My Grandmother always had what we called a ‘feisty personality’. She would utter the first words that came to her mind, no matter how brutal, and it usually gave us quite a laugh. When I was in labor with Hayden in October 2005, my brother, sister-in-law, mother and Grandma Mary flew to Baltimore to await the arrival of what was her very first great-grandchild. Never mind the delicacy and seriousness of my labor (I was having seizures on the table, and labor was painfully long until they rolled me into the OR to perform a c-section). She looked at my Mom, (her daughter) and said, “When will this end? I have never been so bored in my entire life!”

That was Grandma. My Grandma. And yesterday morning at 8:20 am, the world lost this ‘pistol’ of a lady at 97 years old. She had struggled with dementia for a year, a condition that was advanced by the pneumonia that captured her body this past September. In the final months, she rarely uttered a single word, sometimes didn’t open her eyes for days and her extraordinary taste in food was diminished. Baby food, scambled eggs and mashed potatoes were really all she could eat.

Hayden, Grandma and I...a few months after my last surgeries

 My family is amazingly tiny, one of the reasons why my Grandma was a huge part of our lives. This was a woman who worked until she was in her late 70′s, running her own successful business with my Grandpa, who died 20 years ago. She was so generous to my brother and me and our own families, with her time and her possessions, but what I will remember most about my relationship with her these last 7 or 8 years, is her concern and her depth of acceptance when it came to my Epilepsy.

One of my favorites...Hayden at 10 months with her GG

Those of us who live with this disease know that many people who populate our lives refuse to understand and accept our lives with Epilepsy. It can be a very ugly disease and it’s easier for them to shut us out. I have learned to live with that. But my Grandma, despite her toughness, had a remarkable capacity for understanding Epilepsy…my Epilepsy. She was involved (as involved as she could be in her 90′s) with my 5 surgeries. She asked me question after question about my health, from whether or not I could have passed my Epilepsy on to Hayden, to which medication I was on and how it was working. We had so many discussions about my seizures, in person and over the phone when I spoke to her daily.

When I had my Vagus Nerve Stimulator (VNS) implanted a year ago after my 2nd try at surgery failed, I can remember seeing her when I was released from the hospital. My head was bandaged, bald under the layers of dressings, and I was highly medicated. She held that magnet in her hand and stared at it, turning it over andover in her delicate hands for what seemed like an eternity, as I carefully explained to her how the device would work. She was probably more hopeful than even my husband, my Mom and I, that my seizures would be reduced and perhaps erased by this device that had now become part of my body. As tough as she was, I truly believe my illness kept her awake at night with worry.

 I know she would be proud of me and it would bring a rare smile to her face, if she knew of my advocacy work during these last few months and if I could have told her about all of the friends I have made through this site. No, she did not have Epilepsy, but like so many of us, it became part of her life because of my closeness to her. Her speeches to me to “Make sure you are taking your medicine, I want you to get better,” will echo in my head for perhaps years to come.

Even though we knew her passing was imminent, it’s still so hard to accept. I am thankful that we had so many years together, and even more thankful that Hayden had something so rare for young children, a great-grandmother. I will miss you Grandma…and I thank you for all of the wonderful memories.