"Hello?"
"Yes, is this Lily's Mom?"
"Yes."
"This is Maybeth from the School for the Blind. Lily is okay. We just wanted to let you know that during her music class, Lily was playing the auto harp- high energy as usual-and then she stopped suddenly. The left side of her body went flaccid and she stared into space for 3-4 seconds. We think she may have had a seizure."
"How is she now?"
"She seemed to come right back out of it but just wanted to let you know so you can be informed."
"Thanks."
And that is how this average day turned into my worst nightmare.
When Lily was about two months old, I started to notice that when she would wake from naps, her eyes would roll up and then to the left, over and over again. The first time I saw it, I started to cry, I thought I was going to vomit, and I cried out "Oh, God what is happening?" My husband assured me that it was probably okay. For the next four months I took her to the doctor about 6 times for well baby visits and each time I mentioned her eyes rolling. Each time two different pediatricians said that babies do strange stuff with their eyes and it was probably okay. It wasn't okay.
When she was 6 months old I finally ran into an emergency room-Lily and I screaming. They took her immediately into CT scan and found out that she had had a massive stroke. The next day, an EEG showed that Lily was seizing every 15 minutes and had a devastating brain pattern called hyppsrythmia. We went through a dozen drugs an then, when she was 9 months old Dr.s in New Mexico decided that Lily required "heroic measures". Lily was one seizure or one cold away from death's door. We traveled to the Cleveland Clinic in Cleveland, OH and on April 14, 2008, surgeons removed the right half of her brain. She has been seizure free since then.
I learned the hard way in Cleveland that giving up half a brain is no guarantee that the seizures are done. Some people have the hemispherectomy and continue to have catastrophic seizures. I met a boy who had a hemispherectomy and continued to seize but about 1/2 as much as before which isn't saying much. You see, catastrophic epilepsy is classed at 10 or more seizures a day. After his surgery, he was down to 50 seizures. My friend Monica from the Hemispherectomy Foundation has seen her little guy through several more brain surgeries and it just seems like a few months later, the seizures just keep coming back. I think, after facing the real possibility of our children dying before the surgeries, each hemi mom's greatest fear is that the seizures come back. Every spacey look, every tumble, every twitch comes with an instant panic-"was that a seizure?"
So what is at stake? Prince had epilepsy and he grew out of having seizures. Dostoyevsky had seizures and look what he did. And I say-My Baby is what is at stake. It is built into each of us to protect our offspring. When Lily was actively seizing I had visions of jumping off of high bridges or driving off of the highway flyover just to get some relief from the panic and the pain. I wanted to break everything I owned. That overwhelming feeling of powerlessness and sheer terror. I feel that terror right now but I am writing it out in between making an appointment to take Lily to see her pediatrician, arranging childcare for my younger daughter, emailing my professors to let them know I probably won't be in class tonight, and praying " Please God, Not a Seizure".
"Yes, is this Lily's Mom?"
"Yes."
"This is Maybeth from the School for the Blind. Lily is okay. We just wanted to let you know that during her music class, Lily was playing the auto harp- high energy as usual-and then she stopped suddenly. The left side of her body went flaccid and she stared into space for 3-4 seconds. We think she may have had a seizure."
"How is she now?"
"She seemed to come right back out of it but just wanted to let you know so you can be informed."
"Thanks."
And that is how this average day turned into my worst nightmare.
When Lily was about two months old, I started to notice that when she would wake from naps, her eyes would roll up and then to the left, over and over again. The first time I saw it, I started to cry, I thought I was going to vomit, and I cried out "Oh, God what is happening?" My husband assured me that it was probably okay. For the next four months I took her to the doctor about 6 times for well baby visits and each time I mentioned her eyes rolling. Each time two different pediatricians said that babies do strange stuff with their eyes and it was probably okay. It wasn't okay.
When she was 6 months old I finally ran into an emergency room-Lily and I screaming. They took her immediately into CT scan and found out that she had had a massive stroke. The next day, an EEG showed that Lily was seizing every 15 minutes and had a devastating brain pattern called hyppsrythmia. We went through a dozen drugs an then, when she was 9 months old Dr.s in New Mexico decided that Lily required "heroic measures". Lily was one seizure or one cold away from death's door. We traveled to the Cleveland Clinic in Cleveland, OH and on April 14, 2008, surgeons removed the right half of her brain. She has been seizure free since then.
I learned the hard way in Cleveland that giving up half a brain is no guarantee that the seizures are done. Some people have the hemispherectomy and continue to have catastrophic seizures. I met a boy who had a hemispherectomy and continued to seize but about 1/2 as much as before which isn't saying much. You see, catastrophic epilepsy is classed at 10 or more seizures a day. After his surgery, he was down to 50 seizures. My friend Monica from the Hemispherectomy Foundation has seen her little guy through several more brain surgeries and it just seems like a few months later, the seizures just keep coming back. I think, after facing the real possibility of our children dying before the surgeries, each hemi mom's greatest fear is that the seizures come back. Every spacey look, every tumble, every twitch comes with an instant panic-"was that a seizure?"
So what is at stake? Prince had epilepsy and he grew out of having seizures. Dostoyevsky had seizures and look what he did. And I say-My Baby is what is at stake. It is built into each of us to protect our offspring. When Lily was actively seizing I had visions of jumping off of high bridges or driving off of the highway flyover just to get some relief from the panic and the pain. I wanted to break everything I owned. That overwhelming feeling of powerlessness and sheer terror. I feel that terror right now but I am writing it out in between making an appointment to take Lily to see her pediatrician, arranging childcare for my younger daughter, emailing my professors to let them know I probably won't be in class tonight, and praying " Please God, Not a Seizure".
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