Do Not Stand

Do not stand at my grave and weep,
I am not there, I do not sleep,
I am a thousand winds that blow,
I am the diamond gifts of snow.

I am the sunlight on ripened grain,
I am the Autumn's gentle rain,
When you waken in the morning's hush,
I am the swift uplifting rush.

Of quiet birds in circled light,
I am the soft stars that shine at night,
Do not stand at my grave and cry,
I am not there, I did not die.

 

 

The beautiful young woman above is Emily. Emily is forever nineteen years old. Emily is my sister's only daughter and was the light of my sister's life. She is two year old Aryanna's Mommy. She is her father's baby. She is my niece. She was a sister, sister in law, an aunt, and a cousin to many. Her extended family was large.

Emily inherited a family disease. This disease is epilepsy. She developed epilepsy at an early age and it was so severe that she had to miss out on so many things that young people take for granted in their lives. She couldn't go to school and graduate with her peers, she never attended a prom, nor did she get to have the wedding every girl dreams of. She will never get to see her beloved Aryanna grow up.

Emily had been taken to the best of doctors. Her parents did everything possible to get her well. She had all the treatments you could possibly get for her type of epilepsy. Her seizures remained uncontrolled. But Emily was a trooper. She lived every day to the fullest; doing the best that she could, and took care of her beautiful baby, Aryanna.

On March 7, 2012, Emily died quite unexpectedly, in her bed from SUDEP. She passed away with her baby by her side. She was laid to rest on March 12, 2012 in Houston, Texas, where she grew up. Many mourned her loss. She is God's most beautiful angel now and for eternity.

Her death was a total shock and a wake-up call for many. With Emily's story, her legacy will forever live on, and hopefully make people realize that epilepsy can be a serious disease. It is not always the benign illness that doctors and even the government scoff at for being non-severe. Epilepsy is life-threatening. For many, it can be controlled with medications, but for many of us who suffer from it, the seizures cannot be controlled and SUDEP is a possible fate that many of us are not warned about. Had we known, had it been better understood, had it been researched, this beautiful nineteen year old girl might be with us today and her mother's heart not broken into a million pieces.

What is SUDEP? SUDEP means "sudden unexplained death in epilepsy". I was diagnosed with epilepsy in 1996 and had never even heard of SUDEP. The usual warnings were given about the dangers, such as injury from falling, or aspiration due to the vomiting that happens to many during or after a seizure. Why are so many never made aware of SUDEP?

Most people can live a normal life span with epilepsy. Most work and have a relatively normal life with their seizures controlled by medications or treatments. SUDEP is not well understood. It is suspected to sometimes be related to heart rhythm problems during a seizure. SUDEP occurs more often among people with convulsive seizures, especially generalized tonic-clonic seizures that are not well controlled. More research is needed to fully understand what causes SUDEP. A link to the Epilepsy Foundation can be found below. Click the purple ribbon. Become aware!

Please sign Emily's sympathy book. Our family appreciates your thoughts and prayers.

Rest in peace, dear Emily. Someday we will all be together again.

 

March 2012
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