Katherine was thirty one years old when she died of SUDEP on November 13th, 2011. My introduction to SUDEP was short and shocking.
It was a Sunday morning and Katherine hadn’t come to pick up Daisy, her beloved King Charles spaniel to take him to Dog School. The units where Katherine lived didn’t allow dogs, so Daisy stayed with me. Katherine would always pick up Daisy very early, at the same time each week, and take Daisy to the local dog club. Katherine enjoyed the camaraderie of other dog lovers and their dogs. Daisy was less than obedient, but Katherine was persistent and determined. Hence the routine that became a ritual and one that Katherine loved very much. I will never be sure whether it was reciprocated by Daisy, tolerated to say the least.
I had rung and left messages with Katherine but there was no answer so I decided to walk to her unit around the corner. I remember approaching her front door that morning, her car still in the driveway and the outside light still on. This was strange. I rang the bell. No answer. I remember sensing something was very wrong. I had a key so I let myself in. And there was Katherine, face down and dead on her lounge room floor. I had never heard of SUDEP before. But like a thief in the night, it stole my daughter from my life.
I am left with the irreplaceable, cherished memories that I hold close to my heart. I am so very proud of her. Katherine had more to deal with than most in her shortened life. She lived with uncontrolled epilepsy on and off since she was ten months old; Katherine had a temporal lobectomy when she was nine; she had a slight intellectual disability; and she was diagnosed with Asperger syndrome when she was fifteen years old.
Despite all of this, Katherine was determined to make sense of the world and be the best that she could be. Fortunately, her epilepsy had become controlled with medication. She had not had a seizure for six years. Katherine had a job, drove a car, went to the gym, attended dog school, played ten pin bowls, attended mainstream TAFE, and had friends. She was highly intelligent in so many ways and thrived on responsibility and encouragement.
Katherine blossomed into a beautiful, confident, independent person. She loved, she laughed, and she lived.
I am blessed that Katherine was my daughter.
Global Conversation 2014