The Vegetable: Natasha’s Story
It’s the day before Thanksgiving. A young woman sits at the kitchen table franticly trying to figure out all of the last minute details necessary to host her third Thanksgiving day feast. The turkey is in the refrigerator thawing, the casseroles are ready to bake. She’ll make the dessert tomorrow.
She worries about how the in-laws will take her simple very traditional Thanksgiving meal. Will it be good enough for them? The dessert is pumpkin cobbler, not pumpkin pie. Will that go over alright this year? The lack of stuffing last year sure backfired and she doesn’t want a repeat this year. She knows this year is different, but not as different as next year will be. She pats her stomach. She’s 26 weeks pregnant. This time next year we’ll have a baby to experience the holidays with, she thinks to herself. That will be different.
She’s been experiencing some mild cramping, but her doctor tells her it’s nothing to be overly concerned about. So she cringes and tries to ignore the pains in her back. That night, as she lay in bed, her husband asleep at her side, the pain gets worse. Just as she’s about to dose off, it happens. She wakes her husband. “My water just broke,” she tells him.
“Ok hun, go back to sleep,” he replies. She reaches over and slaps him across the face! “Did you hear me?” she asks.
A pause. “Are you sure?”
“YES!”
“Isn’t it early? We better go to the hospital.”
“Yeah!” she replies. He calls her doctor and twenty minutes later they pull up to the small hospital. But, it’s the night before Thanksgiving, there’s no doctor and the doctor on call isn’t answering the page. To top it off, her own doctor is out of the country on vacation.
By now the nurses realize it’s too late to stop labor. The contractions are too close together. Can they transfer her to the large hospital in the city in time? No one has ever heard of a baby coming this early before.
So, it’s into the ambulance without her husband. He has to follow in the car. A strange hospital in the city, a strange OB, and a baby who wants out, but wait, there’s yet another problem. Because the baby is so early, it’s breach. It’s after midnight on Thanksgiving day before the baby is born. It’s tiny and blue and not moving right. The young woman is whisked off to another area of the hospital where a different set of doctors fight to save her life. It’s more than twenty-four hours before she gets to see her daughter.
The baby girl, now named Natasha, is whisked off to the neonatal intensive care unit at the children’s hospital down the street.
“Don’t worry about me, go to Natasha,” the young woman tells her husband. “She’s just a baby. She shouldn’t be alone.”
For nearly a week, the young woman’s husband runs back and forth between hospitals torn between his sick wife and his newborn daughter. Every time he shows up at her bedside, the young woman tells him to go back to their daughter. Finally when the young woman is released from the hospital, she and her husband can see their baby girl at the same time. The young woman stands over her daughter’s incubator in the neonatal intensive care unit. The infant still doesn’t look well and she isn’t gaining weight. Two days later, as she stands over her daughter using a single finger to rub the tiny infant’s back, she notices that the baby isn’t breathing.
Faster than the young woman can blink, the infant is surrounded by technicians and enters cardiac arrest for the first time. A chaotic 48 hours later, Natasha is diagnosed with viral meningitis. Before she is released from the hospital, Natasha’s heart will stop at least seven more times. Finally, in early February, the young woman is handed her daughter and told “Here she is, she’s blind deaf and mentally retarded. She’ll be no more than a vegetable. You’d be advised to put her in an institution and forget about her. Oh and by the way, we wouldn’t advise having any more kids. The next one will be born even earlier. Have a nice life.”
Devastated, and scared out of their minds, with absolutely no one to turn to, the young woman’s husband drives his wife and their daughter home. The next two years are full of driving into the city multiple times a week to take Natasha to doctor’s appointments. She is up to four pounds but is wracked with seizures almost constantly. No one knows how much damage has been done to her brain. The young couple was totally and completely alone. Family refused to visit or help. As the months passed, phone calls and visits from friends became more infrequent. After all, who wants to be around a vegetable.
But, the young woman was observant. She noticed that when her daughter’s medications would start to ware off and the time for another dose grew near, her daughter would become more alert. At Natasha’s first birthday, only the young woman’s parents were there to celebrate with her and her little family. After all, the one-year-old Natasha couldn’t hold her head up. What no one but her parents new though was that Natasha could already talk. Natasha could articulate the word “ball” perfectly at nine months. It was this glimmer of light that would shape the rest of Natasha’s future. She wasn’t a vegetable after all!
The young woman took Natasha to occupational and physical therapy three times a week. She did all the little exercises at home, and still at eighteen months, Natasha wasn’t even holding her head up. The young woman had had enough. She was tired of “loosing” her daughter every time she gave her one medication in particular. So, against the advice of every doctor, she took Natasha off the medication. Within a week, not only was Natasha holding her head up entirely on her own, but she was trying to pull herself up on the sides of her playpen. It took the young woman another two months to convince the doctors that she wasn’t crazy. Actually, Natasha did that herself by loudly and clearly telling her pediatrician “want blue ball.”
Just after Natasha's second birthday, the young woman took Natasha to a new neurologist who specialized in children. Natasha continued to have seizures on a daily basis. Even though she could walk, her control never improved and her legs were often too tight to allow her to stand. When she did stand, her hip sockets made a grinding and popping noise – a classic symptom of hip displasia. The young woman was told that the hip displasia would fix itself as her daughter grew. Natasha’s arms were curled up so tightly that it took every bit of the young woman’s strength to help her daughter release her arms so she could use them to balance. The new neurologist diagnosed Natasha with spastic quadriplegia. This means a tightness in the muscles of the arms, legs and torso. It is one of the many types of Cerebral Palsy.
There was clearly something wrong with the way Natasha saw but no ophthalmologist could see anything wrong with her eyes. It would be another ten years before the technology would be developed that could process how someone saw the world, measure visual fields, and view the brain in a detailed way.
There still isn’t a term, a name for the condition I have. The closes the medical field can come is Optic Nerve Atrophy and Cortical Visual Impairment. However, labels only matter to the medical community. I’m just me.
Enter my own earliest memories. I remember at age five and then again at age seven having to learn how to walk again because a seizure had further damaged my brain. I remember being in pain from the tightness in my muscles that no muscle relaxer would touch. I remember my last two major seizures even though they were over twenty years ago now. But, most clearly I remember those first MRI’s and visual field tests. I remember the special trips out of state to see the “experts” on non-eye vision problems. I remember the humility of the years in full leg braces each time I learned to walk. I remember the teachers who thought we were lying about my sight because my eyes looked normal. They do, there’s nothing wrong with my eyes. Quite literally, it’s all in my brain – or the half of it I have left anyway.
I walk with a limp and a semi-circular gate. There are still days when my right hand is clinched so tight that my own fingernails draw blood. And there’s not a thing I can do about it. The extensive brain damage has also lead to a neurological chronic pain condition called Fibromyalgia. My brain processes pain in places where there is no reason to process pain. Not a day goes by when I’m not in some kind of pain, somewhere – or everywhere.
With such a complicated medical history, and add to that my residual sight being atypical, I never dreamed I’d qualify for a guide dog. The only people I knew who had guides, were totally blind. Plus, you need two working hands to work with a guide dog right? Wrong.
I’ve been partnered with Fossey, a female black Labrador retriever for six years now and to say she’s changed my life would be the understatement of the century! My gate has improved now that I walk with a dog. She doesn’t care if it is a good or a bad eye day. She just does her job. She happily learned to take steps down one at a time, quickly learned that uneven pavement and hills needed to be handled differently. She even took it all in stride when I asked her to learn to counterbalance me when I begin to fall. I work Fossey entirely one handed, never picking the leash up with my right hand. As we’ve aged together, and learned new techniques, Fossey has even adapted to my one-handed clicker training techniques. She has traveled with me through the trials of college and two Master’s degrees. Together we’ve tackled 14 hours out and about and days where I was in too much pain to get out of bed. Fossey is nothing short of a miracle on paws for me. Today, her list of extra commands exceeds fifty. Now, that is a dog, who like me, rose to the challenge of life.
Some Vegetable.
Oh, and in case you were wondering, to this day, no one has any idea what happened to that turkey the very brave young woman known as my mom planned to cook for the Thanksgiving Day feast that wasn’t.
She worries about how the in-laws will take her simple very traditional Thanksgiving meal. Will it be good enough for them? The dessert is pumpkin cobbler, not pumpkin pie. Will that go over alright this year? The lack of stuffing last year sure backfired and she doesn’t want a repeat this year. She knows this year is different, but not as different as next year will be. She pats her stomach. She’s 26 weeks pregnant. This time next year we’ll have a baby to experience the holidays with, she thinks to herself. That will be different.
She’s been experiencing some mild cramping, but her doctor tells her it’s nothing to be overly concerned about. So she cringes and tries to ignore the pains in her back. That night, as she lay in bed, her husband asleep at her side, the pain gets worse. Just as she’s about to dose off, it happens. She wakes her husband. “My water just broke,” she tells him.
“Ok hun, go back to sleep,” he replies. She reaches over and slaps him across the face! “Did you hear me?” she asks.
A pause. “Are you sure?”
“YES!”
“Isn’t it early? We better go to the hospital.”
“Yeah!” she replies. He calls her doctor and twenty minutes later they pull up to the small hospital. But, it’s the night before Thanksgiving, there’s no doctor and the doctor on call isn’t answering the page. To top it off, her own doctor is out of the country on vacation.
By now the nurses realize it’s too late to stop labor. The contractions are too close together. Can they transfer her to the large hospital in the city in time? No one has ever heard of a baby coming this early before.
So, it’s into the ambulance without her husband. He has to follow in the car. A strange hospital in the city, a strange OB, and a baby who wants out, but wait, there’s yet another problem. Because the baby is so early, it’s breach. It’s after midnight on Thanksgiving day before the baby is born. It’s tiny and blue and not moving right. The young woman is whisked off to another area of the hospital where a different set of doctors fight to save her life. It’s more than twenty-four hours before she gets to see her daughter.
The baby girl, now named Natasha, is whisked off to the neonatal intensive care unit at the children’s hospital down the street.
“Don’t worry about me, go to Natasha,” the young woman tells her husband. “She’s just a baby. She shouldn’t be alone.”
For nearly a week, the young woman’s husband runs back and forth between hospitals torn between his sick wife and his newborn daughter. Every time he shows up at her bedside, the young woman tells him to go back to their daughter. Finally when the young woman is released from the hospital, she and her husband can see their baby girl at the same time. The young woman stands over her daughter’s incubator in the neonatal intensive care unit. The infant still doesn’t look well and she isn’t gaining weight. Two days later, as she stands over her daughter using a single finger to rub the tiny infant’s back, she notices that the baby isn’t breathing.
Faster than the young woman can blink, the infant is surrounded by technicians and enters cardiac arrest for the first time. A chaotic 48 hours later, Natasha is diagnosed with viral meningitis. Before she is released from the hospital, Natasha’s heart will stop at least seven more times. Finally, in early February, the young woman is handed her daughter and told “Here she is, she’s blind deaf and mentally retarded. She’ll be no more than a vegetable. You’d be advised to put her in an institution and forget about her. Oh and by the way, we wouldn’t advise having any more kids. The next one will be born even earlier. Have a nice life.”
Devastated, and scared out of their minds, with absolutely no one to turn to, the young woman’s husband drives his wife and their daughter home. The next two years are full of driving into the city multiple times a week to take Natasha to doctor’s appointments. She is up to four pounds but is wracked with seizures almost constantly. No one knows how much damage has been done to her brain. The young couple was totally and completely alone. Family refused to visit or help. As the months passed, phone calls and visits from friends became more infrequent. After all, who wants to be around a vegetable.
But, the young woman was observant. She noticed that when her daughter’s medications would start to ware off and the time for another dose grew near, her daughter would become more alert. At Natasha’s first birthday, only the young woman’s parents were there to celebrate with her and her little family. After all, the one-year-old Natasha couldn’t hold her head up. What no one but her parents new though was that Natasha could already talk. Natasha could articulate the word “ball” perfectly at nine months. It was this glimmer of light that would shape the rest of Natasha’s future. She wasn’t a vegetable after all!
The young woman took Natasha to occupational and physical therapy three times a week. She did all the little exercises at home, and still at eighteen months, Natasha wasn’t even holding her head up. The young woman had had enough. She was tired of “loosing” her daughter every time she gave her one medication in particular. So, against the advice of every doctor, she took Natasha off the medication. Within a week, not only was Natasha holding her head up entirely on her own, but she was trying to pull herself up on the sides of her playpen. It took the young woman another two months to convince the doctors that she wasn’t crazy. Actually, Natasha did that herself by loudly and clearly telling her pediatrician “want blue ball.”
Just after Natasha's second birthday, the young woman took Natasha to a new neurologist who specialized in children. Natasha continued to have seizures on a daily basis. Even though she could walk, her control never improved and her legs were often too tight to allow her to stand. When she did stand, her hip sockets made a grinding and popping noise – a classic symptom of hip displasia. The young woman was told that the hip displasia would fix itself as her daughter grew. Natasha’s arms were curled up so tightly that it took every bit of the young woman’s strength to help her daughter release her arms so she could use them to balance. The new neurologist diagnosed Natasha with spastic quadriplegia. This means a tightness in the muscles of the arms, legs and torso. It is one of the many types of Cerebral Palsy.
There was clearly something wrong with the way Natasha saw but no ophthalmologist could see anything wrong with her eyes. It would be another ten years before the technology would be developed that could process how someone saw the world, measure visual fields, and view the brain in a detailed way.
There still isn’t a term, a name for the condition I have. The closes the medical field can come is Optic Nerve Atrophy and Cortical Visual Impairment. However, labels only matter to the medical community. I’m just me.
Enter my own earliest memories. I remember at age five and then again at age seven having to learn how to walk again because a seizure had further damaged my brain. I remember being in pain from the tightness in my muscles that no muscle relaxer would touch. I remember my last two major seizures even though they were over twenty years ago now. But, most clearly I remember those first MRI’s and visual field tests. I remember the special trips out of state to see the “experts” on non-eye vision problems. I remember the humility of the years in full leg braces each time I learned to walk. I remember the teachers who thought we were lying about my sight because my eyes looked normal. They do, there’s nothing wrong with my eyes. Quite literally, it’s all in my brain – or the half of it I have left anyway.
I walk with a limp and a semi-circular gate. There are still days when my right hand is clinched so tight that my own fingernails draw blood. And there’s not a thing I can do about it. The extensive brain damage has also lead to a neurological chronic pain condition called Fibromyalgia. My brain processes pain in places where there is no reason to process pain. Not a day goes by when I’m not in some kind of pain, somewhere – or everywhere.
With such a complicated medical history, and add to that my residual sight being atypical, I never dreamed I’d qualify for a guide dog. The only people I knew who had guides, were totally blind. Plus, you need two working hands to work with a guide dog right? Wrong.
I’ve been partnered with Fossey, a female black Labrador retriever for six years now and to say she’s changed my life would be the understatement of the century! My gate has improved now that I walk with a dog. She doesn’t care if it is a good or a bad eye day. She just does her job. She happily learned to take steps down one at a time, quickly learned that uneven pavement and hills needed to be handled differently. She even took it all in stride when I asked her to learn to counterbalance me when I begin to fall. I work Fossey entirely one handed, never picking the leash up with my right hand. As we’ve aged together, and learned new techniques, Fossey has even adapted to my one-handed clicker training techniques. She has traveled with me through the trials of college and two Master’s degrees. Together we’ve tackled 14 hours out and about and days where I was in too much pain to get out of bed. Fossey is nothing short of a miracle on paws for me. Today, her list of extra commands exceeds fifty. Now, that is a dog, who like me, rose to the challenge of life.
Some Vegetable.
Oh, and in case you were wondering, to this day, no one has any idea what happened to that turkey the very brave young woman known as my mom planned to cook for the Thanksgiving Day feast that wasn’t.