This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
Today's post is written by my friend, Kris. Her daughter, Mary, is shown above. Kris has become a wonderful friend and true confidante and her story is very familiar to Beth and me. You'll see why when you read her post.
My name is Kris. I became friends with Steph because we both share a love for digital scrapbooking. We have continued our friendship onto Facebook. Unfortunately we share another common bond and that is both of our daughters have Epilepsy.
My oldest daughter Mary was diagnosed with Absence Seizures 4 years ago when she was 12 years old and in 6th grade. My first memory of Mary having an Absence Seizure was when Mary had a choir concert and needed a white top and black skirt for the event. I was on my knees in the dressing room trying to help her get the skirt on. I held the skirt out waiting for her to step into it. I kept repeating “Ok Mary, step into the skirt. I’m waiting.” I looked up to her spacing out. From then on I kept noticing these moments of blank stares that lasted 3 to 5 seconds. I would say Mary’s name, snap my fingers or shake her arm to get her attention but those things would never get her out of her trance. I had to wait until Mary would come out of it by herself. I had mentioned to a friend of Mary’s episodes. I will never forget my friends words, “Kris, those are Petite Mal Seizures. Make an appointment immediately with her Pediatrician and get an EEG.” Thank goodness for my friend. I called our Pediatrician who called Cincinnati Children’s Hospital and arranged for an EEG. It was over Christmas break. Mary had an EEG and we were told it might take a week before we would get the results. A lot of people that worked there were on a Holiday Break. No sooner did we get home, a phone call from a Dr. at the hospital confirmed Mary indeed had seizure activity. Later in the week, we went back to Children’s Hospital to determine a course of action. Life hasn’t been the same since.
Mary has gone through a series of medicines. Some with good results but inevitably the Absence Seizures would rear its ugly head and creep up again to let us know it was still present. We finally found one drug known as Keppra that kept her seizure free for 2 years. With Absence Seizures it shows in adolescence and puberty kicks it up a notch. A lot of kids grow out of it. In August of 2013 Mary was allowed to begin the weaning process off the Keppra. If she did not have a seizure after 5 months of being off of Keppra Mary would be declared seizure free. On January 4, 2014 we were up early for a College Softball Recruiting Camp at Kent State. Prospective College Coaches gather to study and possibly recruit high school softball players. Mary is a pitcher for her High School and also a travel softball team. Her goal has been to play College Softball. It was that morning my husband David and I noticed an Absence Seizure. Mary was to begin to take the field and she blanked out. We stood there with astonishment. We couldn’t believe what we just witnessed. We said nothing to her and she ran onto the field. I grasped David’s arm, heads shaking no, and eyes filling up with tears and a look of “Did you just see what I saw” but not speaking those words. We sat on the bench behind her station with a huge smile and a nod of approval. Cheering her on the best we could. When inside our hearts were broken. Just two, yes TWO days shy of being declared fully seizure free. A phone call to the Dr. that Monday morning and Mary begins taking Keppra again.
Almost a month later on the night of her Sweet 16 Birthday party, Mary had a few friends to celebrate and sleep over. At 2:16 am my youngest daughter Annie woke us with hysterical crying and screaming. Annie was shaking violently saying “Mary’s having a seizure!” We jumped from the bed and ran to Mary’s side to witness an awful sight. Mary was having her first Grand Mal seizure. Mass confusion and hysteria were all I can recall. As for Mary, she didn’t remember a thing.
Since February Mary has had about 9 more Grand Mal Seizures. Almost one a month. Each seizure has been in the evening when we are all at home. My husband, Annie and I make a good team. Annie is the keeper of time. David rushes to Mary and tries to keep her safe. I go back and forth between Mary and Annie making sure each one is doing ok. Grand Mal Seizures are very difficult to witness. As our Neurological Psychologist mentioned to us when individuals see a Grand Mal Seizure people either “fight or flight”. Annie chooses flight. I can’t blame her. After Mary is secure with my husband, I go to check on Annie who’s gone to another room. Her anxiety level is high. We have an app that we use to concentrate and control our breathing. Once Annie has settled down, I step back in to see how Mary is doing. I continue going from room to room until the situation appears to be under control. It’s not easy to be a Mom. It’s not easy to be so strong.
Mary’s newest seizure activity has affected her life in several ways. Mary cannot get her drivers license. She has had difficulty learning at school and requires a 504 plan. And her seizures have affected her ability to play softball. Being an athlete and having Epilepsy has put her at risk. Even more so that she is a pitcher. Whenever she has had a Grand Mal Seizure during softball season, Mary has to sit out 4-7 days and not play. A Grand Mal Seizure makes a person feel like they’ve ran a Marathon. Their legs are heavy. Days after her focus is limited so Mary has a tough time tracking the ball. And after a seizure, the doctors always do an adjustment with her medicines. We have to wait and see how Mary reacts to those adjustments. In school ball her team can play up to 4 games in a week. So that is a lot of time away from the sport. We do not only encourage Mary to continue to play softball but her doctors back her fully. Being active is good. We try to keep life as normal as possible. Though Epilepsy is our foe, life doesn’t stop. I am always on call. Always guarded. Always prepared for another battle. But hey Epilepsy, can we call a truce?
~ On a personal note. Thanks to Steph and Beth for asking and encouraging us to write for this special series. It’s not easy putting these words on paper. But Mary and I have so enjoyed all that Steph and Beth have shared. Helping others understand epilepsy is key in overcoming the stigmas associated with epilepsy.
*If you'd like to read all of our 31 Days posts about living with epilepsy, click on the button on the sidebar or start here. And if you're wondering what the heck is going on and who Beth is, click here. :)