind, mildly hallucinating about babies without blue blankets and tiny coffins buried in nameless graves, half expecting to wake from a nightmare and find myself in bed snuggling my bump. It was a very dark moment. I was afraid to show a lack of faith, so I held my terror privately, as closely as I would have held my baby – if I could have.
After lights out I was with it enough to ask a Jackal-faced night nurse if I could see my child. She said there was no way, I was too weak. Clearly, she did not know me. These memories are hazy but I believe I lowered the railing on my bed, stumbled from the bed with all the grace (and undergarments) of Brittney Spears circa 2005, dangled myself gracefully from my IV pole and informed her that I would either see my child or raise holy hell right there amongst the sleeping newborns. I may have mentioned that she shouldn't mess with me, because I’m from New Jersey.
I was a truly terrifying sight to behold. More likely, I was truly pathetic and she took pity on me. 10 minutes later, in Haz-Mat suit, I saw my son for the first time. He was impossibly tiny, reminiscent of a monkey and had so many tubes taped to his face that I could barley see his features. I couldn’t process what I felt. I didn’t even try.
His vitals monitor was alarming every 30 seconds, no one was worried about this except me. I pressed my nose to the plastic of his incubator and told him it was going to be ok. I begged him to live. I told him how doctors had told me that I’d never have a child but I’d always wanted to be a mother more than anything. I sang and I cried and I prayed and I promised I’d always take care of him and love him no matter what. I named him Gabriel but didn’t say it aloud.
The nurse had tears in her eyes, when she informed me that I had to get back to my room. She hugged me and told me she’d seen a lot of babies and mine was a fighter. She was right.
Five weeks later Gabriel, weighing in at a whooping 5lbs, decked out in an overly large blue, bunny pajama set came home with a clean bill of health. He and I spent a blissful 2 months getting to know each other. He was the best baby, hardly ever cried, was so easy to comfort. I was fastidious in my nurturing. We listened to classical music and walked in the sunshine. I was curious as to why he never opened his eyes in the light, but assured by the pediatrician that it was normal for premature babies to be photosensitive – he wasn’t even supposed to be born yet.
Then he started missing milestones. Never looked at me. Never smiled. I took him to the pediatrician again and again.I said I thought there was something wrong with his eyes. They said he was fine. His eyes were tested, he had the red reflex. They told me to chill and started treating me like a crazy, overprotective, wackadoodle new mother. I tried to chill, but worried obsessively instead.
I was singing to him one day, when he was about 6 months old (the equivalent of 3.5 months in his premie time) and ended the song with a huge raspberry on his face. He smiled at me. A big, toothless, drooly smile that lit up has face and rocked my world. He had interacted with me, it was HUGE!
I knew right then that his eyes weren’t ok. A few days later it was confirmed, not by his pediatrician, but by the nurse at the yellow cross. She looked into his eyes and said, ‘Your baby has cataracts, you need to see a specialist right away.’
I started crying. I was so relieved to hear SOMETHING. Validation danced with terror to an angry beat in my heart as my tears dried. It could have been so much worse than cataracts, I assured myself. However, I also had an ominous feeling, like maybe the worst was yet to come. That time I was right.
Gabriel, his Father and I left for Bogota, Columbia on Thanksgiving Day 2007. Three weeks later we returned home with heavy hearts and sat down umpteen times to tell our family and friends that Gabriel had Retinopathy of Prematurity. He was at stage 5/Rush when diagnosed and there was nothing that they could do. He could see a little light, but would eventually lose it because of the amount of scar tissue that had grown behind his retina. Eventually, my baby would go blind.
I’ve cunningly positioned myself on my son’s right side, the lens that covers his transplanted left eye, is reminiscent of a Porcelain doll. There is no sparkle of soul, no joy de verve, no life of any kind in the prosthesis. Over the years, I’ve gotten used to the fact that my little boy never looks into my eyes, but not being able to look into both of his is a new and disturbingly Chuckie-esque experience.
We’re rising to flying altitude and hit a spot of turbulence. My little guy laughs and asks if I can ask the Pilot to do it again. He’s a smart, funny, joyful, willful, amazing child. He’s been almost totally blind since birth.
June 23, 2007 at 7am found me meandering to the only hospital in Aruba, in my fiancee’s work van, seven months pregnant and experiencing some unusual pain. I had diagnosed myself with Braxton-Hicks contractions as a worst possible scenario, but was leaning toward violent broccoli induced gas. I was happily anticipating another two months of ice cream fueled baby preparations. I fully expected to be surprised at my baby shower later that day. I was dead wrong.
By the time I reached the hospital I had been in labor for hours without knowing it. I was dilated, not fully, but enough to cause serious concern from my doctor. The next thing I knew I had an IV port, a hospital bed and was becoming alarmed at the way the phrase ‘bed rest’ was being casually tossed around. I still wasn’t all that concerned. I couldn’t be in labor. It was impossible. Labor pains are agonizingly painful, and honestly – I just felt like I had to poop. I was more concerned with my inner Abibliophobiac, how was I going to score her enough reading material for two months of bed rest.
I settled into bed, laid a hand on my baby, read a little and then dozed off. I was woken to more appropriately agonizing pain and then… my water broke. I noticed right away that it smelt strange, infected. As my hands trembled for the nurse call button I was aware, for the first time that my baby was in serious trouble.
At exactly 7pm that night, via emergency C-section, my son was born. I was strapped to a gurney, dead from the waist down the first time I saw a flash of my child. He was too pale, far too tiny and completely silent. They took him to an incubator in the corner, outside my range of vision and ignored my faint voiced questions while a surgeon sewed the hastily hacked gash they’d cut in my abdomen.
The pediatrician finally told me that I’d had a serious infection, my baby and I were both very sick. I couldn’t process his words. I hadn’t felt sick at all, just gassy. His mouth told me that the next 72 hours were critical for my little boy but eyes held only pity. The doctor said I needed rest and I’d be able to see my boy in the morning but he didn’t believe that. He didn’t think my baby would live through the night.
I was doped up and delivered to a maternity ward. Babies, in various stages in contentment were swaddled in gender specifically colored blankets next to their sleepily beaming mommies. I was freaking the fuck out. My son’s Father and other people were there to see me but I wasn’t there anymore. I was lost in my sedated mind, mildly hallucinating about babies without blue blankets and tiny coffins buried in nameless graves, half expecting to wake from a nightmare and find myself in bed snuggling my bump. It was a very dark moment. I was afraid to show a lack of faith, so I held my terror privately, as closely as I would have held my baby – if I could have.
After lights out I was with it enough to ask a Jackal-faced night nurse if I could see my child. She said there was no way, I was too weak. Clearly, she did not know me. These memories are hazy but I believe I lowered the railing on my bed, stumbled from the bed with all the grace (and undergarments) of Brittney Spears circa 2005, dangled myself gracefully from my IV pole and informed her that I would either see my child or raise holy hell right there amongst the sleeping newborns. I may have mentioned that she shouldn't mess with me, because I’m from New Jersey.
I was a truly terrifying sight to behold. More likely, I was truly pathetic and she took pity on me. 10 minutes later, in Haz-Mat suit, I saw my son for the first time. He was impossibly tiny, reminiscent of a monkey and had so many tubes taped to his face that I could barley see his features. I couldn’t process what I felt. I didn’t even try.
His vitals monitor was alarming every 30 seconds, no one was worried about this except me. I pressed my nose to the plastic of his incubator and told him it was going to be ok. I begged him to live. I told him how doctors had told me that I’d never have a child but I’d always wanted to be a mother more than anything. I sang and I cried and I prayed and I promised I’d always take care of him and love him no matter what. I named him Gabriel but didn’t say it aloud.
The nurse had tears in her eyes, when she informed me that I had to get back to my room. She hugged me and told me she’d seen a lot of babies and mine was a fighter. She was right.
Five weeks later Gabriel, weighing in at a whooping 5lbs, decked out in an overly large blue, bunny pajama set came home with a clean bill of health. He and I spent a blissful 2 months getting to know each other. He was the best baby, hardly ever cried, was so easy to comfort. I was fastidious in my nurturing. We listened to classical music and walked in the sunshine. I was curious as to why he never opened his eyes in the light, but assured by the pediatrician that it was normal for premature babies to be photosensitive – he wasn’t even supposed to be born yet.
Then he started missing milestones. Never looked at me. Never smiled. I took him to the pediatrician again and again.I said I thought there was something wrong with his eyes. They said he was fine. His eyes were tested, he had the red reflex. They told me to chill and started treating me like a crazy, overprotective, wackadoodle new mother. I tried to chill, but worried obsessively instead.
I was singing to him one day, when he was about 6 months old (the equivalent of 3.5 months in his premie time) and ended the song with a huge raspberry on his face. He smiled at me. A big, toothless, drooly smile that lit up has face and rocked my world. He had interacted with me, it was HUGE!
I knew right then that his eyes weren’t ok. A few days later it was confirmed, not by his pediatrician, but by the nurse at the yellow cross. She looked into his eyes and said, ‘Your baby has cataracts, you need to see a specialist right away.’
I started crying. I was so relieved to hear SOMETHING. Validation danced with terror to an angry beat in my heart as my tears dried. It could have been so much worse than cataracts, I assured myself. However, I also had an ominous feeling, like maybe the worst was yet to come. That time I was right.
Gabriel, his Father and I left for Bogota, Columbia on Thanksgiving Day 2007. Three weeks later we returned home with heavy hearts and sat down umpteen times to tell our family and friends that Gabriel had Retinopathy of Prematurity. He was at stage 5/Rush when diagnosed and there was nothing that they could do. He could see a little light, but would eventually lose it because of the amount of scar tissue that had grown behind his retina. Eventually, my baby would go blind.
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