12-02-2008, 01:56 AM
My 48 year old brother is dying. He's been handicapped since he was born, but it didn't get obvious until he was three- he's a year younger than me. I have a childhood memory of this adorable toddler with a tight cap of golden curls. He used to follow me around and we would play all day long together. He was the most awesomest little brother. He's my only brother- we have four sisters.
Severe epilepsy, cerebral palsy, learning disabilities, scoliosis. My parents took it all in stride, and so did we. We took care of him, taught him how to walk and talk a couple of times (he would forget after severe epileptic episodes). We learned to call the emergency rooms in the area to see who was less busy after he had seizures and fell. We learned to be patient with him. I learned to tell him jokes at just right time- when he had a mouthful of food or drink, and to time the punchline so the spit-take would spray one of my annoying little sisters.
For years my mother was told by a varying array of doctors - "Put him in an institution, he'll die before he is X". X kept changing, but it was always 5 years from then. My mother's stubborn optimism and boundless hope kept my brother alive his whole life. She pushed, she prodded, and hoped. Always hoped.
But he's past hope. He cannot swallow, and he's not getting that back. He's pretty much out of it- to tired and almost comatose to crack a joke or get up a smile. And he doesn't want any more procedures. Mom asked him, and he shook his head. We had a family meeting / teleconference with us all- my one sister and I via cell phone and iChat, cause we're the out of towners.
And we all decided to let him go. I'll drive down to sit with him for a few days soon. And say good bye, love you, thank you for being my little brother, and I'll see you (I hope) someday.
And I'll tell you jokes so you can spit spaghetti at my annoying sister.
Severe epilepsy, cerebral palsy, learning disabilities, scoliosis. My parents took it all in stride, and so did we. We took care of him, taught him how to walk and talk a couple of times (he would forget after severe epileptic episodes). We learned to call the emergency rooms in the area to see who was less busy after he had seizures and fell. We learned to be patient with him. I learned to tell him jokes at just right time- when he had a mouthful of food or drink, and to time the punchline so the spit-take would spray one of my annoying little sisters.
For years my mother was told by a varying array of doctors - "Put him in an institution, he'll die before he is X". X kept changing, but it was always 5 years from then. My mother's stubborn optimism and boundless hope kept my brother alive his whole life. She pushed, she prodded, and hoped. Always hoped.
But he's past hope. He cannot swallow, and he's not getting that back. He's pretty much out of it- to tired and almost comatose to crack a joke or get up a smile. And he doesn't want any more procedures. Mom asked him, and he shook his head. We had a family meeting / teleconference with us all- my one sister and I via cell phone and iChat, cause we're the out of towners.
And we all decided to let him go. I'll drive down to sit with him for a few days soon. And say good bye, love you, thank you for being my little brother, and I'll see you (I hope) someday.
And I'll tell you jokes so you can spit spaghetti at my annoying sister.
