Purple Cape
Once upon a time there was a little girl named London..
She was brave, bright, and had an imagination that could keep even God, entertained. She had vivid blue eyes...a cheery smile...and a comforting touch. London was a wonderful baby who had chubby cheeks and enjoyed swinging in her swing...When she was 1 year old, she discovered a love for dance... She could pick out any rhythm and memorized songs..she stopped instantly when she heard music and began to bounce. London also loved Mickey Mouse and singing the hot-dog song... her first trip to see Mickey Mouse at Disney World was something her parents would never forget... The joy that Mickey brought to her face...was the same joy London brought to her parent's face... That Spring after going to Disney...London started getting so sleepy at night that her eyes would cross before she drifted off to sleep. One day while with the babysitter, London's Aunt Sissy, London went unconscious and her eyes rolled into her head. This was the first day of London's journey with Epilepsy.
Frantic, we took London to the emergency room which referred her to Cincinnati Children's Hospital. After an MRI, 2 EEGs, and a short hospital stay our fears were confirmed and London had been diagnosed with Childhood Absence Epilepsy. She had been considered early onset at 2.5 years which was unusually early..It is OK we thought... the diagnosis could have been much worse...We can do this.
We are 3 years into Epilepsy and we still have no cure... London's Epilepsy is intractable... that's a big word for "nothing stops it." We have tried almost every medicine on the market. We are 5 weeks into a new Ketogenic diet with great results... we won't know for a while whether or not we will ever be seizure free...but we are hopeful.
We wonder why Epilepsy chose us.. Is it just a destined path because London was strong enough to take the bullet for another child whose body was not able to have the Epilepsy and thrive? Is it because God was teaching us patience and love in a way that we did not see in the beginning?
We may never know.
We were blessed with a normal baby girl for 3 years... and NOW she is a superhero.. She wears a purple cape ...the color of Epilepsy awareness... she is a hero for sure. Without medication London can have 20-50 seizures a day. With medication it has been as low as 10 seizures a week but it never lasted. It could also be as high as 20-30 seizures a day. We are at about 5 seizures a day currently. That's a great success! We eat lots of fat! Butter... sour cream... heavy cream...mayonnaise!
The epilepsy creates a lot of challenges at home, at school, at church, and in public but we have mastered the art of catch and release to prevent falls and injuries! There are a ton of worries. will she zombie walk into traffic? Fall off the jungle gym?
She loves soccer, but cant play because of the risk of getting kicked in the face while she is in a seizure.
For now we will embrace the butterfly who flies around the living room. We will pretend to be the evil Step Mother for Cinderella who is almost too late for the ball. We will sing "Let it Go" again... and again..and again.
Epilepsy can't stop us. We have Christ on our side.
She was brave, bright, and had an imagination that could keep even God, entertained. She had vivid blue eyes...a cheery smile...and a comforting touch. London was a wonderful baby who had chubby cheeks and enjoyed swinging in her swing...When she was 1 year old, she discovered a love for dance... She could pick out any rhythm and memorized songs..she stopped instantly when she heard music and began to bounce. London also loved Mickey Mouse and singing the hot-dog song... her first trip to see Mickey Mouse at Disney World was something her parents would never forget... The joy that Mickey brought to her face...was the same joy London brought to her parent's face... That Spring after going to Disney...London started getting so sleepy at night that her eyes would cross before she drifted off to sleep. One day while with the babysitter, London's Aunt Sissy, London went unconscious and her eyes rolled into her head. This was the first day of London's journey with Epilepsy.
Frantic, we took London to the emergency room which referred her to Cincinnati Children's Hospital. After an MRI, 2 EEGs, and a short hospital stay our fears were confirmed and London had been diagnosed with Childhood Absence Epilepsy. She had been considered early onset at 2.5 years which was unusually early..It is OK we thought... the diagnosis could have been much worse...We can do this.
We are 3 years into Epilepsy and we still have no cure... London's Epilepsy is intractable... that's a big word for "nothing stops it." We have tried almost every medicine on the market. We are 5 weeks into a new Ketogenic diet with great results... we won't know for a while whether or not we will ever be seizure free...but we are hopeful.
We wonder why Epilepsy chose us.. Is it just a destined path because London was strong enough to take the bullet for another child whose body was not able to have the Epilepsy and thrive? Is it because God was teaching us patience and love in a way that we did not see in the beginning?
We may never know.
We were blessed with a normal baby girl for 3 years... and NOW she is a superhero.. She wears a purple cape ...the color of Epilepsy awareness... she is a hero for sure. Without medication London can have 20-50 seizures a day. With medication it has been as low as 10 seizures a week but it never lasted. It could also be as high as 20-30 seizures a day. We are at about 5 seizures a day currently. That's a great success! We eat lots of fat! Butter... sour cream... heavy cream...mayonnaise!
The epilepsy creates a lot of challenges at home, at school, at church, and in public but we have mastered the art of catch and release to prevent falls and injuries! There are a ton of worries. will she zombie walk into traffic? Fall off the jungle gym?
She loves soccer, but cant play because of the risk of getting kicked in the face while she is in a seizure.
For now we will embrace the butterfly who flies around the living room. We will pretend to be the evil Step Mother for Cinderella who is almost too late for the ball. We will sing "Let it Go" again... and again..and again.
Epilepsy can't stop us. We have Christ on our side.
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