Hi there, y'all. Wanted to introduce myself. My name is Inez, and I am a mother. That's why I am here.
I don't like to label my daughter as deaf, it just seems so weird saying, "I have a deaf kid." I don't run around saying "I have blonde kids and brunette kids." so why would I bother with that label? It just doesn't make sense to me. But the fact remains, and sometimes it is appropriate to inform others, my daughter is deaf. She was born with a bilateral sensineural hearing loss, and diagnosed as profoundly deaf at 11 months old when she had her first seizure.
There have been lots of strange and strengthening moments as a hearing parent of a deaf child, but not as much as being the mother of a child with epilepsy and neurological challenges. I am so glad that at almost 10 years old, she is FINALLY growing out of her seizures! This comes as such a relief because this kid didn't do anything unless she MEANT it, and seizures were no different. For years in her toddlerhood, every month like clockwork, we would spend at least 1 full week hospitalized, recovering from a Gran Mal full body tonic clonic seizures. For my little girl, her seizures were so intense she died several times. There is nothing more gut wrenching and painful in this world than watching your child die and feeling helpless to save them. Obviously, and thankfully, they've managed to revive her and bring her back to me every time, but i know from my own personal life experiences that moments like that change you, forever. My little Lizzie is the strongest person I've ever met, as well as the first hearing impaired person I've met. I've been told several times by neurologists that my child shouldn't be surviving these seizures, that they were seizures you would expect to do serious brain damage if not be totally fatal, to an adult. We're talking full on seizures that last over hours. We developed a first name relationship with many of the paramedics and 1st responders in our town. :\ Bittersweet....
Anyway, that's my story. She's done seizing, she's done cochlearing, and we're just hanging out enjoying the silence. When it exists.
(Deaf kids ARE LOUD! ha...I'm sorry if that offends, but this was one thing I did NOT expect lol...)
I don't like to label my daughter as deaf, it just seems so weird saying, "I have a deaf kid." I don't run around saying "I have blonde kids and brunette kids." so why would I bother with that label? It just doesn't make sense to me. But the fact remains, and sometimes it is appropriate to inform others, my daughter is deaf. She was born with a bilateral sensineural hearing loss, and diagnosed as profoundly deaf at 11 months old when she had her first seizure.
There have been lots of strange and strengthening moments as a hearing parent of a deaf child, but not as much as being the mother of a child with epilepsy and neurological challenges. I am so glad that at almost 10 years old, she is FINALLY growing out of her seizures! This comes as such a relief because this kid didn't do anything unless she MEANT it, and seizures were no different. For years in her toddlerhood, every month like clockwork, we would spend at least 1 full week hospitalized, recovering from a Gran Mal full body tonic clonic seizures. For my little girl, her seizures were so intense she died several times. There is nothing more gut wrenching and painful in this world than watching your child die and feeling helpless to save them. Obviously, and thankfully, they've managed to revive her and bring her back to me every time, but i know from my own personal life experiences that moments like that change you, forever. My little Lizzie is the strongest person I've ever met, as well as the first hearing impaired person I've met. I've been told several times by neurologists that my child shouldn't be surviving these seizures, that they were seizures you would expect to do serious brain damage if not be totally fatal, to an adult. We're talking full on seizures that last over hours. We developed a first name relationship with many of the paramedics and 1st responders in our town. :\ Bittersweet....
Anyway, that's my story. She's done seizing, she's done cochlearing, and we're just hanging out enjoying the silence. When it exists.
(Deaf kids ARE LOUD! ha...I'm sorry if that offends, but this was one thing I did NOT expect lol...)
that was a heartwrenching store about your Lizzie. What a relief that she is doing better re the seizures, hope they never return.
